Re: IChecking in with tons of questions

March 7, 2009

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Caro

I'm so glad you're going to a doctor at UAB. Dr. deAndrade at least

shows a sense of urgency. If there is any way you can repeat your

colposcopy with a UAB doctor rather than in or locally it would

be great. I would definitely look for someone new versus your current

gyn. That kind of attitude is unacceptable. While Dr. deAndrade didn't

feel comfortable I'm sure recommending you see one there since you

already had a gyn, if you requested a referral I bet he would oblige.

>

> Hi all,

>

> Well the last 2 weeks have been some good news and some not so good

news. I got the biopsy report back from the colposcopy. It showed

mature squamous epithelial cells - recommend repeat in 6 months. Okay.

The gyne said no cancer BUT she wants me to go to to see a

gyn/oncologist to have the repeat colpo " just to be sure and safe. " So

I get appontment scheduled for mid July. Meantime, I am thinking, okay,

I can deal with this. That was last Friday. I went to University of

Alabama at Birmingham on Tuesday for my routine checkup. He asked how

the Sjogrens was and I told him worse. The dry mouth is so bad I get

choked often and the dry eyes are horrible even with the eyedrops. He

asked me if I had seen a rheumatologist yet. I told him no, so he is

probably going to refer me to one when I go back in July. Then he tells

me " remember when I told you that because you are so young, I thought

there may be an

> underlying autoimmune disease? " Well, I said yes, and then he said my

blood work came back positive for polymyositis and dermatomyositis, as

well as the Sjogren's. I told him I have been having lots of problems

with the stairs getting more short of breath. He thinks that is from

the polymyositis/dermatomyositis rather than my lungs, as my PFTs were

actually better than they were in June 2008. He thinks the Imuran is

helping improve the lung function. He did tell me they are going to

maybe try and wean me off the prednisone to help get my weight down. I

weighed 155 and at 4 feet 11 inches, he thinks that is too much and is

adding to the shortness of breath (and I TOTALLY agree). If that wasn't

enough, he said I have a positive Jo-1 antibody. I was debating whether

or not to tell him about the OB-GYN visit or not since it did not

involve my lungs, but turns out, I am glad I did. He said the positive

blood tests I have makes him

> believe there is an underlying cancer. He told me to call my GYNE and

get them to schedule me ASAP, " like tomorrow. " I called the gyne when I

got back and the nurse told me " I AM IN THE MIDDLE HERE. I HAVE TO DO

WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK

AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL

JULY. " OMG!!!! I was fuming!! I am thinking, lady, you are not in the

middle at all. I am the one who has cancer and no one knows where it

is!! I called Birmingham back and Dr. deAndrade said he was going to

fax a letter to the gyn/oncology doc stating that I needed to be seen

sooner than July. I haven't heard anything back yet, but that was

yesterday, so with it being the weekend, I figured I wouldn't hear

anything before next week anyway. Dr. deAndrade said if it turns out

the gyne/oncology workup is benign (he recommended I go ahead and have

the ovaries removed so I won't have

> to worry about it), then they are going to bring me back and scan me

from head to toe to try and find where the cancer is. Meantime, I am

impatiently waiting. I haven't cried yet, though. Can't believe it,

but so far I haven't. I can only imagine whenever I do it will surely

be a flood -- hey to quote Timberlake " cry me a river!! " He

did some more blood work, liver tests, and added a CK and aldolase to

check for muscle damage. He said the 2 new autoimmune diseases will

most likely cause muscle damage and my muscles will slowly but surely

deteriorate. So that is all I know. I know some of you here have these

2 autoimmune diseases, so any info on what to expect would be greatly

appreciated. I did a little research but not a lot. Oh yeah, this same

gyne I have been going to, when I asked her for some Xanax for my

nerves, told me " I don't feel comfortable giving that drug to you, it is

addictive. " You should get it from

> your family doctor. I almost laughed!! I am like, lady, I take 15

medications a day!! How much more addicted can I get!!

>

> Wow what a week.

>

> I hope you all are having a great weekend. I am trying to catch up on

emails and see how everyone is doing. Thank you all for letting me

VENT!! vent Caro

> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09

> Mississippi

>

March 7, 2009

I think so, too, Bruce. If I don't hear anything by the end of next week, that is exactly what I am going to do. I just love him to death. They are so good there. I would recommend to anyone with this disease highly going to a center of excellence because they are so good at finding things that my doctors here never even considered. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Saturday, March 7, 2009 8:10:12 PMSubject: Re: IChecking in with tons of questions

CaroI'm so glad you're going to a doctor at UAB. Dr. deAndrade at leastshows a sense of urgency. If there is any way you can repeat yourcolposcopy with a UAB doctor rather than in or locally it wouldbe great. I would definitely look for someone new versus your currentgyn. That kind of attitude is unacceptable. While Dr. deAndrade didn'tfeel comfortable I'm sure recommending you see one there since youalready had a gyn, if you requested a referral I bet he would oblige.>> Hi all,>> Well the last 2 weeks have been some good news and some not so goodnews. I got the biopsy report back from the colposcopy. It showedmature squamous epithelial cells -

recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see agyn/oncologist to have the repeat colpo "just to be sure and safe." SoI get appontment scheduled for mid July. Meantime, I am thinking, okay,I can deal with this. That was last Friday. I went to University ofAlabama at Birmingham on Tuesday for my routine checkup. He asked howthe Sjogrens was and I told him worse. The dry mouth is so bad I getchoked often and the dry eyes are horrible even with the eyedrops. Heasked me if I had seen a rheumatologist yet. I told him no, so he isprobably going to refer me to one when I go back in July. Then he tellsme "remember when I told you that because you are so young, I thoughtthere may be an> underlying autoimmune disease?" Well, I said yes, and then he said myblood work came back positive for polymyositis and dermatomyositis, aswell as the Sjogren's. I

told him I have been having lots of problemswith the stairs getting more short of breath. He thinks that is fromthe polymyositis/ dermatomyositis rather than my lungs, as my PFTs wereactually better than they were in June 2008. He thinks the Imuran ishelping improve the lung function. He did tell me they are going tomaybe try and wean me off the prednisone to help get my weight down. Iweighed 155 and at 4 feet 11 inches, he thinks that is too much and isadding to the shortness of breath (and I TOTALLY agree). If that wasn'tenough, he said I have a positive Jo-1 antibody. I was debating whetheror not to tell him about the OB-GYN visit or not since it did notinvolve my lungs, but turns out, I am glad I did. He said the positiveblood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE andget them to schedule me ASAP, "like tomorrow." I called the gyne when Igot

back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DOWHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACKAND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTILJULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in themiddle at all. I am the one who has cancer and no one knows where itis!! I called Birmingham back and Dr. deAndrade said he was going tofax a letter to the gyn/oncology doc stating that I needed to be seensooner than July. I haven't heard anything back yet, but that wasyesterday, so with it being the weekend, I figured I wouldn't hearanything before next week anyway. Dr. deAndrade said if it turns outthe gyne/oncology workup is benign (he recommended I go ahead and havethe ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan mefrom head to toe to try and find where the cancer is.

Meantime, I amimpatiently waiting. I haven't cried yet, though. Can't believe it,but so far I haven't. I can only imagine whenever I do it will surelybe a flood -- hey to quote Timberlake "cry me a river!!" Hedid some more blood work, liver tests, and added a CK and aldolase tocheck for muscle damage. He said the 2 new autoimmune diseases willmost likely cause muscle damage and my muscles will slowly but surelydeteriorate. So that is all I know. I know some of you here have these2 autoimmune diseases, so any info on what to expect would be greatlyappreciated. I did a little research but not a lot. Oh yeah, this samegyne I have been going to, when I asked her for some Xanax for mynerves, told me "I don't feel comfortable giving that drug to you, it isaddictive." You should get it from> your family doctor. I almost laughed!! I am like, lady, I take 15medications a day!! How much more

addicted can I get!!>> Wow what a week.>> I hope you all are having a great weekend. I am trying to catch up onemails and see how everyone is doing. Thank you all for letting meVENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

March 7, 2009

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for

muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Caro

I'm also a bit shocked to read all this and see no mention of an

oncologist. Dont' let doctors trying to show professional courtesy

toward other doctors delay your evaluation and treatment.

> >

> > Hi all,

> >

> > Well the last 2 weeks have been some good news and some not so good

> news. I got the biopsy report back from the colposcopy. It showed

> mature squamous epithelial cells - recommend repeat in 6 months. Okay.

> The gyne said no cancer BUT she wants me to go to to see a

> gyn/oncologist to have the repeat colpo " just to be sure and safe. " So

> I get appontment scheduled for mid July. Meantime, I am thinking,

okay,

> I can deal with this. That was last Friday. I went to University of

> Alabama at Birmingham on Tuesday for my routine checkup. He asked how

> the Sjogrens was and I told him worse. The dry mouth is so bad I get

> choked often and the dry eyes are horrible even with the eyedrops. He

> asked me if I had seen a rheumatologist yet. I told him no, so he is

> probably going to refer me to one when I go back in July. Then he

tells

> me " remember when I told you that because you are so young, I thought

> there may be an

> > underlying autoimmune disease? " Well, I said yes, and then he said

my

> blood work came back positive for polymyositis and dermatomyositis, as

> well as the Sjogren's. I told him I have been having lots of problems

> with the stairs getting more short of breath. He thinks that is from

> the polymyositis/ dermatomyositis rather than my lungs, as my PFTs

were

> actually better than they were in June 2008. He thinks the Imuran is

> helping improve the lung function. He did tell me they are going to

> maybe try and wean me off the prednisone to help get my weight down. I

> weighed 155 and at 4 feet 11 inches, he thinks that is too much and is

> adding to the shortness of breath (and I TOTALLY agree). If that

wasn't

> enough, he said I have a positive Jo-1 antibody. I was debating

whether

> or not to tell him about the OB-GYN visit or not since it did not

> involve my lungs, but turns out, I am glad I did. He said the positive

> blood tests I have makes him

> > believe there is an underlying cancer. He told me to call my GYNE

and

> get them to schedule me ASAP, " like tomorrow. " I called the gyne when

I

> got back and the nurse told me " I AM IN THE MIDDLE HERE. I HAVE TO DO

> WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK

> AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL

> JULY. " OMG!!!! I was fuming!! I am thinking, lady, you are not in the

> middle at all. I am the one who has cancer and no one knows where it

> is!! I called Birmingham back and Dr. deAndrade said he was going to

> fax a letter to the gyn/oncology doc stating that I needed to be seen

> sooner than July. I haven't heard anything back yet, but that was

> yesterday, so with it being the weekend, I figured I wouldn't hear

> anything before next week anyway. Dr. deAndrade said if it turns out

> the gyne/oncology workup is benign (he recommended I go ahead and have

> the ovaries removed so I won't have

> > to worry about it), then they are going to bring me back and scan me

> from head to toe to try and find where the cancer is. Meantime, I am

> impatiently waiting. I haven't cried yet, though. Can't believe it,

> but so far I haven't. I can only imagine whenever I do it will surely

> be a flood -- hey to quote Timberlake " cry me a river!! " He

> did some more blood work, liver tests, and added a CK and aldolase to

> check for muscle damage. He said the 2 new autoimmune diseases will

> most likely cause muscle damage and my muscles will slowly but surely

> deteriorate. So that is all I know. I know some of you here have these

> 2 autoimmune diseases, so any info on what to expect would be greatly

> appreciated. I did a little research but not a lot. Oh yeah, this same

> gyne I have been going to, when I asked her for some Xanax for my

> nerves, told me " I don't feel comfortable giving that drug to you, it

is

> addictive. " You should get it from

> > your family doctor. I almost laughed!! I am like, lady, I take 15

> medications a day!! How much more addicted can I get!!

> >

> > Wow what a week.

> >

> > I hope you all are having a great weekend. I am trying to catch up

on

> emails and see how everyone is doing. Thank you all for letting me

> VENT!! vent Caro

> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,

> RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08

> POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09

> > Mississippi

> >

>

March 7, 2009

The oncologist is the one in that my gyn here scheduled me to see in July. Dr. deAndrade said that is way too long and was supposed to write the letter and fax it yesterday. I am hoping to hear the beginning of next week that they moved me up. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Saturday, March 7, 2009 8:26:06 PMSubject: Re: IChecking in with tons of questions

CaroI'm also a bit shocked to read all this and see no mention of anoncologist. Dont' let doctors trying to show professional courtesytoward other doctors delay your evaluation and treatment.> >> > Hi all,> >> > Well the last 2 weeks have been some good news and some not so good> news. I got the biopsy report back from the colposcopy. It showed> mature squamous epithelial cells - recommend repeat in 6 months. Okay.> The gyne said no cancer BUT she wants me to go to to see a> gyn/oncologist to have the repeat colpo "just to be sure and safe." So> I get appontment scheduled for mid July. Meantime, I am thinking,okay,> I can deal with this. That was last Friday. I went to University of> Alabama at Birmingham on Tuesday for my routine checkup. He asked how> the Sjogrens was and I told him worse. The dry

mouth is so bad I get> choked often and the dry eyes are horrible even with the eyedrops. He> asked me if I had seen a rheumatologist yet. I told him no, so he is> probably going to refer me to one when I go back in July. Then hetells> me "remember when I told you that because you are so young, I thought> there may be an> > underlying autoimmune disease?" Well, I said yes, and then he saidmy> blood work came back positive for polymyositis and dermatomyositis, as> well as the Sjogren's. I told him I have been having lots of problems> with the stairs getting more short of breath. He thinks that is from> the polymyositis/ dermatomyositis rather than my lungs, as my PFTswere> actually better than they were in June 2008. He thinks the Imuran is> helping improve the lung function. He did tell me they are going to> maybe try and wean me off the prednisone

to help get my weight down. I> weighed 155 and at 4 feet 11 inches, he thinks that is too much and is> adding to the shortness of breath (and I TOTALLY agree). If thatwasn't> enough, he said I have a positive Jo-1 antibody. I was debatingwhether> or not to tell him about the OB-GYN visit or not since it did not> involve my lungs, but turns out, I am glad I did. He said the positive> blood tests I have makes him> > believe there is an underlying cancer. He told me to call my GYNEand> get them to schedule me ASAP, "like tomorrow." I called the gyne whenI> got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO> WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK> AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL> JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the> middle at all.

I am the one who has cancer and no one knows where it> is!! I called Birmingham back and Dr. deAndrade said he was going to> fax a letter to the gyn/oncology doc stating that I needed to be seen> sooner than July. I haven't heard anything back yet, but that was> yesterday, so with it being the weekend, I figured I wouldn't hear> anything before next week anyway. Dr. deAndrade said if it turns out> the gyne/oncology workup is benign (he recommended I go ahead and have> the ovaries removed so I won't have> > to worry about it), then they are going to bring me back and scan me> from head to toe to try and find where the cancer is. Meantime, I am> impatiently waiting. I haven't cried yet, though. Can't believe it,> but so far I haven't. I can only imagine whenever I do it will surely> be a flood -- hey to quote Timberlake "cry me a river!!" He> did some more

blood work, liver tests, and added a CK and aldolase to> check for muscle damage. He said the 2 new autoimmune diseases will> most likely cause muscle damage and my muscles will slowly but surely> deteriorate. So that is all I know. I know some of you here have these> 2 autoimmune diseases, so any info on what to expect would be greatly> appreciated. I did a little research but not a lot. Oh yeah, this same> gyne I have been going to, when I asked her for some Xanax for my> nerves, told me "I don't feel comfortable giving that drug to you, itis> addictive." You should get it from> > your family doctor. I almost laughed!! I am like, lady, I take 15> medications a day!! How much more addicted can I get!!> >> > Wow what a week.> >> > I hope you all are having a great weekend. I am trying to catch upon> emails and see how everyone

is doing. Thank you all for letting me> VENT!! vent Caro> > ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08,> RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08> POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> > Mississippi> >>

March 7, 2009

Oh Caro, I would run to a new gyn first thing Monday morning. She sounds cold as does her office person. The bit about being afraid to give you xanex because it could be addictive is crap!!! I would request that the office send your records directly to you asap. I wouldn't even set foot back in that office other than to pick up your records within 24 hours of requesting them. It is the law that the records belong to you and they must provide you with copies upon request. I would call the doctor who faxed her and ask him if he could fax in a prescription for the xanex to your pharmacy if nothing else for a short time until you resolve this and are feeling better about your situation. There is no cause for that gyn to add to your anxiety. Please stand up for yourself sweetheart and only let people in that you feel are helping you. I'll be thinking of you and praying that this hurtful situation is soon behind you and

forgotten.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

To: Breathe-Support Sent: Saturday, March 7, 2009 5:23:51 PMSubject: Re: IChecking in with tons of questions

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting.. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune

diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! ROTFL width=60 border=0> I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Oh Caro, I would run to a new gyn first thing Monday morning. She sounds cold as does her office person. The bit about being afraid to give you xanex because it could be addictive is crap!!! I would request that the office send your records directly to you asap. I wouldn't even set foot back in that office other than to pick up your records within 24 hours of requesting them. It is the law that the records belong to you and they must provide you with copies upon request. I would call the doctor who faxed her and ask him if he could fax in a prescription for the xanex to your pharmacy if nothing else for a short time until you resolve this and are feeling better about your situation. There is no cause for that gyn to add to your anxiety. Please stand up for yourself sweetheart and only let people in that you feel are helping you. I'll be thinking of you and praying that this hurtful situation is soon behind you and

forgotten.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

To: Breathe-Support Sent: Saturday, March 7, 2009 5:23:51 PMSubject: Re: IChecking in with tons of questions

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting.. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune

diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! ROTFL width=60 border=0> I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Thanks Margaret. This is really tough to get through. I thought it was tough trying to get through finding out I had UIP but this seems even tougher for some reason. I guess I have just "gotten used" to the idea of having lung disease, but now this. I am really a bit overwhelmed with it all. I thought the people at the GYN clinic were really nice, but I don't understand their attitude at all concerning this. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Saturday, March 7, 2009 9:01:36 PMSubject: Re: IChecking in with tons of questions

Oh Caro, I would run to a new gyn first thing Monday morning. She sounds cold as does her office person. The bit about being afraid to give you xanex because it could be addictive is crap!!! I would request that the office send your records directly to you asap. I wouldn't even set foot back in that office other than to pick up your records within 24 hours of requesting them. It is the law that the records belong to you and they must provide you with copies upon request. I would call the doctor who faxed her and ask him if he could fax in a prescription for the xanex to your pharmacy if nothing else for a short time until you resolve this and are feeling better about your situation. There is no cause for that gyn to add to your anxiety. Please stand up for yourself sweetheart and only let people in that you feel are helping you. I'll be thinking of you and praying that this hurtful situation is soon behind you and

forgotten.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 5:23:51 PMSubject: Re: IChecking in with tons of questions

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting.. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune

diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! ROTFL width=60 border=0> I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Too bad we have to discover that people can seem nice while in reality they are making decisions that are not in our best interest...my doc that I liked almost killed me by not treating me appropriately, he gave me meds I was allergic to, then gave me free med samples to make up for it, even dropping them off at my home. He ignored the diagnosis of PH and an enlarged heart by telling me to lose weight for years rather than giving me life saving medication or referring me to a specialist that knew the appropriate treatment. I was so depressed that I couldn't lose weight that I almost died because I couldn't breathe and went to the ER before getting to the correct specialist. Nice people can also be judgmental and purposely not refer you to the correct treatment for their own biased reasons.. We all have our biases but as physicians they are supposed to follow 'first do no harm' especially when that means getting you what you need

immediately rather than withholding or postponing what they know you need. Some physicians discriminate against patients they perceive to be bothersome or have conditions they judge to be morally offensive. We trust them to uphold their oath when some are undeserving of our trust. You are the only you there is so look out for #1

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

To: Breathe-Support Sent: Saturday, March 7, 2009 6:32:00 PMSubject: Re: IChecking in with tons of questions

Thanks Margaret. This is really tough to get through. I thought it was tough trying to get through finding out I had UIP but this seems even tougher for some reason. I guess I have just "gotten used" to the idea of having lung disease, but now this. I am really a bit overwhelmed with it all. I thought the people at the GYN clinic were really nice, but I don't understand their attitude at all concerning this. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Margaret McConnell <margaretmcconnell64 @yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 9:01:36 PMSubject: Re: IChecking in with tons of questions

Oh Caro, I would run to a new gyn first thing Monday morning. She sounds cold as does her office person.. The bit about being afraid to give you xanex because it could be addictive is crap!!! I would request that the office send your records directly to you asap. I wouldn't even set foot back in that office other than to pick up your records within 24 hours of requesting them. It is the law that the records belong to you and they must provide you with copies upon request. I would call the doctor who faxed her and ask him if he could fax in a prescription for the xanex to your pharmacy if nothing else for a short time until you resolve this and are feeling better about your situation. There is no cause for that gyn to add to your anxiety. Please stand up for yourself sweetheart and only let people in that you feel are helping you. I'll be thinking of you and praying that this hurtful situation is soon behind you and

forgotten.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 5:23:51 PMSubject: Re: IChecking in with tons of questions

Thanks so much MB. I am currently on Imuran 150 mg a day and prednisone 5 mg a day. He said he wants me to get this cancer thing taken care of before he changes any of my meds. I guess he will call me in the next week or so with my blood work results. I have never been a very patient person so this is all really hard to deal with. I am really not too concerned about my weight now that he told me about the cancer thing, cuz I really don't know anyone who got cancer that didn't lose weight!! Am not thrilled of the thought of chemo, though, if it comes to that. I would really hate to lose my hair and the nausea and vomiting and diarrhea would not be fun either, plus the extra fatigue, etc. I am trying to think positive and hope and pray that it is going to turn out to be the "mass" they found on my right ovary and they can just take the ovaries out and that will be the end of it.

Wishful thinking I know, but right now, that is all I can do. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: Beth <mbmurtha (AT) yahoo (DOT) com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 7:56:09 PMSubject: Re: IChecking in with tons of questions

Caro,

Oh my gosh you poor baby. It's all so overwhelming and you seem to get hit with a bunch of stuff all at once. I'm newly diagnosed with Dermatomyositis so I'm still on the learning curve myself.

I'm being treated with Imuran and it seems to be working in that my sed rate and crp are down and the rash on my hands is substantially better and on my eyes has disappeared. How much Imuran are you on?

Caro I would get yourself to a rheumatologist ASAP. And if your gyn won't see you before July find a new one. This is ridiculous.

Try not to panic (easy for me to say right?) You're doing every thing you can and if there's something there, you'll find it and deal with it. One step at a time Caro. You are in my thoughts and prayers!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 8:32:45 PMSubject: IChecking in with tons of questions

Hi all,

Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in

July. Then he tells me "remember when I told you that because you are so young, I thought there may be an underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow." I called the gyne when I got back and the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard

anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have to worry about it), then they are going to bring me back and scan me from head to toe to try and find where the cancer is. Meantime, I am impatiently waiting... I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune

diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from your family doctor. I almost laughed!! ROTFL width=60 border=0> I am like, lady, I take 15 medications a day!! How much more addicted can I get!!

Wow what a week.

I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!!

vent CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

March 7, 2009

Hi Caro - this all sucks. So they think the monster is there but they don't

know where? Double suck.

There are some really good ob/gym docs in . That is where both my

daughters were born. Good luck with them. And the traffic.

S, Lubbock, TX

NSIP w/PF 12/2006 et al

>

> Hi all,

>

> Well the last 2 weeks have been some good news and some not so good news. I

got the biopsy report back from the colposcopy. It showed mature squamous

epithelial cells - recommend repeat in 6 months. Okay. The gyne said no

cancer BUT she wants me to go to to see a gyn/oncologist to have the

repeat colpo " just to be sure and safe. " So I get appontment scheduled for mid

July. Meantime, I am thinking, okay, I can deal with this. That was last

Friday. I went to University of Alabama at Birmingham on Tuesday for my routine

checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is

so bad I get choked often and the dry eyes are horrible even with the

eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he

is probably going to refer me to one when I go back in July. Then he tells

me " remember when I told you that because you are so young, I thought there may

be an

> underlying autoimmune disease? " Well, I said yes, and then he said my blood

work came back positive for polymyositis and dermatomyositis, as well as the

Sjogren's. I told him I have been having lots of problems with the stairs

getting more short of breath. He thinks that is from the

polymyositis/dermatomyositis rather than my lungs, as my PFTs were actually

better than they were in June 2008. He thinks the Imuran is helping improve the

lung function. He did tell me they are going to maybe try and wean me off the

prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches,

he thinks that is too much and is adding to the shortness of breath (and

I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1

antibody. I was debating whether or not to tell him about the OB-GYN visit or

not since it did not involve my lungs, but turns out, I am glad I did. He said

the positive blood tests I have makes him

> believe there is an underlying cancer. He told me to call my GYNE and get

them to schedule me ASAP, " like tomorrow. " I called the gyne when I got back

and the nurse told me " I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR

SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE

DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY. " OMG!!!! I was

fuming!! I am thinking, lady, you are not in the middle at all. I am the one

who has cancer and no one knows where it is!! I called Birmingham back and Dr.

deAndrade said he was going to fax a letter to the gyn/oncology doc stating that

I needed to be seen sooner than July. I haven't heard anything back yet, but

that was yesterday, so with it being the weekend, I figured I wouldn't hear

anything before next week anyway. Dr. deAndrade said if it turns out the

gyne/oncology workup is benign (he recommended I go ahead and have the ovaries

removed so I won't have

> to worry about it), then they are going to bring me back and scan me from

head to toe to try and find where the cancer is. Meantime, I am impatiently

waiting. I haven't cried yet, though. Can't believe it, but so far I haven't.

I can only imagine whenever I do it will surely be a flood -- hey to

quote Timberlake " cry me a river!! " He did some more blood work, liver

tests, and added a CK and aldolase to check for muscle damage. He said the 2

new autoimmune diseases will most likely cause muscle damage and my muscles will

slowly but surely deteriorate. So that is all I know. I know some of you here

have these 2 autoimmune diseases, so any info on what to expect would be greatly

appreciated. I did a little research but not a lot. Oh yeah, this same gyne I

have been going to, when I asked her for some Xanax for my nerves, told me " I

don't feel comfortable giving that drug to you, it is addictive. " You should

get it from

> your family doctor. I almost laughed!! I am like, lady, I take 15

medications a day!! How much more addicted can I get!!

>

> Wow what a week.

>

> I hope you all are having a great weekend. I am trying to catch up on emails

and see how everyone is doing. Thank you all for letting me VENT!! vent Caro

> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID

ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER

OF UNKNOWN ORIGIN 03/09

> Mississippi

>

March 7, 2009

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

March 8, 2009

Oh Caro, if anyone ever needed xanex, you could certainly use some now. Does one of your other local doctors have an on call number so that you could reach someone who could give you even six tablets to get you through Sunday and dealing with your other needs on Monday. You are certainly not going to become addicted or overdose on that amount. God love you, you are all in my thoughts and prayers.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

To: Breathe-Support Sent: Saturday, March 7, 2009 10:59:02 PMSubject: Re: Re: IChecking in with tons of questions

Hey, I can deal with the traffic. Lived there for 15 years. On another bad note , though. Remember when I told you all my youngest son was in jail for burglary? Well, my oldest son called tonight and he said Brent (my youngest son) called him tonight and told him he got his blood tests back on Wednesday (I guess they do that when you are in county jail), and he is HIV positiive. He was tested 2 years ago when he got arrested and he was HIV negative, so he has "nailed it down to 2 people he has been with the last 2 years." I know that HIV positive does not necessarily mean that you have full blown AIDS but this on top of the cancer findings I had myself this week is just too much!! My mom says that God won't put more on you than you can handle, but honestly sometimes, I find it really hard to believe. I am

hopefully going to get to talk to him next week and am going to tell him that Majic has been HIV positive for years and is still alive and we will get through this together as a family and I love him no matter what and that is what counts. I am so stressed out I feel like I can barely breathe. I don't care about me, but when it is my child, I am worried sick. That is all that matters to me. He was going to be sent to the coast for a boot camp, but now that they know he is HIV positive, they are going to send him to Parchman ( the worst jail in the state), so he can get medication and he will not be in general population, so at least I am glad he will be getting medication. I am hopefully going to get to talk to him next Sunday (not tomorrow) and tell him that I love him no matter what and we will get through this together as a family and that is all that matters. You

guys, please pray for me. I need it so bad. I am at my wit's end.

CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

From: <lbsmith789@sbcgloba l.net>To: Breathe-Support@ yahoogroups. comSent: Sunday, March 8, 2009 12:05:03 AMSubject: Re: IChecking in with tons of questions

Hi Caro - this all sucks. So they think the monster is there but they don't know where? Double suck. There are some really good ob/gym docs in . That is where both my daughters were born. Good luck with them. And the traffic. S, Lubbock, TXNSIP w/PF 12/2006 et al>> Hi all,> > Well the last 2 weeks have been some good news and some not so good news. I got the biopsy report back from the colposcopy. It showed mature squamous epithelial cells - recommend repeat in 6 months. Okay. The gyne said no cancer BUT she wants me to go to to see a gyn/oncologist to have the repeat colpo "just to be sure and safe." So I

get appontment scheduled for mid July. Meantime, I am thinking, okay, I can deal with this. That was last Friday. I went to University of Alabama at Birmingham on Tuesday for my routine checkup. He asked how the Sjogrens was and I told him worse. The dry mouth is so bad I get choked often and the dry eyes are horrible even with the eyedrops. He asked me if I had seen a rheumatologist yet. I told him no, so he is probably going to refer me to one when I go back in July. Then he tells me "remember when I told you that because you are so young, I thought there may be an> underlying autoimmune disease?" Well, I said yes, and then he said my blood work came back positive for polymyositis and dermatomyositis, as well as the Sjogren's. I told him I have been having lots of problems with the stairs getting more short of

breath. He thinks that is from the polymyositis/ dermatomyositis rather than my lungs, as my PFTs were actually better than they were in June 2008. He thinks the Imuran is helping improve the lung function. He did tell me they are going to maybe try and wean me off the prednisone to help get my weight down. I weighed 155 and at 4 feet 11 inches, he thinks that is too much and is adding to the shortness of breath (and I TOTALLY agree). If that wasn't enough, he said I have a positive Jo-1 antibody. I was debating whether or not to tell him about the OB-GYN visit or not since it did not involve my lungs, but turns out, I am glad I did. He said the positive blood tests I have makes him> believe there is an underlying cancer. He told me to call my GYNE and get them to schedule me ASAP, "like tomorrow. " I called the gyne when I got back and

the nurse told me "I AM IN THE MIDDLE HERE. I HAVE TO DO WHAT MY DOCTOR SAYS. YOU NEED TO CALL YOUR DOCTOR IN BIRMINGHAM BACK AND TELL THEM WE HAVE DONE ALL WE CAN DO. YOU WILL HAVE TO WAIT UNTIL JULY." OMG!!!! I was fuming!! I am thinking, lady, you are not in the middle at all. I am the one who has cancer and no one knows where it is!! I called Birmingham back and Dr. deAndrade said he was going to fax a letter to the gyn/oncology doc stating that I needed to be seen sooner than July. I haven't heard anything back yet, but that was yesterday, so with it being the weekend, I figured I wouldn't hear anything before next week anyway. Dr. deAndrade said if it turns out the gyne/oncology workup is benign (he recommended I go ahead and have the ovaries removed so I won't have> to worry about it), then they are going to bring me back and scan me from head to toe to try and find

where the cancer is. Meantime, I am impatiently waiting. I haven't cried yet, though. Can't believe it, but so far I haven't. I can only imagine whenever I do it will surely be a flood -- hey to quote Timberlake "cry me a river!!" He did some more blood work, liver tests, and added a CK and aldolase to check for muscle damage. He said the 2 new autoimmune diseases will most likely cause muscle damage and my muscles will slowly but surely deteriorate. So that is all I know. I know some of you here have these 2 autoimmune diseases, so any info on what to expect would be greatly appreciated. I did a little research but not a lot. Oh yeah, this same gyne I have been going to, when I asked her for some Xanax for my nerves, told me "I don't feel comfortable giving that drug to you, it is addictive." You should get it from> your family doctor. I

almost laughed!! I am like, lady, I take 15 medications a day!! How much more addicted can I get!!> > Wow what a week.> > I hope you all are having a great weekend. I am trying to catch up on emails and see how everyone is doing. Thank you all for letting me VENT!! vent Caro> ASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/ DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09> Mississippi>

March 8, 2009

Thanks Margaret. I guess I made it through the night. Didn't sleep much at all. Ever wake up in the morning and wishing the night before was just a dream? Well, that is how I woke up this morning. I was on the phone with my mom until nearly 1 a.m. before I finally fell asleep on the sofa sitting up with the TV on. Woke up and it was 7 a.m. and I went to bed and just woke up about 30 minutes ago. Feel totally like crap. I was planning to do some house cleaning today but it may just have to wait. I am just not in the mood. It is supposed to storm here today, also. I am waiting on a call from my oldest son, as my youngest who is the one in prison is going to have to call his fiancee and give her the news and use my oldest' phone becuase that is the only number he can call. Am worried about my oldest because he has to be the one there when he gives her the

news. Still not going to be a good day. CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08 SJOGREN SYNDROME 07/08 POLYMYOSITIS/DERMATOMYOSITIS 03/09 CANCER OF UNKNOWN ORIGIN 03/09Mississippi

To: Breathe-Support Sent: Sunday, March 8, 2009 6:24:27 AMSubject: Re: Re: IChecking in with tons of questions

Oh Caro, if anyone ever needed xanex, you could certainly use some now. Does one of your other local doctors have an on call number so that you could reach someone who could give you even six tablets to get you through Sunday and dealing with your other needs on Monday. You are certainly not going to become addicted or overdose on that amount. God love you, you are all in my thoughts and prayers.

Margaret 62 Anchorage, Alaska

Pneumonitis 97, PH 06, COPD, PF, respiratory & heart failure 08

I enjoy traveling, photography, gardening, sewing, home decorating,

playing with my toys & classical music

aka Grammie Goose

From: Carolyn Wade <carowade4444@ yahoo.com>To: Breathe-Support@ yahoogroups. comSent: Saturday, March 7, 2009 10:59:02 PMSubject: Re: Re: IChecking in with tons of questions