RE: New Here

[Guest guest]

Welcome, Sharyn, to a great group of people. I'm sorry about all of your health

problems. But, as others will tell you, RP can be somewhat controlled once your

doctor finds the right combination of medications. And when the RP gets out of

control, just let this group know. Everyone is here to pray for and encourage

each other through the good times as well as the bad. I was diagnosed last

March with RP and found this group a couple of months ago. It's amazing how

much I've learned from reading the posts and getting answers to just about any

question I've had. So ask away! I never had implants, but I can sure relate to

" slowly going down hill " . However, I'm steadily climbing back up. By the way,

I'm 53 and live in Kansas City. I'll be thinking good thoughts for you.

Take care,

New Here

Re: Hi Everyone

Re:

Re: My name is Sharyn Noakes and I live in Keystone Heights Florida.

Re: I'll be 54 next month and have been suffering from may illnesses for

Re: a very long time.

Re:

Re: It wasn't until two weeks ago when I just happen to have had an

Re: appointment with my Rheumy when I asked him about about the

Re: cartilage of both my ears hurting. They were very red, almost

Re: purple and hurt so bad I could hardly hold a phone to them. This

Re: was not the first time this had happend to me. About 5 years ago

Re: had it happen, but I wasn't one to go running to the doctor.

Re:

Re: I guess I was lucky...or not...that day since he knew right off what

Re: it was. Relapsing Polychondritis. I was quickly sent to an ENT

Re: doctor then the following day had a biopocy <sp> done. I was kinda

Re: in the dark so I went home after the surgery and started looking up

Re: RP. The more I read the sicker I got.

Re:

Re: They started me on prednisone and the following week was back in my

Re: Rheumy's office. He explained to me about this disase being rare

Re: and an autoimmune disorder of connective tissue. He also put me on

Re: azathioprine an immune suppressent.

Re:

Re: When he said autoimmune disorder of connective tissue this did not

Re: surprise me.

Re:

Re: I hope you all will not think I am nuts, but I am sure many of you

Re: have heard all the news about silicone breast implants and the

Re: claims of autoimmune disorder etc.

Re:

Re: You see 27 years ago I got implants. Silicone implants and from

Re: that day on I started to become ill. Mainly with joint problems

Re: which progress through out the years. It took me 6 years to finally

Re: convince doctors that not only was I in severe pain from them, but I

Re: was getting sicker and sicker. Well, they finally removed them

Re: three years ago after being in my body for 24 years. I had had one

Re: rupture about 8 months after I firt got these implants and was

Re: reimplanted.

Re:

Re: What the doctor found one would not have dreamed. My implants were

Re: ruptured. The scare tissue and silicone had crystilized and

Re: embedded into my chest muscles. It was a very difficult surgery,

Re: but they were finally removed.

Re:

Re: Some of my health problems did get better, but my health over all

Re: did not. My joints hurt, I've had rashes and I have lost all the

Re: cartilage in my right hip. I will need a hip replacement soon.

Re:

Re: I have tried to keep an open mind with this implants stuff, but I

Re: belong to several support groups and we all have a lot in common. FM

Re: and I'll try to spell it but I'm sure it won't be correct.

Re: Fibromyligia is the one factor that " all " of us do have. We are all

Re: sick and in my heart I feel that the silicone has much to do with it.

Re:

Re: I feel also in my heart that this RP I have been diagonised with has

Re: a lot to do with the chemicals used in silicone.

Re:

Re: So here is my question. Are there any of you who have had silicone

Re: implants of any kind? I know it sounds like I am grasping at

Re: straws, but my family history...five generations back have never had

Re: any of the illnesses that I have. I am also a diabetic which is

Re: making it difficult taking the prednisone since it has made my blood

Re: sugar go up high.

Re:

Re: I want you all to know that I am a very strong woman, but I will

Re: admit I'm scared to death. Not so much for me, but for my family

Re: and most of all my daughter who is 24. The other thing that has

Re: affected me is all that I have read has shown me that many of the

Re: problems I went to see doctors about is covered with this RP. And

Re: the doctors missed it. Some even treated me like I was nuts too.

Re: Now this makes me mad because if they had been good doctors they

Re: would have not brushed my health problems off.

Re:

Re: My Rheumy new because he happened to see a case when he was in

Re: medical school.

Re:

Re: Are there any suggestions anyone can offer me regarding this RP? I

Re: am still working, but I am slowing going down hill and do not know

Re: if working the way I do is healthy for me.

Re:

Re: Thank you all for allowing me to join this group.

Re:

Re: Sharyn

Re:

Re:

Re:

Re: DISCLAIMER!!

Re: WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED

HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING

ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE

NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT

FOR MANY OF US. THANK YOU

Re:

Re:

[Guest guest]

Hi Sharyn,

I was treated like a nut case too. Took me over 10 years to get a DX. of RP. I have Fibromyalgia and my Docs get telling me my syptoms were due to Fibro. It was not until I became very ill that my PCP sent me to a new Rheumy who DX. it immediately.

I have not had implants so I can not help you concerning this.

I know you are scared, I think we all were when we started reading about RP. Ther are Meds that can help control this,

it is a matter of finding the right ones that work for you.

What do you use to help control your Diabetes? I have steroid induced Diabetes.

Sandy

----- Original Message ----- Hi EveryoneMy name is Sharyn Noakes and I live in Keystone Heights Florida. I'll be 54 next month and have been suffering from may illnesses for a very long time.It wasn't until two weeks ago when I just happen to have had an appointment with my Rheumy when I asked him about about the cartilage of both my ears hurting. They were very red, almost purple and hurt so bad I could hardly hold a phone to them. This was not the first time this had happend to me. About 5 years ago had it happen, but I wasn't one to go running to the doctor. I guess I was lucky...or not...that day since he knew right off what it was. Relapsing Polychondritis. I was quickly sent to an ENT doctor then the following day had a biopocy <sp> done. I was kinda in the dark so I went home after the surgery and started looking up RP. The more I read the sicker I got. They started me on prednisone and the following week was back in my Rheumy's office. He explained to me about this disase being rare and an autoimmune disorder of connective tissue. He also put me on azathioprine an immune suppressent.When he said autoimmune disorder of connective tissue this did not surprise me. I hope you all will not think I am nuts, but I am sure many of you have heard all the news about silicone breast implants and the claims of autoimmune disorder etc.You see 27 years ago I got implants. Silicone implants and from that day on I started to become ill. Mainly with joint problems which progress through out the years. It took me 6 years to finally convince doctors that not only was I in severe pain from them, but I was getting sicker and sicker. Well, they finally removed them three years ago after being in my body for 24 years. I had had one rupture about 8 months after I firt got these implants and was reimplanted.What the doctor found one would not have dreamed. My implants were ruptured. The scare tissue and silicone had crystilized and embedded into my chest muscles. It was a very difficult surgery, but they were finally removed.Some of my health problems did get better, but my health over all did not. My joints hurt, I've had rashes and I have lost all the cartilage in my right hip. I will need a hip replacement soon.I have tried to keep an open mind with this implants stuff, but I belong to several support groups and we all have a lot in common. FM and I'll try to spell it but I'm sure it won't be correct. Fibromyligia is the one factor that "all" of us do have. We are all sick and in my heart I feel that the silicone has much to do with it.I feel also in my heart that this RP I have been diagonised with has a lot to do with the chemicals used in silicone.So here is my question. Are there any of you who have had silicone implants of any kind? I know it sounds like I am grasping at straws, but my family history...five generations back have never had any of the illnesses that I have. I am also a diabetic which is making it difficult taking the prednisone since it has made my blood sugar go up high.I want you all to know that I am a very strong woman, but I will admit I'm scared to death. Not so much for me, but for my family and most of all my daughter who is 24. The other thing that has affected me is all that I have read has shown me that many of the problems I went to see doctors about is covered with this RP. And the doctors missed it. Some even treated me like I was nuts too. Now this makes me mad because if they had been good doctors they would have not brushed my health problems off.My Rheumy new because he happened to see a case when he was in medical school. Are there any suggestions anyone can offer me regarding this RP? I am still working, but I am slowing going down hill and do not know if working the way I do is healthy for me. Thank you all for allowing me to join this group.SharynDISCLAIMER!!WE ARE NOT MEDICAL PROFESSIONALS, THEREFORE ANY INFORMATION THAT IS RECEIVED HERE IS FROM EXPERIENCE ONLY. PLEASE CONSULT WITH YOUR DOCTOR BEFORE TRYING ANYTHING THAT IS SUGGESTED. WE ARE NOT A SUBSTITUTE FOR YOUR PHYSICIAN AND ARE NOT TRYING TO BE. REMEMBER EVERYONE IS DIFFERENT AND TREATMENT MAYBE DIFFERENT FOR MANY OF US. THANK YOU

[Guest guest]

Sue

Welcome to the group. Wow you have had a real battle, the accident plus the

cancer.

Well sounds like you have a good doc, who wants to be extra careful.

How are you doing through this round of chemo, what combination of drugs are

they using this time.

We have a couple people here who have mets to the liver, and are just

holding there own right now.

I am at the end of first chemo and hoping I don't have any more but will

wait to see what my Onc says next week. I am a bit apprehensive about it, My

CEA is low but I was diagnosed Stage 4C, with 7 of 12 lymph nodes showing

cancer. My doc seemed to think I would be okay from now on, but who knows. I

just take each day as it comes.

I am 64 years old, my life isn't over yet and don't intend to give up yet..

I don't like the thought of more cancer but if it is there I have to deal

with it.

You will hear from others on the board who maybe can give you better advice.

You have come to a good place. Hugs and Prayers Jolene

_____

[Guest guest]

Hi ,

My surgeon felt that there wouldn't be any further treatment after

the resection. My oncologist didn't feel that I needed to do the

adjuvant chemo as there has been no studies that shows the chemo to

be effective after the resection. I didn't get a second opinion on

this as I was so happy that I didn't have to go through the chemo

again.

Hope I didn't make a mistake by not getting a second opinion.

Sue

> Sue:

> I am shocked that you did not have chemo after the liver surgery.

I have

> never heard of not following up when it reappears. Have you had a

second

> opinion on that one?

>

>

>

>

>

>

>

[Guest guest]

Thanks for the welcome Jolene! The original plan was to have xeloda

and oxiplatin (sp?) after the surgery but since the margins were

clear and no more cancer was found on the liver, my oncologist didn't

feel the need for the chemo.

When they did the colon surgery, they found that two of my lymph

nodes were involved and that's why I did the adjuvant chemo. Three

months later the cancer shows up in my liver.

Sue

> Sue

>

> Welcome to the group. Wow you have had a real battle, the accident

plus the

> cancer.

>

> Well sounds like you have a good doc, who wants to be extra careful.

>

>

>

> How are you doing through this round of chemo, what combination of

drugs are

> they using this time.

>

> We have a couple people here who have mets to the liver, and are

just

> holding there own right now.

>

>

>

> I am at the end of first chemo and hoping I don't have any more but

will

> wait to see what my Onc says next week. I am a bit apprehensive

about it, My

> CEA is low but I was diagnosed Stage 4C, with 7 of 12 lymph nodes

showing

> cancer. My doc seemed to think I would be okay from now on, but who

knows. I

> just take each day as it comes.

>

> I am 64 years old, my life isn't over yet and don't intend to give

up yet..

>

>

> I don't like the thought of more cancer but if it is there I have

to deal

> with it.

>

> You will hear from others on the board who maybe can give you

better advice.

>

> You have come to a good place. Hugs and Prayers Jolene

>

>

>

>

>

> _____

>

>

>

>

[Guest guest]

Thanks for the welcome It sounds like I found myself a new

home

Sue

>

> Welcome, Sue, though sorry for why you find yourself here. Others

will respond and you'll find a really great bunch of caring, informed

people here, both survivors and caregivers. If you have questions,

just ask. Someone is bound to have some ideas or find information

for you. This is also a good place to vent, express your fears or

hopes or sadness. We're all here for you and each other.

>

>

>

>

[Guest guest]

Hi Sue, Welcome to our group. You will feel very at home here quickly

since everyone here is so caring and friendly. I am a stage 3

survivor. Had original sugery in Sept. 04. Had a small tumor wrapped

in scar tissue removed June 05. Went through six months of chemo

which ended April O5.

I can fully relate to your fears of it returning since you and I

both have had this happen. I do not think those fears will ever go

away. They are normal feelings as all here can tell you. I am sure

you have been told to live for today and do not worry about the

tomorrow. Easier said then done. I try to stay busy with all kinds of

projects so my mind does not become to idle and wonder into the what

if's.

We have no control over this and there is nothing we can do but

trust in God. I trust in God to take care of me. Prayer helps a lot

too. When I get anxious I start praying and give my worries over to

God. God controls our destiny. I highly suggest that when you start

feeling anxious and concerned Pray and then get yourself busy with

something weather it be cleaning out a drawer or maybe volenteer

yourself to help someone. Maybe a neighbor that cannot drive.

That is how I cope with it. I am sure others here will also tell

you how they deal with this.

How is your recovery from the head-on collision. How long were you

in the hospital for that? Ingrid

>

> Hi List,

>

> I have been battling colon cancer since March of 2004. Here's my

> story.....On March 23, 2004 I was involved in an head-on collision

> with a jackknifed semi truck which was sitting in the middle of the

> road. I don't have a lot of memory from that point on but did wake

> up in ICU about two days later. While I was in the ICU the doctors

> found that I was bleeding from the rectum so they did a colonoscopy

> and confirmed that I had colon cancer. I was in such bad shape

that

> they couldn't do anything about it at that time. In June 2004 I

went

> in for the colon resection and followed up with six months of

> chemotherapy - 4 weeks on with 2 weeks off with FU5 and leucovorian

> (sp?). That ended in February 2005.

>

> I went back for my check-up in late May and they found that the

> cancer had spread to my liver. I went for surgery in July to have

a

> liver resection and the surgeon said he was sure he got it all and

> there was no cancer found in the margins. He also did a sonogram

on

> the remaining part of the liver and found no cancer. My oncologist

> didn't feel that I needed to follow up with chemo so that's where

I'm

> at right now.

>

> I will go back in December for a CT scan and am hoping for the best

> but am cautiously optimistic. I am having a hard time living with

> the fear of the cancer recurring and would like to know how all of

> you deal with it.

>

> Many thanks and hope to become a regular on this list.

>

> Sue

>

[Guest guest]

> >

> > Hi List,

> >

> > I have been battling colon cancer since March of 2004. Here's my

> > story.....On March 23, 2004 I was involved in an head-on

collision

> > with a jackknifed semi truck which was sitting in the middle of

the

> > road. I don't have a lot of memory from that point on but did

wake

> > up in ICU about two days later. While I was in the ICU the

doctors

> > found that I was bleeding from the rectum so they did a

colonoscopy

> > and confirmed that I had colon cancer. I was in such bad shape

> that

> > they couldn't do anything about it at that time. In June 2004 I

> went

> > in for the colon resection and followed up with six months of

> > chemotherapy - 4 weeks on with 2 weeks off with FU5 and

leucovorian

> > (sp?). That ended in February 2005.

> >

> > I went back for my check-up in late May and they found that the

> > cancer had spread to my liver. I went for surgery in July to

have

> a

> > liver resection and the surgeon said he was sure he got it all

and

> > there was no cancer found in the margins. He also did a sonogram

> on

> > the remaining part of the liver and found no cancer. My

oncologist

> > didn't feel that I needed to follow up with chemo so that's where

> I'm

> > at right now.

> >

> > I will go back in December for a CT scan and am hoping for the

best

> > but am cautiously optimistic. I am having a hard time living

with

> > the fear of the cancer recurring and would like to know how all

of

> > you deal with it.

> >

> > Many thanks and hope to become a regular on this list.

> >

> > Sue

> >

>