update

[Guest guest]

Marty, thank you for 's update. Only 3 more chemo treatments. Sounds

marvelous! Hope she stays strong and gets those over with. With her mom coming

to Arizona in January and her sister's new baby coming, it will be a Happy New

Year. God bless.

~Deb from KS

djw52566 wrote:

This has been a busy week for . On Monday we went in to see the

gynecological surgeon concerning her cyst on her left ovary. The

doctor didn't feel like it required surgery at this time. He asked

that we get another ultrasound. We also had him check out the lump

on her left breast. He said that after checking it that it didn't

feel like cancer, but more like a cyst or something of that nature.

He also asked for a ultrasound and mamogram on that. They scheduled

the ultrasounds for Tuesday of this week because they wanted to get

results quickly before went in for her chemo on Wednesday. We

went in early Tuesday to the gynecologist for her ultrasound on the

cyst on her ovary and the nurse stated that it had shrunk slightly

but she now also had one on her left ovary. She said it was quite

normal and didn't look like cancer to her. She knew 's basic

menstrual cycle so she felt that is why the cyst appeared on her

right ovary. The doctor was supposed to look over the results and

pictures and get with on Wednesday to tell her what he

thought. She went in later to have the ultrasound and mamogram on

the left breast and they said it was a cyst. They stated that it was

more than likely caused by stress. On Wednesday went in for

chemo treatment #9, only 3 more to go!!! Afterwards she went and had

the pump installed and then went and saw the gynecological doctor

concerning the ultrasound taken the day before. She said that he did

not feel it was cancer and that at this time he would not do

anything. He scheduled a follow-up ultrasound for 3 weeks from now

to see what it is doing. At that time he will make the decision as

to whether to remove it surgically or maybe offer some type of

medication to help remove it. He will also have a CEA125 test done

again. The CEA125 test is evidently a test for ovarian cancer.

Normal is between 0 and 36, 's was at 12 the last time they did

it. Today she stayed home as the chemo really takes it out of her.

But I have noticed from watching and being around her every day that

she seems to really go down hill once the pump is removed. Not sure

what causes this as I would think that not having the infusion of FU5

would help her body start coming back to normal. Other than that she

is doing okay with this treatment. I haven't noticed anything

different from the past 8. She now regrets not being able to have

those 3 that she missed because of low blood counts. She is ready

for this to be over and to try to get back to a somewhat normal life.

Good news is that her mom who lives in Australia will be in the

U.S. in January. She won't be up here in frigid Montana, but in

Arizona with 's sister who is expecting her second child. We'll

work something out to get her down there to see her mom as she hasn't

seen her in about 10 years.

Dan &

__________________________________________________

[Guest guest]

I will second that statement by . I don't know how much they reduced

my chemo meds or which ones but about half way through when I got the

diarrhea and low potassium and low wbc my onc decided that they needed to

adjust the meds. After that I was fine, never did have major neuropathy

problems, but my fingertips and bottom of my feet are still a bit sensitive

and tingly, though fingertips not as numb as before. It takes time for all

that to wear off, some longer than others but it does happen. So hang in

there... Hugs Jolene

Re: Re: Update

Dan:

I mentioned this before on this board but I want to repeat it in case you

didn't read my post. I am going on Monday for my 10th chemo session of

Folfox

plus Avastin. The last time I had this, my oncologist spent a lot of time

with me emphasizing that if my neuropathy is too bad, he wants to STOP

giving

me the Oxaliplatin. He said it is important for me to monitor my

neuropathy

and tell him if it doesn't completely go away between treatments. He said

that the neuropathy may be permanent and that some people are literally

tripping

over their own feet because they can't feel them. He said these last

treatments tend to worsen the neuropathy due to the cumulative impact the

chemo

has on us.

Is 's neutopathy going away between treatments? That is the test. If

not, she needs to cut back on the Oxaliplatin or eliminate it altogether.

Having said all of this, and hating my chemo so much, I nevertheless do not

want to have to eliminate the Oxy because I don't want the cancer to come

back. I want all the bang I can get from my chemo. Only 3 more to go and

I am

done. (I hope).

BTW: They did reduce all of my dosage of chemo by 20 percent after my

second

treatment because I was too sick. Was 's dose ever reduced?

My heart goes out to . You must tell her Onc about this. More then

likely they will reduce the OXY some and that will help. They reduced

mine a little and it helped a lot. I am Praying that can make it

through the last two chemo treatments with very little problems. Please

tell her we are all Praying for her. Love, Ingrid

>

> Well we went to the gynecologist today for her ultrasound on her

> ovaries and good news for a change. The cyst on her left ovary is

> pretty much gone and the one on the right ovary is less than half the

> size it was before!!! YEAAAAAAAA

>

> Finally some good news for . But the neuropathy is driving her

> insane. She said just holding pieces of paper can actually sometimes

> hurt. Any suggestions?

>

> Dan &

>

[Guest guest]

Jo Ann... I would be very concerned to have a person at rehab minimize my sat level in the 80s and not stop activity. I am presuming you are on O2 at least.

I don't know what to tell you when people who should know better act as though they do not know.

I personally would not be prepared to continue rehab when my sats are that low and I would politely tell them so...

I can only go by my own experience/knowledge...when I was in rehab and began to drop exercise stopped (at least on the treadmill) and I would move to the bike-thingy. If that didn't work I'd stop for the day and my doc would be notified.

Bruce will be answering you I'm sure....and probably MB

MamaSher; 70, IPF 3-06, OR. NasturtiumsDon't fret about tomorrow, God is already there!

Update

I finially got a call back from my Dr. I go Mon July 7th for a 6MW test. I have a question about this. I was told no Caffiene 12 hours before the test. I have never been told this before. Is this normal? Meanwhile I am still going to Pulminary Rehab. Tuesday while on the treadmil I dropped down to 84, the therapist came over and checked me but said to keep up, it continued to syay that low so she lowered the pace from 1.4 to 1.0 then it went up to 87 but that is all. They don't seem to concerned at all. I go back again today, hope I do better today. I will let you know how Monday goes.HAPPY 4TH to everyone. Jo Ann MI 53 UIP 9/07

[Guest guest]

Jo Ann,

When I did pulmonary rehab I was already on oxygen. Whenever my oxygen level dropped past 90, the therapist would turn up the oxygen so I would remain in the 90's. I would be concerned if your therapist didn't appear concerned for you, so you might want to speak with someone in charge or your doctor who might be better suited to support you.

Hope allo works out for you.

Adrienne

Subject: UpdateTo: Breathe-Support Date: Thursday, July 2, 2009, 11:29 AM

I finially got a call back from my Dr. I go Mon July 7th for a 6MW test. I have a question about this. I was told no Caffiene 12 hours before the test. I have never been told this before. Is this normal? Meanwhile I am still going to Pulminary Rehab. Tuesday while on the treadmil I dropped down to 84, the therapist came over and checked me but said to keep up, it continued to syay that low so she lowered the pace from 1.4 to 1.0 then it went up to 87 but that is all. They don't seem to concerned at all. I go back again today, hope I do better today. I will let you know how Monday goes..HAPPY 4TH to everyone. Jo Ann MI 53 UIP 9/07

[Guest guest]

Caro,

I'm glad you got such good news from the gyno. Good luck with the rheumatologist app't. Keep us posted and keep fighting!!

Beth

Moderator

Fibrotic NSIP 06/06 Dermatomyositis 11/08

To: Breathe-Support Sent: Monday, August 31, 2009 12:43:45 AMSubject: Update

Hi u guys!!

I went to Friday to the OB-GYNE-ONCO. Actually was expecting to have a biopsy and 3 to 4 days of really bad cramps, but to my surprise -- he did the colposcopy, looked thru the scope and said the "bad spot" he saw before was gone!! He only did a Pap smear @ then said I can come back in 6 months for a repeat 4 followup, so as far as that goes I am great! He asked if there was anything new goin on with me and I said they told me I have lupus.. He said, "I knew that." I am like, "how did u know when they just told me this month?" He said, "u have the classic mask on ur face." Oh, that made me feel great, but sad as it is, it is true. Still haven't gotten rid of the rash. He asked me if I was on any medicine for lupus? I said no, but I have apppointment with rheumie at UAB on 9-2 so he said that is where I need

to be cuz of all the medical problems I have. He said they will probly put me on high dose steroids to treat it. I told him I knew there was no cure, but was hopn maybe they could "prolong it." He said, "oh, yeah, there is no cure, but it IS treatable." So, I love Dr. to death and told him so before I left the clinic. He is so sweet and I know he wishes he could really help me with this stupid disease, but I love Dr. deAndrade, too, and I he (Dr. ) told me that his mom had PF and she went to UAB for treatment and he thought Dr. deAndrade was her doctor, too. What a coincidence!! But a good one!! Anyhoo, that is where I am now. Waiting for 9-2-09 to see what kinda ringer they put me thru!! I am up 4 the challenge, tho!! CaroMissippi, COPD 2005, UIP January 2007, Sjogren syndrome July 2008, polymyositis/dermatomyositis November 2008, Fatty liver disease June 2009, Lupus (SLE)July 2009, mixed connective tissue disease August 2009

[Guest guest]

I just wanted to let everyone know channas back he,he. I missed you all so

much. I laughed and cried on this group more times then I could count, and I

will always consider each one of you my dearest friends.

I finally got internet after months without. I am living in a really small town

which has some good parts and some bad. Like I am already being labeled a wierdo

for being so vocal about my stance on vaccines.

I just got to cause trouble for myself I guess.

My son is doing really good and I want to share and help with others maybe

learning something from me.I love it when other folks share with me what is

working for them .

all organic non GMO food. immusist which stirred up so much toxins in the

beginning is working amazing now. he couldnt tolerate two drops six months ago

without going balistic now he is up to sevendrops a day.

In the AM I use probiotics,a product called alkalyze which alkalizes the body

and I alternate between probiotics and pathogen fighters with the alkalyze in

AM ...apple cider vinager and lugols after big meeals...eidon liqiud minerals

(with the cider)copper ( yes still a copper fan) liver tonic before meals to

increase bile. bluegreen algae for binder. i alternate with diamatous earth and

usually give these after meals. red algae and epicor for immune help.

when I can remember fish oil and PS and lethicin

and my biggest wow up to date is 2 to three capsules of 750 mg GABA with ginko

biloba and turine. i tried gaba before with no effect cause i didnt give enough.

It chills him the heck out. the ginko i read has brain detox qualitys. so I

heard cant attest to anything but it works for my kid.

I write more about it on my blog but then you got to read thru all my personal

wah the world sucks along with actual biomed.

www.healyourchild.wordpress.com

I want to say alkalyze had a lot to do with the turn around but the binders GABA

and immusist also had a synergistic effect. also diet..and I live in the

country//less pollution EMF ...i am hypothicizing of course. will try keep

updating as long as I got internet and my world doesnt turn upside down again..

channa

[Guest guest]

Small town it sounds quaint!!!Sent from my iPhone

I just wanted to let everyone know channas back he,he. I missed you all so much. I laughed and cried on this group more times then I could count, and I will always consider each one of you my dearest friends.

I finally got internet after months without. I am living in a really small town which has some good parts and some bad. Like I am already being labeled a wierdo for being so vocal about my stance on vaccines.

I just got to cause trouble for myself I guess.

My son is doing really good and I want to share and help with others maybe learning something from me.I love it when other folks share with me what is working for them .

all organic non GMO food. immusist which stirred up so much toxins in the beginning is working amazing now. he couldnt tolerate two drops six months ago without going balistic now he is up to sevendrops a day.

In the AM I use probiotics,a product called alkalyze which alkalizes the body and I alternate between probiotics and pathogen fighters with the alkalyze in AM ...apple cider vinager and lugols after big meeals...eidon liqiud minerals (with the cider)copper ( yes still a copper fan) liver tonic before meals to increase bile. bluegreen algae for binder. i alternate with diamatous earth and usually give these after meals. red algae and epicor for immune help.

when I can remember fish oil and PS and lethicin

and my biggest wow up to date is 2 to three capsules of 750 mg GABA with ginko biloba and turine. i tried gaba before with no effect cause i didnt give enough. It chills him the heck out. the ginko i read has brain detox qualitys. so I heard cant attest to anything but it works for my kid.

I write more about it on my blog but then you got to read thru all my personal wah the world sucks along with actual biomed. www.healyourchild.wordpress.com

I want to say alkalyze had a lot to do with the turn around but the binders GABA and immusist also had a synergistic effect. also diet..and I live in the country//less pollution EMF ...i am hypothicizing of course. will try keep updating as long as I got internet and my world doesnt turn upside down again..

channa