question for all

[Guest guest]

OK so I had a breast cancer scare and had breast surgery about 2 weeks ago.I

finally have an appt with my pulmonary doctor on Friday. My Rheumatologist

called him to discuss " things " . He feels strongly wanting to put me back on

Cytoxan again, but the breast doctor and the Rheumatologist agree that is why I

probably had the breast mass. So now what???? What choices do I have? He also

wants me to have a cardiac catherization to assess the situation. To me if he is

putting me back on Cytoxan what is the difference anyway if it treats PH and PF

both??I am still healing from breast surgery and feel there is a lot of risk

factors and I am scared out of my mind. I had Imdur, 6MP, Imuran,and Plaquenil

all with bad side effects. Even the last few months on Cytoxan I broke out in

sores on the left side of my body and they still aren't gone. (they thought it

was shingles but decided Lichen Planus) Also I have severe leg pains during the

day and at night. Loratab finally works after the 2nd one so I can sleep. So I

think the only thing left for me is Tacrolimus-has anyone experimented with that

one? I'd appreciate any help out there. I just know I will be bedridden if I

have to go back on Cytoxan. I had to have physical therapy for 3 months to help

me walk again. I feel like I'm tired everything also. Trying to stay positive

and pray alot. I finally got a chance to look at some of your picture albums.

All very nice! One of these days I will have time to make one too! Thanks for

your help! Diane NY

[Guest guest]



Diane ... I'm so sorry you deal with all you do. Makes my heart hurt. I think I have troubles.

I can't remember...how old are you and do you have good family support to help you?

Husband?

God Bless you GOOD!

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

question for all

OK so I had a breast cancer scare and had breast surgery about 2 weeks ago.I finally have an appt with my pulmonary doctor on Friday. My Rheumatologist called him to discuss "things". He feels strongly wanting to put me back on Cytoxan again, but the breast doctor and the Rheumatologist agree that is why I probably had the breast mass. So now what???? What choices do I have? He also wants me to have a cardiac catherization to assess the situation. To me if he is putting me back on Cytoxan what is the difference anyway if it treats PH and PF both??I am still healing from breast surgery and feel there is a lot of risk factors and I am scared out of my mind. I had Imdur, 6MP, Imuran,and Plaquenil all with bad side effects. Even the last few months on Cytoxan I broke out in sores on the left side of my body and they still aren't gone. (they thought it was shingles but decided Lichen Planus) Also I have severe leg pains during the day and at night. Loratab finally works after the 2nd one so I can sleep. So I think the only thing left for me is Tacrolimus-has anyone experimented with that one? I'd appreciate any help out there. I just know I will be bedridden if I have to go back on Cytoxan. I had to have physical therapy for 3 months to help me walk again. I feel like I'm tired everything also. Trying to stay positive and pray alot. I finally got a chance to look at some of your picture albums. All very nice! One of these days I will have time to make one too! Thanks for your help! Diane NY

[Guest guest]

Diane,

I'm new here-- what is the Cytoxin treating? Is it post-transplant medication,

or pre? It

sounds like you might have PF and RA like me. If it is post-transplant, there

is some

interesting evidence coming out of U Pitt to suggest that we might be able to

use far fewer

immunosuppresents (and exclude Cytoxin) without triggering rejection. If it is

pre-

transplant, and you are being treated for something like PF and RA (and PH,

even) you

might talk to your doc about CellCept. This might be totally unhelpful, as I'm

just

guessing at your situation! I've struggled with ulcers on my fingers and toes

and staph

infections and that sort of thing while they sorted out the right drugs for me--

and I know

how disheartening it can be.

one thing I can speak to is the right-heart cath (or cardiac catheterization) to

check for PH.

Trust me when I say that it is a very, very minor event. The worst thing about

it is that

you often end up waiting for the procedure for a long time. I've done it twice,

the incision

is teensy-tiny, and even on heavy doses of CellCept and Enbrel and other stuff,

heals up

like a pin-prick. It doesn't hurt. I get a little nervy and scared, though,

because it just

does seem scary! Both times I've asked a nurse to hold my hand, and that seems

to help,

actually.

I do think it is important to watch the PH, it is so important to keep it under

control.

Honestly, that monitor they make you wear to check for GERD (acid reflux), is

far worse

than the Cath. The cath is over quickly, very precise, and painless.

I hope you feel better soon and that you get all the right meds.

Hillary

>

> Diane ... I'm so sorry you deal with all you do. Makes my heart hurt. I think

I have

troubles.

> I can't remember...how old are you and do you have good family support to help

you?

> Husband?

> God Bless you GOOD!

>

> MamaSher, age 70. IPF 3-06, OR.

> Nasturtiums

> Don't fret about tomorrow, God is already there!

>

> question for all

>

>

> OK so I had a breast cancer scare and had breast surgery about 2 weeks ago.I

finally

have an appt with my pulmonary doctor on Friday. My Rheumatologist called him to

discuss " things " . He feels strongly wanting to put me back on Cytoxan again, but

the

breast doctor and the Rheumatologist agree that is why I probably had the breast

mass.

So now what???? What choices do I have? He also wants me to have a cardiac

catherization

to assess the situation. To me if he is putting me back on Cytoxan what is the

difference

anyway if it treats PH and PF both??I am still healing from breast surgery and

feel there is

a lot of risk factors and I am scared out of my mind. I had Imdur, 6MP,

Imuran,and

Plaquenil all with bad side effects. Even the last few months on Cytoxan I broke

out in

sores on the left side of my body and they still aren't gone. (they thought it

was shingles

but decided Lichen Planus) Also I have severe leg pains during the day and at

night.

Loratab finally works after the 2nd one so I can sleep. So I think the only

thing left for me

is Tacrolimus-has anyone experimented with that one? I'd appreciate any help out

there. I

just know I will be bedridden if I have to go back on Cytoxan. I had to have

physical

therapy for 3 months to help me walk again. I feel like I'm tired everything

also. Trying to

stay positive and pray alot. I finally got a chance to look at some of your

picture albums.

All very nice! One of these days I will have time to make one too! Thanks for

your help!

Diane NY

>

[Guest guest]

DEAR DIANE: MARY LOU PATTERSON HERE.

I am a 27 1/2 year breast cancer survivor as in 1981 had a mastectomy

on the left breast. I had one year of chemo, lost the hair, it

thinned a lot but didn't lose it all. Bought a wig, wore it once and

threw it out. Hated it. The chemo made me really really sick and

was still working full time, went to work 2 weeks after the surgery,

and would answer the phone, feel like I had to throw up, run to the

ladies room, throw up and go back to my desk and continue with the

phones. PHOOEY!!! What heartfelt love I feel for you Diane. I

never asked God WHY! I just took it and after the 3rd chemo

treatment I refused to go back that I was so sick I would rather die

than go in for another one. But Earl made me go and took me through

each one til they were done. One every 3 weeks. They were awful. I

can still taste the metallic taste in my mouth. (mentally). I lost a

lot of weight (looked great haha) but it really took a toll on my

body. Seems after that bout with cancer, my cholesterol went up to

485, and I have been fighting with the doctors ever since. They can

not get it down, everything that comes on the market, I have had it,

doesn't work, mine is extremely " GENETIC " . Runs really terribly high

in my Mom's family... They are all gone now. I had a cancer scare

last week, went in and they took 8 images, and an ultra sound, and

everything, fortunately was fine. Not a fun game to play at any

stage, my Dear Diane. If there are any questions you would like to

ask me please, by all means, ask me! I am here for you. k????

With the PF and that cancer, How do you do it? God Bless you, Dear

Heart.

I LOVE YOU THIS DAY

MARY LOU - (74) RICHMOND VA

IPF - 02

>

> OK so I had a breast cancer scare and had breast surgery about 2

weeks ago.I finally have an appt with my pulmonary doctor on Friday.

My Rheumatologist called him to discuss " things " . He feels strongly

wanting to put me back on Cytoxan again, but the breast doctor and

the Rheumatologist agree that is why I probably had the breast mass.

So now what???? What choices do I have? He also wants me to have a

cardiac catherization to assess the situation. To me if he is putting

me back on Cytoxan what is the difference anyway if it treats PH and

PF both??I am still healing from breast surgery and feel there is a

lot of risk factors and I am scared out of my mind. I had Imdur, 6MP,

Imuran,and Plaquenil all with bad side effects. Even the last few

months on Cytoxan I broke out in sores on the left side of my body

and they still aren't gone. (they thought it was shingles but decided

Lichen Planus) Also I have severe leg pains during the day and at

night. Loratab finally works after the 2nd one so I can sleep. So I

think the only thing left for me is Tacrolimus-has anyone

experimented with that one? I'd appreciate any help out there. I just

know I will be bedridden if I have to go back on Cytoxan. I had to

have physical therapy for 3 months to help me walk again. I feel like

I'm tired everything also. Trying to stay positive and pray alot. I

finally got a chance to look at some of your picture albums. All very

nice! One of these days I will have time to make one too! Thanks for

your help! Diane NY

>