RE: Anyone been diagnosed with breast cancer?/Flare question.

November 12, 2004

Dear , I'm so sorry to hear about the breast lumps and I hope and pray

they turn out to be benign. It really does get overwhelming when you think

you might have just figured out how to deal with this damn disease, and then

you get hit by another nightmare. You are right, not many people talk about

the cancer link, except to mention it exists. Luckily, knock on wood

everywhere, I haven't had that problem. I also (and I know I'm going to

catch hell for this)...haven't had a mammogram yet and I'm 49. It's just

been one more thing I've put off after dealing with all of the other

problems that seem constantly in my face. I will get one, luckily no one in

my family has ever had the disease, and I'm well aware that's not a

guarantee for anything.

As far as your constant flares goes, I have felt that way for the past 5

years. I'm like you, I have days when one part or area will hurt so bad I

just want to sit and cry, but the constant pain is with me always. I have a

lot of joint damage, bone loss, fibromyalgia, osteoporosis, and one of my

worst problems is erythromelalgia. (It is a rare disorder that causes your

skin to turn bright red and burn like crazy. It feel like you left your

hand under the boiler too long taking out dinner...best way to describe it.

Right now I have that constantly in my left hand, some in my right hand, my

face is involved and when it's really bad I have it in my feet. The only

thing that even comes close to dealing with the pain is cold gel packs.

It's to the point I don't leave the house without my little cooler of gel

packs. My joints ache all the time and the pain moves around almost

constantly. I also have problems with my spine and I've just started a set

of epidural injections into my neck to see if they can stop the

inflammation. The MRI of my neck showed I have a large bone spur that is

pressing on the nerve leading to my hands. My hands recently started going

numb along with the burning. I'm hoping that this problem is causing the

burning as well, but they doctors can't say for sure. I initially thought

that only one vertebrae was involved, but after re-reading my MRI, I noticed

that C4/5, C5/6, c6/7 and C7/T1 are all affected to some degree. The MRI

shows spondylosis, stenosis, and degenerative disc bulges. The sad thing

is I haven't gotten the MRI of my lower back done yet, and that bothers me

more than my neck.

As far as good news, and believe me even I have some...lol, I went on Arava

about 3-4 months ago and for the first 2.5 months I felt like a new person.

I still had pain, but the fatigue was gone and I felt like I could deal with

the other problems. I was able to decrease my prednisone from 20mg, which

I've been on for over 3 years now, to 10mg and I was thrilled. About 4

weeks ago, it hit again with a vengeance. I was so shocked, because in that

short time my activity level had picked up, I felt like my life had some

meaning again, and I could even do a few things around the house...like cook

dinner 4 times a week. To stop the flare, I increased my prednisone to 15mg

and it seemed to be getting a little better. Yesterday was miserable

though, so sometimes I wonder just how bad it would be if I were off my

medications completely. It's a scary thought.

As far as my breathing goes, I do have asthma and I've noticed on bad pain

days I'm more short of breath than on most days. I just figured that was

due to the increase in my stress level from the pain, but maybe you are

correct about the spinal area being to blame. My ribs hurt constantly as

well. Sometimes I feel like all the muscles around my stomach and sides are

in constant spasms. Even the front of my chest hurts and I know there is a

name for this, but I can't think of it right now. I also have reflux

attacks that are unreal. Luckily, they are really rare, and normally only

occur if I don't eat something when I take my pills.

You might think that I'm depressed and I admit there are days when I do get

really down. I think when you have bad days, after having some good ones,

you really feel cheated all over again by this disease. I also might be

feeling sorry for myself because my husband is on a free trip to Nashville,

of all places, and having a wonderful time. They got picked up in a stretch

limo and had it by themselves for the night. Since I knew there was no way

I could do the trip ( a pro football game is scheduled as well, and that's

impossible to do in a wheelchair and I doubt I would have the strength to

attend it.), I didn't want him to not go. We've turned down several free

trips our office has won, and we both worked really hard for years to get to

this place in our business. Luckily, my 23 year old daughter is with him

and having the time of her life. Believe me I really am happy they are

having so much fun. I do feel bad that my life has brought me to this place

and time, where trips or traveling are almost beyond me now. But there are

people who have given up much more than me which this disease. I'm not able

to work, but I'm still a consultant for the office and put my 2 cents in

constantly...lol. My husband loves me and wants me back at work simply

because he misses me. I've got two wonderful daughters who love me and so

far have turned out to be wonderful human beings. So I'm really very lucky,

but at times I still get down. ( I was writing you to talk about constant

flares and I've turned this into all about me....I'm so sorry for that and

you are facing things much worse than me.) This group does help to put life

into perspective for us all.

You didn't mention the medication you have tried. So many people have found

great results with the new line of drugs on the market. Have you tried any

of those and do you have a good doctor to help you with this disease? I

don't think I've been much help , and normally I'm better than this with

my emails. I hope you find something to help with your flares. Don't give

up hope. I went for almost 5 years before I found Arava and up until just

recently was thrilled with my results. I see my rheumatologist on Monday

and I'm hoping he can pull something out of his magical bag again. If you

find something that helps, please let me know. Everything works differently

on all of us, but I'm like you and open to all suggestions.

Take care and let me know about the breast problem. Hopefully, you'll have

good news and that will relieve your mind tremendously. Sorry I wasn't much

help. I'll write again when I'm more positive. Take care, Fran

[ ] Anyone been diagnosed with breast

cancer?/Flare question.

I'm go to an internist instead of a rheumy because not

only is he an amazing doctor but there isn't a good

rheumy in the area. He reminded me recently to make

sure that I kept up with yearly paps and mammograms.

He told me that PA and P could cause many things to

happen to us and cancer being one of them. Guess we

all knew that even though we don't seem to talk about

it much. I made the appointment for the mammogram and

I always keep up with yearly checkups with the GYN but

wouldn't you know it, the GYN found a lump. I've been

sent to a surgeon to have it checked and he has found

two more in the same breast that wasn't there in

August. The mammo. isn't showing anything cancerous

but the surgeon is watching closely for any changes.

I haven't read any post about anyone having any

trouble with lumps or cancer but I've only been a

member, ie. semi-lurker, for a relatively short time.

I'm just wondering how much our lovely disease up's

the odds.

About flares. Is there anyone else that has never

ending flares as I. Yes, I have some REALLY bad days

that it takes everything I've got to walk across the

house. You know, those days that you might can fake

that smile but its only with tears running down your

face? And then there are those good days where if I

rest several times I might can get the dishes done but

if I cook too then I'm done for the day and maybe for

tomorrow too. I always ache. My spine is affected

from my neck to my tail bone. By the way, I've heard

a few of you say that you too have trouble with your

upper back also. For you guys or for you that have

spine involvement, does it affect your breathing? My

ribs hurt all the time. Sometimes that makes it hurt

to breath but it is sometimes hard to breath but I'm

not short of breath. Also, does anyone have trouble

swallowing? I do have reflux but I can push on a

vertebra in my neck that hurts a lot and it mimics how

I feels when I have trouble swallowing sometimes.

Enough complaining and questions for one night. Your

help will be appreciated.

November 12, 2004

I do not believe that the medical community has in any way linked PA with breast

cancer so we shouldn't jump to conclusions. This year, 216,000 women will be

diagnosed with breast cancer in the US alone. Very few of these women have P or

PA. It is certainly possible to have both P/PA and breast cancer, but there is

not necessarily a causal relationship. The body's ability to fight cancer cells

may be hindered by our whacky immune systems, but so far there is not a proven

link that there is a relationship between PA and breast cancer so we shouldn't

confuse people by suggesting that there is one. In addition to the 216,000

American women who will be diagnosed with breast cancer this year, 1,500 men

will be diagnosed so it is important for the men on our list to realize that

this is not a women-only disease. One out of eight American women will have

breast cancer during their lifetime. It is not about having PA.

Early detection and treatment are key. Fran, that means no more putting off

mammograms. 40,110 women will die of breast cancer in the US in 2004. Most of

them didn't have to. Breast cancer is VERY treatable if detected and treated

EARLY. It can kill if it is not. Although this is not a breast cancer list,

the health and well-being of our list members is important. Please educate

yourself about breast cancer. www.komen.org is a great place to start! It could

save a life - maybe your own.

Wishing you wellness,

Kathy F.

November 12, 2004

Fran you are such an inspiration ! Thanks for sharing and oh how I wish I could

give you a pain free hour!

hb

RE: [ ] Anyone been diagnosed with breast