~Inflammatory Breast Cancer~Re: Rash
 

Major questions are:

~Did your rash ever come back? Ed's never came back, nor mets to ribcage/chest cavity

~Where were mets located? *All Bones-especially Spine
*Brain (3 seperate times-WBR, Gamma Knife)

Just curious my dears>>Believe51

Hi Marie,

I had a small pimple just above the lump in my breast. After my mast., it had spread into a small rash. I noticed a response to tx after about my third A/C. Once I started the herceptin it disappeared. They also radiated the heck on that area. I check every day. So far so good!

HUgs,
Lexi

Hey Friend
 

Marie,

Since I went to Mexico for my dx and tx's, things were done a bit differently. ie: surgery first, then chemo. Just A/C 4 rnds.

I never had rads to my chest area after MRM. My choice the only reason.

My Inflammatory only showed as the orange peel type. From lower third of nipple area, to whole underside of breast. (C-cup) I also had two tumors. One visable, both inner quads, top and bottom. 6pos nodes of 26.

I've never had any type of Inflammatory recur since MRM Jan. 2000.

July 2002: Mets to mediastinal node/s (one partially biopsied) w/ 'spot' on pelvis and lung. Nothing ever came of those.

Sept. 2002: Mets to brain. and you know the rest there, I think. 18 tx'd with rads, all focalized. Current six lesions for 39 mos. on Xeloda/Temodar. W/Tykerb added last year.

too much info??? or what you wanted?

best to you both,
pattyz

Hey Marie,

After my initial dx, I presented with skin mets outside the rad field. This was different from the rash that I initially presented with. I also presented with a met to the sternum and a met to my opposite reconstructed breast.

Pattyz
 

Exactly what I wanted, babe. You are one tough warrior who oozes courage and feist. Thanks>>Believe51

PS: Let us all break the rules!!

Kim
 

Had to comment on that picture. It is beautiful and helps me to put a face to the journey. Lots of love always>>Believe51

PS: It also makes me realize that I need to get my act together to post mine soon too.

Marie,

oh good :)

I do know that sometimes I get a 'bit' wordy ie: diarrhea of the mouth!

Since the 'stats' @ the five yr mark for Inflammatory are not nice...

Nor the 'stats' for brain mets at all...

add in a bit of Her2+++...

And I am just one freaking lucky "DOB" being just shy of nine years out from the get go and six w/brain mets. I believe this is so.

Ok, I'm a little of an info junky and 'control freak' in days of old. But I do not believe being a 'warrior' has had anything to do with my informed dumb luck. My apologies to those who ARE warriors.

May we all be blessed with similar LUCK!!!
(it sure doesn't hurt).

xoxopatty

p.s. "DOB" = the feminine of "SOB"

Gee Pattyz - I thought it meant Date of Birth ...

Dumb luck or whatever kind of luck - we will take it, eh?

Regarding the "rash" question.
I know that SandyH's rash returned. That is why she had to get the Miltex from Germany as the usual drugs did not work and this cream did work.

My "rash" (bc mets) has jumped back on me again... I had 34 rad treatments, was taking tykerb...My entire chest cleared up, and now it is back.... not as large of an area as before..... the Dr. has me on 5fu cream, which I am putting on the mets... they are coming back in the radiated areas... it seems to have "stalled" them for a while...so I guess the 5fu is doing some good very slow ..(as I said before.... its doing its thing.. I guess I am impatient, am tired of looking at them.. my onc. nurse told me not to look at them..very depressing. I came back with.... How can I take a shower without looking at them??
This may sound crazy, but it is hitting me harder this go around with this.... I guess it is just looking at them on a day to day basis.. before the ca was in my breasts, it bothered me,maybe because they were under the skin? but not as much as this is... maybe its because i have to look at them?
I would like to thank all of you folks, for any comments, advice etc.
I do not wish to discourage anyone from any treatments.. if you think it is the road for you, then take it..please do some research before making a decision
my 2 sisters are trying to get me to tell mama her condition...the Dr. is a friend of the family, and wants us to tell mama..
I told my sisters, no, no, no , I will not do that.... they are going to have to get the Dr. to do that...
I should have a few more answers after Monday...
this is so good to have a place to go for encouragement..love, and hopes that we all can beat this beast, once and for all.

Steph...

I just don't want to use the "SOL" any time soon. Perhaps, for me, it would be "SODL"?

When something makes no sense, my usual is to try to MAKE sense. In whatever way I can. In this area, dumb luck works for me.

In many other cases it helps me greatly to hear my friends' words on the subject:

"Don't try to make sense of nonsense, as it will make you crazy."

pattyz