CCD & lMBN is PM

I'm sorry my typing is getting bad with my lymphedema that has taken over my right hand and arm.  PM is private message.  A couple of new ladies wanted me to send them some research info and they were not sure about how my response would show up and computer issues in the middle...I miss having good hands.

As for how I'm doing....Ok.  thank you for asking...Nothing has changed much in the last few months on my disease status.  I have skin mets all over front chestwall, back, down my right arm and in my neck. Can you believe you can have breast cancer in your arm? I had to drop out of my hyperthermia/chemo trial because they were not treating all my disease but test spots and the rest of the disease started growing fast.  I do believe this will be a good tx for girls with early IBC in the future.

I see my main oncologist tomorrow and see what he wants to do if anything.  Believe or not they don't want to give me chemo because I'm not toxic from all my 52 chemos and they known chemo will no longer work for me.  I''ve become what they call "chemo resistance" meaning my tumors have been exposed to so many chemo that they have become super tumors and can hide from chemos faster.  They clone themselves to look like healthy cells to hide.

I want chemo even if it works for a short time because this skin stuff is yucky! The smell and pain can be really bad.  I only have about three chemo out of all chemo they use for bc that I havenot already taken at least once, My doctor want to keep these when I get a organ/bone met.  Yes! all that disease and no mets 3 1/2 years later.  Just shows how everyone can response to treatment differently.

How are you this days?

Flalady

Edit to add: There are only three others lady on this site that has what I have. (TN,IBC & IDC, brac-, soft tissue disease) It was great..they were being treated at top clinic's and we could compare tx options,.  I lost my dear sister VickiG this weekend and Pinehouse is very ill. She has mets to spin & brain.  The third is at MDA Houstin and they have stop treating her for the same reason I have.  I really miss my special litte family.