Just can't believe it...

Gymgirl2679

I have to write to you....i too was diagnosed with IDC april 2010 stage 2B grade 3, 3.5 cm er/pr + 4 nodes removed with angiolymphatic vessle involvement.  I have lumpectomy, followed by 6 mo of chemo, A/C x4 abraxance x 12 followed by 30 rounds of radiation.  Between my A/C treatments and my dailys i developed a rash, not on the surgical site, was red, itched, burned, some nipple discharge, had scab on nipple entire time, then developed holes, which i now know is the "orange peel" look so I go to my BS re this and she asked "are you tanning" really while on chemo and just one breast! So i go on, still saying something is wrong, so I google all the symptoms, IBC comes up, never heard of it before, I call my oncologist immediately and tell her and she says "let me guess you think you have IBC"  I say I dont think i do i just think i have enough symptoms we should do a biopsy, she got so mad and said you DONT have IBC, your on treatment now and its doesnt happen this way, puts me on antiobiotic 2 rounds, nothing changes, then says i have cellulitis, which i did not.  They refuese a biospy cuz they say its NOT POSSIBLE, i finish my treatments including radiation but every week i tell them something is wrong but they wont hear of it, tell me if i did have IBC i am getting the treatments they would do anyway!  UGH so i finish my 9 months of treatments then go immediately to Philly to see a specialist and he says clinically i have IBC but the biopsy doesnt show cells, I worry radiation may have given a false negative? I still look the same, bright red, orange peel look, burn, itch, tingle, I have been finished with radiation for over 2 months now so i am going back to Philly for another biospy.  My MRI and U/S only showed thicked skin as of Jan 2011,  I am worried that all my treatments are playing with the results.  I still have a gut feeling this is IBC, clinically i am very positive.  I could be the poster child for IBC pictures! Could my radiation keep this from going out of controll?? I am very worried it will be to late by time the radiation effects allow for a true biospy result.

deborrob

Gymgirl, there is another lady on here - Faith316 - who got IBC while still doing radiation.  Look back at the earlier posts.  I don't know why you are coming up negative on your biopsy, but I'd certainly look for a second opinion if I were you.

I have a feeling, of course I have no proof, it's just my idea, that this has something to do with the radiation.  I know the medical world would shout me down, but mine started as soon as my skin had healed from radiation.  It started in the area where they did the radiation boosts and spread all over the radiated area.  In my mind, it is something to do with the trauma caused to the skin during radiation.  I burned very badly and lost a lot of skin.  As soon as it came back, the rash started.

deborrob

Gymgirl,  The post above by God_is_good is correct.  My surgeon took my punch biopsy from the area with the most thickened skin.  The fact that you have the thickened skin at all is probably a pretty good indication of IBC.  Go to someone else as soon as possible and get another biopsy done.  That would be my definite recommendation. 

deborrob

Danni1 - thanks for your good wishes and thanks to all the ladies on here who have given me their support.

As an update, I started chemo last week.  Onc put me on Ixempra and Zeloda.  Unfortunately, I have had such a bad reaction to the Zeloda that she has taken me off it again.  I was dizzy, kept nearly passing out - it was bad.  So we are sticking with Ixempra for now.  In the mean time, I have put in all my paperwork to go down to MD Anderson for a second opinion.  Just waiting for them to get back to me.  The rash is less "angry" although I haven't really seen it diminish yet.  It just seems to have calmed down and the color is not so vivid.  It's still very itchy though.

deborrob

I have a question for any ladies who have been through chemo for IBC.  Did your rash spread at all once you started chemo?  I have had one treatment of Ixempra.  Tried to take Zeloda, but couldn't tolerate it so my doctor told me to stop and just go with the Ixempra.  I feel like my rash has spread a little even since I've been on chemo.  Most of the rash is not as "angry", but I feel that has not stopped spreading.  Anyone have any experience with this?

mrsnjband

My IBC rash did get a little bigger during chemo, but the texture changed.  It became more like normal skin.  By the end the rash was gone but the skin was still discolored from the rash. I hope this helps you. NJ

anonymice

My rash was the last to leave...the swelling was first, and then tumor retreated (as shown by thickened peau dorange areas).  The swelling started retreating the first three weeks, and everything was gone by 2 months.  Maybe three for the entire rash - first, it turned brown rather than pink and faded off slowly.  For a while at the end, it would be gone but if the breast was touched it would come back.  The rash was definitely the most stubborn symptom.

lindaa

My IBC breast grew while on DD AC chemo, the color is dark.  It can turn a little pinker right after tx, but it doesn't last more than a day or two.  i am having issues with chemo right now as we can't seem to find one to work.  I begin a trial next month of gemcetabine and MK1775 Wee1 inhib.  I know liitle of it but my options are waning.  I am trip neg and have to be off chemo for 3 weeks before starting - really not liking that part.

deborrob

It's strange, but I can't wait for my next chemo.  Last year I did dose dense, every 2 weeks, so having this one every 3 weeks seems strange.  It kind of seems like too long to wait to get more chemo in me and stop this rash.  I've only had one so far, and I still feel like the rash is spreading slightly.  I am booked to go to MDA on March 23rd for a second opinion down there on my treatment options, so we'll see what they say.  For now, I'm trying to start researching and preparing myself for mastectomy at the end of this. 

lindaa

Good for you Deb on going MDA.  Please remember to come back and let us know.  I am going to go for this trial, but my next move might be either MDA or Fox if the results are the same.  I am at dana farber in their ibc clinic so I feel i am in the right place. 

I agree with you on the 3 week thing.  That just seems weird.  Of course my lxempra was a 21 day cycle, but then she dropped me to weekly just monday.  So my last dose was the weekly not the bigger 21 day one.  Then she called about the trial and said I had to be off chemo for 3 weeks.  Well great, if I had gotten big dose I wouldn't be so nervous.  I asked If I could go in next week for the big dose and then do my waiting period, but she felt if its not working why bother and I could be creating a more chemo-resistant cancer.  So I'll wait and pray and eat lots of veggies.

germangal

LindaA;

if you do decide to check out Fox Chase, you might ask to see Dr Paula Ryan. She was my onco at MGH before she recently relocated her practice for marital reasons.  She is focused on TN's but also has lots of experience with IBC ladies and was on staff at DFCI as well.

Karen

lindaa

Well, difficult to say how i'm doing.  I have pleural effusions now, and got some kind of infection so I am back on the vancomyiacin. i'ne been in/out of hospitals for past 2 weeks.  I didn't make it through my wait period without picking a few new buggers along the way.  It is what it is.  Very weak right now.  My lungs are looking better.  I've had 2 treatments of the gem/mk1775.  very naseuous and my wbc are high (infection) and my rbc is low.  I'm just plowing through as best as I can.

 Deb - how are you making out with MDA?

leisaparis

praying for a speedy recovery for you Linda

lindaa

My new trial with this mk-1775 drug was a bust.  Taken with Gemzar, but it kept flattening my blood platlets.  So between waiting period to start trial and missed treatments so I could recover I now have plueral effusions and other spots.  My doctors now give me no hope.  I haven't even tried all the chemos yet.  I thought dana farber would be more aggressive but now I am looking for a new onc again.  Maybe md anderson.  I just did the self referal form.

Faith316

Linda, I am sorrry to hear this.  Yes, go to MD Anderson and see what they can do to help you.  God bless you.