Dx w/IBC, 16 nodes +, HER2+, age 34

Hello all. Is there anyone out there who is same boat. I have had no response to chemo so far and have just started on Xeloda in combination with Herceptin. I am currently on my 13th day of first cycle and have had no side effects at all. I see onc on the 17th of this month at which time she will determine whether to keep me on this plan or put me in clinical study. Are there any survivors out there that can contact me with some hope.

Hi Martha,welcome to the website!:-)

What does IBC stand for?

Good luck in your treatment. Please keep us updated. Hugs

Hi there, does the IBC stand for Invasive or Inflammatory. If Invasive I have been doing this since 1998, had a radical mastectomy with 16 out of 16 lymphs all positive and not hormone responsive. I had the best results with Herceptin and Navelbine along with Radiation. My relapses have always been lymph glands in the neck and 2 bouts of skin mets. I was 44 when first treated. No history of BC, non smoker drinker and always watched what I ate. I did have Glandular Fever about a year before I got BC. At the moment I am on Herceptin with Aromasin (Exemestene)and just had 10 radiations for another lump in the neck. My CA-15 tumour markers have always been under normal and last was 9.Hope this gives you some hope.

Hugs Lyn

When you say you have had no response to chemo, does that mean you were on something else other than the chemo you are on right now. When I was originally diagnosed, back in '93, I was on Adriamycin and Cytoxin. I too had a lot of lymph nodes involved and had a totoal radical mastectomy.

Yes, I have been on six different types of chemo. I did the Adriamycin and Cytoxin along with another one at the very beginning before my Mast. I did them for four rounds. After my Mast. I was put on Taxol, Carbo, and Herceptin. I did them for six cycles and at the end of that which was about a month and a half ago, they found cancer in more nodes under the left arm, chest wall, and it traveled to nodes under the right arm as well. Right now I'm doing Xeloda and Herceptin. I'll find out on the 17th if I stay on this or go into a clinical study.

Thank you so much, yes that gives me some hope. The IBC does stand for Inflammatory Breast Cancer, which is a very invasive and aggresive breast cancer. I sure do hope that they hit on something that actually works for me. Where is it that you were treated at, and were any of your treatments clinical studies?

Hi Martha,

Are you on or aware of the websites dedicated to IBC such as ibcsupport.org and the one on the IBC Research site. All the woman and caregivers are dealing with IBC and will have plenty of info for you regarding chemo specifically for IBC.

Hi Martha: I was Dx. with IBC 03/01 had Adm/Taxatere then radical Rt mastectomy with graft to chest wall because it was in the skin. I also had a simple Lt mastectomy (I chose a double mastectomy because my risk was high for it to go into left breast). Before the graft was healed it took 9 weeks I had skin mets. I had 44 positive nodes out of 45! I could not have radiation because of the skin mets being resistent to it. I had 5 treatments of Herceptin and Taxol following surgery. It worked great for me and cleared skin mets all up. Five months later had recurrence of skin mets and was on Miltex (a topical solution from Germany) for 12 weeks. It didn't do the trick like we wanted and I got some bad burns, so back on Herceptin, Taxol and carboplatin have 3 more treatments (2 cycles of 12 treatments)to go then will have skin biopsies to see if its all gone. I have done well considering my prognosis at the beginning. I asked my doctor Friday about exemestene and he said its not for me because I am ER/PR negative. Because I was negative I was limited on the drugs available for me. None of the hormonal drugs will work. I am doing well at this time so never give up. I have had times it didn't look good and never thought I would still be here and doing this well. Maybe, you need another opinion. I will keep you in my prayers. Hugs, Sandy

Thank you so much Sandy for all your information. It helps so much to hear from someone with the same kind of cancer. I've just come off of Carbo, Taxol, and Herceptin. They said the Carbo and Taxol didn't help but I continue on my Herceptin along with Xeloda. I go down to the University of Indiana Cancer Research Center on St. Patty's Day this week. They will determine whether I stay on the current treatment or get put into a clinical study on some stuff that does not have a name yet. It has been assigned the ID# GW572016. One more question for you, have you ever had mets to any other place in your body, and where were your nodes that were positive taken from? I just recently had mets to my right axxilary nodes. My cancer originated on my left side. Only that breast was taken. Hope to hear from you soon.

Hi Martha: The nodes that were positive were under my right arm the side the cancer was on. I have never had nodes any where else swollen. My last scans were clean for bones and organs. Will repeat scans in May or June. So far have had it in skin and lymphatics and doctor told me that is not life threatening. I do wear a jobst sleeve as precaution for lymphedema. I do have some fluid and its goes from shoulder to chest wall to abdomen. I drink lots of water, avoid salt and try to rebound daily to keep fluid moving. Riding for long periods causes fluid to pool. I hope I have been helpful. How long are you a survivor? Good luck and God bless you. Hugs, Sandy