Here's my story: I was 49 when first diagnosed in June of 1996. Two centimeter tumor plus red pitted skin. Had 4 rounds of adriamycin. My hair began falling out on my 50th birthday in August. I had a leftside mastectomy in Oct. Seven out of ten nodes were positive and ibc confirmed so a stem cell transplant was proposed. Went to Yale New Haven Hospital for this on out-patient basis. Had mobilizing Taxol, then Melphalan. Was hospitalized twice with high fevers for a total of 8 days during Nov. and Dec. 1996.
Last drug was to be Thiotepa but I did not go through with it. I'll always wonder if it was the wrong choice but I had lost 60 pounds, could barely speak or see and whenever I called Yale they'd say "come in so that we can check your counts"!!! Come in...?? I could barely turn over in bed! I felt very, very unsupported by them so I did not finish stem cell. As you might guess, this was a very low point for me. (when I recovered my strengh 6 months later I wrote them a 4 page letter outlining my difficulties with their program. It was, I thought, a well -considered, constructive letter. I never got an answer).
In March, 1997 I had 6 rounds of CMF (back with my original onc) followed by 30 radiation treatments. I then went on Tamoxifen. Nine blissful months with no treatment - hair grew back! Then in June of '98, skin mets (red rash) along mastectomy scar. I started Taxol (lost my hair again -amazing how upsetting that is). Taxol appeared to be working. Rash greatly reduced but not gone. In Nov., '98 Herceptin was added to the Taxol treatments. Rash vanished! We thought Herceptin was my "magic". Unfortunately in Feb. '99 while still on Taxol/Herceptin the rash appeared again under my collarbone. We watched it for 3 months. Neither my onc nor I could believe it was cancer again. But a biopsy confirmed the worst.
I'm now on Navelbine. Just had my 2nd treatment today ( June, '99). I'm also going to start Femara today. I guess that having ibc for 3 years qualifies me as a survivor but it's difficult to accept that I may always be on chemo until there aren't any chemos left to try. I'm always hoping that something new will come along before it's too late. On the very big plus side - I do not have mets anywhere else in my body and my onc says that the total cancer in my body is perhaps the size of a pea - a nasty little pea!!
I was a school teacher for 28 years but retired when all this happened. I alwaysthought I'd live to be 75. I STILL think that but sometimes the road is rocky!
One other thing: I found a very good therapist who has helped me to deal with all my worries and questions. I highly recommend this kind of help. I could not relate to the people in 2 support groups I tried. Their problems did not seem to mirror mine. My husband, family and friends have been great but an objective,knowledgeable professional is a blessing too.
Best wishes to all of you on the ibc road. May we all find a cure!
June 10, 1999