IBC Conference

tousled1 · 10-11-2006, 01:33 PM

Breast Cancer.org is having a conference, here's the info:

Inflammatory breast cancer (IBC) is a rare but aggressive form of breast cancer. Because it can look and act differently than other breast cancers, it can be challenging to diagnose and treat. But over the last 30 years, IBC treatment has improved as doctors have learned more about the disease. Researchers are studying a variety of new ways to treat IBC, including gene therapy and monoclonal antibodies.

Join the conference next Wednesday, October 18th between 9:30 p.m. and 11:00 p.m. Eastern Daylight Time (EDT)* (2:30 a.m. to 4:00 a.m. GMT October 19th), where Gabriel Hortobagyi, M.D., F.A.C.P., Thomas Buchholz, M.D., and Jennifer Sabol, M.D., F.A.C.S. will answer your questions about inflammatory breast cancer.

To join the conference, go to www.breastcancer.org any time between 9:30 p.m. and 11:00 p.m. EDT* on October 18th and click on the "Join Conference" button. No special software is required. A transcript of the conference will be posted on our site by October 27th.

vickie h · 10-12-2006, 05:55 PM

Thank you, Kate, for the info. I will mark that on my calendar. How are you feeling? I have been on Herceptin since March, 2004. I am stage IV her+++, er-pr-. I'm currently on Navelbine/Herceptin weekly. Waiting for FDA approval of Tykerb. Much love and prayers, Vickie H

tousled1 · 10-12-2006, 09:39 PM

Vicki,

Hopefully you won't have to wait too long for Tykerb to be approved. I'd doing pretty good. Been on Herceptin since June and must admit that Herceptin and I just don't like each other. I'm going to continue with it for my year barring any unforseen circumstances. All the best to you.

daughterdenise · 10-13-2006, 01:47 PM

Hi there!
I'm Denise-I'm a 30 year old daughter of the most amazing woman on earth. Her name is Karen, she's 56, and she has IBC. Diagnosed in April 2005, she's been treated with Adriamycin, Taxol, Cytoxin, and Herceptin, as well radiation and a right side mastectomy all in the last 18 months! I've been her primary care taker, and she moved in with me when the chemo took it's toll. We are Tennesseans and she is receiving great care through Vanderbilt Hospital. She was supposed to complete Herceptin treatments in early September and we were looking forward to putting all of this behind us. Because we were so close to being done with all of her treatments, and all looked well--she encouraged me to go back to school to get my masters--something I put on hold when she was diagnosed. So I moved to Boston at the beginning of last month to finish school. But just a few weeks ago, a couple of suspicious looking spots appeared across her chest, and they were biopsied. The cancer has metastisized. As you can imagine, we are so disappointed. She is scheduled to begin Navelbine on Monday. Can any of you tell me what to expect as far as side-effects go, for Navelbine? Is it as bad as Adriamycin and Taxol? I've been thinking about quitting my program to move back home to take care of her. When I asked her if she wanted me to come home, she said "no," and the only thing that keeps her going is knowing that I'm here chasing my dreams. But my heart is heavy being so far away from her as she starts this new treatment schedule. I'm just wondering how bad it's going to be and practically, how much care will she need on Navelbine?
Thanks for reading our story, and anything you can tell me about Navelbine would be really helpful. Blessings to you all of good health and peace!

vickie h · 10-13-2006, 02:40 PM

Hi There!
I started Navelbine in July of this year. I was diagnosed in Feb of 2004 and this drug has been the easiest to take so far. I get low white counts which I take Neupogen shots for (I give them to myself for 3 days after chemo), some hair thinning (but the great news is we get to keep some hair!), constipation (which can be remedied with a laxative) and fatigue. It sure beats the Taxol, Taxotere and A/C as far as side effects go.
I will be on Navelbine until January and I will do a PET scan at the end of this month to see how it's working. I am on it for 3 weeks, off for 1 week, etc. Is your mom also getting herceptin?
Please send her my love and prayers and tell her there are many options still. I have been at this for almost 3 years, but am so blessed to be here today. Your mom has a wonderful daughter who loves her! Let me know how she is doing. Much love and hugs to you, Vickie H

daughterdenise · 10-15-2006, 03:24 PM

Vicki,
Thanks so much for sharing with me. Yes, my mom will be on Herceptin also. She is getting the Herceptin once every three weeks and the Navelbine once a week. Herceptin has been fairly easy on her system, but it always wears her down physically for four or five days. We're nervous about starting this tomorrow, but I shared your post with her, and she was really encouraged! I'm glad to hear that it's not as bad as the others. I'm really hoping the side effects are minimal for her, like yours have been. I'll be praying for you this week and hoping for the very, very best for you!!
Denise

Sandy H · 10-15-2006, 04:01 PM

I was on Navelbine for a short time. I found it to be an easy chemo compared to the others. I had a terrible craving for sugar. It did not work for me so did not stay on it for long. I have known those that have stayed on it for months and did very well with it. Wishing your mom the best. hugs, Sandy