IBC Message Forum ??

Roz · 09-25-2006, 03:16 AM

I too am an IBC-er, but I find more difficulty on this site trying to sort out who is metastatic and who is not, especially when reading about statistics on recurrence etc. I find it more difficult to wade through the messages looking to see a response from someone who is metastatic (same as me) than any thing else. Herceptin users (metastatic that is) are Herceptin users, IBC or not.

vickie h · 09-25-2006, 03:50 PM

Hi Joe,

I would love a seperate IBC site, I agree with Sandy. I feel somewhat lost among the crowd and would really like to connect to other IBC's. I love the Her2 support, but IBC is in a family of its' own. Sometimes we feel there is no one to talk to as it is the rarest form of breast cancer. I will stay on this site whatever you decide, but please count me in as a YES! Thank you and God Bless, Vickie H

Christine · 09-26-2006, 12:33 PM

Vickie
Sandy H is an important asset to our group. She has become very knowledgeable in her diisease and does her advocacy in her community and on our website. She also is a recent reipient of the new Tykerb chemo . Sandy has been an ambassador for our group as she has travelled with us to the San Antonio Breast Cancer Symposium for the past 3 years on her mission to update any info on IBC. The next Symposium in Texas is in Dec. We will be there, and will update any info obtained there by the oncological researchers, as part of our mission to keep us all well informed about future developements.
It is always a good idea to educate yourself about the IBC form of HER2 brest cancer.
Hugs,
Christine

Sandy H · 09-26-2006, 08:21 PM

Christine thanks for sharing this information. You and Joe have been a big part in keeping me up to date on this disease! I am not sure if I would still be here if it wasn't for you both. The Her2 support has been my life line sent by God. Even my husband tells his friends this. This disease is changing I can see it in the 5 years I have been on this journey and that is HOPE for us all! New drugs are working, word is getting out, people need to know the symptoms and get them checked out ASAP! Even my oncologist asks me questions and is always comparing info with me. He is very anxious for Tykerb to get released and tells me I will probably be the first to know and I told him I think Joe and Christine will be!!! He said he wished all his patients were as proactive his job would be much easier especially the IBC'ers where no two patients are the same. I am looking forward to this forum and hoping to meet more IBC'ers. Again thanks Christine and I can hardly wait to see what is new in San Antonio this year. May God Bless you and Joe as you are on a wonderful mission here. hugs, Sandy

tousled1 · 09-30-2006, 10:37 AM

I do not have IBC but feel that it would be great to have a separte place for IBCers. I know that I would be lurking there as well.

vickie h · 10-03-2006, 04:41 PM

Thank you, Kate. I feel it is a great and neccessary thing to have a seperate forum for IBC. It is not at all the same as other cancers. Much love anf hope to you, Vickie H

simimom · 10-10-2006, 06:43 PM

I would love to see an IBC forum. I've checked out other IBC sites, but they are very depressing. Everyone here is very positive and uplifting, so I'm sure the IBC site would be too. We IBC'ers really do need to stay on top of our disease and any new research/treatment regarding it.