IBC Message Forum ??

Sandy H · 09-14-2006, 10:04 AM

I would like to see a separate message board for IBC however, if it didn't get that much traffic we could do something different. I am always interested in talking to other IBC'ers and looking for those close to me right now there is no one!! There are those that think its not that much different however, my oncologist keeps reminding me this is IBC so we have to stay on top of it with good follow up. This is changing on how it is being treated and with new drugs. hugs, Sandy

chrisy · 09-14-2006, 11:17 AM

I am not an IBC-er. I understand that it is a different animal, and want those who need to connect with each other to be able to do so in whatever way is most supportive to them.
My hope would be, if a separate forum is established, that those who contribute SO MUCH to the main forum (Sandy H, Mary ann and MANY others) would continue to do so. I would really miss the input of so many of our beautiful members.

Of course, I could just go lurk there, too!

Thanks, Joe for continuing to work so hard for all of us.

Ann in Boston · 09-14-2006, 12:17 PM

I agree that the IBC'ers on this list are in the minority and there are other IBC lists such as ibcsupport.org and ibcresearch.org which have 300-400 members and are very active on a daily email basis. It is a very different animal from regular breast cancer. I don't think a separate message board on this list would be necessary.

SherriT · 09-15-2006, 10:54 PM

I would like to see a separate forum for IBC'ers--but I say this mostly because I am an IBC'er and I find it tough sometimes to get helpful and informative information. It's also difficult to locate someone with similarities to myself so it would be great to hear specifically from other IBC'ers. Of course I totally understand if it would just "complicate" (for lack of a better word right now--does the chemo brain ever depart??) this site too much. In any event, thanks for this always informative site and thanks to everyone who contributes to it regularly. Take care everyone.

Sandy H · 09-18-2006, 07:36 PM

I would most certainly, stay on this forum even if an IBC one was started. I am her2 positive and each one of us is different with IBC. I have had e-mails off this board from other IBC'ers wanting a more personal contact. I am o.k. with what ever Joe and the rest want to do. This is a great board and so I am happy either way. Sandy

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