IBC Message Forum ??

Joe · 09-13-2006, 08:26 PM

We have several members on this site who have IBC. IBC like HER2 has its own set of rules.

Is there any interest in having a seperate message board for IBC patients?

Regards
Joe

madubois63 · 09-14-2006, 05:18 AM

Hmmm...a separate message board just for IBC??? Joe - I really don't think that is needed here. There are other sites specifically for IBC, but they just don't get the traffic needed to keep them going. Some of the sites are also VERY upsetting. I'd rather post on a board that gets lots of uplifting support. Although IBC has some differences, it also has many similarities to other bc's. I have learned that cancer is cancer whether it be IBC, ILC, IDC or leukemia...It all sucks! I welcome other opinions on this.

lexigirl · 09-14-2006, 08:24 AM

Joe,

Thank you for the thought. The tx I have received so far seems to be the same as tx for other bc's. I do appreciate your hard work for sure!

Lexi

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.

peytons mom · 10-20-2006, 07:14 AM

I am a her2 with IBC and read your site alot for info. Please keep the IBC section. I will use it!

Melissa

lexigirl · 10-20-2006, 04:00 PM

Joe and Christine,

Thank you for the IBC forum. All of your research is very much appreciated.

Lexi

sarah · 10-30-2006, 07:48 AM

AS an HER2+++ person with a friend with IBC, I feel more comfortable asking IBC questions here than on an IBC site where I would feel like a stranger - you're my family!
I have a couple of IBC questions:
1. who's the Dr. Slamon for IBC? in other words who and where is the best and most knowledgeable people?
2. Do you feel supplements have helped you and if so, which ones do you think are good for someone who is ER- & PR-?
3. my friend will join a tyberb trial here in Marseilles which is very exciting and I'm wondering if there are any supplements that would interfer with it? or increase its efficacy?
I know next to nothing about IBC except that it's aggressive so I'd appreciate any and all information so I can get up to speed on it for my friend's sake. We support each other through our HER2 and chemo treatments.
thanks
sarah