IBC Message Forum ??

[Joe]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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]

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.

[Joe]

Well this is your forum...please use it.


Rergards
Joe

[Sandy H]

Joe is there someway of putting this out there for more people to see? If I didn't know it was here and missed the posting where you announced it I wonder how I would know about it. Maybe, I am missing something here. Sandy

[vickie h]

Hi Sandy, I agree that this is hard to find. Maybe there are not many with IBC that know about it or possibly go to other sites. Hope you are doing well. Love, VickieH

[vickie h]

Hi Sandy, I agree that this is hard to find. Maybe there are not many with IBC that know about it or possibly go to other sites. Hope you are doing well. Love, Vickie H

[Sandy H]

Thanks Joe, as always you and Christine listen to our needs and take them to heart. This is so much better and easy for those of us to find. I think we will see more traffic on this site as time goes. Thanks again for all your hard work. Sandy

[peytons mom]

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

Melissa

[lexigirl]

Joe and Christine,

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

Lexi

[sarah]

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