Online group for MBC

[marianne88]

Hi. Does anyone know of a online group for MBC. Thanks

[MissyAnn68]

There are some on facebook.

There are also groups for women on Ibrance or Kisqali in particular.

[marianne88 in reply to MissyAnn68]

Thank you so much

[demanos]

There are several FB groups that I follow. They have helped me a lot and given me a community I can relate to so that I don't have to keep talking to people who don't "get it". Here are seven of them. There are others depending on the medication you are on. I am on Ibrance so I belong to that one. Please explore and see what helps you. Also, in my area there is a Life with Cancer center I attend. I make use of their MBC groups, psychiatrist, psychologist, massage, therapist, etc. Check out these groups and see if they apply to you. Blessings!

MBC - EOL Issues Podfree Zone

Living Metastatic One Day At A Time.(MBC Only)

The Golden Oldies of Stage IV MBC

Metastatic BC Ibrance, Kisqali, Verzenio Group (CDK 4/6 Inhibitor)

Care, Compassion, Comfort: The Closed Metastatic Breast Cancer Group

Closed Metastatic (Stage IV) Breast Cancer Support Group"

Friends Who Like Compassionate Comfort Care

[marianne88]

Thank you so much ❤️

[Wildcat1]

Inspire is a good one. It's for numerous issues but you can choose just to see MBC.

[PJBinMI]

I've been a member of [e-mail] for years. Posts there have dwindled alot since I first joined in 2004--at one point there were over 800 members from all over the world and it was not unusual to have 50 or more posts a day. Now, there are days when nobody posts. I've hoped that just means that there are alot more on-line resources than there used to be. It was created by a woman with mbc and her husband and now is a memorial to her continued by her widower. One of the craziest things I have ever done was fly out to Las Vegas for a long weekend with a few members of that list who I had only known on line. I think there were six of us plus a woman who lived in Las Vegas who joined us for part of the time. Previous notes there are archived and it's easy to search for topics, though there would be alot more info about meds that have been around for several years than the newer ones. Alot of humor there. A few years ago, a member of the list who also belonged to a similar list for those with early bc, began sending monthly notes asking for donations to support the costs of maintaining the website. That is about when membership fell off, or at least that is what it has seemed like to me. I think newbies were scared away, and there really is no charge for belonging to that group.

I've only been in this facebook group for a few weeks and my impression is that a large number of the posts here are about things that raise anxiety; new diagnosis, new meds, new side effects, new symptoms. The bcmets list notes seem wider in scope to me and I really have gotten to know some of the list members from our writings. Just a difference I've noticed.

[alicehblack]

inspire.com/groups/advanced...

link for the inspire board....it's pretty active

[monalbaki]

I get lots of advice from the Inspire MBC group

[MaryJ-S]

IBC.com has an online group also. Just go to their website and you'll see the link!

With IBC you are either stage III or IV.

[marianne88 in reply to MaryJ-S]

So you mean MBC?

[MaryJ-S in reply to marianne88]

Sorry, I should have written in out! IBC stands for Inflammatory Breast Cancer.

[marianne88 in reply to MaryJ-S]

Oh got ya

[tmills64]

I am a member of one called Belong.