Care Giver Support Group

[Audrey10]

As previously reported I was first diagnosed with CLL 6 years ago...had Chemo 3 years ago and was in remission up until March of this year. Started Imbruvica 29 days ago..I am doing very good. No side effects and still very active. My issue is my Spouse needs people to talk with about what I am going through and what lies ahead. Is their a forum for her? Thanks and Happy Memorial Day🇱🇷

[Jm954 Administrator]

AdrianUK was thinking of setting one up as a Facebook group. I've tagged him so hopefully he will respond and give you an update.

Here's his post: healthunlocked.com/cllsuppo...

[Audrey10 in reply to Jm954]

Thanks, will forward info onto my wife

[AdrianUK in reply to Audrey10]

This group is small but operating. And my wife finds it helpful. I’m not a member (just helped to set it up)

[Cllcanada Top Poster CURE Hero]

Lisa Minkove has well established women's only group for CLL patients and some caregivers

Lisa tragically died during a CAR T cell transplant last month, but her daughter and other friends with CLL are taking it forward...

facebook.com/groups/cllslln...

[Audrey10 in reply to Cllcanada]

Thanks, will forward info onto my wife

[tomhenry2487]

Where are you located? The CLL Society and the Leukemia and Lymphoma Society both sponsor live support groups. I find this very valuable for both me and my spouse. I’m a pharmacist so I have pretty good understanding of disease and options but I still learn every meeting. My wife has no healthcare background so it’s been extremely valuable for her

[Audrey10 in reply to tomhenry2487]

Thanks! I live in South Carolina...actually have an appointment with Oncologist this week. Will check with him regarding local Leukemia Society meetings.

[lankisterguy Volunteer]

Hi Audrey,

Your profile lists USA so here is the list of cities that have in person support groups.

(I help with the NY City group).

cllsociety.org/newly-formin...

and the calendar of when and where each meets:

cllsociety.org/events/

other organizations like Cancer Care:

cancercare.org/support_groups

facebook.com/cancercare/

American Cancer Society

cancer.org/treatment/suppor...

and Gilda's Club

en.wikipedia.org/wiki/Gilda...

have support groups for a broad range of cancer patients and care givers.

Len

[Audrey10 in reply to lankisterguy]

Thanks for info. Appears my city does not have a chapter but I will check with my Oncologist this week. My wife has found a group online and it's been a great start for her to talk with other spouses whose husbands have CLL.