Support groups for lymphoma patients

@jeanmwagner Welcome to Mayo Connect. I see you are a new member.
I have lymphoma, was diagnosed 2yrs ago. I came to this social site looking for the same. There are several other members on here too, with various types of lymphoma.
Which type of lymphoma were you or a loved one diagnosed with? I have follicular lymphoma its a stage III.
I am also tagging @colleenyoung she has been wonderful with helping us find answers and solance in our disease.

Hi! I am happy to find your note so quickly. I just learned about “Connect” from the Cancer Center in the Gonda Lobby. I am a 15 year ovarian cancer survivor, I can’t believe it is 15 years! - I am very blessed. My name is listed someplace under a support group for OVCA patients. I had a call today from the husband of a lymphoma patient, they were hoping the support group was for lymphoma patients. He had spent quite a lot of time searching for a group. I told him I would do some looking and make a few calls to see if I could find something. The Cancer Center told me about Connect - I was not aware of it and am happy to find it and am impressed with the site! I called him back later to tell him what I had found so far. I will call him again tomorrow to let him know I have a reply! He was going to check out Connect, so he may also have found your note. They were hoping to find a group that would meet in person. Maybe someone knows of a group, but if not, perhaps this site will help help them. I am sure they will be very grateful for the support offered here. I will keep checking back for updates.

Thank you for being a mentor, and congratulations on being a two year survivor!!

Jean

Just read about a support group for lymphoma patients, and wondering if I could be connected to other people that have been diagnosed with Amyloidosis?
Thanks

Hello @carolynaune. Here is a discussion I think you may enjoy looking at, https://connect.mayoclinic.org/discussion/treatment-for-amyloidosis-and-multiple-mylemoa/. It has members discussing both amyloidosis and multiple myeloma. I suggest clicking on the link and reading through some of the posts and introducing yourself where you feel comfortable.

@jeanmwagner, thank you for your post about lymphoma support groups. Although this may be a virtual meeting space, I think you will be happy to see the support and connections that are made on Connect. We have had many members in various groups forge connections and meet in-person when the opportunity arises. It is great to hear that you were told about this group by the Cancer Center in the Gonda Lobby.

Congratulations on being a 15-year ovarian cancer survivor, that is great. There are quite a few discussions taking place on ovarian cancer. You can find them in the Cancer group, https://connect.mayoclinic.org/group/cancer/.

@jeanmwagner, I hope to see you and your friend join our discussions. If you are comfortable sharing, were you looking at the group because you are also diagnosed with lymphoma, or the person you spoke with was?

I found a very active support group on Facebook: Non-Hodgkins Lymphoma Support

It is very good to see this group. I was recently diagnosed with T-CELL ALL. Does anyone else have this. It doesn't seem very common so I'm not finding a lot of info. My Oncologist wanted to put me on CHOP-R and Brentuximab. I said no. I want to go to Mayo. Waiting for referral

Can anyone provide a f/b on Brukinsa ? I am male ,89 ys old., diagnosed w/Lymphoma about Apr,2025 and started on Brukunsa 1 yr back .... it clearly is powerful meds but I feel visibly better on the day when I do not take one

Hi, @briefml Welcome to Mayo Connect.
You’re right, Brukinsa (Zanubrutinib) is a powerful medication which is helping to keep your lymphoma in check.
It’s a targeted drug which works by blocking signals that promote the growth and spread of cancerous white blood cells.

As with most all of our cancer fighting drugs it’s possible to experience some side effects. Then it’s a matter of how well they’re working and weighing the quality of life if there are side effects with the level effectiveness.

There are quite a few discussions in Connect with members taking Brukinsa for their cancer treatments. This medication is used for more than lymphoma. So not all of the dicussions will be relevent to your lymphoma. But the side effects or comments will still be valid. I’ve posted a couple discussion for you to get you started.

~How are you managing Brukinsa Side effects? (With members @sveta25 @kobebeef2026 @champ9810 and many others who are on the medication)
https://connect.mayoclinic.org/discussion/brukinsa-effects-after-more-than-a-year/
~~~~~~
~Who takes treatment Brukinsa? (With @newwaldenguy @usccrowley and others…
https://connect.mayoclinic.org/discussion/who-takes-treatment-brukinsa/
~Here’s a list of dicussions in Connect regarding Brukinsa. Click this link and it will open the menu for you: https://connect.mayoclinic.org/search/

~I repeated the search with Zanubrutinib:
https://connect.mayoclinic.org/search/
It does sound like Brukinsa is working well for you over the past year.
What type of side effects are you experiencing? Have your blood numbers, such as hemaglobin and platelets been staying in the normal range?

@travelgirl
Follicular lymphoma