Waldenstrom macroglobulinemia: What can I expect with chemo?

Hi @mrperezy50 Welcome to Mayo Clinic Connect. It’s easy to feel alone when you’ve been diagnosed with a an uncommon blood cancer. There are several members in the forum who also have Waldenstrom macroglobulinemia and have shared their stories and journeys. So you’ve come to the right place to find answers to your questions.

I’d like to introduce you to @ejrquast who is a font of information on WM and has provided links for International Waldenstrom’s Macroglobulinemia Foundation, IWMF, at https://iwmf.com/
List of Doctors who specialize in WM. https://connect.mayoclinic.org/comment/692115/

There are actually several discussions in the forum for WM. I’ll provide some links where you’ll meet fellow members @newwaldenguy @kincarnati
@jproctor. To find more discussions, simply type in WM in the search box at the top of the page. Some of them are dated but you can reverse the order with the “Oldest to Newest” button under the opening statement.

Waldenstrom macroglobulinemia: What to expect during watch & wait?
https://connect.mayoclinic.org/discussion/waldenstrom/
https://connect.mayoclinic.org/discussion/waldenstroms-and-amyloidosis/
You mentioned that you aren’t having any symptoms. Was this found with a random blood test for a physical?

I'm sorry to hear of your diagnosis. Though I'm still watching and waiting, I find the material available from the International Waldenstrom's Macroglobulinema Foundation (www.IWMF.com) very helpful.
Best wishes

IWMF is dedicated to supporting and educating everyone affected by WM while advancing the search for a cure. Waldenstrom's Weekly is a free service to WM community members to share WM related news and events. Click on downloading photos at the top to view all content. For more information, email info@IWMF.com or visit http://www.IWMF.com

Yes, I went in for a yearly physical, my doctor did complete blood test and found some abnormally with my red, white blood cells, and platelets.

Hi Mr. Perezy,
There is a very active support group for people with WM on Facebook. I hope you'll join us.
https://www.facebook.com/groups/wmsupportgroup
If you don't have symptoms, you may not need treatment yet. WM is a very rare disease - it represents less than 1% of cancers seen by the average hematologist/oncologist - even experienced lymphoma doctors may not be up-to-date with WM management. All of the doctors listed in the IWMF directory take a special interest in WM and are involved the latest WM clinical research. WM treatment is very seldom an emergency. Take enough time to figure out the best way forward so you'll have the best possible outcome.
All best,
Meg

The IWMF website contains a directory of hematologists/oncologists who take a special interest in WM and are involved the latest WM clinical research.
https://iwmf.com/wp-content/uploads/2022/04/IWMF_PHYSICIANS_DIRECTORY-2.pdf

@megmangin Welcome to Mayo Clinic Connect. Well, I must say you probably hold a record, being a member for almost four years and this is your first post! We're glad to have you here!
Ginger

Waldenstrom’s
Husband diagnosed two years ago and has tried four different oral meds but can’t get IGM below 3200. Dr is now recommending chemo. Anyone with a similar story eho has found something other than chemo that worked for them?

Welcome @aann, I moved your message about starting chemotherapy treatment for Waldenstrom macroglobulinemia to this existing discussion on the same topic that @mrperezy50 recently started. See:
- Waldenstrom macroglobulinemia: What can I expect with chemo? https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed/

I did this so you can read previous posts and connect with helpful members like @newwaldenguy @kincarnati @jproctor @nsh @ejrquast and many others.

Aann, do you know what chemotherapy regimen they would like to start you on?

I am sorry to hear about your husband’s lack of response to oral meds. May I ask, when your husband had his bone marrow biopsy, prior to initiating treatment, did they discuss the mutation results with you? Those results can guide us in the treatment decisions.

Hi, thank you for putting me in the tight group and for the FB link. It is my husband who has it and his doctor is giving him one more month before starting chemo so I don’t know what type yet.

Hi, my husband had his bone marrow exam twice in the last two years. Once to confirm diagnosis, the other before he started on a trial medication. I don’t think we knew to ask specific questions. Are there some we can ask on his next visit, in four weeks?