Waldenstrom macroglobulinemia: What can I expect with chemo?

Posted by mrperezy50 @mrperezy50, Dec 21, 2022

I'm 40yr old male, just been recently diagnosed with Waldenstrom macroglobulinemia, I have no symptoms. I'm going to start chemo in a few weeks, what can I expect, does anyone have any experience with this cancer or treatment. Any advice will help.

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ejrquast | @ejrquast | Feb 24, 2023

In reply to @aann "Hi, my husband had his bone marrow exam twice in the last two years. Once to..." + (show)

The following is a link to an excellent video from the I.W.M.F. 2022 Forum by Dr. Matous . Hopefully this will answer many of your questions and give you direction for your upcoming appointment.
https://m.youtube.com/watch?v=06gndR0JH-g

ejrquast | @ejrquast | Feb 25, 2023

In reply to @aann "Waldenstrom’s Husband diagnosed two years ago and has tried four different oral meds but can’t get..." + (show)

psue4 | @psue4 | Jan 6 4:47am

Hello. I know you started your first treat in 2022. I just wanted to see how you are doing? My daughter is 43 and she was diagnosed with WM last year. She did about 8 months of chemo. She did well. Tired but did good. Since they gave her a few off to heal, she now is back doing infusions for 6 treatments with Rixtuxan and Chemo. She only had one treatment so far. I hope your doing well. Pam

champ9810 | @champ9810 | Jan 7 11:04am

In reply to @ejrquast "The following is a link to an excellent video from the I.W.M.F. 2022 Forum by Dr...." + (show)

Thank you for the video link, it is very helpful.

rich1964 | @rich1964 | Jan 8 4:05pm

I was diagnosed at 45 years old. I am now 59. I have been through 2 rounds of chemotherapy. One in 2009 at time of diagnosis. I also did not have any symptoms.My first round of treatment was cytoxin pill form and rituxamab intervenes. The first round was the worse but still not that bad. You start feeling flu like after a couple days then gradually goes away just in time for next round. But they do get easier as you go on. My second chemotherapy was in 2022 Bendmustine and rituxamab this one was a little easier but still felt crappy for a few days. Kept working through out both. Maybe a few days off here and there. Stay strong. I feel great still no symptoms. Don’t let this diagnosis get you down. You can totally live a good long life with this cancer.

jessabell | @jessabell | Jan 8 11:23pm

In reply to @rich1964 "I was diagnosed at 45 years old. I am now 59. I have been through 2..." + (show)

Thanks for your input - it does help.
I was just diagnosed with WM and am trying to learn as much as I can about what to look for. I have had cancer in 2005 beat it. This is my new challenge!

Lori, Volunteer Mentor | @loribmt | Jan 9 9:25am

In reply to @jessabell "Thanks for your input - it does help. I was just diagnosed with WM and am..." + (show)

Welcome to Connect, @jessabell I see you’re newly diagnosed with WM. We have quite a few members who also have WM. You’ve already connected with @rich1964 who was very encouraging with his experience of having this blood condition for several years and what his treatment was like.

There is a good discussion in the WM group that you might want to follow if you haven’t already seen it:

~WM, What to expect during watch and wait:
https://connect.mayoclinic.org/discussion/waldenstrom/
You’ll be able to connect with other WM members such as @ejrquast @sagenest @lesliemont and many others who share their experiences.

~Other sources of information and guidelines for WM patients.

~This from the International WM foundation:
https://iwmf.com/
~And this article from the National Comprehensive Cancer Network:
~https://www.nccn.org/patients/guidelines/content/PDF/waldenstrom-patient.pdf

~https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/
https://www.healthline.com/health/macroglobulinemia-of-waldenstrom
Has your hematologist discussed treatment options or are you in a watchful waiting/active serveilance period?

kirk86 | @kirk86 | Jan 10 4:45pm

I was diagnosed in July 2021 and underwent 6 monthly rounds of chemo. Bendimustine and retuximab. After that I have CT Scans every 6 months and labs every 3 months. I see my oncologist every 3 months. Other than being tired, I am pretty much OK. No long term prognosis yet.

Lori, Volunteer Mentor | @loribmt | Jan 12 9:46am

In reply to @kirk86 "I was diagnosed in July 2021 and underwent 6 monthly rounds of chemo. Bendimustine and retuximab...." + (show)

Welcome to Connect @kirk86! Thank you for sharing your experience with having WM and your treatment plan. It sounds like it’s been successful in getting your blood cancer under control. It’s positive stories like yours that can really give hope and encouragement to new members such as @jessabell who was just recently diagnosed with WM.

How were you diagnosed and how soon after diagnosis did you begin treatment?

amelton | @amelton | Jan 12 1:15pm

In reply to @psue4 "Hello. I know you started your first treat in 2022. I just wanted to see how..." + (show)

I was diagnosed with WM in Dec 23' had a lymph node biospy in Nov came back low-grade B cell lymphoma/WM Monday I had a bone marrow biospy dr will start treatments soon. Wasn't sure what to expect with treatment thank you for writing on your daughters journey its relieved some anxiety about treatment.

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