Waldenstrom macroglobulinemia (WM): Deciding treatment options

I’m not a dr so this is only my experience with chemo treatments. I’m currently receiving Rituximab & Bendamustine infusions once every 4 weeks. Side affects unpleasant but improve approximately 5-6 days after treatment.
I didn’t like the idea of taking a pill forever so chose chemo.
Chemo treatment was approved by local oncology/hematologist with second opinion from MD Anderson in Texas.
Hope this helps.

Welcome to Connect, @weissmntc. You’ve just been handed a new diagnosis of Waldenstrom Macroglobulinemia. I’m sure you have a ton of questions about this blood condition along with the new treatment you’re about to begin. We have a number of members in the forum who have also been diagnosed with WM.

This discussion might be helpful with @ejrquast @aann @nsh regarding
Waldenstrom macroglobulinemia: What can I expect with chemo?
https://connect.mayoclinic.org/discussion/waldenstrom-macroglobulinemia-recently-diagnosed/

Another current discussion, though it dates back to 2012, is still active. You can reverse the order of discussions in the little option box under the opening statement:
Waldenström's Macroglobulinemia
https://connect.mayoclinic.org/discussion/waldenstrms-macroglobulinemia/

If you’re interested in learning more about your condition I’ve found a few links for you regarding WM.

https://www.mayoclinic.org/diseases-conditions/waldenstrom-macroglobulinemia/symptoms-causes/syc-20359967
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International Waldenstrom's Macroglobulinema Foundation http://www.IWMF.com
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https://www.verywellhealth.com/what-is-waldenstrom-macroglobulinemia-2252362
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https://www.lls.org/sites/default/files/2021-07/FS20_Waldenstrom_FactSheet_2021.pdf

Brukinsa and Rituximab is a pretty standard combination of treatments for many types of blood cancers/conditions. It’s not just for WM. There are many members in our Blood Cancer Support group (such as @badnewsforme who shared their experience in the comment above) who have taken this course of treatment. Here’s one of the discussions that will be relevant for you:

Rituximab & Bendamustine
https://connect.mayoclinic.org/discussion/treatment-for-mzl/

Hopefully I haven’t overwhelmed you with information. But knowledge is power and it’s often helpful to learn as much as you can so you are able to make informed decisions about treatment.

Were you having symptoms that lead you to finding the diagnosis or was this found in a routine physical?

I was diagnosed with WD almost 2 years ago. I got weekly infusions of Rituxan then infusion every 2 months since. My cancer, confirmed by bone marrow biopsy, is inactive. I continue the infusions every two months for my neuropathy as my IgM levels are still elevated but coming down slowly. My anemia went away but now is back. Hope it comes down again soon. Hope this helps.

Thank you very much! The only symptoms I had were breathlessness when hiking (I knew I had anemia) and periodic bruising but I’ve always bruised easily. In hindsight, I lost weight at the beginning of COVID lockdown but it stabilized at a “good” weight (I needed to lose it) and I gained back about 5 pounds.

I was diagnosed with WN in July. I had gotten seriously short of breath and was unable to sustain certain tasks. I already was diagnosed 5 years ago with Thrombocytopenia ” of unknown origin” but now I guess I know what that origin was. I experienced no unusual bruising or bleeding so doctors let it go. I started Rituximab treatments in Late August and received 4 consecutive weeks of treatment. I had violent reactions including chest pains and pressure. My head felt like it was a bout to explode. They stopped treatment, administer medications to stop then proceed at which time I would be best with uncontrollable rigors. They would stop treatment, give medications to cease rigors then I would continue with treatment until the end. By the fourth treatmentno pressure and the rigors were less and I could predict when they were coming on. When the Rituximab did not perform adequately I started Rituximab-Bendamustine regimen. I will be taking the 3rd out of 4 treatments tomorrow. I am again having both reactions to only the Rituximab. This seems to be helping gradually lesso swelling in lymph nodes and raising hemoglobin and platelets, along with transfusions (due to my very low blood counts) so I am sticking with it. I have 4 treatments to go.

Hi @nancyraskauskas. Thank you for sharing your experience with taking Rituximab and Bendamustine for your WM. It sounds like you had some scary side effects initially with the Rituxan. From my understanding, and personal experience with the drug, it usually subsides when the infusion rate is lowered drastically and given with Benadryl or steroids. I’m glad to hear you’re doing better now and both meds are doing the job!
Best wishes for smooth sailing with your infusion tomorrow. I’m sure you’re counting the weeks until this is over. ☺️

By the way, Welcome to Connect, Nancy. So happy to have you here! What brought you to the forum today? Were you searching for anything in particular?

Hello. I often go to Mayo Clinic online when searching for information. I have 2 friends (husband and wife)are at Mayo. They check in with them every day. I discovered the discussion forum and wanted to see if others are having the same experiences as me and see if I can also offer up my experiences. You see, I am still having those same reactions with Rituximab after 6 treatment with it,even with the added pretreatments. The difference is I know exactly when they are coming on so I can get response dice meds into my system before the reactions escalate. My treatment yesterday went well as a result. I only had to interrupt the treatment for 2 15 minute intervals after the two reactions. I used to be wiped for 30 minutes to an hour after receiving the “antidote” meds before resuming treatment.

Good morning, Nancy. Mayo has always been my go-to source for information as well…never expecting that I’d actually be a patient there someday! That’s what eventually led me to finding this forum too. So I’m happy to see you here!

Your experience with Rituximab reactions sounds similar to mine. But you learn to recognize the feeling, get the meds and move on! It’s quite amazing what our bodies can tolerate and recover from… and while these treatments aren’t always pleasant, they do work. I’m coming up on 5 years post cancer treatments and feeling fantastic. So hang in there! It gets better. ☺️
Wishing you a lovely holiday season and best wishes for happy and healthy, New Year! Do you have family gatherings this year?

Sorry for the late response. Hope you had a wonderful Holiday! I spent my day with my daughter and her family. I was still feeling the remains of my treatment from the week before but was able to recover in time to enjoy Christmas dinner. Thank you for your encouragement! Happiest of New Year to you!

Hi my name is William Kelly I don’t have any answers but I can tell you my story.I was 45 in 2009 when I was diagnosed with Waldenstrom. It was through a blood test after I had shortness of breath. Then a bone marrow biopsy to confirm the bloodwork. It was a very scary time I didn’t know what to expect. I went through a lot of anxiety not knowing what was next. My first chemo was cytoxon oral. And rituxumab intervenes. After my treatment I went into remission for 14 years just yearly dr appt. Then my igm jumped up to 5500 very quickly. In 2022 I had another round of chemo with bendka rituxamab. Bendeka for me was a miracle drug it put all my blood counts in the normal range. And here I am still kicking. I never let this cancer define who I am. Just a bump in the road that the Good Lord put there for a reason. There are a lot of advancements in drugs to treat this cancer so hang in there and keep your head held high. God loves you and you will get through it.