← Return to Waldenstrom macroglobulinemia (WM): Deciding treatment options

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@nancyraskauskas

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.

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Replies to "I was diagnosed with WN in July. I had gotten seriously short of breath and was..."

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?