Does anyone have lymphoma and no measles immunity?
Just wondering! Yes I’m the lucky one in that charming situation. Unable to get the MMR vaccine because it’s live attenuated and unsafe. I have Waldenstroms. Debating my options, seeing multiple specialists. If anyone is the same and would like to get in touch, please feel free! I feel like I’m reinventing the wheel. Thanks.
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Hello, @steiner. My diagnosis for the slow-growing form of lymphoma is "nodular marginal zone lymphoma." It's different because it initially forms inside the lymphatic system. [I had to look up the difference.😉] But, it morphed in my stomach lining into DLBCL (Diffused Large B Cell Lymphoma), which is very aggressive.
I'm glad I had that vaccine. My body's reaction caused me to call my primary right away. The DLBCL could have continued to go unchecked, and my treatment and/or outcome could have been a lot worse.
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3 ReactionsI didn’t know that could happen or that it could change into a complete different type (from slow-growing B-Cell to diffuse large B-Cell aggressive somewhere entirely different) how were you feeling that caused you to go to your primary? Did a pet scan or a CT-Scan locate it in your stomach lining? I pray that you have a complete and full remission/recovery x
I am still very frightened
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1 ReactionHello @steiner,
I hear you about being frightened. I didn't mean to introduce anything else for you to ponder over.😉
It was shocking for me to get a cancer diagnosis. I did all the "right" things: I was vegan, exercised regularly, and mainly got proper amounts of sleep. My "why me" moment never happened. It was more of a "Huh. What?!?" moment.😂😂 But that doesn't mean I haven't experienced all kinds of rollercoaster emotional moments pre, during, and post treatment.
My medical system provides counselors. Even though I'm in a Watch and Wait protocol, I value that I can still consult with him for emotional support. I also leaned heavily on the Leukemia and Lymphoma Society (Recently renamed Blood Cancer United). They have an 800 number that patients can call to discuss next steps, other concerns, or anxious moments. https://bloodcancerunited.org/
Although I feel concerned sometimes, I don't think about cancer every day. Knowing I have a very competent team in place helps. And that lets me concentrate on creating a richer life. It took me a few months after my recurrence to get to that place emotionally. Anxiety is normal, and we all have a right to feel what we feel.
I feel great and have taken up biking as a hobby. I just learned to ride last year and am getting better every day. I've set a goal of riding across town, but I need more practice navigating the streets.😂😂
I'll come back to your question about diagnosis in a follow-up reply. I don't want this response to be too long.☺
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5 ReactionsIVIG or immune globulin shot if qualifications are met.
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1 ReactionHi Emmiet, your reply was very helpful as I’ve had no-one to speak to about my diagnosis as I’m the 1st person in my entire family unit to have had a cancer diagnosis. I now know that I can get some emotional support from Blood Cancer United. The Hope Foundation held a Zoom discussing lymphoma cancer today which was also great and recommend lymphoma.org as a means to educate yourself about lymphoma. It’s really reassuring hearing how well you’re dealing with everything and I’m going to try my best to do the same. From tomorrow I’m going g to go for a 30 minute walk every day. I too have a brand new bike but haven’t ventured outside on it yet 😁 thank you and my prayers are with you x
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1 ReactionI asked my doc about treatment employed if stem cell transplant patient contracts measles. She said that IVIG infusion may be one approach, but that the Infectious Disease professionals would decide the best course of treatment. Not super helpful, I know.