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Follow-up imaging after treatment

MaryHall

New member
I was diagnosed in the fall of 2018 with Primary Cutaneous Extra Nodal Marginal Zone Non-Hodgkins Lymphoma, sorry, I don't know the abbreviation. I decided to go the watch and wait route. Last fall I was being considered for a clinical trial for ongoing problems in my left leg. The CT found that I was a candidate due to May Thurner syndrome, but they also found a deep tissue mass/tumor in that leg that the Dr. said needed to be taken care of before he'd address the other problem. I had a biopsy and it came back as the same type of lymphoma. I had a course of Rituxan in December, once a week for 4 weeks, which I had a bad reaction to but completed. I had to cancel my follow-up in February and will be going tomorrow for the follow-up. I found a lump in that same leg about a month ago and have been having symptoms that may or may not be directly related to the lymphoma. I still have a big bill and I want to limit testing/imaging. Does anyone know if an MRI would show everything that's going on? I don't want to appear clueless when I see the doctor.
 

po18guy

Active member
Sorry to hear this. I am guessing the acronym would be PCMZL. That it has gone systemic is not all hat unusual. Did your regimen include Bendamustine (Treanda)? I read a lot that the Bendamustine-Rituxan combo is more or less the new gold standard in B Cell Lymphoma tratment.

As to costs, have you applied for new or different insurance? Local, state of federal assistance? If you are disabled, you may apply online for social security disability - whether short or long term. As to an MRI, it has strengths and limitations, like all imaging. I would spend every spare moment looking for funding, as this is no time to scrimp on scanning.
 

andym

Super Moderator
Welcome to the forum, Mary. That's really difficult to face financial concerns when trying to decide what is best for your health. po18guy has some good suggestions.

MRI's done correctly for lymphoma can show a lot and I know patients who use them instead of CT scans to follow lymphoma.

BTW, I also have bad reactions to Rituxan. For me, adding 10 mg of dexamethasone to the pre-medications does the trick. I also infuse it a bit slowly but that may not be as critical as the dex.

Let us know how your doctor visit turns out.
 
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