June 2019 i was diagnosed with primary cns lymphoma.
This year in march i had an ovary removed. They found diffuse large b cell lymphoma. My oncologist wants to put me on the r-CHOP regimen with stem cell transplant to follow as maintainance therapy.
I have not but I have/had Large B cell and went through RCHOP. I've been in remission for a couple of months now.
I have Marginal Zone Splenetic Lymphoma and Waldenstrom’s Lymphoma. I’m currently doing Rituximab infusion one every 2 months. My IgM’s are high at 1,215 and we’re trying to get those to go down. It’s a part of you blood and normal is 50. If the IgM’s go as high as 1,700 I start a swelling of my abdominal area. If I don’t stop that it will cut off the blood supply to my colon and I would have to have it removed.
I have a shot Icatibant that I carry with my to administer if the swelling starts.
I haven’t found anyone with these two Lymphoma’s.
I started mine in 2009.
I have three types of blood cancer and 40 years ago had ovarian cancer. Currently it's Non-Hodgkin's DLBC and Hodgkin's Classic Nodular and the rare Waldenstrom's. They call my combination, minus the Waldenstrom's Grey Zone Lymphoma. I started with ABVD before they found the NHL in my bones. I had one round of R-CHOP before consulting with MD Anderson and then I was switched to R-EPOCH.
I have cll/sll Non Hodgkin's lymphoma and lgl logistic granular lymphoma a rare leukemia. Some of my blood counts run low and some high right now the Non Hodgkins lymphoma is the most bothersome but is ok because I am still with my family and enjoying the time I have with them
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