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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
Blood Cancers & Disorders | Last Active: 6 days ago | Replies (329)Comment receiving replies
Hello, I've not written in a long while. Lots happening in my personal life.
I was diagnosed with SMZL in Oct 2021. My spleen was 3 times the normal size, I had terrible night sweats and my H&H was 9.9 and 32. Bone Marrow biopsy revealed cancer cells were present there as well.
I had 8 infusions of Rituximab over the course of 10 weeks. My labs were nearly all within normal limits on December 20th and again on 1/21 as well as my spleen was nearly normal. I did have another BM biopsy in late January which revealed the T-20 cancer cells were gone, but there were some T-19 cells that were present, non cancerous at this point.
I did have a 2nd opinion with Dr Javier Munoz at Mayo on 12/7 and he thought the current course of treatment was correct with Dr. Salganick at Ironwood Cancer center.
My next appointment is 6/28. However I did see Dr. Salganick on April 19th regarding the return of some light night sweats. He stated he did not want to go to the next level of treatment if I could live with night sweats on and off. I agreed with this. Waiting to see what my labs reveal in June.
As for my personal life; my husband of 19 years and I have Legally Separated, sold our home and he has moved to Florida and I am now in a new house in Peoria. I am trying to continue healthy eating, exercising and a Zen attitude. It is strange and makes my head spin when I consider all the changes in my life since the diagnosis in October. However I do feel that I can focus on my wellness in my new environment.
Replies to "Hello, I've not written in a long while. Lots happening in my personal life. I was..."
cdwilm27. It was nice to hear from you and that your treatments went well. You've had a difficult year and hope your next reports are positive. This forum is interesting as one can relate to many things mentioned, yet each person is unique in their timeline, symptoms. and successes. Thanks for checking in.
Sounds like you are an overachiever with a 3x the-normal-size spleen. Mine was only twice its normal size! I was lucky as I never had night sweats and any temperature. I too went through a lot of changes. I started treatments in January of this year, after 'firing' my previous oncology practice that was slow to respond to phone calls, emails and even feed back on my newly discovered cancer. I was treated like one more sick person in their waiting room and everyone, including the staff looked lifeless and uncaring. I drive an hour away to a clinic that is well worth the trip, as everyone is happy, my doc is the head of the clinic, so anything she wants done to me, gets done pronto! I started working from home in January and went back to work 2 weeks ago. In February I put my little house up for sale and sold it within that week, weeks later I hit a large deer or it hit me, if I am being honest, and caused $11,000 worth of damage to my 2 year old car. I moved in March to a condo where I can manage everything better, but I do miss my vegetable, herb and flower gardens, but not the grass cutting and weeding. I turned 70 in May and lead a pretty active life (gym classes, yoga, pickle ball) and intend to keep working until the end of the year. The unknown is whether I will have to have Rituxan treatments until the end of my life and they are costly. If you want to connect to chat, I am up for it. Thanks for listening.
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Thank you for sharing your journey. How encouraging to hear the T-20 cells were gone and the T-19 were noncancerous! The spleen is such a remarkable organ to have regained it's former size. My spleen size is my most bothersome symptom. My diagnosis was much earlier in 2019 but of course everybody's course will be different. Treatment has been offered but not definitely "required" at this stage so I continue to postpone Rituximab. Did you have symptoms with the infusions? I am currently in an acrimonious separation after 35 years of marriage and honestly that is the silver lining in the cloud of diagnosis. It forced me to reevaluate my life and I am so much happier separated. I do believe focusing on our own mental, physical and spiritual health is the wisest choice I can make with this journey. Best wishes for your lab results in June, the watch and wait is becoming easier but never exactly comfortable.