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Want to connect with others with Splenic B cell Marginal Zone Lymphoma
There are over 80 different subtypes of lymphoma . This is a slow growing lymphoma.I'd like to know and communicate with any patient if possible.
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Hi Sally,
I'm glad you were able to find the right oncology practice, well worth the drive I'm sure.
I have to go back to my oncologist 6/28 for follow up. I will have labs done prior to this appointment which will determine next steps. Overall, I am feeling great. I'm just hoping there is not disappointing news regarding my labs. I have a summer full of small trips planned and I really don't want to change anything if possible.
Where are you located?
I miss my old home which had an open fence to a greenbelt and lots of animal/bird sightings. However I don't miss the stress of living with my husband. My new home is much smaller, but much easier to clean and lots of friendly people nearby.
Good to read your input Sally. It does seem that many of us were living a healthier than usual lifestyle and I went through a period of searching for alternative treatment that would at least put this in remission. I do think this is a long journey and I will go through many moods with it. At this point I try to focus on appreciating every day. In a sense, I am lucky to have this diagnosis so early. I have years (hopefully) to remember, everything is impermanent. My mantra is accept, adjust (do what you can to help yourself) and repeat (know you'll be at this cycle again). The big reminder is the spleen of course, impossible to ignore, but I take great solace that I do not view this as a tumor. This valiant organ is struggling against the odds every day to help me, doing it's best. Having watched my father die of esophageal cancer, I know full well the horrors tumors can present. A compassionate view of my spleen helps me diminish the fear a bit. The encouragement and inspiration I read here is definitely helpful! Thanks for sharing.
I confess I don't know what "IGG" proteins are? And why they are a concern for you? I did get two rounds of an injection from my cancer doc, it is a new drug approved by FDA to help boost immunity in cancer patients like us - it is called "Evushield". You might check into that? Thanks for reaching out.
70 year old female too, grandmother, very active lifestyle, haven't retired from full time job yet (December this year), and diagnosed in Nov 2021. My weight had started to drop prior to treatments, because the spleen, which was 2x normal size was impacting my ability to eat normal meals and going to the bathroom a lot too. Hope you are still doing well.
I was diagnosed by oncologist #1 in November of 2021 and 'fired' that cancer practice after weeks of frustration of their inability to return a phone call or see me for weeks. I now travel 1 hour each way to see a lovely oncologist in Baltimore, who is the head of a cancer clinic and she reconfirmed the first doc's diagnosis, and I love my current specialist. She saw me days after Christmas, where I asked her if she would be my primary doc and she found room to see me immediately & her team set up all of the appointments & we rolled! My first round of Rutixan was Jan 7, followed by 3 more rounds total, the spleen shrunk quite a bit and my blood cancer levels went drastically down. I do feel like the spleen might be trying to enlarge a bit? (Or maybe my fear in my head). My spleen was twice its normal size and down to my belly button almost, couldn't do normal stuff like lay on my stomach to do Yoga exercises, walk up a flight of stairs without feeling winded or dizzy, etc. I have had little or NO reaction to the Rituxan treatments, they put me on Predinisone for a week prior to the first treatment to get my body in "fight" mode.
At age 69 I was diagnosed with SMZL November 2021. And for 10 years I had been pescatarian diet, but now eat meat to help improve my blood counts, as I was anemic, etc. I had 4 rounds of Rituxan in January of this year and it dramatically shrunk the spleen, but I have not had anything else since then. However, I have had all 4 COVID shots, Pfizer, and also 2 rounds of Evushield which is a shot that helps to boost the immunity of cancer patients and others with immunity challenges. There seems to be a common thread that the SMZL occurs later in life and hits those of us that were active and healthy? Thank you for listening
I know about being uncomfortable with the enlarged spleen. Mine was twice its normal size & my cancer doc said it was all the way down to my belly button. Yes, things like Yoga (any position on the stomach) and doing Spin classes were out of the question, but of interest I was able to do Body Pump classes, yet found going upstairs or hills to be difficult because my lungs could not draw a dep breath. After 4 rounds of Rituxan, the spleen reduced considerably in size in February but here it is June and I think it is growing back, so perhaps I need more infusions? My cancer doc stated then that if my numbers swung back up, or remained static she would order 6 rounds of Rituxan, rather than another 4.
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1 ReactionLaurie, I am new to this communication platform for those of us diagnosed with NHL, SMZL, and don't know what ivig infusion is. I had 4 rounds of Rituxan in January that helped reduce the size of my spleen (was twice its normal size). I have had my 4 COVID shots, Pfizer, as well as 2 rounds, one month apart of "Evushield" a new drug, recently approved by the FDA for cancer peeps like us, that are immunity challenged. Overall, I feel lucky as I have had little or no reaction to the shots.
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.
Hi Laurie, thanks for your concern & I too was in shock for some time about being diagnosed with SMZL. I joke with friends that all the years of clean living has caught up with me and I should have been drinking a lot and smoking and eating lots of fried food and not exercising! When you say your spleen is holding to its size what do you mean? Mine grew to twice its normal size before my 4 rounds of Rituxan started. Thanks Sally