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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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HugInterested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.
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HTRmoon, I think symptoms, especially persistent or recurring symptoms, should be reported to your hematologist and cancer team. I might report it whether you're experiencing now or not, take notes when it happens again and report it then too.
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1 ReactionThe one symptom I have every 2-3 months, is stomach pain. I feel like I have food poisoning, nausea, but no vomiting. My spleen feels like it is the size of a watermelon for a couple days, then it all goes back to normal or as normal as an enlarged spleen can be.
Just wondering, is this a symptom that should be shared with the hematologist at the time it is happening or if it persists longer than a day or 2?
Any sharing of others with this symptom is appreciated.
Oh and Merry Christmas to All! 🎄🎄
Hi, just wondering how the treatments are going, health changes, and the appointment at Mayo. Am wishing you the best and Happy Holidays to everyone.
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1 ReactionThanks for the information. I will ask for the CT scans to be sent.
You would have to talk with the facility, but typically, if your tests are recent, you wouldn't need to repeat them. With your authorization, many facilities can share electronic records . Or hand carry a paper copy. Regarding your CT exam, ask them if they just need the radiologist report or if they also require the images. Diagnostic mages such as CT are large files and think they are more difficult to share electronically. Mayo put my CT exam on a CD and I hand carried it to the "second opinion" Oncologist.
Stay in touch
That is a great idea!
Really do not want to go thru all the tests again or bone marrow biopsy…..getting in touch with insurance provider would answer many questions!
Thank You!
Be well. 💁🏻♀️
I think you should do what is required to be as comfortable as possible with your diagnosis and care team. When this started for me, the mental strain of delayed appointments, and waiting was rough. Desperation for answers is why I called Rochester. They diagnosed my SMZL and also found lung cancer and have had subsequent surgeries. I am very pleased with the care I have received. If you have questions let me know.
Another thing to consider about a second opinion is with your Insurance or Medicare plan. Contact them if you are concerned about coverage.
I hope this helps.
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1 ReactionRight now we are watch and wait. I have an appointment in January to review with my doctor. He did say he would monitor every 6 months. I already see him annually to monitor for pancreatic cancer (I have a gene and family history + breast cancer survivor) which is how the enlarged spleen was identified.
It is interesting to see how the infusions are improving your health and like to hear comments on diet and exercise. Also of interest to me is to see the lab test changes. During my watch and wait, my doctor has labs every three months and seems to be watching for a drastic change. I was diagnosed in 2019 but blood tests back to 2017 started to show a steady change from normal. Total WBC went from 9 to most recent test 11.3, The Lymphocytes from 4.4 to 6.4. Platelets from 166 to 91. But Hemoglobin and Hematocrit have stayed around 14.5 and 44.5 the whole time. Spleen is growing and at 16.8 cm.
From everything I've read, there are a few variations of SMZL, and the standard of care seems to be evolving as well. All are things to discuss at the Dr. appointment.
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1 ReactionRenee. It is good you are not having to travel far for your care. Will your doctor keep you on watch and wait?