Want to connect with others with Splenic B cell Marginal Zone Lymphoma

Posted by April @sabtahis, Jul 24, 2016

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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

stankent | @stanleykent | Feb 11 2:35pm

In reply to @gjk "I have smzl. Will start rituximab fri feb9th. 8 hours" + (show)

gjk
Hello, just wondered how your first rituximab treatment went? Hope it went ok, but from experience, know the first one can be challenging.

kayak4me | @kayak4me | Feb 11 6:08am

In reply to @mrgreentea "Hi Elaine, USNews ratings of cancer centers (https://health.usnews.com/best-hospitals/rankings/cancer). I didn't look for other lists. I recently..." + (show)

I had never heard of Waldenstroms but it looks very much like SMZL! I hope they diagnose you soon so you can get about your health plan.
Laurie

elainejarrett | @elainejarrett | Feb 10 8:04am

In reply to @mrgreentea "Hi Elaine, USNews ratings of cancer centers (https://health.usnews.com/best-hospitals/rankings/cancer). I didn't look for other lists. I recently..." + (show)

Hope you find out exactly what is going on with you sooner rather than later. It is an emotional roller coaster. Thanks for the link. Good luck.

mrgreentea | @mrgreentea | Feb 9 9:38pm

In reply to @elainejarrett "Who is rated #1? I like Dr. Witzig at Mayo but I also see a Dr...." + (show)

Hi Elaine,

USNews ratings of cancer centers (https://health.usnews.com/best-hospitals/rankings/cancer). I didn't look for other lists.

I recently learned that my doctor thinks there is a possibility that I may have Waldenstroms (instead of SMZL, or in addition to, I don't know). It is now 8 weeks since I started testing, so it's been quite a journey without having a clear understanding of what I have. Oh well.

I have an appt at Mayo in two weeks for a second opinion with Dr. Johnston.

Paul

elainejarrett | @elainejarrett | Feb 5 7:29am

Good news is that Rituxan seems to work. Hang in there.

stankent | @stanleykent | Feb 4 1:08pm

In reply to @mrgreentea "It sounds like you must have had quite an exhausting few years... Mayo is rated #3,..." + (show)

Paul,
It sure seems like the standard plan for SMZL is to wait and start Rituxan when needed. The U or Mayo would probably follow a similar path.
For me, the need for treatment became more complicated. I had lung surgery in Nov 21. and follow up tests in 2022 found chest fluid. To make a long story short, through many tests/appointments and evaluation by a number of specialties it was felt my SMZL was the probable cause. I had 4 Rituxan treatments and my chest fluid cleared up. And the blood tests came back normal and spleen size was reduced, too.

elainejarrett | @elainejarrett | Feb 4 7:56am

In reply to @mrgreentea "Hi Elaine, I had a routine physical 12Dec23 and learned about my 35 WBC. My doc..." + (show)

Who is rated #1? I like Dr. Witzig at Mayo but I also see a Dr. Brenda Larson at Frauenshuh, Park Nicollet, St Louis Park MN, when I am back in the Cities for the summer. I like both doctors.
I got a second opinion only because all my tests were done in Florida and when I went home, I felt better getting a second opinion due to how doctors are down here. If and when I need treatment, I shall be going back to MN for it. A biopsy was not possible on my very enlarged lymph node as it is one that is extremely difficult to get at.
My problem started in 2019 when my platelets kept dropping. It took until January 2021 to find out exactly what was going on with all the tests you have gone through. Keep in touch and I hope we all make it through with this cancer.

elainejarrett | @elainejarrett | Feb 4 7:48am

Thanks. I shall let you know how I get on.
I was told it is not necessary to have a CT scan every year if labs are holding steady and I do not feel "crummy". I shall ask my oncologist at Mayo when I see him in May about CT scan as the one here in Florida does not think I need to do it yearly. Hope you continue to be OK and that we live long lives.

stankent | @stanleykent | Feb 4 7:32am

In reply to @elainejarrett "Your story is very similar to mine. I have an ultrasound on my spleen this Tuesday..." + (show)

Elaine. Is your spleen getting painful.?
I started with Dr Colgan and he retired and now I see Dr Paludo or his PA.
My schedule now is that I have appointments every 6 months for blood test and the Hematology doctor. Once a year they do an abdomen CT.
Good luck with your test on Tuesday.

mrgreentea | @mrgreentea | Feb 3 9:26pm

In reply to @stanleykent "Paul, My understanding is the re-occurrence is the same type B cell. The b cells, good..." + (show)

@stanleykent

Paul, My understanding is the re-occurrence is the same type B cell. The b cells, good and bad, are made in the bone marrow and after treatment, the bone marrow continues to produce more good and bad b cells. My really basic understanding is that for some unknown reason my bone marrow started to produce these smaller than normal bad b cells, A normal b cell has a life span of a couple weeks and they die off and are filtered out by the spleen. The bad b cells don't act like a normal b cell in fighting infections, etc and they don't die. And since they don't die or have a much longer life, they go to the spleen and accumulate and my spleen grew and grew over a number of years. Rituxan kills all the b cells and the spleen sort of goes back to normal size. The bone marrow is still making bad b cells and the spleen will gradually get larger again. Each person is different and some seem to have better treatment results. Some SMZL will morph into something else as well. Clarify all this with your doctor.
The start of my SMZL journey was a high white blood count and low platelet count during a routine physical in 2019. Doctor looked back in test results and figured it started prior to 2017 as levels were changing back then. My primary care doctor referred me to a local oncology group and could not get in for a month. I called Mayo and got in within a week and was diagnosed the following week. I did keep my original oncology appointment and they confirmed the Mayo diagnosis and I kept going to Mayo. At Mayo, the Hematology group works with the blood cancers and within that group, there are a some that see the marginal zone/B cell lymphoma patients. I get blood tests and appointment there every 6 months.
A Mayo second opinion would involve getting copies of or releasing all of your medical records so Mayo could see all imaging and test results.
My 2019 testing also found a really early stage lung cancer and have had two lung surgeries since then. I also see an Oncologist every 6 months, too.
So I have had a lot of care in Rochester and am very very pleased with everything they have done.
I know, this was hard to learn and live with. Gradually it became my new normal.
Hope this helps you.

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It sounds like you must have had quite an exhausting few years...

Mayo is rated #3, UMN #37... this makes me think that I should get a second opinion. Maybe this is unnecessary for SMZL vs other cancers. I'll find out.
Now that I have a ton of results, hopefully they won't need any more.

Paul

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