1. < Blood Cancers & Disorders

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 4 7:32am
In reply to @elainejarrett "Your story is very similar to mine. I have an ultrasound on my spleen this Tuesday..." + (show)
@elainejarrett

Your story is very similar to mine. I have an ultrasound on my spleen this Tuesday as it is starting to bother me.
I winter in Florida so see an oncologist here but as soon as I get back to Minnesota, I see Dr. Witzig at Mayo. Which doctor do you see? How often do you get a CT scan? I am fortunate to be able to discuss this problem as very few people have it.
Elaine.

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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.

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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.

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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)
@mrgreentea

Hi Elaine,

I had a routine physical 12Dec23 and learned about my 35 WBC. My doc advised a follow-up with an oncologist. I started that journey on 15Dec23 at UMN with Dr Hu. Many blood tests, CT w/contrast, and ended in the last two weeks with a bone marrow drilling expedition and a lymph node sampling (I have it in my bone marrow, spleen, and some lymph nodes). So, all in all it's been about 6 weeks to get my baseline analysis. The care at the U has all been good.

I was at Mayo for a few things in the past & it was also good. Mostly I think I saw PAs more than docs. It would have been a lot of driving for all those tests. Still pondering what a second opinion might get me given that the status quo seems to be wait & see & then Rituxan, but I might try anyway.

Do you like your doc @ Mayo?

Paul

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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.

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1 reply
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)
@mrgreentea

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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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.

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elainejarrett | @elainejarrett | Feb 5 7:29am

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

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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)
@elainejarrett

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.

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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

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2 replies
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)
@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 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

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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.

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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)
@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 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

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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

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stankent | @stanleykent | Feb 11 2:35pm
In reply to @gjk "I have smzl. Will start rituximab fri feb9th. 8 hours" + (show)
@gjk

I have smzl. Will start rituximab fri feb9th. 8 hours

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

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gjk | @gjk | Feb 14 9:35am

Hello, it went ok, not to many side effects, just chills, leg pain. I was really tired sat and sun but better today. Ready for the next one on Friday. Is rhe second treatmemt easier?

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