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.

elainejarrett | @elainejarrett | Jul 4 7:37am

I would try treatment rather than have surgery. I have been on w&w since 2019. Although it is nerve wracking and not ideal, I shall opt for the treatment as I have heard it is quite successful. My doctor is at the Mayo Clinic and he has informed me that a trial is going on involving T cells that may attack our kind of cancer cells. If successful, could be a game changer🤞🏼🙏🏽

Lori, Volunteer Mentor | @loribmt | Jul 3 10:17am

In reply to @lila1 "Hi Elaine, I have same if you want to connect. Also on W&w. How are you..." + (show)

Hi @lila1. Welcome to Connect. You came to the right place to be able to chat with others who share your diagnosis of Splenic B cell Marginal Zone Lymphoma.
I see you’re in the watch and wait phase which can often feel like you’re waiting for the other shoe to drop. So I hope you’re not letting that interfere with just enjoying life to the fullest. Those pesky “what ifs” can be such stressors.

From reading your other replies, it looks as though your doctor has given you potential treatment options of infusions with Rituxan or a splenectomy? Is there a reason you’d prefer the surgery instead of infusions? Rituxan can be a pretty effective medication especially where B-cells are concerned.

How long ago were you diagnosed?

lila1 | @lila1 | Jul 3 7:01am

In reply to @elainejarrett "Thank you so much for sending these contacts. My oncologist checks my spleen and, although it..." + (show)

Elaine, is splenectomy a consideration for treatment for you? I’m interested in same instead of rituxan. Would love to compare notes, what our doctors advise etc. thank you

lila1 | @lila1 | Jul 3 6:52am

Hi cd. How are you doing? I have same diagnosis and agree it’s hard to find others. Are you currently w&w?

lila1 | @lila1 | Jul 3 6:49am

In reply to @elainejarrett "My labs are holding steady. Would you be able to connect me with someone who is..." + (show)

Hi Elaine, I have same if you want to connect. Also on W&w. How are you doing?

gjk | @gjk | Feb 22 1:06pm

In reply to @loribmt "Good morning, @gjk Just checking in to see how you’re feeling after the 2nd round of..." + (show)

Well it was easier than tge first. Felt tired for a couple of days and now have some arthritis symptoms which the drxsaid I could have. He sent me some pain med because as you know cant
take aleve, advil or Tylenol. Tommorrow is the 3rd. Once all done hope to feel better.

Lori, Volunteer Mentor | @loribmt | Feb 22 8:22am

In reply to @mrgreentea "Hi Lori ( @loribmt ), Thank you for sharing all of that, it's very helpful. I..." + (show)

Hi Paul, I see in one of your previous replies that you have an upcoming appointment at Mayo for a second opinion. That’s my home away from home…the outstanding doctors, nurses and staff there are responsible for the amazing results I’ve had with my leukemia/transplant odyssey. So I wish you well and hopefully you find some answers. I’ll be curious to learn what you find out.

Lori, Volunteer Mentor | @loribmt | Feb 22 8:17am

In reply to @gjk "Hello, it went ok, not to many side effects, just chills, leg pain. I was really..." + (show)

Good morning, @gjk Just checking in to see how you’re feeling after the 2nd round of treatment. Was it a little easier on you this time?

mrgreentea | @mrgreentea | Feb 21 9:20pm

In reply to @loribmt "Hi Paul, That’s a discussion I’ve had many times with my transplant doctor. My donor was..." + (show)

Hi Lori ( @loribmt ),

Thank you for sharing all of that, it's very helpful. I can only hope to have the wonderful outcome that you have had. You are so fortunate!

Paul

Lori, Volunteer Mentor | @loribmt | Feb 19 10:29am

In reply to @mrgreentea "Hi @loribmt – Since you had a bone marrow transplant 5 years ago, wouldn't that have..." + (show)

Hi Paul, That’s a discussion I’ve had many times with my transplant doctor. My donor was a 20 year old male from the U.S. From my perspective, 5 years later at 70 years of age, I quite frankly feel like I’m in my 20s! I’m healthy and incredibly fit. I joke about having super human powers because if I get a cut or burn on my hand, it heals within a very short span of time. So I can’t help but think that I have a really strong, new immune system.
Before AML and transplant, I was rarely ever ill in my life and that remains true today. In the 5 years since my transplant I’ve been very judicious wearing my mask, avoiding high exposure events and since that time I’ve had no infections at all. I’m quite happy not tempting fate. ☺️

However, from what I’ve learned, my new system, no matter how strong it is, will never be as robust as ‘the factory installed model’.
There’s no way to fully measure the strength of my immune system. I’ve had all of my childhood, adolescent and adult vaccinations. However, it’s been noted in numerous studies, after vaccinations in stem cell transplant patients, that generation of antibodies is markedly lower. There’s no information that I’ve seen as to what the B and T Cell responses are. So this remains an unknown.

Another reason I don’t risk developing a serious illness is because of a side effect of transplant referred to as GVHD. Graft vs host disease. My new immune system (the graft), is the controller of all things! It looks at my body (host) as the invader. So if there is a source of inflammation the immune response is to rush to the rescue. This can cause the system to go into high alert and the results or level of response can be unpredictable. Small things can become potentially life threatening. So it’s better to be safe than sorry. ☺️

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