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.

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@loribmt

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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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

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@gjk

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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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?

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@mrgreentea

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

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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.

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@loribmt

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?

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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.

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