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

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. ☺️

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?

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

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?

My labs are holding steady. Would you be able to connect me with someone who is dealing with non Hodgins monoclonal low grade B cell lymphoma/leukemia. Spleen is enlarged but oncologist said she has seen better and worse😳. Thanks for asking.

Thank you so much for sending these contacts. My oncologist checks my spleen and, although it is enlarged, it does not need removing just yet.

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

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?