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

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.

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?

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

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 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. ☺️

Hi @loribmt –

Since you had a bone marrow transplant 5 years ago, wouldn't that have given you back a healthy immune system? Or, are you still (a little, a lot?) more susceptible to catching something than you were before you had cancer?

Thank you,
Paul

This is a tough one to answer, Sue…when to wear a mask. For me, wearing a mask is second nature now. I wear a mask when I’m out shopping in any store, or elevator or in a car with someone other than my husband. I wear a mask in a friend’s home or even when people visit in my home. They are asked to wear one too. Even when my daughter and son-in-law come for a week or so, while we’re in the house, they pop on a mask. It’s not a big deal. We actually eat with masks on by pulling it down, taking a bite, replacing it. That way we can talk, laugh freely and enjoy our mealtime without worrying about aerosol. Since I know my husband is cautious, we don’t wear masks when we’re alone together inside.

I realize this can seem like overkill, but since we have no idea how my body will react to illnesses, especially Covid, a mask is my first line of defense. And it has served me well for the past 5 years.

Children are germ bombs so I’d especially be mindful of wearing one around your grandnieces. In the workplace, having an appearance of being healthy can be deceiving too. While you may think your coworker is perfectly healthy, you won’t know until they don’t show for work one morning because they’re home with the flu. That means you were exposed the day before.

Receiving a Rituximab infusion can lower your resistance for several months. This medication affects the B-cells (white blood cell that makes infection-fighting proteins called antibodies), which are an important part of your immune system, your body’s defense against harmful pathogens (viruses, bacteria and parasites) that enter your body and make you sick. So for that time span it would be important to be cautious to avoid exposure to infection or illnesses.

Ask yourself this…since you’ve been diagnosed, have you found yourself becoming ill more frequently such as catching a cold? Just use your good judgment in situations. If you get the spidey sense that this may be a situation where it’s best to use a mask, then put it on. If you’re in a grocery store and it’s not crowded, with lots of room and ventilation, then you may not need one. I think over time you’ll get the feel for when it’s appropriate and when it’s not necessary.

Thank you Lori for your thorough response. Yes, even before my diagnosis I went back to wearing masks in crowded public indoor places like supermarkets. Now I am wondering how much I should be masking in general when indoors, like when I am visiting with grandnieces who appear to be healthy, or at my new job when I will be in an office, sometimes with one other person for periods of time. I would hate to have to always be separated by others by masks for the rest of my life.
I also wonder about how this changes over the length of time it has been after a dose of rituximab since that med definitely increases or degree of compromise.