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

Hi….am grabbing all the info I can on this SMZL. Rather daunting I think.
I see a couple of you are getting 2nd opinions, where? And are you doing the treatment
First?
I have been advised by my hematologist to wait to start any treatment after I get another
CT scan and labs done, probably after 1st of year.
I do not have any bothersome symptoms other than My energy level is not where I would like
It to be. Am a 68 yr old, fairly active female, grandmother of 4 active grands.
Some think I should get another opinion at Mayo, Rochester. I have doctored with a consulting
Dr from Utah and a retired hematologist from Rochester who have both concurred on the diagnosis yet one wants to start treatment the other is wanting ‘wait and see’……I am a little confused.
Can anyone give me heir experience in diagnosis and 2nd opinions or even 3rd opinions?
Any info is greatly appreciated. 💁🏻‍♀️

Hello Coleen and Stan. I had my labs drawn last Friday, They are still fairly good. H&H is 13.3 and 40.5 ( both of these up from last labs WBC is now 4.7 but was 6.4 on 11/16. I feel great and have still been trying to cut sugar out of my diet and drink plenty of water as well as eat as much protein as I can. I'm also increasing the iron I eat as well.
I will be getting another CT to measure the size of my spleen this week.
I am trying to maintain a good attitude but have my good and bad days. I will be seeking a second opinion on 12/17 at Mayo in Phx. I have 2 more Rituximab infusions, that will make it 8 total by 12/20. Good Luck with your SMZL journey. I believe this medication is helping me, at least at this point in time.

The doctor I am seeing is with Humphrey Cancer Center - North Memorial.

I have a bit of stomach pain as well. I think the size of the spleen is leaving less room for my stomach. Well that is what I read somewhere . A couple weeks ago cdwilm27 had commented of fatigue and I think low hemoglobin and hematocrit was mentioned and were improving following treatments. I wonder if things are getting better.

A year ago I suspected a back problem was caused by my SMZL but it wasn't. I wanted to make SMZL the bad guy.

Anyway, will you remain on watch and wait and return for a check up in 6 months? Are you seeing a Hematologist in Rochester?

My biggest symptom is fatigue and joint and stomach pain. I am tracking my food intake, energy levels and sleep quality to see if there is any pattern. I am still in a huge learning curve about lymphomas and am finding it all confusing. My bone marrow results confirm I have smzl based on what my doctor shared yet when I read the results it means nothing to me.

Colleen, Thanks for sending the link. It is an interesting article. As this progresses, at some point, one of those physical problems will begin to manifest itself and a treatment plan will be needed. And every case is a bit different. . I was just curious what others have experienced.

Stan, I wanted to pick up on the question you asked "I am wondering, what event(s), or test (s), triggers going from watch and wait to IV therapy?"

I found this info:
- https://www.lymphoma.ca/wp-content/uploads/2021/08/LymphomaCanada_FactSheet_SMZL_Digital.pdf

See page 5
"The development of certain symptoms will suggest moving from a watch and wait approach to treatment.
Symptoms can include symptomatic or progressive splenomegaly, low blood cell counts or symptomatic
lymph node enlargement."

Like you, I'd be interested in hearing directly from the hematologist what they are monitoring and what they suggest you should watch for.

@reneemp, I see you're interested in the same thing. Do you have any symptoms or things you and your team monitor closely?

I had the Pfizer immunizations in Feb, March, and booster in October. I have not had Covid. I just returned from Thanksgiving in California and flew in and out of Burbank airport with no issues so far. I do wear a mask everywhere I will encounter the public in a closed, indoor space.
I used to love to sit in the aisle seat while traveling by plane, but now I choose a window seat and turn my body to face away from people while I read a book.

I have had three Pfizer vaccines and no Covid. I practice safe behavior yet my partner is a flight attendant which has been and is cause for concern.

Another topic for everyone with SMZL. If you are willing to share, how are you dealing with Covid 19? I have SMZL watch and wait and my hematologist feels that I am immunocompromised and encouraged vaccinations. I've had 3 Moderna shots in Feb, March, and October. I have not had Covid, Have you had Covid while on watch and wait or during/after infusions, the severity of illness? or anything else you can comment on. Thank you