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

I am receiving my treatment from Ironwood Cancer center in Phoenix, AZ. I'm 70 yr old female and I would call myself active as well. Before this diagnosis I was determined to lose my Covid weight and was either biking 7 miles, walking 3 miles or working out in the gym once a day. I did manage to lose 25 lbs prior to my birthday in June. That is when I started having night sweats and saw my MD in mid-August. She ordered lab which was abnormal and referred me to an MD at Ironwood. My oncologist ordered more labs, a neck to knee's CT with contrast and an bone marrow biopsy to determine my SMZL diagnosis. I contacted Mayo at that time for 2nd opinion, I was give a mid December appt. I started my Rituximab treatments on 10-14. My weight was continuing to drop but now seems to be stable. I took a 2 week Thanksgiving break and then started the treatments again on 11/29 and will end on 12/20. I do feel much better than I did when I originally started. the treatment. Some of that may be due to the fact that I have accepted the cancer diagnosis and trying to enjoy my life, 3 children and 4 grandchildren despite the diagnosis. I hope this information is helpful to you.

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. 💁🏻‍♀️

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?

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.

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?

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 hope the biopsy goes well and lab analysis will be in your favor..
On an SMZL general note, what I am wondering, what event(s), or test (s), triggers going from watch and wait to IV therapy? So would like to hear from anyone about their experiences, doctor discussions, lab results, etc I plan to have this discussion with the Hematologist, but would like to hear it from your perspective as well. Thanks

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