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.

Interested in more discussions like this? Go to the Blood Cancers & Disorders Support Group.

@stanleykent

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

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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?

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@colleenyoung

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?

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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.

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@colleenyoung

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?

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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.

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@reneemp

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.

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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?

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@stanleykent

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?

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

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@stanleykent

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?

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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.

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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. 💁🏻‍♀️

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@pkh

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. 💁🏻‍♀️

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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.

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@cdwilm27

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.

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Sounds like you are doing great! Thank you for info and encouragement!
Glad to hear your treatment is going well for you.

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@reneemp

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

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Renee. It is good you are not having to travel far for your care. Will your doctor keep you on watch and wait?

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