1. < Blood Cancers & Disorders

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.

theresad2 | @theresad2 | Apr 1, 2022
In reply to @colleenyoung "Welcome Theresa. I'm confident that fellow SMZL'ers like @scsimpson @waltera @kayak4me @juiceylucy @reneemp @stanleykent @cdwilm27 will..." + (show)
@colleenyoung

Welcome Theresa. I'm confident that fellow SMZL'ers like @scsimpson @waltera @kayak4me @juiceylucy @reneemp @stanleykent @cdwilm27 will join me in welcoming you to the group.

Here is a paper from 2018, a follow up to a 2007 study that may interest you.
- Rituximab monotherapy in splenic marginal zone lymphoma: prolonged responses and potential benefit from maintenance https://ashpublications.org/blood/article/132/6/666/39401/Rituximab-monotherapy-in-splenic-marginal-zone

Theresa, I can understand your reluctance to start medication, especially one that has side effects like rituximab. Have you spoken to your oncologist about the pros and cons of delaying treatment? Might getting a second opinion at Mayo Clinic be an option for you?

What are the activities that bring you joy?

Jump to this post

thank you for the paper, it was very encouraging about treatment. I am now due back for repeat studies in 6 months and during that time I hope to settle on a second opinion professional. I am certainly considering the Mayo Clinic. My local oncologist has put the ball in my court at the present. I am slowly developing a self care routine with activity and connections that increase a sense of well-being, but I'm still trying new things. It's a balancing act between denial and obsession I'm getting better at.

REPLY
1 reply
theresad2 | @theresad2 | Apr 1, 2022
In reply to @scsimpson "Theresa I can't say to much about watch and wait but I can respond to to..." + (show)
@scsimpson

Theresa
I can't say to much about watch and wait but I can respond to to Rituximab use. I had my enlarged spleen removed in July of 2017. Then pet scan showed that lymphoma was in my bone marrow. So I had 4 weeks of Rituximab which put me in remission. Which I am currently still in. I had no side effects with the Rituximab. I wish you well.

Jump to this post

I just got a reprieve for another 6 months before I return for repeat studies. I am happy about this but wonder sometimes if I should let go of resisting treatment. Especially when I hear you had no side effects! Bravo! That is encouraging, thanks!

REPLY
1 reply
theresad2 | @theresad2 | Apr 1, 2022
In reply to @reneemp "Theresa, It’s been around 7 months since my diagnosis and for me the biggest challenge of..." + (show)
@reneemp

Theresa,

It’s been around 7 months since my diagnosis and for me the biggest challenge of watch and wait for me is the mental game. I try to walk a lot and stay active. I am meeting with doctors at Mayo at the end of April since they work across and with other medical fields of study. I find this site useful too so welcome.

Jump to this post

I do find activity is great for my attitude and I am glad I am able. Walking and talking with a friend on a nice day is an important part of my self care. Unfortunately my spleen is so enlarged (21 cm) some things like yoga only increase my awareness and concern. I just got clearance to wait another 6 months before I repeat studies so I am happy I can let it go for the summer. It does help hearing how others cope. Let us know how the April visit goes!

REPLY
2 replies
stankent | @stanleykent | Mar 30, 2022
In reply to @reneemp "Theresa, It’s been around 7 months since my diagnosis and for me the biggest challenge of..." + (show)
@reneemp

Theresa,

It’s been around 7 months since my diagnosis and for me the biggest challenge of watch and wait for me is the mental game. I try to walk a lot and stay active. I am meeting with doctors at Mayo at the end of April since they work across and with other medical fields of study. I find this site useful too so welcome.

Jump to this post

Renee, I hope your visit to Mayo is helpful for you. While I was at Mayo, I found the American Cancer Society office to be to informative. Just stroll through, it has quite a library of books, pamphlets, and at times, offer some talks/presentations on various topics. It's a fairly large glassed-in area on the west side of the Gonda lobby on the ground floor ( street level). Let me know if you have any questions.

REPLY
1 reply
SteveSmzl | @scsimpson | Mar 28, 2022
In reply to @stanleykent "Theresa, Hello, I cannot provide much information as to when treatment actually starts. I'm about your..." + (show)
@stanleykent

Theresa, Hello, I cannot provide much information as to when treatment actually starts. I'm about your age and was diagnosed in June 2019 and am on watch and wait. My disease progression sounds similar to yours. In discussions with my Hematologist, a treatment plan should wait until symptoms worsen which affect quality of life. Could be things like Anemia, bleeding, night sweats, pain, weight loss, etc. Even an overly enlarged spleen can become a health issue. The doctor did comment that treatment is potentially around the 5 year point following diagnosis. But everybody is different as to the timing of all this. I do have some of those mentioned symptoms, but quite mild at this point.
I have my regular 6 month appointment in April for a CT and labs. Plus they will do another bone marrow biopsy and additional labs to establish a new baseline and compare to the 2019 tests/diagnosis. So in a month I'll be a bit more informed.
My SMZL appointments are at Mayo in Rochester and am pleased with their care . In 2019 I did consult with another oncology group and they agreed with the Mayo diagnosis and to watch and wait..
Am wishing you the best and please keep us updated. Thanks

Jump to this post

Theresa
I can't say to much about watch and wait but I can respond to to Rituximab use. I had my enlarged spleen removed in July of 2017. Then pet scan showed that lymphoma was in my bone marrow. So I had 4 weeks of Rituximab which put me in remission. Which I am currently still in. I had no side effects with the Rituximab. I wish you well.

REPLY
1 reply
reneemp | @reneemp | Mar 27, 2022
In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)
@scsimpson

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

Jump to this post

Theresa,

It’s been around 7 months since my diagnosis and for me the biggest challenge of watch and wait for me is the mental game. I try to walk a lot and stay active. I am meeting with doctors at Mayo at the end of April since they work across and with other medical fields of study. I find this site useful too so welcome.

REPLY
2 replies
stankent | @stanleykent | Mar 26, 2022
In reply to @theresad2 "Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I..." + (show)
@theresad2

Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I have been watching and waiting since then. I feel okay and my labs are not too abnormal but my spleen has steadily increased in size. I am more than willing to ignore it but my oncologist is increasingly urging Rituxan because of the spleen size, although he admits it is a judgment call. Anyone with SMZL gone through this decision making process? I realize I am fortunate to have options, but I am very reluctant to leave the watch and wait period until absolutely mandatory. I'd like to consult an oncologist who focuses on SMZL but as rare it is, I'd be happy to find an oncologist who focuses on any marginal zone lymphoma. Any other SMZL patients found particular studies of interest to SMZL? Contrary to conventional wisdom, my blood work has improved since I put aside my vegetarian diet and began adding meat, poultry and eggs to my diet. I try to use this diagnosis as a reminder to appreciate and enjoy what abilities I do have each day. Thanks to those who share.

Jump to this post

Theresa, Hello, I cannot provide much information as to when treatment actually starts. I'm about your age and was diagnosed in June 2019 and am on watch and wait. My disease progression sounds similar to yours. In discussions with my Hematologist, a treatment plan should wait until symptoms worsen which affect quality of life. Could be things like Anemia, bleeding, night sweats, pain, weight loss, etc. Even an overly enlarged spleen can become a health issue. The doctor did comment that treatment is potentially around the 5 year point following diagnosis. But everybody is different as to the timing of all this. I do have some of those mentioned symptoms, but quite mild at this point.
I have my regular 6 month appointment in April for a CT and labs. Plus they will do another bone marrow biopsy and additional labs to establish a new baseline and compare to the 2019 tests/diagnosis. So in a month I'll be a bit more informed.
My SMZL appointments are at Mayo in Rochester and am pleased with their care . In 2019 I did consult with another oncology group and they agreed with the Mayo diagnosis and to watch and wait..
Am wishing you the best and please keep us updated. Thanks

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 25, 2022
In reply to @theresad2 "Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I..." + (show)
@theresad2

Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I have been watching and waiting since then. I feel okay and my labs are not too abnormal but my spleen has steadily increased in size. I am more than willing to ignore it but my oncologist is increasingly urging Rituxan because of the spleen size, although he admits it is a judgment call. Anyone with SMZL gone through this decision making process? I realize I am fortunate to have options, but I am very reluctant to leave the watch and wait period until absolutely mandatory. I'd like to consult an oncologist who focuses on SMZL but as rare it is, I'd be happy to find an oncologist who focuses on any marginal zone lymphoma. Any other SMZL patients found particular studies of interest to SMZL? Contrary to conventional wisdom, my blood work has improved since I put aside my vegetarian diet and began adding meat, poultry and eggs to my diet. I try to use this diagnosis as a reminder to appreciate and enjoy what abilities I do have each day. Thanks to those who share.

Jump to this post

Welcome Theresa. I'm confident that fellow SMZL'ers like @scsimpson @waltera @kayak4me @juiceylucy @reneemp @stanleykent @cdwilm27 will join me in welcoming you to the group.

Here is a paper from 2018, a follow up to a 2007 study that may interest you.
- Rituximab monotherapy in splenic marginal zone lymphoma: prolonged responses and potential benefit from maintenance https://ashpublications.org/blood/article/132/6/666/39401/Rituximab-monotherapy-in-splenic-marginal-zone

Theresa, I can understand your reluctance to start medication, especially one that has side effects like rituximab. Have you spoken to your oncologist about the pros and cons of delaying treatment? Might getting a second opinion at Mayo Clinic be an option for you?

What are the activities that bring you joy?

REPLY
1 reply
theresad2 | @theresad2 | Mar 24, 2022
In reply to @scsimpson "I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I..." + (show)
@scsimpson

I was diagnosed in May with splenic marginal zone lymphoma. For the past 6 years I have been dealing with Itp. Now it turns out that it was smzl.I had my spleen removed in July. Now I am waiting until April to have another bone marrow biopsie to see if the lymphoma in my marrow go down. Does anyone have any advice?

Jump to this post

Hi, I am 68 years old and was diagnosed with SMZL in November of 2019. I have been watching and waiting since then. I feel okay and my labs are not too abnormal but my spleen has steadily increased in size. I am more than willing to ignore it but my oncologist is increasingly urging Rituxan because of the spleen size, although he admits it is a judgment call. Anyone with SMZL gone through this decision making process? I realize I am fortunate to have options, but I am very reluctant to leave the watch and wait period until absolutely mandatory. I'd like to consult an oncologist who focuses on SMZL but as rare it is, I'd be happy to find an oncologist who focuses on any marginal zone lymphoma. Any other SMZL patients found particular studies of interest to SMZL? Contrary to conventional wisdom, my blood work has improved since I put aside my vegetarian diet and began adding meat, poultry and eggs to my diet. I try to use this diagnosis as a reminder to appreciate and enjoy what abilities I do have each day. Thanks to those who share.

REPLY
3 replies
stankent | @stanleykent | Dec 25, 2021
In reply to @pkh "The one symptom I have every 2-3 months, is stomach pain. I feel like I have..." + (show)
@pkh

The one symptom I have every 2-3 months, is stomach pain. I feel like I have food poisoning, nausea, but no vomiting. My spleen feels like it is the size of a watermelon for a couple days, then it all goes back to normal or as normal as an enlarged spleen can be.
Just wondering, is this a symptom that should be shared with the hematologist at the time it is happening or if it persists longer than a day or 2?
Any sharing of others with this symptom is appreciated.

Oh and Merry Christmas to All! 🎄🎄

Jump to this post

My spleen is pushing on my stomach and have discomfort continually, It seems to be getting a bit worse over the past year, and even a bit more after a meal. But does not change periodically as you have indicated. I agree with Colleen about recording symptoms and communicating with your doctor.

REPLY
View MoreView Less
Please sign in or register to post a reply.