Thanks for letting me know about your experience with Rituximab. When did you have treatments and how are you doing now? How big was your spleen when you started the treatment? My grandchildren are 8 and 5. I do not wear a mask as no one else in my family does. I am hoping all goes well for both of us. Thanks so much for getting back to me.
Thanks for letting me know about your experience with Rituximab. When did you have treatments and how are you doing now? How big was your spleen when you started the treatment? My grandchildren are 8 and 5. I do not wear a mask as no one else in my family does. I am hoping all goes well for both of us. Thanks so much for getting back to me.
Hi Elaine, My Rituximab treatments were 5 years ago. 1 x weekly for 4 weeks. At that time, I had inflammation on my spinal cord caused by over zealous B-cells. The inflammation eroded the myelin sheath around my spinal cord and I lost the feeling from my waist to my toes. So, not the same diagnosis as yours but with another condition related to a B-cell involvement. It was a miracle drug for me in stopping the inflammation caused by the B-cells. There has been no relapse and I had no side effects from the drug…except for the first infusion which is common. My infusion team was alert and ready…handled within moments. Then smooth sailing after that.
Rituximab has become a mainstay in the therapy of a broad variety of B-cell malignancies and has a good track record for treating some forms of lymphomas such as yours.
Because this is an anti-inflammatory drug, it may suppress your immune system temporarily. B cells are an important part of your immune system that defends agains viruses, bacteria and parasites. You may be more vulnerable to colds, flu, Covid, RSV with a longer recovery time. (This is information I received…just passing it along). It’s up to you whether you mask or not.
Being immune compromised I still wear a mask routinely when in busy stores, elevators, community meetings, even gatherings with friends/family. They do work to protect us from airborne illnesses.
Hi Elaine, My Rituximab treatments were 5 years ago. 1 x weekly for 4 weeks. At that time, I had inflammation on my spinal cord caused by over zealous B-cells. The inflammation eroded the myelin sheath around my spinal cord and I lost the feeling from my waist to my toes. So, not the same diagnosis as yours but with another condition related to a B-cell involvement. It was a miracle drug for me in stopping the inflammation caused by the B-cells. There has been no relapse and I had no side effects from the drug…except for the first infusion which is common. My infusion team was alert and ready…handled within moments. Then smooth sailing after that.
Rituximab has become a mainstay in the therapy of a broad variety of B-cell malignancies and has a good track record for treating some forms of lymphomas such as yours.
Because this is an anti-inflammatory drug, it may suppress your immune system temporarily. B cells are an important part of your immune system that defends agains viruses, bacteria and parasites. You may be more vulnerable to colds, flu, Covid, RSV with a longer recovery time. (This is information I received…just passing it along). It’s up to you whether you mask or not.
Being immune compromised I still wear a mask routinely when in busy stores, elevators, community meetings, even gatherings with friends/family. They do work to protect us from airborne illnesses.
Welcome to Mayo Connect @waynepowell. While you’re waiting for other members with SMZL to pop into the discussion, I found some informational articles for you that will help introduce you to your new diagnosis. It can be beneficial to learn as much as you can but there is also a point where overloading on info can be burdensome and cause undo stress. ☺️
Hello, For me, in 2019, age 67, routine lab showed lymphocytes were higher than expected and with much additional testing, I received the SMZL diagnosis. Started watch and wait with checkups every 6 months. Mainly, my lymphocytes were gradually increasing and platelets were gradually decreasing In 2022 and I received 4 rituxan infusions. The treatment brought my blood tests back into normal ranges and reduced spleen size. Since then I'm on watch and wait and my six month checkups show gradual increases of lymphocytes, reduction of platelets (now both are out of normal range) and spleen size is increasing At some point, I expect this progression will require additional treatments.
I'm curious of your location, symptoms, testing, and diagnosis. As you have probably read, there seems to be a broad range patients, their symptoms, and treatments for SMZL. Since 2019, it is encouraging there has been additional treatments made available and expect there will be more in the future. Also want to say, it has been difficult, mentally, to live with this, but as time goes on it has become easier and has become my new normal.
Best wishes to you and feel free to ask any questions.
Hello, For me, in 2019, age 67, routine lab showed lymphocytes were higher than expected and with much additional testing, I received the SMZL diagnosis. Started watch and wait with checkups every 6 months. Mainly, my lymphocytes were gradually increasing and platelets were gradually decreasing In 2022 and I received 4 rituxan infusions. The treatment brought my blood tests back into normal ranges and reduced spleen size. Since then I'm on watch and wait and my six month checkups show gradual increases of lymphocytes, reduction of platelets (now both are out of normal range) and spleen size is increasing At some point, I expect this progression will require additional treatments.
I'm curious of your location, symptoms, testing, and diagnosis. As you have probably read, there seems to be a broad range patients, their symptoms, and treatments for SMZL. Since 2019, it is encouraging there has been additional treatments made available and expect there will be more in the future. Also want to say, it has been difficult, mentally, to live with this, but as time goes on it has become easier and has become my new normal.
Best wishes to you and feel free to ask any questions.
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Thanks for letting me know about your experience with Rituximab. When did you have treatments and how are you doing now? How big was your spleen when you started the treatment? My grandchildren are 8 and 5. I do not wear a mask as no one else in my family does. I am hoping all goes well for both of us. Thanks so much for getting back to me.
Hi Elaine, My Rituximab treatments were 5 years ago. 1 x weekly for 4 weeks. At that time, I had inflammation on my spinal cord caused by over zealous B-cells. The inflammation eroded the myelin sheath around my spinal cord and I lost the feeling from my waist to my toes. So, not the same diagnosis as yours but with another condition related to a B-cell involvement. It was a miracle drug for me in stopping the inflammation caused by the B-cells. There has been no relapse and I had no side effects from the drug…except for the first infusion which is common. My infusion team was alert and ready…handled within moments. Then smooth sailing after that.
Rituximab has become a mainstay in the therapy of a broad variety of B-cell malignancies and has a good track record for treating some forms of lymphomas such as yours.
Because this is an anti-inflammatory drug, it may suppress your immune system temporarily. B cells are an important part of your immune system that defends agains viruses, bacteria and parasites. You may be more vulnerable to colds, flu, Covid, RSV with a longer recovery time. (This is information I received…just passing it along). It’s up to you whether you mask or not.
Being immune compromised I still wear a mask routinely when in busy stores, elevators, community meetings, even gatherings with friends/family. They do work to protect us from airborne illnesses.
How soon would you start the infusions?
Thanks so much for your feedback. May start treatment this Fall as my spleen has enlarged a lot. Happy to hear you are doing well.
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1 ReactionI've got SMZL. Just starting to learn about it. It seems it was caught early. Are others interested in sharing?
Welcome to Mayo Connect @waynepowell. While you’re waiting for other members with SMZL to pop into the discussion, I found some informational articles for you that will help introduce you to your new diagnosis. It can be beneficial to learn as much as you can but there is also a point where overloading on info can be burdensome and cause undo stress. ☺️
Mayo Clinic~Marginal zone lymphoma https://www.mayoclinic.org/diseases-conditions/marginal-zone-lymphoma/diagnosis-treatment/drc-20586125
MD Anderson~Marginal zone lymphoma
https://www.mdanderson.org/cancerwise/4-things-to-know-about-marginal-zone-lymphoma.h00-159620223.html
Lymphoma-Canada
https://www.lymphoma.ca/wp-content/uploads/2021/08/LymphomaCanada_FactSheet_SMZL_Digital.pdf
It’s great your doctor’s discovered this early. What symptoms led you to having tests? Are you currently in treatment or in a mindful observation period?
i have splenic marginal zone low grade b cell lymphoma/ Leukemia. I have been in a watch and wait for 5 years.
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2 Reactions@elainejarrett Thanks....
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2 ReactionsHello, For me, in 2019, age 67, routine lab showed lymphocytes were higher than expected and with much additional testing, I received the SMZL diagnosis. Started watch and wait with checkups every 6 months. Mainly, my lymphocytes were gradually increasing and platelets were gradually decreasing In 2022 and I received 4 rituxan infusions. The treatment brought my blood tests back into normal ranges and reduced spleen size. Since then I'm on watch and wait and my six month checkups show gradual increases of lymphocytes, reduction of platelets (now both are out of normal range) and spleen size is increasing At some point, I expect this progression will require additional treatments.
I'm curious of your location, symptoms, testing, and diagnosis. As you have probably read, there seems to be a broad range patients, their symptoms, and treatments for SMZL. Since 2019, it is encouraging there has been additional treatments made available and expect there will be more in the future. Also want to say, it has been difficult, mentally, to live with this, but as time goes on it has become easier and has become my new normal.
Best wishes to you and feel free to ask any questions.
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4 Reactions@waynepowell how were you diagnosed? Did you have any symptoms? Take care Scottie
@stanleykent How were you diagnosed? Did you have any symptoms? Take care Scottie