I have Splenic Marginal Zone Non Hodgkin's lymphoma. Diagnosed in January of this year. Started chemo/immunotherapy in January also Bendamustine and Rituxan aling with Neulasta. Have had 6 rounds. Spleen has shrunk and i feel better. Fatigue is a problem but continuing to exercise helps.
I have Splenic Marginal Zone Non Hodgkin's lymphoma. Diagnosed in January of this year. Started chemo/immunotherapy in January also Bendamustine and Rituxan aling with Neulasta. Have had 6 rounds. Spleen has shrunk and i feel better. Fatigue is a problem but continuing to exercise helps.
I'm glad that you are feeling better since you started the chemo/immunotherapy treatment.
If you are comfortable sharing more, what symptoms were you having that led to this diagnosis? Have you had any significant side effects from the treatment?
I appreciate you sharing your diagnosis here on Connect. After reading some of your previous posts, I see that you were diagnosed in 2019 and that you have had surgery, chemotherapy and also a stem cell transplant. I would like to introduce you to another mentor on Connect, Lori @loribmt, who also had a stem cell transplant for a different type of cancer.
I had DLBCL. I received eight cycles of chemo and a maintenance dose of... I forgot.... for six months.... maybe. I had received Intrathecal Chemotherapy, which was terrifying... I had FNAC and BIOPSY.... the scar mark is still visible. I was 7 or 8 years old; I bottled up all these things. Tata Memorial Hospital, Mumbai... I am searching for my treatment data. I have all of the photocopies, though.... my mother does not let me open those, some superstition, I guess...
I am doing ok...
Today I will open those, I have bottled up all of my emotions, and I need to share those I guess. To be honest, I was writing a research paper and found out that there is something like this group..... I joined instantly.....
I appreciate you sharing your diagnosis here on Connect. After reading some of your previous posts, I see that you were diagnosed in 2019 and that you have had surgery, chemotherapy and also a stem cell transplant. I would like to introduce you to another mentor on Connect, Lori @loribmt, who also had a stem cell transplant for a different type of cancer.
I am currently in remission and am in NED…”No Evidence of Disease.” Following my craniotomy in August 2019 I was given high dose chemotherapy that was administered every other week for 5 days at a time for 5 1/2 months ending in January 2020. I then had a stem cell transplant in 2020.
I am suffering from rheumatoid arthritis (chronic) and balance issues (due to my craniotomy as my brain tumor was removed from cerebellum which controls balance). I now am going to be having to use a walker for my stability issues. I remain optimistic despite my challenges. I am just so very thankful to be alive! As someone once told me, “keep the faith!”
I am currently in remission and am in NED…”No Evidence of Disease.” Following my craniotomy in August 2019 I was given high dose chemotherapy that was administered every other week for 5 days at a time for 5 1/2 months ending in January 2020. I then had a stem cell transplant in 2020.
I am suffering from rheumatoid arthritis (chronic) and balance issues (due to my craniotomy as my brain tumor was removed from cerebellum which controls balance). I now am going to be having to use a walker for my stability issues. I remain optimistic despite my challenges. I am just so very thankful to be alive! As someone once told me, “keep the faith!”
@gmal261 My goodness, you’ve had more than your share of medical drama over the years! I’m so happy to see you’re in remission with no evidence of disease! I was just talking with another member how we really relish hearing “you’re unremarkable” from our doctors! Congratulations on the remission!
Can you tell me a little more about your stem cell transplant? I’m expecting you had an Allogenic transplant using cells for a donor? Does your doctor feel the rheumatoid arthritis is connected to any graft vs host disease?
I also had CNS Large B Cell Non-Hodgkins Lymphoma. I’m almost 7 years Cancer free living a normal life. Treatment was long and intense, but it obviously worked.
I'm glad that you are feeling better since you started the chemo/immunotherapy treatment.
If you are comfortable sharing more, what symptoms were you having that led to this diagnosis? Have you had any significant side effects from the treatment?
Bloating, stomach full after eating just a little, constipation. Had a CT scan that showed I had an enlarged spleen last year. By January ended up in the ER as I had stomach pain and couldn't even lie on my side as my spleen had really become enlarged . My oncologist ordered a bone marrow biopsy on a Wednesday which showed cancer in my bone marrow. By Friday oncologist diagnosed my with SMZL stage 4. By the next Monday I was doing chemo and immunatherapy. First rounds were rough, broke out in a rash and was really nauseated but they give you many anti nausea drugs. Rounds 2, 3, 4, and 5 were not that bad. Round 6 took me about 2 weeks to get over that. Did not lose my hair! Feel better now and my spleen has gone down from 22 to about 15.
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Welcome @tanzirislambritto. I moved your question to the Blood Cancers support group here: https://connect.mayoclinic.org/group/blood-cancers-disorders/
I'm also tagging members like @nodunk @elainejarrett @gmal261 @georger @cindycoult @bogie60 who have experience with non-Hodgkin's lymphoma.
Tanzir, what type of non-Hodgkin's lymphoma did/do you have? What treatments did you have? How are you doing now?
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3 ReactionsI have Splenic Marginal Zone Non Hodgkin's lymphoma. Diagnosed in January of this year. Started chemo/immunotherapy in January also Bendamustine and Rituxan aling with Neulasta. Have had 6 rounds. Spleen has shrunk and i feel better. Fatigue is a problem but continuing to exercise helps.
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4 ReactionsHello @trixie1
I'm glad that you are feeling better since you started the chemo/immunotherapy treatment.
If you are comfortable sharing more, what symptoms were you having that led to this diagnosis? Have you had any significant side effects from the treatment?
Hi there @trixie1! Thanks for reaching out! I was diagnosed with
Primary Diffuse Large B Cell Non-Hodgkin Lymphoma of the CNS ()brain tumor).
Hello @gmal261,
I appreciate you sharing your diagnosis here on Connect. After reading some of your previous posts, I see that you were diagnosed in 2019 and that you have had surgery, chemotherapy and also a stem cell transplant. I would like to introduce you to another mentor on Connect, Lori @loribmt, who also had a stem cell transplant for a different type of cancer.
How are you feeling now, @gmal261?
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1 ReactionI had DLBCL. I received eight cycles of chemo and a maintenance dose of... I forgot.... for six months.... maybe. I had received Intrathecal Chemotherapy, which was terrifying... I had FNAC and BIOPSY.... the scar mark is still visible. I was 7 or 8 years old; I bottled up all these things. Tata Memorial Hospital, Mumbai... I am searching for my treatment data. I have all of the photocopies, though.... my mother does not let me open those, some superstition, I guess...
I am doing ok...
Today I will open those, I have bottled up all of my emotions, and I need to share those I guess. To be honest, I was writing a research paper and found out that there is something like this group..... I joined instantly.....
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Like -
Helpful -
Hug
4 ReactionsI am currently in remission and am in NED…”No Evidence of Disease.” Following my craniotomy in August 2019 I was given high dose chemotherapy that was administered every other week for 5 days at a time for 5 1/2 months ending in January 2020. I then had a stem cell transplant in 2020.
I am suffering from rheumatoid arthritis (chronic) and balance issues (due to my craniotomy as my brain tumor was removed from cerebellum which controls balance). I now am going to be having to use a walker for my stability issues. I remain optimistic despite my challenges. I am just so very thankful to be alive! As someone once told me, “keep the faith!”
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Like -
Helpful -
Hug
3 Reactions@gmal261 My goodness, you’ve had more than your share of medical drama over the years! I’m so happy to see you’re in remission with no evidence of disease! I was just talking with another member how we really relish hearing “you’re unremarkable” from our doctors! Congratulations on the remission!
Can you tell me a little more about your stem cell transplant? I’m expecting you had an Allogenic transplant using cells for a donor? Does your doctor feel the rheumatoid arthritis is connected to any graft vs host disease?
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Helpful -
Hug
1 ReactionI also had CNS Large B Cell Non-Hodgkins Lymphoma. I’m almost 7 years Cancer free living a normal life. Treatment was long and intense, but it obviously worked.
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Helpful -
Hug
8 ReactionsBloating, stomach full after eating just a little, constipation. Had a CT scan that showed I had an enlarged spleen last year. By January ended up in the ER as I had stomach pain and couldn't even lie on my side as my spleen had really become enlarged . My oncologist ordered a bone marrow biopsy on a Wednesday which showed cancer in my bone marrow. By Friday oncologist diagnosed my with SMZL stage 4. By the next Monday I was doing chemo and immunatherapy. First rounds were rough, broke out in a rash and was really nauseated but they give you many anti nausea drugs. Rounds 2, 3, 4, and 5 were not that bad. Round 6 took me about 2 weeks to get over that. Did not lose my hair! Feel better now and my spleen has gone down from 22 to about 15.
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Like -
Helpful -
Hug
3 Reactions