Any survivors of Non-Hodgkin's lymphoma out there?

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?

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.

Hello @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?

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 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.

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.