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A MyLymphomaTeam Member asked a question 💭
Indianapolis, IN

I would like to compare treatments with patience also dealing with double or triple hit diffuse large b-cell lymphoma, Non-Hodgkins. I'm new here and would appreciate having those conversations. Thank you!

August 6, 2019
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Answer Summary

Members with double or triple hit diffuse large B-cell lymphoma connected over their shared diagnosis, comparing treatment experiences and... Read more

Members with double or triple hit diffuse large B-cell lymphoma connected over their shared diagnosis, comparing treatment experiences and offering mutual encouragement. Several members described undergoing R-EPOCH chemotherapy followed by stem cell transplants (some using their own stem cells), with outcomes ranging from recent clean scans to being nearly five years cancer-free, alongside practical tips about managing side effects like constipation, neuropathy, and reflux with vitamin B6 and PPIs. A recurring theme was the power of staying positive and hopeful despite uncertainty about survival rates, with members celebrating remissions, pushing back against fatigue, and finding strength in one another's stories of resilience.

A MyLymphomaTeam Member

Cancer port
Chemo
Rituxan rhituximab
Survivor

August 6, 2019
A MyLymphomaTeam Member

Hi Ruby! I don't think there is a definite answer, just keep up with your treatment and I wish you the best! They are always looking for better treatments. Stay positive! 🙏🏼

May 16, 2020
A MyLymphomaTeam Member

Jbb, how are you doing?

November 17, 2019
A MyLymphomaTeam Member

3H LBCL stage 3 - R-EPOCH (based on reading and hemo/oncologist was in agreement and fully supportive not to "waste time" on R-CHOP). Diagnosed April-May '22. Clear scans after 3 infusions, CR, declared in remission Oct. '22. My treatment was OUTPATIENT, my main complications were constipation and neuropathy, which was mild and cleared with vit. B6. I had duodenal ulcer with/or right before being diagnosed, that complicated things - be sure you take or ask about taking PPI on treatment weeks (1 week, two weeks layoff), as prednizone produces reflux and may aggravate ulcers. My dosages were not adjusted. Find a study from Brisbane doctors who treated 2H and 3H patients with good results - it was a big encouragement for me. I'm in my 70s, was in great shape before this -35-40 miles of movement a week, etc. Fatigue is one problem post-treatment, but not too bad.
Good luck, it is possible to push it back.

August 12, 2023
A MyLymphomaTeam Member

I have Double hit NHL. I was diagnosed 2 years ago and now on Rituxin maintenance. How are uou? I have read on Indy the 3 years is survival rate. Do you know anything about this. I am feeling ok but feel tired all the time.

May 16, 2020

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