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MZL - DLB Cell LYMPHOMA

Blueb profile image
4 Replies

Hello All

Just wondering if anyone else has had a similar experience to mine

In December 2016 i was diagnosed with a MZL (abdominal Mass) stage 3, had treatment of 8 cycles of RCVP, mid term scan showed abdominal mass had shrunk by a third, at the end of the treatment the final scan was showing what looked like the MZL had shrunk more but another larger mass had appeared. Went to hospital for a biopsy with keyhole surgery, results were i now have a DLB Cell Lymphoma. Booked in for 6 RCHOP Chemo, had my first one last week.

I was very fortunate with the RCVP as i had very little side effects, I'm expecting RCHOP give me more problems as it appears to be stronger than the previous treatment

Obviously very worried re outcome, has anyone else had a similar experience?

Any help/suggestions would be great appreciated

Thanks (I am a 63year old male who was fit until being diagnosed last Dec)

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Blueb
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Tinkerbellcgy profile image
Tinkerbellcgy

I had 6 cycles of R-CHOP for Follicular in 2008. The only problem I experienced was neuropathy in my fingers and toes which was caused by the Vincristine component of the chemo cocktail. Once it was removed after the second cycle, it was clear sailing after that. The Follicular remained in remission for 8 years and then I was treated with Rituximab + Bendamustine. I am in remission.

For my DLBCL, I received 5 cycles each of R-BEAM and R-MICE in preparation for an autologous stem cell transplant.

Best wishes with your R-CHOP treatment. Expect positive results and you will likely receive positive results.

oncloudnine profile image
oncloudnine

Hi Blueb. I was treated for Mediastinal LBCL. I had the R-Chop chemo. Six rounds, one every three weeks, with each lasting around six hours. I lost all my hair including moustache and eyebrows. Lost a large amount of weight, absolutely no appetite. Had to be put in reverse isolation for a week because of very low WBC count. Had several infections, two of which required hospitalization, and one required surgery. Was hospitalized twice for dehydration and very, very low blood pressure. I also have neuropathy now in both feet. Don't let me scare you, everyone person is different, some come through it with minimal problems. You do what you have to do to get well.

avegan2 profile image
avegan2

It is great to hear you were fit until being diagnosed. Keep exercising even through all your treatments. I did 6 RCHOP treatments and it wasn't nearly as bad as I had imagined. The cardio and strength training will help keep your mood elevated and is great for keeping your body strong and will help your appetite.

The day after chemo I would still workout but at a lower level. I stopped running after the second treatment. Now I am back to running and swimming and feeling great. You will do well. Stay positive and you will breeze through this treatment.

Blueb profile image
Blueb in reply to avegan2

Thanks for all the replies and the positive comments, now into the third week after the first RCHOP, ready to be hit again on Friday, round 2! of 6, feeling good this week, appetite back and exercising again.

Must say that RCHOP is a lot worse than RCVP, first 12 days, bad nausea( weight loss) constipation and tiredness, quit shocked as RCVP gave me very little side effects, hopefully the next RCHOP won't give me as bad as side effects as i will be going into it at stronger starting point, but who knows!

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