Hi Everyone,
I am Shunn, I am diagonosed with PMBCL on friday. Now my consultant gave me treatment options which are R-Chop (which is one day chemo as outpatient for 6 cycles every two weeks) or DA-EPOCH-R chemo (which is inpatient which require me to stay at the hospital 4/5 days every three weeks of the chemotherapy. Now with the R-Chop, there's 2/3% of radiation therapy. But with the other one, no radiation therapy is needed.
I am wondering if anyone has experienced with the latter treatment and how is the experience look like compared to one day chemo every two weeks?
Thanks!
Hi Shunn and a warm welcome to this corner of the Community although I am always sorry to see folks joining us. I am Mike and I help out around our various Lymphoma groups.
I don’t have Primary mediastinal large B-cell lymphoma (PMBL) but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-grade non-Hodgkin lymphoma eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.
Back the in late 2013 I had R-EPOCH based on the same rhythm as your proposed DA-EPOCH-R (It’s basically the same treatment just that DA basically means that the treatment can be Dose Adjusted during the treatment - my treatment was never changed as I had to have the full force of the treatment)
I was in 5 nights/6 days on my 2 IV pumps 24/7 for over 120hrs and honestly had no real issues……. you can see my full story in the link below.
I was told that R-CHOP was not a suitable treatment for getting me into the position of going into Stem Cell Transplant as the R-EPOCH would only give me temporary remission.
I talk with people who have had challenges with both treatments and some just don’t - it is all an individual journey…… no one journey is the same.
Hi Mike,
Thanks so much for your reply. It is really helpful. I'll read at your story to get full insight as well. I was weighing pros and cons, and also taking into consideration of quality of life aspect on one day chemo (every 2 weeks) and 4/5 days chemo (every 3 weeks), but at personal level, I don't mind intense chemo. At the moment, I am leaning towards DA-R-Epoch but before I made a decision I want to see the different aspects and learn from other lived experiences.
Really appreciate it, Mike. THANKS
My team said that the R-EPOCH was the big brother of R-CHOP as it is more intense but this is why it’s given over the longer time as this reduces the chances of reactions and the ‘hit’ on the body.
I found I got into a rhythm when in hospital and as much as it sounds dreadful to be in hospital it was ok.
Although R-CHOP is overall less toxic people say that they have issues with R-CHOP but this may be down to it given quicker.
I will also say (I need to add this to my profile) that I had a lot of antihistamines as I have a lot of drug allergies (some of these drugs are grown in animals) so I slept a lot…… but I did read all the books in the Gane of Thrones series
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