Primary Mediastinal B-Cell Lymphoma

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 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  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.

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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  • 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 Pray

  • 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 Joy

    Mike (Thehighlander)

    It always seems impossible until its done - Nelson Mandela

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