Has anyone experienced High Grade refractive Type B Burkitts Lymphoma

Hi Paul, sadly is does look like no one is going to reply, over the 8 years I have been involved with lymphoma the have only been a few who have had burkitts and some who have had burkitts like as you will know its hard to distinguish between this and dlbc 

Over that time the have been 1 or maybe 2 who I recall relapsed within an 18 months period and they had aggressive treatment, have they told you what treatment you are likely to have? and have they suggested a stem cell transplant for a long term remission?

John

Hello John, Most interesting,

                I did not expect any replies at all. I have had this disease and it was dreadful. I say I did not expect any replies as I was told no-one had survived my particular type, However I learnt that 1 person In Norway and also Japan had survived. To answer your question my treatment was MVAC, CODOX R which did not work then EPOCH R which was highly aggressive (1200 hours, yes 1200) and also for the first time at maximum dose from the first hour, followed by ESHAP for stem cells, tried twice but failed as I was too broken apparently, and then Radiotherapy this Xmas just gone.

                 I'm told that I'm unusual, I sense this may be correct as Mr A Macmillan presented the case recently internationally. Life is retrieved after being in hospital for 7 months as inpatient, and life is great. Its amazing what can be done with the right frame of mind, or at least that my consultants have said. I've written a book to get it all out as I'm tempted to blot it out, but I'm not allowed to mention it on this forum as its 'selling'. I am raising a fortune for Nottingham haematology centre and cancer Research.

                 I've got another 9 months to wash out the chemo, but I can now walk and talk again, I lost these functions.. My prognosis is currently amazingly Good.

                regards Paul

       .

Wow, EPOCH is some journey but I fall short of your 1200hrs. I have T Cell and that is on the rare side. Had 2 SCT first one did not graft but 2nd is looking good 18 months on. Stay strong Paul, the right frame of mind and outlook helps.

Hello Highander,

      You are quite right people say you must be positive, I disagree, you have to be bloody determined and relentless. In my case I am not due any more treatment and as the cancer was so aggressive I'm told if it does not reappear with a few weeks it can never return. Well, its been 6 months and I feel like I'm on the mend. Still exhausted and weak but the chemo is going away slowly. For you I am delighted that stem cell transfer worked, it failed with me twice and now its no longer required, I'm very optimistic for you..

Thanks Paul,

I was meeting with my Macmillan nurse practitioner today as she has invited me to go with her to talk to 100+ 2nd year med students about living with my condition and my treatment Journy, this will be fun

Hello highlander, it's great that you are doing this. I would do the same. I've been encouraged to join a clinical trial, cancer research panel of consultants in London. My interview is next month. If I can help I will do my best for everyone else. 

Hi Paul, I have just seen your post.  My son had Burkitts Lymphoma 8 years ago when he was 20.  He was treated with alternating R-Codox-M and R IVAC-M  It was a long tough battle and he was an inpatient in hospital for six months and when first diagnosed we were told he wouldn't survive and he was in intensive care and on dialysis for a while.  He never had a stem cell transplant.  Not only is he now well and healthy but regularly competes in triathlons and ran the London marathon in April.

As you quite rightly say, it is gruelling and it was pure bloody mindedness and determination that got him through.  However, I hope this gives you hope.

Good luck with the rest of your treatment.

Thanks JD, my post was post cancer. I've survived a dose of burketts although the IVAC and CODOX did not work. I was put on EPOCH R it was highest possible dose from day 1amd it worked. Left hospital after 7 months back at work after another 4. My total respect for your son, this is not a friendly cancer. Amazing that he runs marathons, I can only just walk again. I chose to write a book called epoch r available on well known Internet publisher, (I will get moderated for saying that) but I'm doing what I can for others. 

. You need to be tough and stubborn but it can be done. I'm so happy to hear about your son, he will be so much bigger for the experience. Regards. 

Hi Paul,

My adult brother has Burkitts and underwent 4 rounds of r codox m ivac which were not successful and a salvage chemo d-hap (also not successful). If I’m reading this all correctly (sorry family chemo brain) the Mcgrath regimen didn’t work for you but EPOCH did? Right now the drs need to see that the tumors can be controlled by the chemo to move forward with a SCT (I’m a match) any additional information you can provide would be greatly appreciated. 

Hi  and a warm welcome to the Macmillan Community but sorry you had to find us.

I will tag  to bump your post as this thread is a few months old now.

I had R-EPOCH a few years back. The EPOCH with the addition of the R = Rituximab did the trick for me (I had a T cell Lymphoma) and got me clean enough (I did have some cancer cells in my body) to go on and have an Allo SCT (from my brother)..... well I had two Allo's but that's another story.

If you move on to the Magical Mystery Tour that is SCT then check out our very supportive SCT forum and also the Macmillan SCT info.

Always around to help you out and all the best to your brother for his next part of his journey.