Hello! Couldn't find my unique forum group, so I'm here instead.

Hi Sean Herko and a warm welcome to this corner of the Community although I am sorry to see you joining us. I am Mike and I help out around our various Lymphoma groups. 

I don’t have Burkitt lymphoma but I was diagnosed way back in 1999 at 43 with a rather rare, incurable but treatable type of Mycosis Fungus (a type of Cutaneous T-Cell (skin) NHL) eventually reaching Stage 4a in late 2013 so although my Lymphoma ‘type’ is different I do appreciate the challenges of this journey rather well.

With there being over 60 types and sub-types of Lymphoma so just can’t have a group for every type of Lymphoma……and when it comes to the rare ones you could end up the only member for a good period of time.

Like your Burkitt’s Lymphoma having only about 250 people a year diagnosed in the UK my MF has about 450 a year diagnosed.

This brings the challenges of being able to connect with other on the exact same journey….. although there are a lot of cross over in the treatments used for both High Grade and Low Grade NHLs….. so some treatment journeys are basically the same.

What treatment(s) have you had?

For me it took over 16 years before I actually meet and ‘talked’ with someone with the same Lymphoma as me….

But this community and also the various Lymphoma Action - Support Platforms are places where these connections can be made.

We have had a few folks with Burkitt’s Lymphoma have passed through this group so let’s see if they are still looking in and pick up on your post…… there are also a number of folks with Burkitt’s active on the Lymphoma Action groups.

You can also search the site using the Search Tool  near the top and search Burkitt Lymphoma posts.

Each lymphoma journey can be ever so different, you can see my long story in this (LINK).

Always around to chat.

Hey Herko!

Sorry to hear about your rare diagnosis. I really hope your final scan results were good?

I too have a very rare from of lymphoma -though not the same as yours! Mine is plasmablastic lymphoma - about 30 people in the UK at any given time with that one!  Mainly HIV males. I am an HIV neg female.

It's certainly not easy to find your 'tribe' with a cancer so rare,,,,,

Happy to be of support if I can be.

S

Hi SJW58 and a warm welcome to you to this corner of the Mac Community.

Plasmablastic lymphoma (PBL) is indeed rare and zi had a quick search on the site and have not found any posts.

But I also volunteer with Lymphoma Action.and I have talked with a few folks with the same condition in the various Lymphoma Action - Support Platforms…… so worth checking this out.

What treatment have you had?

Always around to chat,

Thanks Mike!

Diagnosed in July '22, I had EPOCH which gave me a short remission, GDP which didn't fully work and now on Lenalidomide and dexamethasone which has given me CR in the last couple of weeks.

I did find one other lovely guy on the lymphoma forum but sadly, he recently passed away from the disease. 

Thanks for the friendly advice and support!

S

I had 6 cycles of R-EPOCH but this was used to open the door to go onto to have 2 Allo (donor) Stem Cell Transplants…….. is this not an option for you?…… or even CAR-T?

Yes, they are looking for a donor as I write this!

I am concerned about the side effects of Allo SCT ... how was it for your ....twice!?

Hey! 

Thanks for the intro.

I've had a round of R-Chop 

Then switched to 2 rounds of IVAC and then 2 rounds of R-CodoxM

So quite intense 

Thanks 

Hey S

Thanks you, passing on the same to you to. Yeah it's very common in HIV Males with mine too, I'm also HIV Neg but when I heard about it, it did worry me. 

Awaiting scan results still sadly. I should hear this week. 

I've been getting cramps and pain in general but I know that's my body just getting better. 

Sean

Fingers crossed for you Sean! The waiting is terrorising. And so are the random pains... Sounds like your body has been through a lot recently though so I guess you are bound to have aches and pains for a bit. 

The drug I am taking just now gives me shocking cramp. I only have to look at my foot and it cramps!

All the best!!

Sarah

Yes twice…… I have yet to talk with someone else who has had 2 Allo SCTs…….. having an Auto (own cells) SCT then an Allo SCT happens a lot but not 2 Allo SCTs.

Basically my first one failed…. due to the type of Lymphoma I have but I am over 8 years out from my second and living a great life.

Yrs I have had some post treatment complications but I am here taking with you.

My story is rather long and complicated but you can make a cuppa and see my story through this > (LINK)

We do have a dedicated Stem Cell Transplant support group so it would be worth jointing the group and having a look round.