Hi

Hi KFS54 and welcome to this corner.

When you say PTLD are you referring to Post-transplant lymphoproliferative disorder (PTLD) ?

lymphoma-action.org.uk/.../post-transplant-lymphoproliferative-disorder-ptld

Hi Highlander

Yes, that’s what I’m referring to.

I did a quick site search using the search tool  near the top and there was a few hits all a number years old but put PTLD in and have a look and hit reply to the posts to see if the folks are still looking in.

What are the details of your PTLD?

I have had two Allo (donor) Stem Cell Transplants so sorry to hear this news as PTLD is rather rare - we do actually have a Stem cell transplant group.

The PTLD was the result of my Immunosuppressant. I had a heart/double transplant 13 years ago and had been on Mycophenolate for all those years. That’s how it started. I’m March I was diagnosed with Lymphoma but they weren’t sure what type and why. It took a while before the Pathologist knew. 

As you see from the Lymphoma Action link above this can be a number of types each with there own treatment process.

Have you been given a plan to move this forward?

Do check out the Lymphoma Action website. LA is a small but very active UK Lymphoma Specific Charity who have lots of information, videos and run regular regional online Lymphoma support groups and indeed a great Lymphoma Buddy Service.

I’ve had 5 cycles of chemo and it disappeared fast, had tumour lysis and was very ill. The Heamatology docs didn’t think I would make but I have. Then they found a small 2 cm patch in my abdomen and decided on radiation but it was cancelled last week. I’m now having another PET scan next Monday. I also found a lump above my right hip bone. Scary times.

I have been on my journey with my rare type of incurable NHL for over 22 years now and have had some rather bumpy and challenging experiences (hit my community name for my story) but I am still here, 6 years into remission which for me is a total win as back in 1999 I was told I would never see any long term remission.

Its all about holding our nerve and trust the experts.

You’ve had a hell of journey. I hope you stay in remission for ever. 
Yes, we have to keep our nerve and trust in the doctors. It’s not always easy though.

We all do what we need to do with some roads smooth-ish and others littered with blood, sweat and tears.

Winning the battle between the ears is the main battle we have to fight as we definitely can’t control the medical side apart from living a balanced and healthy lifestyle.

Let’s see what the PET scan turns up and take it from there - it is what it is abd ride the waves