Hello My Name is Paul

Hi Paul Weller 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.

Sorry for the delay in getting back to you but I had to wait until the Macmillan Community Team removed your full name - the Community is an anonymous support platform for everyone's safety as the world can look at the posts but you have to register to actually post on the Community.

I don’t have Post-transplant lymphoproliferative disorder but I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low Grade 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.

There have been a few pass through the Community over the years with PTLD so let's look for then to pick up on your post.

I have had 2 Allo (donour) Stem Cell Transplants (SCT) as part of my 23 year journey (see my story through the link at the bottom of my post).

If you have to go down the SCT route you will have to go through a good number of tests to see if your body can deal with the challenges of the SCT process..... see the list below.

The tests and examinations you will have are:

*An electrocardiograph (ECG) to check your heart's rhythm and electrical activity

*An echocardiogram scan used to look at your heart and nearby blood vessels

*An X-Ray or CT to check the condition of your organs such as the lungs and liver

*A Kidney function test

*A very detailed Lung Function test to check your lung function and lung capacity

*A dental examination including x-ray's to check for any hidden mouth problems as the Stem Cell Transplant process can develop severe gum and mouth issues with bad ulceration. If major dental treatments are required this may delay or even make the Stem Cell Transplant not an option.

*Blood tests will be done to check your levels of blood cells, to assess how well your liver and kidneys are working.

*For an Allo SCTs blood tests are used to have data to enable accurate post Stem Cell Transplant Chimerism tests to be completed to check on transplant engraphment.

*A very long ‘talk’ with a SCT consultant going through all the process including all the ups and downs that will come along.

* Meet my SCT coordinator and was given a walk round the SCT unit

The unit I was treated in had is meeting with a Phycologist as the Stem Cell Transplant process can be a hard phycological journey so we want to make sure you understand what you are letting yourself in for. The Phycologist also come in once a week to see us when I was in the SCT unit.

We also were seen by a Financial Advisor as the Stem Cell Transplant process may have a long effect on your ability to work and ensure we were getting all the beds if it’s that were available to us.

I was in the SCT unit for 28 days for my first SCT then 29 days for my second but I also had 3 weeks radiotherapy leading up to my second SCT. We live in Inverness and my SCT unit was in Glasgow so we basically had to move down to Glasgow for the period of both SCTs...... so you will be far longer than a few days unfortunately.

I can't find the drug Rixuimav....... so can't give you any information. Could it be Rituximab?....although you had this as part of your R-CHOP

Always around to help more or just to chat.

Sorry to hear this, but in our parents' day, there would have been no hope whatsoever. Sadly, the immune suppression required for solid organ transplants makes one much more susceptible to blood cancers. You have tonnes of knowledge and support here. The stem cell transplant will knock the wind out of you for a bit, but recovery should be nice and steady.

Hi Paul, My husband also has PTLD - he had his kidney transplant last January (2022) and by May had his cancer diagnosis - it moved very fast. He's had various types of chemo since then - rituximab, RCHOP, and two others I can't remember the names of, plus he's taken part (unsuccessfully) in a clinical trial. With each chemo type, some of his cancer has been responsive, but in other areas his low immunity has allowed the EBV virus (that drives the cancer) to thrive causing the cancer to grow - a case of one step forward, two steps back. There was literally nothing left to try until CAR T cell therapy was approved by the NHS at the end of this January for PTLD patients. So - he's just started that this week. Apparently there's been success with it (for PTLD patients) in the US so hopefully it can help us. Good luck with your chemo - will have everything crossed for you. 

Do hope that it is a success for Paul and yourself.  Lots of love and hugs.