Just dropping in and saying Hi!

Hi Paul Paul1969 …….. it’s great to hear from you and that you continue to live the dream over in Greece  

I am now 9+ years out from my second Allo SCT, I turn 70 at the end of this year and still living life to the full

Hi all,

Not too sure if this will be allowed, but daughter has just published her interview onto YouTube, done for world courier day. 

She’s continuing to do amazingly well though still has winter battles. Also her ferritin levels have increased again so her team are going to look into whether these are potentially still graft versus host problems even though her allo was 2011. 

Anyway, link for her story (get a tissue!) 

youtu.be/RW-j08GuC54

oh and she’s met up with her donor again recently when she was in Berlin, working. She’s added voice over artist and inspirational speaker to her freelance musician career! 

Hugs xxx

Sad news, daughter was doing her talk on the States, saying I felt a node here in my neck, and was shocked that she felt one. 

She’s seen haematologist today (as a concern about her still-high ferritin levels) and showed him. He immediately started the referring for test regime and said it looks suspicious. Advised getting her social and family circle together…

it’s so so unfair if it’s back again, she’s been in remission since her donor SCT in 2011. But then she’s since had the stress of losing her Dad, my husband, plus my bc recurrence. 

Facing the angst of unknown and ‘where do we go from here, again? 

Hugs xxx

Sorry to hear this. Over the 9.5 years since my second Allo (donor) SCT a few new drugs have been developed for my type of T- Cell NHL…… let’s look for the same for her ((hugs))

Hi Mike, 

thank you, yes, the same for HL (if it’s still that) there are a good handful of new drugs now approved. 

Hugs xxx

Today’s news, the PET scan shows only nodes in neck lit up, 2 on one side (the one that she found), one about 1cm, one other tiny one, and 1 on the other side, again tiny. 

Biopsy results will probably not be ready till next week some time. But she will be seen by Graham Collins, the well regarded lymphoma consultant in Oxford (even Professor Radford, who was her previous consultant now retired, thinks very highly of him) and he will help sort out possible treatments, maybe Nivolumab, maybe even a lymphocyte infusion from her donor (but that would need careful timing as I gather they would maybe react with each other) 

hugs xxx

Let’s look for a clear plan to be put together to put a lid on this ((hugs))

She’s just seen Graham Collins, who is now a professor, and although biopsy results are still not in, they are assuming it’s a recurrence of HL. So his choice was Brentuximab again, 3weeks apart, 3 doses before a PET and then see what’s needed, possibly a DLI then. He’s holding Pembrolizumab or Nivolumab in abeyance as those plus a DLI would need very careful handling as that combination can be fatal. 

Hugs xxx

It’s a fine balance going forward but let’s look for her medical team to navigate the right way forward for her ((hugs))

She’s just had a lengthy phone call with Graham Collins (recorded it too) and he sounds really pleasant but as puzzled as the pathologists in that there’s nothing definite even though they say there was plenty of biopsy to check. There are B cells (but her HL had B cell proteins on them) and they are going to continue testing them to see if they are mono or multi-clonal. That will take a further week or so. 

He’s going to see her again in a couple of months and scan again, but did say that post transplant this sort of thing can happen and it’s not unknown to have reactive nodes which just then suddenly disappear. Also she said the node that was biopsies has changed in shape and he agreed that does happen. I wondered if that means that it’s alerted her immune system to it and got it reacting, too? Who knows? 

But it does feel like it needs a ‘watch and wait’ period.

hugs xxx