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))