Non-Hodgkin lymphoma

Affected by NHL? Join this group to share experiences and ask questions to people who understand what you're going through.

Relapse after Auto SCT

Sarstef
Posted by

Hello all,

I am new to this group. My partner had NHL with a tumour in his chest area. He had RCHOP and then in grew quite quickly so moved onto RICE and then moved on to have an auto SCT. It was touch and go for a while but he managed to pull through.

Fast forward 4 years and he has relapsed. He was told previously that if he does relapse there would be no hope of a cure and that they could only prolong his life with chemo. We have two small children together and he is 34 years old. I’m holding onto hope at the moment but It feels with keep getting bad news. He goes for scans next week but at this stage it’s in a testicle and he has swollen lymph nodes in his neck. Looking for anyone that may have been through a similar situation or offer any advice. 

Thank you

Sarah

johnr
Posted by

Hi Sarah, the is always hope and at this point I would suggest 2 types of treatment to discuss, one is an allo transplant where he gets the cells from a donor and the second is I believe the Christie in Manchester are starting CAR-T cell trials, other hospitals may be involved to.

Is he being treated locally or at one of the top cancer hospitals ? if not its worth seeking a second opinion and a transfer to one of the top hospitals. 

The will be challenges ahead but do hang on to that hope and don't let anyone snatch it away.

John 

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
Thehighlander
Posted by

Hi Sarah, good to see you have found us, I have little or no connection so can't say much but is see our John has been in contact. 

Totally did not click that it was you who had posted on the SCT forum so it sounds as though I had not talked with you before - sorry.

Keep on pushing the doors and in reality there is not much that can be done or said until he gets some clear information.

Highlander ((hugs))

Mike - Thehighlander

Some journeys take us far from home but some adventures lead us to our destiny CS Lewis

SCT NHL TCell

Sarstef
Posted by

Hello john, 

thank you so much for your reply. We have just found out that he has testicular cancer not a relapse of NHL. In my mind it’s a positive- reason being there’s still hope of a cure now. It’s in the early stages and doesn’t seem to have spread so we are extremely fortunate. So here we go on another Cancer journey but I’m sure he will beat it again. 

Kindest regards

Sarah

johnr
Posted by

deleted as misread

Hi I don't know a lot about TC but  beatable sounds good, so everything crossed thats the case 

I am sure you and he will get lots of good advice from the TC group

we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are