Highgrade t cell lymphoma

Hi Vickyc69 and welcome to the Online Community, a Community that no one ever really plans to see themselves joining, and so sorry to hear about your partners High Grade T-Cell diagnosis.

Unfortunately some people do react to some of the chemo and in his case encephalopathy which must have been scary.

High Grade normally needs to be treated aggressively, my type of T-Cell was a Low Grade that became aggressive so resulted in a few years of very strong treatment.

Through all my 21 years I never did suffer with sweating apart from a short period a few years after treatment. We honestly could not find a fix, just a change of bedding and cloths every day and lots and lots of water to stop me being dehydrated.

CHOP is an effective treatment so let’s look for this to move in a positive direction.

Encouragement..... at this point in time you will be finding it hard to see any light in this dark tunnel. When I started my main treatment in late 2013 I was told that it was a last throw of the dice as I basically had 2-3 years on the clock if it did not work..... I did have a very hard few years treatment but have come out the other end and now 4 years in remission, I can never be cured but at this point I am not complaining.

Keep posting as we can walk this with you ((hugs))

Thank you so much for replying . At present it feels like a dark tunnel for him with no return .

It gives us hope when we can see  and have input from others . I know it can all be different for everyone but hope is the best   for us at the moment .  

I know the consultants are working hard but sometimes we need  normal  explanations  ! 

Thank you 

What initial treatment did he have the reaction with?

I know this is hard and even harder for the person looking on - like my wife you are all amazing so hang in there.

Looking forward, has Gigi’s team mentioned Stem Cell Transplant?

Hello yes his very first  treatment . He was having 4 days intense  and by day 2 he  had the reaction to the chemo  so they spent 3 weeks with the antidote which theyd never used on someone before . Not one of the staff had experiencethis type of reaction . Last thirsday he had his new chop with immune thapy mixed in .so he was brave  to try again considering he was so unwell.

I can support him  but just need input from others experiences . We have a 20 year relationship so this is so tough 

Thanks for replying 

Victoria 

P.s no stem  cell just the therapy sponsored by Nice not nhs  something called brenttuximab. Mixed with chop . His scary chemo was  IVE  .which hecan never have again 

Brentuximab is used for a number of other types of Lymphomas and from what I have seen is very effective so let’s look for good progress to be made.

((hugs))