CAR-T cell therapy

Hi Mamaduck and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your husband’s relapse.

I am Mike and I help out around our various Lymphoma groups. 

I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 43 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well….. especially as I have had 2 Allo (donor) Stem Cell Transplants (SCT)

CAR-T cell therapy has similarities to SCT with regards to the irradication of his immune system and the all new immune system growing after his re-programmed cells are returned….. this often requires a long-ish stay in hospital until his immune system has developed.

There have been a few folks pass through the community who have had CAR-T so let’s see if they are still looking in….. but I do find that most people move on with life once the process is complete.

You may want to check out Lymphoma Action. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment.

They run various Support Platforms… I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same journey…….

I am also a volunteer with Lymphoma Action and I know that there are a good number of people navigating CAR-T at the moment on the platforms

They also have a great Buddy Service where you or your husband can be linked up with someone who has walked the same treatment journey.

The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.

If CAR-T had been around in late 2013 it would have not been suitable for my types of Lymphoma….. but I am 9+ years out from my last treatment, turn 70 at the end of this year and am living a great life - this can be done (See my story)

I am always around to chat ((hugs))

Oh thank you so much. I am on LA too so will ask on there.

Claire

That’s great Clare, there is a more active community on the LA Facebook group so you will have more chance of getting connections with folks who are ‘in the CAR-T process’ ((hugs))

Hi there. As a spouse of someone with cancer I'm sending you a big hug. I know it's tuff.

My husband has DBCL, he is 44. Started in the colon and spread. R-CHOP didn't do the job so we had 3 weeks of radiotherapy. CAR-T was our next journey.

He had to get a PICC line which he was nervous about but the procedure was not too bad and he was ok. The process leading up to the procedure is not difficult. Once you are admitted and the cells are put back that is when they are hospitalised for at least 14 days. My hubby was very weak and struggled with chills and fevers and slept for about a weak he did not phone or message but he had good care and although it was really really hard to see him like that we are now on day 10 and he is looking so much better. Went for a walk around the ward yesterday and he is eating well. Expecting him home on Tuesday. PET scan on the 29th to see what's what 

The side effects are different for everyone and when you read them all it is very scary but we doing ok so far. I would say it is worse that the chemo but he will be in a ward that specialises in the recovery from this specific treatment and he will be monitored very very closely and all issues will be dealt with a treated quickly. 

Wishing you all the best.

Hi Mamaduck

How’s your husband doing? Did the CAR-T cell therapy go ahead? 

We are at the very early stages of husband being considered for this. 

His dlbcl relapsed within 8 months of finishing treatment and after getting the full metabolic remission result from the PET scan. 

Sending you all the best

Hi ZeeT

How is your husband and how are you?

My husband is at the very early stages of being considered for CAR-T cell therapy. 

It was good to read how your husband felt in hospital.

How was he when he got home?

Sending very best wishes to you both