Car-T Therapy

Hi Keeley1 and welcome to this small corner of the community.

There are a number who have had CAR-T so let’s look for them to pick up on your post.

You can also use the search tool  near the top and put in CAR-T, have a look at the threads and hit reply and see if they are still looking in or have moved on with life.

I have a different type of NHL and CAT-T would not fit my type treatment plan but have had two Allo (donor) Stem Cell Transplants and from talking with a few folks on here and on another UK site who have had both a SCT then a CAR-T…… most will say that CAR-T was far more simpler will less side effects.

Always around to chat.

Thank you for your reply and yes I have seen that CAR-T therapy should have less side effects. I will go onto the CAR-T threads and contact some people. It is good to have somewhere to chat to people in similar circumstances.

Remember you can also hit group members community names and see their story if they have put one into their profile - get back if you want to chat more

I´ll do that - thank you.

1. Hi Keeley, I’m almost two years in remission after CAR-T . I also lived in Spain , but was in the UK when I was diagnosed so moved back here as we had never joined the Spanish health service. Had four different lots of chemo but always relapsed soon after treatment ended. I had my CAR-T at UCLH are you having yours in UK or Spain? I was in hospital for six weeks & can honestly say it was easier than I thought it was going to be. It wasn’t a doddle but from what Stem Cell patients have said on here a lot kinder on the body. I was 70 years old when I had my treatment so was surprised I copped so well, do hope you will be lucky too. It did taken me a while to recover when I got home as I also have COPD but with the help of a wonderful husband & two adult children helping out when they could I’m still getting better all the time. After I came out of hospital I did have a few infections ie: flu , pneumonia & a very nasty fungal lung infection but I was then put on a course of IVIG can’t remember what that stands for but it boosts your immune system. I have not had an infection since, may have to be on it for life though. I’m luckily having that done at my local hospital once a month , it’s done as an infusion & takes about five hours. I don’t come on the site very often but will try & remember to pop on once a week to see if you need to chat.

               Best of luck Lyn 

Hi Lyn - so good to hear from you and to  read your experience of CAR-T. I am having mine done here in Spain at Seville.  I am so glad you are are almost 2 years in remission and it gives me such hope although I know each case is different.  I have had some chemo this week to keep my cancer cells down while I wait for my T-cells to be ready  which should be in 4 -6 weeks.  It would be great if you could pop on when you can as it would be good to be able to chat as I go through the various stages if that is possible.

Take care

Keeley

Will do Keeley .

you take care as well Lyn x

Hello Keeley.

I am guessing that by the time you see this you may well have had your cells returned. I had CAR-T in November 2019 at UCH in London. I believe that it can have different responses for different people. I was told beforehand that there was a chance I would end up in intensive care. I was also told by the consultant there that The cancer I had was “one of the most aggressive I have ever seen”. I did have a reaction to it but the team were skilled and knew what to do. I was in intensive care for 2 and a half weeks and in hospital for 7, but that was a tiny price to pay for the result that I got. I was in remission for around 10 months and when the cancer returned it was zapped with radiotherapy. I am currently in remission again. Given that in October 2019 I was given 6 months to live that’s pretty impressive. Yes the CAR-T was difficult, but it has given me a year, and hopefully more, that I wouldn’t have otherwise had. I am SO grateful, and of course knowledge and understanding of CAR-T and its effects is always improving. Good luck and stay positive. All the time I was ill I kept focussing on the future and that kept me going. I feel better now than I have done for a long time. It really is a miracle treatment.

Thank you for your message- it gives me great hope while I wait for the next stage of this treatment. I am so glad you are doing well after the CAR-T therapy and that even when your cancer returned it was treatable with radiotherapy.  I am still waiting for cells to be returned - I think early August is the estimated time frame at the moment. I was told when they harvested my cells that they would be probably 6-8 weeks. I will admit the possible reactions (especially neurologial) have me very nervous, but if it can get me into remission it will be so worth it (a million times and more worth it) and as you say the staff are very skilled with dealing with all different types of reactions. I am staying as positive as I can and going out for drives into the countryside and up our local mountains to get some quality and peaceful time before I go back into hospital again. I have a 2nd bridge chemo treatment this Wednesday at my local hospital to keep my present cancer cells as controlled as possible while I am waiting for my cells to be returned. I had the first bridge chemo 2 weeks ago and though it left me lightheaded and with diarrhea it hasn´t been as bad as after some of the chemo I have had. I too am so grateful that this treatment has been made available to me. I will update on here when my cells are returned.

Hi Keeley I had CAR-T cell treatment in April - May 2021!!

The treatment has 2 types of side effects as you know, my side effects were on the physical side were high temperature in excess of 40 degrees for 1 - 2 days until the medical team get it under control with drugs.

I also "lost 7 days" of memory where I cannot remember a thing, my wife and med team had to fill in the blanks!!

I had muscle wastage due to being in bed for so long, when I got off the bed I had to learn to walk with zimmer frame and crutches and to get my strength in my legs back I lost a total of 17kg body weight, all fine now though!!

On the neurological side I had to write a sentence before treatment and once the cells were infused into me I had to write the sentence 3 times a day!!  I sometimes found it very difficult to write the sentence as I sometimes could not control the pen due to my hand shaking or not being able to process the words into writing!!

Had had and still get instances where I cannot talk properly - putting a sentence together, its now easier but sometimes I forget things so have to write things down so as to remember them!!

I am nearly 12 weeks post treatment and I'm having a PET scan on the 4th August to see how the little fellers inside of me are doing, I feel really well so I think they are doing the job!! I will find out later on in the month how its working from my Car-T cell med team!!

I hope this has not put you off, but I would do it again if I had to!!

                             Cheers Phil