Car-T Therapy

Hi Lolla - Yes it all went well on 25th August. It wasn´t too rough a ride for the side effects although the fever made me feel really rough for a while and I had a thumping headache they gave me morphine for. The neurological side effects were that my writing went like similar to a small child with the letters all different sizes and up and down all over the place. That was only for a couple of days though. My speech and word memory did go a bit haywire again only bad for a  few days although I do still have a few word memory glitches and occasionally stumble over saying words. I feel much better and stronger now though I do still get overwhelmed quickly. I am still a bit foggy on the cognitive front too and find I can´t work things out or deal with problems as quickly or as well as before. I think I had a reasonable time of it though as no intensive care and I was only in hospital for 18 days and then in an apartment (included in the program)  in Seville near the hospital for another 18 days. My 30 day PET scan showed partial response with 2 small tumours in lymph nodes disappearing completely and the tumour on one of my ribs decreasing reasonably in size and density. I was told partial response was expected at this stage due to the size of the tumour on my rib, but hopefully it will continue to decrease. So it is a case of so far so good and making the most of every day. I have my next big check up in Seville on 25th November so will have the usual scan anxiety and hope for continued improvement. I hope you are doing OK.

I just read your profile again Lolla and you made me laugh when you put that the infusion was an anti-climax. I was the same. They had 7 people come in to watch while I had the infusion and I was lying there thinking an IV drip is an IV drip and after all the other fluids already put through it wasn´t exactly a spectator sport. It only took 10 minutes and one woman (a pharmacist) walked in and timed it with a stop watch and walked out again not speaking to anyone while she was there. The best bit (or weird bit) was at the beginning when my doctor walked in and told me to get back into bed quick as they were defrosting my cells.

Great update Keeley1 and let’s look for continual improvements.

I had two Allo (donor) SCTs and yes, in some respects getting the cells is a total anti-climax but I decided to make it an ‘event’ each time to celebrate this new opportunity of life.

So I played the Gordon Highlanders Regimental marching tune, The Cock o’ the North when the cells were going in.

The staff thought it was great once I told them that this was in memory of my Grandad who was as a Regimental Piper in Second Gordon Highlands and at 7.30am on the 1st of July 1916 he leapt over the parapet and under a hail of machine gun fire played the regiment’s marching tune leading the Second Gordon Highlanders on the opening assault of the Battle of the Somme.

So I thought he survived and so will I

What a great way to welcome those cells in and to commemorate your Grandad too. I think for me the acceptance and excitement happened after everyone left and I was lying there thinking ¨Well they are in now so let the battle commence¨. It was all a bit rushed before as I had literally just got back from a PET scan and had to get out of my immune protection gear - green gown, shower cap type hat, shoe covers, plastic gloves and my doctor who is very excitable came in saying they were defrosting my cells. I was still trying to straighten out my back after the PET scan and didn´t expect it all to happen so quickly.

Hi Keeley,

Great to know your doing well. I’m doing well although I have a rotten cold at the moment ,it’s being called a super cold over here as it seems to go on for ages & just as you thought it was going bang it hits you again. Still it’s only a cold my husband on the other hand has has man flu!  
Know what you mean by being a bit figgy after treatment I still have days when I think what was I doing, where am I going who am I, but then again I’m 73 now . It’s over two years since I went into remission but I still have to have Ivig treatment once a month to boost my immune system because I kept getting infections.  Still it’s nice to get out of the house for the day & have a natter with other people in a similar situation.

Here’s  to you getting stronger every day Lyn x

I´m so glad you are doing well Lyn and I hope you get over that nasty cold soon. I´m pretty much housebound at the moment except for going to the health centre to have my PICC line cleaned. They are still debating between the prevention vaccination doctor at my local hospital and my CAR-T doctor at Seville as to when to give me another Covid vaccination as my previous ones were wiped out by the therapy. Once I get the vaccine again I might be able to go out a bit more as long as I am really careful.  It is all worth it though and it gives me such hope that you are still in remission. Take good care of yourself. x

Great to see such positive updates from you both and will be encouraging for others who have this in the future, hopefully this reflects the progress being made and Keely hope its not to long before the rib clears completely too.

I hope it does encourage others as I felt very lost when I was first told I needed CAR-T therapy and it was the only option available. I know each person is different, but from my experience at the hospital in Seville and what I have read from other peoples experiences the staff are very on top of dealing with side effects immediately and progress is being made to keep the effects as minimal and short term as possible. I am glad to see from other posts you have made that you are doing well.

Thanks for the positive updates, Keeley, and so glad you're doing well (but also very jealous that you are in Seville - it's lovely there!). My wife will be starting her infusion in just under a couple of weeks, so we have been reading your case and Lolla's with great interest. Love the humour and positivity. Wishing you all the best.

Wishing your wife all the best for her infusion. It certainly wasn´t as bad as I was expecting and well worth going through. My biggest fear was feeling out of control with the neurological side effects, especially after feeling my body was out of my control with the lymphoma. Instead I found my awareness of the side effects was more curiosity because I had been so well warned and my main nurse doing the questions and writing tests each day had a good sense of humour so when things went wacky I was more like ¨Well that´s interesting.¨ All the best to you too as is hard for the  partner, family and friends when someone is going through treatment. I am going to have my Covid vaccine and flu vaccine today at my local health centre. The CAR-T pretty much wipes out previous Covid vaccines. I get a bit OCD as my health centre is very rural and CAR-T is completely new to them and to my local hospital as well. They are not always the best at cross referencing with other hospitals, but I think given my OCD on double checking everything they now have good communication with my Seville CAR-T doctor. It took a lot of debate and research between my Seville doctor and the preventive medicine doctor at my local hospital before they would authorise my vaccinations for today. It is good they were so thorough as Covid vaccines are still so new their use in therapies like this is still very much a learning curve. I think that can be said of Covid vaccines in general too. It will be good to have a some kind of Covid coverage again (hopefully) though so I can go out a bit more. Please keep me updated on your wife´s treatment.