Ask Caroline, a Macmillan Nurse working with people who have Leukaemia, Myelodysplasia...
Jane is a haematology nurse with extensive experience in stem cell and bone marrow...
Hi all , long time since I have posted on this site although I do look in frequently. Well I was on a trial drug at Barts but it stopped working for me. So I have been accepted for a new treatment called CAR T from what I have gathered it's a bit like a SCT as they harvest your blood but take out the T cells instead. I will be having this treatment at UCLH and go for harvesting on 10th July. About 4-6 weeks later I go into hospital to have the cells put back . Will be in hospital for a while as there can be some very nasty side effects. After two weeks you can leave hospital but have to stay within one hours drive away. Luckily UCLH do have facilities for you to stay near as I live 3-4 hours away depending on traffic through London. Is there anyone on this site who has had or is waiting for CAR T Treatment.
I've heard about it but not yet spoken to anyone going through for it, hoping it does the trick for you!
Please keep posting as and when you’re able....
This is my 1st post on the forum & I was prompted to as i'm in the same situation as you. After receiving RCHOP & RICE with no success I was accepted onto Car T. I will be treated at Manchester Royal Infirmary & I had the cells taken on May 30th so am slightly ahead of your programme.
I go back for 3 days of Chemotherapy on July 2nd and then go into hospital on 7th before receiving the cells back on 8th. I've been told to expect to be in for approx 15 days before i'll move into hospital accommodation as I live more than an hour away. I'm expecting to be here for between 30-60 days.
The consultants have been fantastic & put me at ease throughout. There is much uncertainty regarding how the side effects will effect me due to the treatment being so new.
So far the treatment has been fine, I expect it to become interesting in the next few weeks.
Very best of luck with your treatment
Welcome M2301JN and tada Lolla
Please keep posting M2301JN as information like yours is like gold to folks like Lola and others coming after you both.
When you feel up to it think about putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself.
To do this click on YOUR username, look to the left and select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
Mike - Thehighlander
It always seems impossible until its done - Nelson Mandela
Like stem cell transplants T-Car cell treatment side effects vary from mild to extreme and the patient on the BBC today who is from Durham was more towards the extreme which the consultant from St Georges explained, the one common effect still is fatigue. That said if you saw him on one of the interviews he looked well and felt well, we saw a bit more as it was on our local news so a longer interview. So take strength from his experience, the is more about it on the lymphoma action site
Hi, thanks for the information on your treatment sounds very similar to the routine I am going to have. UCLH also have hospital accommodation for you to move into , it's a 4 star hotel especially for patients who have to be nearby but live to far away. The only thing you have to pay for is your main meal of the day. Will be finding out more when I go in for harvesting on 10th July. Have heard some nasty things about the side effects but the consultants & nurses have been very reassuring about the prompt treatment for them.
Good luck keep in touch Lyn x
Hi John, I saw that article on BBC lunch time news told my kids to watch it in the evening but unfortunately it was not on that news , you would think with something as important on cancer treatment would have been on the main news. I found it very reassuring & interesting. It nice to see someone who has had the treatment & looks so well. Mike also shared a link with me to the article. Just like when I thought I was going to get a SCT I'm apprehensive but also can't wait to get started. It's a very big thing to go through.
thanks again for the information & support you & Mike always come up with.
One of my AML friends has done all the prep-work for CAR-T cell treatment here in S.California. So I know its being done. I ran into him at the lab doing bloods and he still has long hair, which makes me think he hasn't done it yet, right? I admit i don't know much about it.
Hi Alissa The are a few in the states who have been down this road and posted, some stories have been written up, but I only know of one who has documented their experiences on a forum and they are now heading to day 140+ what everyone says is that going into this treatment positive and hanging in when it does get tough and that can vary from patient to patient, eventually the light at the end of the tunnel starts to shine and then the recovery process starts. Fatigue post treatment seems to be becoming a standard side effect and with time people can manage that or overcome it.
From my understanding the treatment itself does not lead to hair loss but any conditioning treatment probably will as CAR-T is not a type of chemo, its genetical engineering at its best on the T cells and the second generation is even better they believe and reduces potential side effects but its still early days.
The harvesting was a relatively simple experience. I had a Hickman line throughout my RICE treatment & this had to be replaced by a Tesio line the day before.
The process took 5 hours & I was comfortable throughout.
I too have been reassured that the team will be right on top of any side effects & I have every confidence in them.
I will be sure to post if I get any updates before I receive the cells back.
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