Hi Jennie, as I mentioned on the lymphoma action site it would be helpful to know the type of NHL she has and if she knows which type of car-t treatment. If she has dlbc then cd19 car-t is proving to be quite effective and showing positive signs from previous trials.
The other positive is they are constantly improving how to manage some of the potential side effects and yesterday I was reading a report on the newer developments where trials are showing a big reduction in neurotoxicity as the learn new ways to re-engineer the cells.
Do you have any specific questions
John
we all know this is a roller coaster ride, where we ride blind, never knowing where the highs and lows are
I have had car-t in December for dlbc. I know several others who have and are doing well. Your welcome to read my posts. From my experience it's an extra lifeline. Wish your friend all the best
I have had car-t in December for dlbc. I know several others who have and are doing well. Your welcome to read my posts. From my experience it's an extra lifeline. Wish your friend all the best
Hi Alice, thank you so much for your post to me, I have just read your posts and it sounds like you have had a similar experience to Emma. She has had 3 different chemotherapy’s on dblc none of which have got her into remission. Was going to have stem cell but as they could not get her back to remission she was put forward for Car T. She is going to have radiotherapy as a holding treatment and having her bloods harvested next Thursday at the QE. She is very scared and anxious but it so good to hear your very positive post, I will show her your story tomorrow. Unfortunately she does not want to join any of these groups herself so I am trying my best to keep her as informed as I can. Thank you so much and hope you continue to stay well. Jennie xx
That's no problem at all. I can understand the anxiety I was the same. It is good Emma has a date for harvest I felt like things were moving after that day. I just found it a bit boring the harvest really I was at Queens in London and was long day of just sitting so maybe take a book or iPad. The nurses were really lovely.
Radiotheraphy was okay once they completed planning meeting where they get all measurements in check it doesn't take too long maybe half hour ish to do. My hair started to grow back during that time and during Car-t.
when they give the car-t its really quick and they manage any side effects you have really quickly and all side effects are temporary. Fortunately mine were very mild and was in for 2 weeks.
I hope this is a bit helpful and if you have any particular questions regarding Car-t please ask.
Wishing Emma all the best and sending positive vibes
