Car T Treatment experiences

Hi my name is Jennie I have a very close friend who has Lymphoma and has just been approved for Car T Treatment at QE Birmingham. She is very scared and anxious about the treatment, is there anyone out there who is undergoing or has had this treatment and willing to share their experiences. Thank you so much.

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Hi @Emma. Jennie, I had Hodgkins Lymphoma and a stem cell transplant 11years ago, as CAR-T is a more recent treatment. The QE is one of the best hospitals for blood cancers, as a lot of research is done there. I have asked fellow ambassadors if they can help. I hope you and your friend find the forum helpful, and the Support line is there if either of you need a chat.
Keep us in touch with how things go

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Thank you I will let you know more as she finds out when and how Treatment is to be done.

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Hi Jennie, yes, welcome to our forum. I cannot help with your post but this forum is here for you both. I expect both of you are very scared and anxious. She and you are entering unknown territory after very hearing scary news. My emotions were high alert for a long time and I thought I was the only person in the world in my position. What I have found is so many of us share the same thoughts, feelings and practicalities. Please keep posting how you both are doing and as @Pisces56 says the Bloodwise support line is there for you both if you fancy a chat, details above. Take care both of you.

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@Emma1 Hi Jennie, I join @Erica and @Pisces56 in wishing you a very warm welcome to our forum. I’m Su, I am one of the support services officers here. I am so sorry to hear about your close friend, this must be such an anxious and daunting time for you both- which is so understandable. How are you both doing? Has she managed to find out a bit more about the treatment at all? We’re always here for support if you need us Jennie.

Su

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Hi Jennie. I had Car-T to treat Lymphoma at Hammersmith hospital in 2018, about 11 months after my Stem cell transplant for severe Aplastic Aneamia. It was painless and I didn’t feel any major side effects. It was administered in four, weekly, doses by IV.
I know that everyone is different but I can attest to how great it can be. My tumour had shrunk to half the size about ten weeksafter the treatment and was completely gone after about 8 months.

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Thank you @Fozzie123 for taking the time to post and hopefully this will help @Emma1 (Jennie) and her friend. I hope you are continuing to make a good recovery. Have you found anything particularly challenging in your recovery?

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I’ve been very lucky. Apart from continuing fatigue and some GVHD, which might be still due to the SCT, I haven’t had any challenges. That, for me, is the beauty of Car-T. The Chemo and Radiotherapy I had caused so many problems, Car-t has been pretty much trouble free.

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Hi thank you so much for you support and kind wishes. Emma has got to have radiotherapy as a holding treatment and has been measured up for a mask yesterday. Waiting to hear when this will start also has been booked in at the QE for her bloods to be taken to start the car t treatment, next Thursday, so the ball is rolling. Will ask her if there are any direct questions she has and be back in touch. Thank you Jennie.

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Hi Jennie. I have had radiotherapy on my neck and chest, and had a mask. I had very few side effects, so hopefully all will go well xx

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@Fozzie123 it’s so good to hear your recovery overall is going well!

@Emma1 of course, Jennie, if there is anything that comes up which Emma would like to share and ask about, we are always here! Please also remember, the forum is here to support you too :+1: hope you’re doing ok?

Su

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