I haven’t been on here for a while as I thought I’d try my hand at Thyroid Cancer. What a palaver that was.
However, I have just been diagnosed with Non-Hodgkin lymphoma (NHL) for the sixth time, after a ten year break. I thought I had finally got rid of it, but it’s back with a vengeance.
I’m due to have CART-T Therapy soon. I have had a Stem cell transplant so I’m assuming it’s similar? Any advice would be appreciated
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Hi @Lulu, sorry to hear that you have been diagnosed again, but great to hear from you again.
I will copy your question to the Blood Cancer UK nurses. @BloodCancerUK_Nurses
You also ask for any advice, unfortunately with your experiences you are probably more the expert.
How are you feeling emotionally, physically and practically?
I hope you feel this is a safe place to share how it really is for you.
The Blood Cancer UK support line is there for you on 0808 2080 888
Look after and be very kind to yourself and please do keep posting
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Hi Erica, thanks for your message. I am feeling really angry to be honest. It’s like you couldn’t make it up, could you? Yes, I have had a lot of, unwanted, experience, but because it’s been so long , I feel out of touch with it all. Also, there are so many new drugs and treatments now, it is a whole new world.
I hope that you are well and am glad that you are continuing your valuable input on this website
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@Lulu I can really understand your feelings.
The one bit of good news in that there are so many new drugs and treatments now…
We now have some brilliant Blood Cancer UK nurse advisors if you would like to discuss treatment options @BloodCancerUK_Nurses
You certainly are always a very valued part of our forum.
Keep posting
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Lulu my goodness you have been through and going through a lot. I just wanted to send you good wishes and I hope the new treatment has no nasty side effects.Liz59
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Dear @Lulu
So sorry to hear that you are going through such a challenging time. May I ask how you are feeling about the Non-Hodgkin lymphoma (NHL) coming back and the treatment proposed?
There are differences between Stem Cell Transplant and CAR-T but I know that your treatment teams will go through this with you.
We do have some information on this treatment What is CAR-T therapy and how does it work? | Blood Cancer UK and we would be very happy to talk to you as well so please don’t hesitate to get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
There is also a great CAR-T thread here on the forum that you can have a look at: What is CAR-T therapy?
Do take care and please get in touch if you should need to talk.
Kind regards
Gemma
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Hi Gemma, thank you for replying.
I am so angry about the Lymphoma coming back, especially after 10 years! I had a meeting with the CART-T team yesterday, and to be honest, I’m not feeling it. I have so many problems, and complications from all my previous treatments, that I feel it is a big risk. However, the team think it’s my best chance, so, what choice have I got really? I have a lot to think about
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Oh @Lulu please do use us as a safe space for you to say how it really is for you. The Blood Cancer UK nurse advisors and support line are also there for you.
It’s OK to feel angry.
Be ever so kind to yourself and perhaps write down all your fears, questions and practicalities for your medical team.
Please do keep posting
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Hello @Lulu
It’s no wonder you feel this way and it is the most challenging of decisions. From my perspective it is so important for you to talk this through with the Haematology teams that look after you and be transparent around your concerns. Would it be useful to ask them to talk to other CAR-T patients so that they can share their experience? There may be some help here on the forum too? We are also very happy to talk with you on the Support Line so please don’t hesitate in getting in touch.
Take good care
Gemma
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Oh @Lulu what a palaver like you say. I feel your pain. It’s draining isn’t it. Just when you think it’s all ok and wham it’s back. I got to five years and celebrated all to soon to then spend the next six months having CT scan after CT scan followed by surgery after surgery then PET scans. It really is a long journey not a short trip.
But you have great options, I understand your reservations , ten years ago cart t didn’t even exist ! I have heard of loads of great success stories. Do give the team a call they would be happy to talk through any concerns you have. Sometimes just saying them out loud can help you rationalise them.
I write lists to help me pros and cons.
We are all here for you do keep in touch.
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