I was diagnosed with stage 4B Non-Hodgkin T-cell/histiocyte-rich large B-cell lymphoma (THRLBLC) last year and finished 6 rounds of Pola-R-CHP chemotherapy. Unfortunately a Pet-CT scan 4 months post-chemo shows the cancer has relapsed. It’s often treated inline with more common Diffuse large B-cell lymphoma (Diffuse large B-cell lymphoma (DLBCL)).
My primary oncologist believed that Car T would be the most appropriate next line treatment. There is limited data for my subtype, however the data that does exist suggests a 2Y progress free survival of around 29% (only 12%pts in either direction when taking into account the confidence interval). When I shared this and that ASCT (stem cell) has a much better 2Y PFS rate of circa. 80% with my oncologist he took a figurative backwards step and said well that maybe the case and it would be up for discussion with a King’s College Hospital specialist. This is fine as appreciate he is not as specialist as those at King’s.
My concern is that all comms. King’s have sent me so far in relation to an initial consultation reference Car T, including what it is and consent forms. Whilst I’m open to be educated by those more knowledgeable than myself, I’m not sure if this is just a procedural approach from King’s, but if it is it’s nevertheless disconcerting. I appreciate that either course of treatment has a number of dependencies, none less significant than how I respond to salvage / bridging chemo.
If anyone has experience in this or valuable input, please do share.
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Hello @dinkykarma, welcome to the forum and thank you for sharing this. I’m so sorry you’re facing a relapse after all you’ve been through with your initial treatment.
From what you’ve described, is it that King’s may be sending you standard CAR-T information as part of their comprehensive assessment process, rather than because the decision has already been made? Many specialist centres will send information/forms about potential treatment options ahead of consultations to help patients come prepared with questions. The fact that your primary oncologist has acknowledged the ASCT data you’ve found and is open to discussion with the King’s specialists is positive.
A consultation at King’s will be exactly the right place to discuss both CAR-T and ASCT options in detail - do you have one coming up soon, or could you contact your team directly to clarify? The specialists there will be able to look at your specific situation, including your response to salvage/bridging chemotherapy as you mentioned.
The Blood Cancer UK website has information that might be helpful:
Our Support Line is also there if you need someone to talk through these complex decisions with. It’s staffed by some amazing clinical nurses who really know their stuff. You can call them on 0808 2080 888 or email support@bloodcancer.org.uk
Take care,
Ceri - Blood Cancer UK Support Services
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Thank you for responding. Yes I have a meeting this week with King’s. It’s just a bit disconcerting that a consent form and other documentation on Car T was sent ahead of time and nothing mentioning ASCT, before I’ve even had a discussion about the options. I’m not adverse to different treatments if the facts support it, it just feels premature sending a consent form especially as my history has only just been sent over.
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Hi @dinkykarma,
Yes I totally get that - in fact, it might be worth providing that feedback to your team when you meet this week, as if you’re feeling that then no doubt others will/have.
Do let us know how the appointment goes, we will be thinking of you.
Take care,
Ceri - Blood Cancer UK Support Services
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