Husband has/had Diffuse large B-cell lymphoma ('DLBCL') presented as PCNSL June 2025. 3rd time with Diffuse large B-cell lymphoma ('DLBCL'). Received 1 round of MATRix prior to referral for CAR T-cell therapy ('CAR-T') cell therapy at QE Birmingham. Apheresis August 2025 & localised bridging radiotherapy prior to infusion in Nov 2025. Low blood levels since discharge. Filgrastim to improve neutrophils/white blood cell stopped in Feb. Darbopoetin being administered fortnightly. Eltrombopag, then romoplastin administered with minimal increase in platelets - no higher than 31 (150 is normal). Changed to IVIg and platelets plummeted to 14 a week later and 13 a week after that with an bag of.platekets between. Now receiving weekly platelet infusions. Looking at blood levels over the last 4 months, Hb hasn’t actually improved and neutrophils/white blood cell are declining - likely to need full blood transfusion and filgrastim again within next few weeks. Whilst blood/injections/platelets solve the problem, the bigger problem is a pending heart op that is now on hold due to low platelets levels. So my question is does anyone know of a possible next step? We’re waiting for bone marrow test results, but I prefer to be forewarned. Someone has mentioned papaya leaf extract and I have the CAR T-cell therapy ('CAR-T') pharmacist checking this out, but won’t hear back for a few weeks.
Hi @RebeccaP , welcome to the Forum. Thank you for setting all of this out - what a journey you and your husband have been through, and what a lot to be navigating right now.
I’m going to bring in our Blood Cancer UK nurses here, because the question you’re asking really needs clinical expertise to answer well, and they are the only ones on the Forum able to offer medical advice.Hopefully the @BloodCancerUK_Nurses will be able to give you a more expert response.
I’m also hoping some of our community members with experience of post-CAR T-cell therapy ('CAR-T') recovery or similar blood count challenges will see your post and feel able to share what they’ve been through.
You’ve done exactly the right thing getting the pharmacist to look into the papaya leaf extract mentioned, as anything likethat should be checked by the medical team. I hope you hear back soon.
If it would help to talk any of this through in the meantime, our Support Line is there - staffed by nurses who are very used to these kinds of complex conversations. You can reach them on 0808 2080 888 (option 1) or support@bloodcancer.org.uk.
Thinking of you both,
Ceri - Blood Cancer UK Support Services
Dear @RebeccaP,
Welcome to the forum, I am so glad you found us and hopefully you will get some lived experience from some of the community here.
I am sorry to read everything you and your husband have been through, it’s been a really challenging time it sounds and its understandable you want to be forewarned with the next steps.
In this situation the bone marrow results are really what you need, this will give a clear picture of what is going on and hopefully help to plan next steps. Have you got an appointment planned to get the results?
Sometimes when you have a lot of treatment this can really suppress the bone marrow and it can take some time for the blood counts to recover. There are also conditions whereby just the platelets are affected but this should all become clear with the results.
Once they have the insight from the bone marrow hopefully they will be able to make a plan to build things up for surgery.
Unfortunately, you are stuck with a bit of a wait currently which I understand is unsettling, we are very much here to support you and as @Ceri_BloodCancerUK has mentioned above you are very welcome to call us if you want to talk things through in more detail.
Take good care,
Heidi J (Support Services Nurse)
Appt next week, but whilst husband thinks there’s going to be a plan to move forward, I’m expecting the worst as I can’t find anything about a possible alternative treatment. So I think we’llbe waiting until the heart gets bad enough for it to become an emergency.