Doctor said Out of Options. Desperate help needed - looking for any insights. My mother has gone through three different types of chemo and nothing seems to be working on her.
She was diagnosed with stage 3 follicular lymphoma last April’23. Doctor put her on BR which seemed to be working initially but her cancer transformed and she had really bad pain in her stomach (likely transformed to DLBCL) and grew back aggressively after 5 months. She was next administered Pro Mace/cytabom for 4months but the cancer didn’t shrink. now she’s hospitalized with tubes in her lungs (was filled with water) and unable to eat. They are trying AZD0486 which hasn’t resulted in any changes to the cancer mass in her stomach.
Doctor said he doesn’t know what else to do. I’m trying to prep for a consult with him on next steps. They are in Korea and I can’t move my mom anywhere else since she is hospitalized and so weak. She was healthy and hiking a month ago. Anyone have advise on What I can ask him? What protocols can I suggest to him to help? 
1 round: BR
2 round : (PRO MACE/ CYTABOM)
3 round: AZD0486
Hi sunnydayjoy and a very warm welcome to the Macmillan Community but sorry to hear about your mothers diagnosis and how things have developed.
I was diagnosed way back in 1999 at 43 with a rare, incurable but treatable type of Low-Grade NHL (your mothers FL is also an incurable Low-Grade NHL) then in late 2013 a more aggressive type of NHL came along with me now reaching Stage 4a so I do appreciate the challenges of this journey rather well.
The fact that her clinical team used PRO MACE/ CYTABOM for a few months suggests that they were working towards a Stem Cell Transplant (SCT)…… or even CAR-T as this is approved for DLBCL.
This is basically the same route I followed back in late 2013….. it was seen as the last throw of the dice option…… I ended up having 2 Allo (donor) SCTs as my first did not work…… it took 2.5 years to do all the treatment including a good 6 months to recover post treatment…… and I reached remission in Sep 2016…… If SCT had not worked my only remaining option was going onto be Palliative Care…… CAR-T is not approved fir my type of Lymphoma.
The problem is, the patient has to be in relatively good physical health with their initial Lymphoma under controlled…… in a small window of remission - to allow SCT to do its magic…….
It may be that the PRO MACE/ CYTABOM was the tool that was being used to open the door for SCT to be an option….. but this us only a guess.
You may want to look at the Lymphoma TrialsLink on the Lymphoma Action website. Lymphoma Action is a UK ONLY charity so the TrialsLink will only be UK based trials.
Your mothers team in Korea need to contact other Worldwide Cancer (Lymphoma) Centre's of Excellence and look for what is new and available.
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All the best in your search for answers.
