Hello All! (posted this on the DLBCL forum but haven’t seen anyone with same subtype)
I hope you’re all doing well!
I’m joining this forum really late. I was diagnosed at 25 with a rare subtype of DLBCL in the Summer of 2022, it’s soo rare that it doesn’t have its own treatment protocol. Like most, I’ve tried understanding or learning about my diagnosis as much as I can but I’ve struggled to find any relatable information/advice.
I am currently in remission, I received CODOX-M-IVAC regimen as my first line of treatment. My time in remission has been turbulent, my first year was difficult but amazing, I seemed to have pushed through most of the symptoms I had (chest pain/breathlessness/pain). Unfortunately in my second year, these symptoms caught up with me - they became more difficult, more widespread (left sided; head to foot - may be nerve related) pain, continued chest pain and new exercise intolerance. My bloods have been on the low side, with some abnormal counts specifically elevated and fluctuating MCV/MCH, HB/HCT and unstable WBC levels.
Ive recently had a PET, after being assessed by neurology (who suspected my symptoms to be related to relapse) but it came back all clear. My Haematologist hasn’t been the most supportive, which is unfortunate.
Has anyone been diagnosed with the same subtype? And received this treatment?Has anyone had any fluctuations in MCV/MCH? Has anyone experienced exercise intolerance?
Has anyone developed secondary MDS (Myelodysplastic Syndrome) due to chemotherapy treatment? Apparently abnormal bloods can mean a bone marrow issue.
I would love to hear how some of you are doing? And get any advice on how to manage through remission.
Many thanks in advance
Best
Buya (28M)
Hi again Buya worth a try putting your post up n this group as well - you never know who is looking in.
