Hello All!
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) 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?
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 Buya and a warm welcome to this corner of the Community although I am sorry to see you joining us.
I am Mike and I help out around our various Lymphoma groups.
I don’t have DLBCL but for some context I was diagnosed way back in 1999 at 44 with a rare (8 in a million) incurable but treatable type of Cutaneous T-Cell NHL (a type of slow growing Low-grade non-Hodgkin lymphoma) ……. eventually reaching Stage 4a in late 2013 when a second, also rare (4 in a million) type of aggressive Peripheral T-Cell NHL (a type of fast growing High-grade non-Hodgkin lymphoma) was then presenting so although my Lymphoma ‘type’ is different I most definitely appreciate the challenges of this journey rather well.
I had a search on the Lymphoma Action website. Lymphoma Action is the main UK Lymphoma Specific Charity who have lots of good reliable information, videos..... basically all things Lymphoma....... pre, during and post treatment…….. abd did not find any info siecifuc to your type but that’s not to say that there us someone in this community with the same type……. Let’s see if you get a reply.
Are you in the UK Buya ?
Ok so as you are in the UK can I suggest that you consider connecting in with Lymphoma Actions various Support Platforms…
I highly recommend these groups as this will widen your support base and there is nothing better than ‘talking’ with others who have walked or are walking the same-ish journey…… the main online support platform has over 5500 members.
They also run the very good Lymphoma Focused Live your Life Course that is a peer-led self-management course.
They also have a great Buddy Service where people can be linked up with someone who has walked the same-ish treatment journey.
The LA helpline is open every week day from 10 till 3 on 0808 808 5555. This is a safe place to talk things through and get support.
Great to hear from you Julia and how time flies……. 5 years clear….. way to go 
