Hi everyone. I was diagnosed with DLBCL in 2020 and underwent RCHOP with positive results. In 2022 it had returned around my lung. I underwent an auto genius stem cell transplant which also showed positive results. I am now undergoing bladder tests as they have found a tumour in the left side of my bladder and a swollen left kidney. Is there anyone on here who have had a similar experience? I’m waiting for confirmation by biopsy but I’m floundering. Trying to stay calm is exhausting.
Hi elfbell and a warm welcome to this corner of the Community although I am sorry to see you joining us and to hear about your journey. 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 43 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 - Not Otherwise Specified 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.
Over the first 15 years of my journey the longest remission I had was about 9 months having to move onto more treatments.
My story is rather complicated (See my story) but in late 2013 I started 2+ years of full on treatment with 45 sessions of radiotherapy over 3 different sessions (5, 10 and 30). I have had about 800hrs of various types of chemos and also 2 Allo (donor) Stem Cell Transplants….. so I know full well how challenging things can be….. but I am now 9 years out from my last treatment, I turn 69 in a few weeks time and I am getting in with life.
From my experience when the times get challenging you have to trust in your clinical team to find the next tool to do the job.
Thank you for your reply, it is very much appreciated. Up until now I have always just plodded along with all the diagnosis/treatment plans, but for some reason this has got me in a spin. I think that it is because I am now 65 and in a much weaker state than previous times. I know I will calm down when I have a definite prognosis. I am trying to keep a calm demeanour in front of my family as they are used to me being chilled. I think I am more worried about the treatment than a terminal diagnosis. Like I said , just floundering. Sorry for the panicked rant.
The group is a safe place to let of some steam
I am new to this group and have just been started on a new Antibody treatment called Epcoritamab. I was first diagnosed in 2017 and had RChop chemo and went into remission until 2023 when it come back and was now Grade 4, l again went into remission after having more Chemo this time Polabenda in 2023, but it was back again after 9 months. As this was my 3rd line of chemo my options were limited, i was lucky to be fit enough to have this New antibody treatment l am 83. I would like to know if anybody is having this treatment and how they are finding it.
Hi Kas7 and welcome to the group…. I did a search of the community and I did not get any hits on Epcoritamab but this is not to say that someone is on it but have not posted.
I also checked out Lymphoma Action Support Platforms specifically their FB group and got a few hits on the drug.
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.
They also have a great Buddy Service where people can be linked up with someone who has walked the same 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.
Hi Elfbell
I am 53 year old and was diagnosed DLBCL in Dec. 2022 , they are bit confused that it was High Grade or Low Grade because one biopsy came up with low grade anyway they treated as High Grade and given me RCHOP (6 Cycle) and finished in Sept. 2023. On my final PET scan there are some Lump Node over my lungs they took the biopsy and diagnosed TB and also on neck all of sudden on Sept 2023 I got pain in stomach and using toilet 3 to 4 times but my consultant over look this issue now I got blood in my stool and last week done colonoscopy and they found 2 tumours, they carried out the biopsy and I am waiting for result. I am bit confused now that whats going on is the Cemo does not work properly or? Let see next week hopefully i will get the result will update .
Hi Nawaz and a warm welcome to you.
Sorry to hear about the journey you are on…… post treatment ‘other’ health issues can unfortunately come along… in my case some were directly related to the treatments I had over my many years but others were down to being unlucky.
Do come back once you know what you are dealing with.
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
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