Hi, my name is Paul. I’m a PhD researcher in AI with a love of nature, science and snowboarding. In October 2021, at the age of 40, I was diagnosed with stage 4, double-hit lymphoma (a rare and aggressive form of blood cancer). This is a blog of my experiences of living with and being treated for lymphoma.
Important: I’m not a doctor. This blog is just about my experiences as a patient. Don’t take it as medical advice. Haematologists, Clinical Nurse Specialists or organisations like Macmillian or Lymphoma Action are much better sources of advice about treatments, risks, side effects etc.
Getting a diagnosis
The worst part of the whole thing so far was waiting for a diagnosis and for treatment to start. My initial symptoms were intermittent stomach pains that gradually became more constant and painful. I had a fast-growing lump in my abdomen and although I’d seen my GP and been given a 2-week referral to the hospital, the pain became so great I ended up going to A&E.
At A&E I was given a CT scan which showed several enlarged lymph nodes and that the lump in my abdomen had grown to 10cmx15cm (about the size of a grapefruit). At this point, the doctors told me that they suspected lymphoma. They discharged me with Oramorph to manage the pain and scheduled a biopsy and referral to haematology.
What followed was 6-weeks of agony as my symptoms got worse. The lump got bigger and the cancer spread throughout my body. By the time of the PET scan, about 2-months from the start of initial symptoms, the lymphoma had spread from my abdomen to my neck, lungs, and kidneys. I was stage 4BEX. The B means I had night sweats; the E means the lymphoma had started outside the lymphatic system, and the X means that I had “bulky disease” (i.e. a very large mass in my abdomen). Lymphoma is staged differently from solid cancers, Lymphoma Action has a great guide to the staging of lymphoma.
Initially, my diagnosis was high-grade B-cell lymphoma, but after further analysis of the biopsy, this was changed to double-hit lymphoma.
What is double-hit Lymphoma?
Double-hit lymphoma (DHL) is a rare subtype of non-Hodgkin lymphoma, making up only about 5% of B-cell lymphomas1Australian Leukaemia Foundation | Double Hit Lymphoma. Unlike most lymphomas, in which the cancerous lymphocytes have only 1 genetic mutation, double-hit lymphoma has 2 mutations.
DHL is a very aggressive (fast-growing) blood cancer and is more difficult to treat than standard B-cell lymphoma2Dovemed MD | Double hit lymphoma. It is also more likely to relapse and more likely to spread to the central nervous system. Despite being more difficult to treat than other lymphomas it is still curable and new treatments are becoming available, like CAR T-cell therapy.
The WHO only classified it as a separate type of lymphoma in 2016. And so, doctors and researchers are still learning the best ways to treat it.
Medically it’s referred to as “High grade B-cell lymphoma with rearrangements of MYC and BCL2 and/or BCL6”.
Treatment for double-hit Lymphoma
The standard chemotherapy for B-cell lymphoma (R-CHOP) is not very effective against DHL, so more intensive treatments are used. In my case this was DA-EPOCH-R.
Because of the risk of central nervous system involvement (i.e. it going to my brain), I also had intrathecal and high-dose IV methotrexate.
The treatments appeared to be successful and by my third cycle of chemo, the PET scan showed complete metabolic remission (i.e. there was no sign of active lymphoma). I still had some “residual mass” at the original site in my abdomen, but this was “PET negative”, meaning it was just a collection of dead cells and scar tissue with no active cancer cells. I had another PET scan after my sixth cycle of chemo, again this showed complete metabolic remission.
Because of the risk of relapse, I also had radiotherapy as “consolidation”.
Remission and Relapse
After 11 months of treatments, it was wonderful to be in remission and have my old life back. I’d worked hard to regain my fitness levels, started back at work, and started socialising again. Unfortunately, it wasn’t to last and after only 2-months, I relapsed. The plan at this point was to have an autologous stem cell transplant. This required more chemotherapy, this time with the R-GDP regime, to get me back into remission (this is known as salvage chemotherapy). Unfortunately, the salvage chemo failed and my lymphoma was still growing after 2 cycles of it. So, my consultants advised abandoning the stem cell transplant and trying CAR-T therapy instead.
I had the CAR-T therapy in November 2022, and I’m now waiting to see whether it’s working.
References
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