Having chemotherapy with DA-EPOCH-R

The principal treatment for my double-hit lymphoma was chemotherapy. The standard chemotherapy regimen for B-cell lymphoma, R-CHOP, is not very effective at treating double-hit lymphoma. And so, I was treated with a more intensive regime called DA-EPOCH-R. The name describes the components of the regime:

DA – Dose Adjusted

Unlike other chemotherapy regimes, the dosage of drugs changes during treatment with DA-EPOCH-R. The doctors looked at my blood tests during each cycle and, depending on the results, increased the dosage in the next cycle. As I coped relatively well with the treatment my dose increased with every cycle.

EPOCH

EPOCH refers to the chemotherapy drugs given in the treatment. They are Etoposide, Prednisolone (a steroid), Vincristine (aka Oncovin), Cyclophosphamide, and Doxorubicin (aka Hydroxydaunorubicin).

R

This refers to Rituximab, an immunotherapy drug that kills B-cells.

How DA-EPOCH-R is given

I had 6-cycles of DA-EPOCH-R with each cycle lasting 3-weeks. Whereas many other lymphoma regimes can be given in a day, it takes 4/5 days to administer DA-EPOCH-R. In my case, this required a hospital stay for each cycle.

I had Prednisolone tablets each day. Etoposide, Vincristine and Doxorubicin were all given together as an IV over 96 hours. The Cyclophosphamide was given as a bolus (an injection) at the end of the treatment; it only took about 10-15 minutes.

Rituximab was given by IV, sometimes at the beginning of the treatment, and sometimes at the end. As it causes a reaction in some people, I had an IV antihistamine immediately before it. The first time I had Rituximab, it was given at a slower rate, once the nurses were confident that I wouldn’t react to it, they increased the rate. At the faster rate, it took a couple of hours to administer.

I had a PICC line fitted before the treatment started. But unfortunately, because the chemo took up both lumens of the PICC line, I still had to have daily blood tests done with needles.

Effect on my lymphoma

DA-EPOCH-R worked remarkably well on my lymphoma. Within a few days of the first treatment the visible lumps I had started to go down. By the end of the second cycle, all the visible lumps had disappeared and the pain had reduced a lot.

I had a PET scan at the end of the third cycle, which showed complete metabolic remission (i.e. there was no sign of active lymphoma). There was still 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 was given another PET scan after my sixth cycle, which again showed complete metabolic remission.

Ultimately though, DA-EPOCH-R wasn’t able to completely get rid of my lymphoma and a few months after finishing treatment, I relapsed.

Side effects of DA-EPOCH-R

DA-EPOCH-R is an intensive treatment regime and the side effects are equally intense. I faired relatively well but still had some horrible side effects:

Fatigue

This was by far the worst side effect. I always tried to do a bit of exercise every day, no matter how bad I felt, but there were some days when I just couldn’t do anything at all.

Mucositis

From the third cycle, I started to have problems with mucositis (mouth sores and saliva changes). During the fifth cycle, I had to be hospitalised as I couldn’t eat or talk due to all of the mouth sores.

Peripheral neuropathy

Vincristine is known to lead to peripheral neuropathy. It caused numbness in my feet, which was not much of a problem during the day, but it often got worse at night when the pins and needles would start.

Weight Loss

Weight loss was a real problem for me, especially in the first couple of months of treatment. At one point, I lost 12kg and despite eating 4,000 calories a day I wasn’t putting on weight. A lot of this was due to the huge volume of lymphoma breaking down and I was gradually able to put on weight later in the treatment with the help of the hospital dietitian.

Hair loss

Pretty much all my hair fell out, including my eyebrows, eyelashes and body hair.

Chemo rash

An unexpected side effect was a large pimply rash on my forehead, cheeks, and nose. This seems to be a fairly uncommon reaction and the doctors were a bit puzzled by it. They swabbed it to make sure it wasn’t shingles. It would go down between cycles and it disappeared completely a few weeks after treatment finished.

Infection

Both the chemotherapy and the lymphoma lowered my immune system, so I had to be very careful to be as hygienic as possible, avoid crowds and people with sniffles, and monitor myself for signs of infection. I had strict instructions to phone the 24-hour haematology triage line if my temperature rose above 37.5c. I also had to carry a haematology alert card explaining my condition.

Thankfully, I was spared many of the other chemotherapy side effects. Macmillian has lots of information about other possible side effects.

Supporting medication

Alongside the chemotherapy, there were a lot of supporting medications that I had to take:

I also had treatment with Methotrexate during the DA-EPOCH-R because of the risk of the lymphoma spreading to my central nervous system.