Tag: Weight Loss

Weight loss and lymphoma

Weight loss is one of the common symptoms of lymphoma and one of the most common side effects of lymphoma treatments, especially chemotherapy.

Weight loss was a real problem for me, especially in the first couple of months of my diagnosis. At one point, I lost 12kg, nearly 20% of my body weight, and despite eating 4,000 calories a day I wasn’t putting on weight. It was very worrying and depressing to see my physical appearance change so rapidly and to feel as though my body was wasting away.

Thankfully, my weight loss lessened as the treatment progressed and I was even able to slowly put some weight back on while having chemotherapy.

Causes of lymphoma weight loss

Lymphoma itself

Lymphoma itself causes weight loss1Macmillian | Signs and symptoms of lymphoma. This is due to the cancerous cells using up energy at the same time as your body is using energy trying to fight them2Lymphoma Action | Symptoms of lymphoma. Before my diagnosis, some of my friends commented that I appeared to be losing a lot of weight.

Some treatments against high-grade and bulky lymphoma work very quickly, within days in my case. Once I started chemotherapy and steroids, I began to lose a lot of weight. This was mostly due to the huge volume of lymphoma that I had breaking down. I was prescribed Allopurinol, to help my body cope with the byproducts of this rapid breakdown. At this stage, the weight loss was at its most severe.

Taste changes

Within a couple of days of starting chemo, my ability to taste food and drink changed. I had a constant unpleasant taste in my mouth and food and drink didn’t taste the same. I quickly got used to this and through experimentation learned which foods and drinks tasted better (well, less bad) when my taste was affected.

Nausea, vomiting and diarrhoea

Chemotherapy often causes nausea, vomiting and diarrhoea. I had all these at various points in the treatment (including plenty of embarrassing incidents of throwing up in the hospital car park and on the high street). They really made maintaining my weight a challenge as I lost my appetite and just didn’t feel like eating. The doctors prescribed various anti-emetics, which did help.

Persistent hiccups were also an unexpected annoyance of my chemo!

Mucositis

During the third cycle of DA-EPOCH-R chemotherapy, I began to have problems with mucositis (mouth sores and saliva changes). This usually happened in the second week of the cycle and got progressively worse with each cycle (possibly because the dose was being increased). The mucositis would usually only last 5-7 days, so I was able to plan it to some degree.

I followed all the guidance on mouth hygiene religiously, but I wasn’t able to stop the mucositis. During the fifth cycle, I had to be hospitalised as I couldn’t eat or talk, and my CRP markers were elevated due to all of the mouth and throat sores. This was really one of the most horrible times of my whole treatment. I was prescribed lidocaine, which did help, and it enabled me to eat a bit of porridge and soup each day. Ice cream and ice lollies helped me get a few extra calories and numb the pain a little bit throughout the day.

Hospital food

NHS hospital food is truly terrible! I had over 12 stays in the hospital and each time my weight went down. Being on the haematology ward was better than other wards, as there was often an option of a cooked breakfast. But sometimes meals would not arrive or they were just inedible. The nurses were always great when things went wrong, even going so far as to go to the hospital canteen to get me something. But bringing a good selection of snacks when being admitted is essential!

Eating with lymphoma

While all of the above make eating and maintaining weight a challenge. There is a lot that you can do and I was gradually able to put on weight later in the treatment.

Getting the calories

Despite an aversion to vegetables, I was used to eating generally very healthily, with plenty of fresh food and always maintaining a good weight. However, with the lymphoma, I needed to change my focus to eating the maximum calories I could. Unfortunately, this was a lot easier to do with less healthy preprocessed foods. My dietician explained this to me as “what is healthy for people is different, for you getting calories is more important than anything else right now”.

The kind of things I added to my diet were:

  • High-calorie breakfast cereals (granola, honey-nut cornflakes etc)
  • Fruit smoothies with oats
  • A mid-morning sausage/egg sandwich
  • Afternoon tea or snack
  • Small starter an hour before dinner
  • More desserts
  • Milky drinks (hot chocolate, Horlicks etc).

Fatigue can make cooking meals difficult. If you have other people who can prepare dinner, great! If not, batch-cooking foods and freezing them on good days really helps on those days when you really don’t feel like cooking. Beef bourguignon, stews, lasagna, risotto, and curries all made good freezing for me. Family and friends often want to help and bringing around a home-cooked dish is a simple thing they can do to help. My mum’s “cancer casseroles” kept my fridge well stocked!

Snacks

Snacking regularly throughout the day is much easier than eating large meals. Peanuts, fruit, yoghurts, pork pies and cream cakes were some of my regular high-calorie snacks.

Supplements

At various points, I wasn’t able to get enough nutrition or calories from my diet alone. The hospital dietitian prescribed various things to help when this happened:

  • Scandi-shakes: a medical milkshake that is very calorie dense and especially good when its difficult to take solid food
  • Fortified drinks: not very pleasant tasting, but full of vitamins
  • Multi-vitamin tablets.

These were put on repeat prescription for me at my GP, so I could get them whenever I needed them.

Other things that can help

Encouragement from other people

There were many days when I just didn’t feel like eating. My family and friends helped me by encouraging me to eat, even when I didn’t want to.

Weight scales

Graph from digital weight scalesHaving a set of good digital weight scales was essential to help me monitor my weight and encourage me to eat. I would weigh myself every morning and, using Bluetooth, my phone would keep a graph over time of just how I was doing.

References

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.

Hooked up to DA-EPOCH-R chemotherapy
Hooked up to DA-EPOCH-R with a lovely birthday cake from the nurses.

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:

AciclovirAn antiviral for herpes viruses, such as shingles, which can reactivate when your immune system is low.
AllopurinolLymphoma cells can break down quickly when treatment starts, which can cause uric acid to build up. Allopurinol helps clear this.
CiprofloxacinA prophylactic antibiotic
Co-trimoxazoleAn antibiotic
G-CSFGranulocyte-colony stimulating factor – an injection that stimulates the production of neutrophils.
FluconazoleAn antifungal
MetoclopramideAnti-emetic (reduces nausia and vomiting)
OndansetronAnti-emetic (reduces nausia and vomiting)
OmeprazoleReduces stomach acid and helps protect the stomach from all the other medicines.
Painkillers

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