Lymphoma Archives - Living with Lymphoma

Having CAR-T Therapy

In my previous post, I talked about what CAR-T therapy is and the process of preparing to have it. In this post, I explain the actual procedure I went through.

Having been extracted and flown over to America, my genetically modified T cells arrived back in the UK three weeks later. It was now time to prepare my immune system to receive them back. This meant yet more chemo! The purpose of this lymphodepleting chemo was to kill off my existing T cells and make space for my new supercharged ones. The chemo took three days and was given on the haematology day unit. I had no major side effects other than a lot of fatigue. I then had a rest day before being admitted to the haematology ward the next day. Nothing happened on the day of admission, it was just settling into the room and a few blood tests. Then the real CAR-T therapy fun started:

Day 1 (Monday)

At 8am, I was taken for an MRI brain scan. This was just to be used a reference in case I later developed any neurological side effects which are common with CAR-T.

At about 11am, the T-cells arrived in the room accompanied by some folks from the hospital’s stem cell lab, who supervised their administration.

The CAR-T cells were given back to me via my central line. There was a slight taste of chemicals as they went in but there were no other side effects. The infusion was very small and only took about 15 minutes. It was all a bit anticlimactic given everything that had gone on in the weeks prior.

The nurse monitored me every 15 minutes for a couple of hours, but I had no reactions so this was reduced to every 4 hours. As well as the standard blood pressure and temperature observations, I had to have regular neurological assessments. These involved answering a set of standard questions, counting backward from 100 in tens, and writing out a standard sentence. These were repeated every 4 hours for the next 30 days.

Day 2 (Tuesday)

Day 2 was very uneventful. The assessments continued but I had no reactions or side effects. So far, so boring. I wasn’t allowed to leave the room but thankfully, I’d brought a portable projector and a VR headset to keep me entertained.

Day 3 (Wednesday)

I woke up with sore throat but I was otherwise ok and my blood results were not concerning. My temperature crept up during the day and I started to feel more lethargic and malaise. By 6pm, my temperature had reached 38oC, which was caused by Cytokine Release Syndrome (CRS).

CRS is a side effect that affects most CAR-T therapy patients. It’s caused by the modified T cells releasing a chemical messenger (cytokines) that signal other cells to multiply. It is graded 1 to 4, with 4 being the most serious and requiring intensive care. It often resembles a serious infection with temperatures, shivers, aches etc. However, it can also cause neurological symptoms, including confusion, seizures and loss of consciousness.

The hospital follows a strict protocol for CAR-T therapy. My temperature of 38oC was considered grade 1 CRS, so I was examined by the doctor and treated with IV antibiotics and IV Paracetamol. Blood cultures were taken from my arm and from my line (these were all negative). I also had a chest X-ray, which was clear.

Day 4 (Thursday)

My temperature was slightly elevated in the evening (37.5oC) and I was given oral Paracetamol. The IV antibiotics continued. I began feeling more and more lethargic and malaise.

Day 5 (Friday)

I continued feeling lethargic and malaise with a slightly elevated temperature of 37.8oC in the evening, and I also developed mild diarrhoea. The oral Paracetamol and IV antibiotics continued and the blood cultures were repeated (and again were negative).

Day 6 (Saturday)

My temperature was still elevated and I was still feeling very tired and poorly. I slept most of the day. I developed a bit of a cough but a chest examination was clear. The oral Paracetamol and IV antibiotics continued.

Day 7 (Sunday)

My temperature was still spiking and I was still very sleepy and didn’t feel like getting out of bed at all. Oral paracetamol and IV antibiotics continued and the blood cultures repeated.

Day 8 (Monday)

Again I was very tired and sleepy and I now had a thumping headache whenever I moved. My temperature rose above 38.5oC, which was the trigger for stage 2 CRS. At stage 2, the protocol dictated that I was given Tocilizumab, a drug that dampens down the immune system, reducing the effects of the CRS. It didn’t immediately improve my symptoms, so I continued on IV paracetamol and antibiotics.

I had another chest X-ray which was again clear.

Day 9 (Tuesday)

By now the Tocilizumab was kicking in and I was starting to feel a bit better and have more energy. My temperature reduced to 37.4oC. I continued on the IV antibiotics.

Day 10 (Wednesday)

I was feeling pretty much back to normal and had no temperature spikes during the day. A mild temperature spike in the evening 37.5oC was treated with oral Paracetamol and the blood cultures were repeated. I continued on the IV antibiotics.

Day 11 (Thursday)

I was feeling more energetic and had no temperature spikes. The antibiotics were stopped and I was monitored for 24 hours.

Day 12 (Friday)

I was feeling ok and the doctors were happy to discharge me. My partner had to continue doing temperature and neurological assessments three times a day. The CAR-T specialist nurses phoned me every day to check on me, and I visited the outpatient department weekly to see the doc and have my line dressing changed.

I’m now on day 21 and continue to be fine. The next major milestones will be the 1-month and 3-month PET scans, which will show whether or not the CAR-T cells are working. The doctors have explained that it’s normal to still see some disease on the 1-month scan, but if the treatment is working, there shouldn’t be any progression 🤞

Preparing for CAR-T Therapy

When my lymphoma relapsed, the plan was to try a stem cell transplant. For the transplant to work, I had to be in remission. So, I had 2 cycles of R-GDP chemo, followed by a PET scan. The PET scan showed a mixed response. Much of the lymphoma had disappeared but one node in my chest had grown. Unfortunately, this meant the chance of the stem cell transplant curing the lymphoma had dropped to around 20%. Rather than continue with the transplant, we decided to try for a new type of immunotherapy, CAR-T therapy.

CAR-T therapy is a revolutionary new cancer treatment that involves genetically modifying a person’s own immune system to fight cancer. Most other treatments only work while you’re having them, but CAR-T is a living treatment. So, it stays in your body fighting the lymphoma. Amazing! But it’s not without its issues.

CAR-T therapy is complex, very very expensive, and risky. Around 5% of patients die from the treatment and 25% end up in intensive care. The cost per patient is over £280k and there are only a few labs that can manufacture the CAR-T cells. So, the NHS only make it available to lymphoma patients who’ve had 2 previous failed lines of treatment. Hospitals can’t make the decision to give CAR-T themselves, a national panel meets weekly to consider potential cases. This meant a short but agonising wait to hear whether or not I would be given the treatment. Thankfully, I was and preparations for the treatment started straight away.

CAR-T is a very demanding treatment, and I had to be fit enough to have it. This meant a lot of tests! In the weeks leading up to treatment I had an ECG, echocardiogram, pulmonary function test, chest X-ray, PET scan, 24-hour urine analysis, physical examination and lots of blood tests and swabs.

The treatment is based around T cells. These are the part of the immune system that patrol the body looking for and destroying cells that have been damaged or infected. However, cancer is good at evading this natural defence mechanism and so the T cells aren’t able to recognise the cancerous lymphoma cells. CAR-T therapy works by inserting some extra instructions into the DNA of the T cells, which enables them to spot and then destroy cancerous B cells.

Unfortunately, it’s not yet possible for CAR-T cells to distinguish between healthy and cancerous B cells, so the treatment kills all of the B cells. This isn’t too much of a problem for lymphoma, as it’s possible to live just fine without B cells and drugs can be used to plug the gaps left in the immune system. However, it means CAR-T can currently only be used for a small number of mostly blood cancers. ¹.

The treatment works by first extracting a patient’s T cells. These are then sent to a lab (in my case they were flown to America) where they are genetically modified before being given back. I was offered a choice between two different types of CAR-T. I opted for Yescarta, which has more intense side effects and slightly higher risk of death but also has a slightly higher chance of achieving a lasting remission. In studies, about 40% of CAR-T cell patients go on to achieve lasting remission.

Connected to an Aphesis machine collecting T cells for CAR-T therapy — Having T cells collected with an aphesis machine

Collecting the cells happens through a process called aphesis and it was painless. Blood was taken out through a central line that I’d had inserted a couple of weeks earlier. The aphesis machine then separated out the T cells and pumped the rest of the blood back in. It took around 5 hours to collect enough of my cells.

Once the cells arrived back, the treatment could start.

References

1
BBC News – ‘Living drug’ offers hope to terminal blood cancer patients

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 loss¹. This is due to the cancerous cells using up energy at the same time as your body is using energy trying to fight them². 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 scales Having 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

Preparing for chemotherapy

Chemo for lymphoma can be pretty tough going, but there are things that you can do to prepare for chemotherapy that make it easier. Here are some of the things that I found useful.

Things to buy

Comfy clothes

Being in the hospital, even just for the day, is not very pleasant. Having some nice comfortable clothes can really help. The temperature is usually not controllable, so multiple layers are a good idea.

If you have a central line installed, having button-up tops makes access easier.

If your chemo causes hair loss, having a warm hat or other head covering makes a big difference, especially in the winter months.

Pillbox

After chemo, I was sent home with a large bag of supporting meds. Managing which of them to take when was made much easier and quicker with a pillbox. Once a week, I would spend 20 minutes preparing the pill box and then set daily alarms on my phone to remind me to take them.

PICC sleeve

If you have a PICC line installed, then a PICC sleeve makes showering much easier, it protects the dressing and helps prevents infections in the line. It’s just a case of slipping it over your arm when you shower and it works much better than faffing with cling film!

Thermometer

Chemo lowers your immune system and even small infections can quickly become life-threatening and you’ll need to regularly monitor yourself for signs of infection. So, a reliable and easy-to-use thermometer is an essential piece of kit.

Weight scales

My weight loss was very severe and so having a set of good digital weight scales was essential. I would weigh myself every morning and, using Bluetooth, my phone would keep a graph of just how I was doing managing my weight.

Toothbrush/mouthwashes

Mucositis is one of the many horrible side effects of chemo, but it can be reduced with good oral hygiene. Replacing your existing toothbrush with a soft-bristled one and using gentle mouthwashes several times a day both help.

Facemasks and covid tests

As chemo lowers the immune system, it’s a good idea to use facemasks whenever you are around the public. My hospital had a policy that visitors had to bring their own Covid LFT test and use it in the waiting room before they were let into the ward, so it’s good to have a supply of these.

Apple Watch

Though certainly not essential if you’re on a budget, I made great use of the many health features that my Apple Watch provides. Its heart rate monitoring was a good measure of my general state, and it would alert me if my rate went high when I was resting… a sign something was wrong. Medication tracking replaced alarms on my phone.

Doing exercise is proven to be safe and helpful while having cancer treatment¹ and the Apple Watch is great at recording and tracking your movement and daily exercise. I would set small and simple goals, chatting to my doctor as to what was an appropriate level, and then use the Apple Watch to track and encourage me to exercise when I could.

Things to prepare

Let people know

It can be difficult, especially at first, to break the news to friends and work/study that you have cancer. I told my PhD supervisor, close friends, and family as soon as I got my diagnosis. However, it was several months before I was comfortable telling my wider friend circle. I had a mixture of reactions, and I was surprised at those people, some of whom I hadn’t been in touch with for years, who were really supportive.

Macmillan’s guide to telling people you have cancer is worth a read.

Vaccinations

The doctor should advise you on whether you need to get any vaccinations when you’re preparing for chemotherapy. I had a free flu vaccine, as did everyone I lived with. I also had extra Covid jabs.

Emergency plan and hospital bag

Things can change quickly, particularly if you get an infection. I had 3 unplanned hospital admissions. So, it’s worth having a plan for what will happen if you have to go into hospital unexpectedly. Mine included always having someone able to take care of my dog, a lockbox with a key to my house, and a hospital bag packed and ready for someone to bring in.

Alert cards and emergency contacts

Your hospital may give you cards to carry on you with details of your condition in case you need emergency treatment. I had a haematology alert card and a steroid treatment card.

I also updated the In Case of Emergency (ICE) feature on my phone with details of my treatments, along with my emergency contacts.

List of hospital phone numbers

I made a list of hospital numbers and kept it where other people could access it. It included:

My Clinical Nurse Specialist
Haematology Emergency Triage Number
Haematology Day Unit
Haematology Wards

Entertainment

All the time spent in the hospital gets boring very quickly, so it’s worth collecting some things to keep you entertained. I invested in a couple of good pairs of in-ear headphones and over-ear headphones. Some things I used to entertain me included:

Books
An Audible audiobook subscription (which was a bit easier than reading when I was very fatigued)
Practising my language skills on Duolingo
Downloading some favourite TV shows to my iPad.

Hospital signal and wi-fi can be variable, so I brought always brought some offline entertainment as well.

Shaving

This is perhaps one of the less thought about things when you’re preparing for chemotherapy. But, if you’re having a cannula, or central line installed and it’s going to be in an area where you have hair, consider shaving it. For me, the most painful part of most of the treatments was having the dressing pulled off, so I eventually learned to shave my hands and arms if I knew I would be having a cannula put in.

Food

Eating while having chemotherapy can be challenging at times. Nausea, vomiting, mucositis, and taste changes all prevented or reduced my ability to eat at times. Combined with the weight loss caused by the lymphoma itself, I lost nearly 20% of my body weight at one point during treatment. But there are some things you can do to help.

If you’re concerned about weight loss, keep plenty of high-calorie snacks on hand. 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.

Asking for help

Lymphoma and side effects from the chemo really affected what I was able to do, I really could not have coped without the help of family and friends. As a very independent person, I found it difficult to ask for help and be reliant on others, but over time I realised that people wanted to help and to feel useful. The kinds of things I asked for help with were:

Pet care
Household chores
Gardening
Lifts to and from hospital appointments
And occasionally, hugs!

References

1
Exercise guidelines for cancer patients | Cancer Research UK

Having a PICC line/central line

As chemo involves lots of blood tests and intravenous medicines, it’s common to have a semi-permanent PICC line or central line implanted to make these easier and to reduce the number of needles and cannulas needed. As an example, in one of my chemo sessions, where I didn’t have a line installed, had to be abandoned after 7 attempts to get a cannula in my hand failed.

There are different types of lines. I had a PICC line for my first type of chemo (DA-EPOCH-R). For my second type (R-GDP) and my CAR-T therapy, I had a Tesio central line fitted.

PICC lines (Peripherally Inserted Central Catheter)

PICC lines run from your arm to a large vein near the heart. The installation of my PICC line was very straightforward. A specialist nurse on the haematology day unit did the installation. The vein in my arm was located using an ultrasound machine. I was injected with local anaesthetic and the line was then inserted. It wasn’t painful and took about an hour.

The line had to be flushed and the dressing changed weekly. My CNS did this for me in the clinic. My line occasionally got blocked, but the nurses had a procedure that dealt with that.

Getting the dressing wet loosens it and can lead to infection. So, there was a lot of trial and error involved in learning how to shower with the PICC line. Despite what the internet says, don’t use cling film, it doesn’t work at all! I bought this PICC sleeve, which was brilliant.

Having the PICC line removed wasn’t too bad,there was a little bit of pain as the clamp was removed but otherwise, it was ok. I have a very small scar on my arm where the line was.

More information on PICC lines are available on the Macmillian website.

Central lines (tunnelled central venous catheter)

Central lines generally go into the chest rather than the arm. There are various types of them and you’ll often hear them referred to by the brand names Hickman, Groshong or Tesio.

Tesio central line shortly after insertion

Currently, I have a Tesio Line. This type of line was created for dialysis patients, but it’s used in people having stem cell transplants and CAR-T therapy as the process of harvesting the cells is similar to what happens during dialysis.

The implant procedure for the Tesio line was much more involved than a PICC line. Whereas my PICC line was done on the day unit by a specialist nurse, the Tesio line was done by a full operating theatre team led by a radiologist. The procedure was very uncomfortable but not painful. It took about 45 minutes, but I was in the department for 4 hours for observations, waiting etc.

They have a preference for installing the line on the right side of the chest, but it all depends on how your veins are, which will be examined by ultrasound before the procedure starts.

The day following the insertion of the line was difficult. The dressing applied to the insertion site near my collar bone was very tight, this was to stop any bleeding. However, this made any movement in my neck painful, and even swallowing was uncomfortable. The next day it was back to the haematology day unit for a dressing change. This made things a lot more comfortable, though I was still sore for several days afterwards. A couple of stitches were used to close the insertion site, these were removed 10-days afterwards.

A tip, if you have chest hair shave it, all of it, before having the procedure. I shaved the hair on my pecs but not in between them, which was a mistake as the lumens of the catheter were taped to the middle of my chest. The dressings they apply are quite large and pulling them off chest hair is hell!

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:

Aciclovir	An antiviral for herpes viruses, such as shingles, which can reactivate when your immune system is low.
Allopurinol	Lymphoma cells can break down quickly when treatment starts, which can cause uric acid to build up. Allopurinol helps clear this.
Ciprofloxacin	A prophylactic antibiotic
Co-trimoxazole	An antibiotic
G-CSF	Granulocyte-colony stimulating factor – an injection that stimulates the production of neutrophils.
Fluconazole	An antifungal
Metoclopramide	Anti-emetic (reduces nausia and vomiting)
Ondansetron	Anti-emetic (reduces nausia and vomiting)
Omeprazole	Reduces 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.

Blood tests and lymphoma

As a lymphoma patient, you have lots (and I mean lots) of blood tests. Usually at least weekly while you are being treated. These are the principal method that the haematology docs use to see how you’re doing. Every clinic visit I had involved blood tests. When I was an in-patient, blood would be taken at 6 am every morning, so that the results were back for the doctor’s rounds in the late morning.

At my hospital, the results from the tests usually came back within a couple of hours. It wasn’t uncommon for me to have my blood taken in the morning, go home, and be called back to the hospital in the afternoon because something wasn’t right. Thankfully, I only live 10 minutes from the hospital, if you’re further away you might have to wait in the hospital for the blood results to come back.

Blood tests are made a lot easier if you have a PICC or central line fitted as they can usually take them from the line, which means fewer needles. However, sometimes, even with a line they’ll need to take “peripheral bloods” (i.e. from a vein instead of your line).

`Here are some of the key measurements about lymphoma blood tests that you may hear from your haematologist :

Red blood cells (Haemoglobin/ Hb)

These carry oxygen around your body and low levels are referred to as anaemia. Both chemo and the lymphoma itself can cause anaemia, which makes you feel awful and very tired. The normal Hb range for men is 130 to 180 grams per litre (g/l) and 115 to 165g/l for women¹.

When my Hb went low I was often treated with blood transfusions. This is a painless process taking about 2-3 hours per bag of blood.

Neutrophils

Neutrophils are infection-fighting cells, these often drop a few days after having chemo. Low levels of neutrophils (known as neutropenia) can leave you susceptible to infection, so I was given G-CSF injections to take at home. It’s not nice to have to inject yourself, but you get used to it. Normal levels of neutrophils are 2.0 to 7.5.

Platelets

Platelets help your blood clot. Normal levels are 150 to 400. Low levels of platelets are known as thrombocytopenia.

I would usually know how my platelets were doing by my nose. Whenever my platelets dropped, I’d start getting nosebleeds. When my levels dropped below 75 I was given a platelet transfusion, a painless procedure taking about an hour. For me, the R-GDP chemo caused my platelets to drop quite low, this delayed the installation of my central line as it was dangerous to have an invasive procedure without enough platelets.

C-reactive protein (CRP)

This is an indication of the level of inflammation in the body. An increased CRP can mean you have an infection somewhere. I twice had elevated CRP and both times I was admitted to the hospital for treatment with IV antibiotics.

If you have high CRP markers, it’s common for the nurses to take blood cultures, this is where a sample of your blood is put into a couple of little bottles filled with a growth substance, and the lab then monitors this for a few days to see if any bacteria or other pathogens grow in it.

Lactate dehydrogenase (LDH)

Graph showing lactate dehydrogenase levels during lymphoma treatment. — My LDH levels during treatment

LDH is an enzyme that is produced when tissue is damaged. It can be used as an indicator of the presence and level of lymphoma. There are many other things that can cause high LDH though.²

References

My experiences living with lymphoma

Life before lymphoma

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 lymphomas¹. 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 lymphoma². 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.