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
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:

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.