Stem Cell Transplant Archives - Living with Lymphoma

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!

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.

Tag: Stem Cell Transplant

Having a PICC line/central line