Carol

Carol talks about the overwhelming feeling of being in remission for the first time in 7 years after a new drug became available to treat her Hodgkin lymphoma. You can also watch Carol talk about the emotional impact of living with lymphoma

Carol

Living life at 150 miles per hour

Carol is a freelance trombonist, keyboard player, arranger, orchestrator and backing vocalist. Her work is very diverse – she goes from teaching trombone in London to touring with pop stars such as Seal, Sting and Michael Bolton. Carol has also performed in London West End shows and played with the London Symphony Orchestra. At the age of 26, Carol was diagnosed with Hodgkin lymphoma.

Symptoms

‘In 2004 l noticed a lump in the left-hand side of my neck. I had also noticed that my trombone felt heavier and more difficult to handle. I thought it was maybe a problem with my muscles, so I arranged to see a physiotherapist. The physio seemed concerned and suggested I see a GP.

The GP was really good and referred me to an ear, nose and throat specialist. I had an appointment 8 weeks later, when they did a needle biopsy. They didn’t find cancer cells in this biopsy, but told me they suspected it could be HIV, hepatitis B, hepatitis C or typhoid. I then had to have a whole lymph node removed. It took 4 weeks for the biopsy results to come back.

Diagnosis

I was diagnosed with Hodgkin lymphoma stage IIA. I actually felt quite relieved when I heard this because the other options had worried me even more. What I didn’t know back then, though, was that this was just the start of a very long period of treatment.

A scan showed that the lymphoma was in my neck and also in the mediastinum – the area between my lungs. I was told that chemotherapy would start immediately. I can still remember so clearly my dad’s face when we came out of that consultation - thinking back about that makes me feel tearful even now.

Chemotherapy and an autologous stem cell transplant

I was to start with the standard treatment of ABVD chemotherapy (doxorubicin, bleomycin, vinblastine and dacarbazine) over a 6-month period, which we started with confidence. Unfortunately the ABVD was not completely successful, so I was given two further courses of chemotherapy -  ESHAP (etoposide, methylprednisolone, cytarabine and cisplatin) and BEAM (carmustine, etoposide, cytarabine, melphalan) – and an autologous stem cell transplant (a transplant using my own stem cells).

The next scan showed that I still had some active lymphoma in my neck and mediastinum so I then had 3 weeks of radiotherapy to my chest. This damaged my lung capacity and unfortunately did not remove all the lymphoma in the mediastinum.  

Clinical trials

By now I had been transferred to a specialist cancer hospital and clinical trial centre. In June 2006 I signed up for a clinical trial for a new anti-CD-30 antibody treatment which was being tested for people with Hodgkin lymphoma. I was only the 22nd person in the world to try this drug; only the second in the UK, and I was the first to complete the 3-month course of 12 treatments and respond to it. After this though a PET scan showed that there was still lymphoma in my neck and mediastinum; the active nodes were now very small. The tumour between my lungs was being very persistent, but at least now I was able to have a break from treatment.

In 2008 I noticed the lump in my neck growing rapidly and in 2009 I entered another clinical trial for a drug called CHT-25. This was also a targeted therapy (another antibody drug, but this time with radioactive iodine attached to it). It was explained that this drug was targeting the protein CD25 which was present on my lymphoma cells. The antibody goes directly to the CD25 which has proteins and releases the radioactive iodine, which kills the lymphoma cell. I had to spend 9 days in a lead-lined room. I remember a man coming round with a Geiger counter to measure how radioactive I was!

I don’t know whether I was in denial, but I left all the worrying to the specialist. I know I am no health expert, so I tried to focus on what I knew about - whenever I could, I worked as a freelance musician. I carried on touring the world during this time, working with pop stars Seal, Sting and Michael Bolton between treatments. I was lucky enough to have work when I felt strong enough to do it. In fact, I struggled if I didn’t have anything to do.

 
I don't know whether I was in denial, but I left all the worrying to the specialist. I know I am no health expert, so I tried to focus on what I knew about
Carol

After another scan, though, I was told that the CHT-25 hadn’t got rid of the lymphoma. I was starting to realise how serious the situation was. But my clinician kept telling me about a drug which had just received FDA approval in the US and which he was hoping to be able to trial in the UK. The drug was called SGN-35 and is now called brentuximab vedotin (Adcetris®). It was almost as though responding a little to each treatment so far had given me the time for this drug to be available for me.

I was given 4 months of gemcitabine chemotherapy first, and in the summer of 2011 I entered a phase II trial of brentuximab which was made available for me on a ‘compassionate use’ basis. I was one of the first 2,000 people to have this drug in the world and I understand that nearly two-thirds of the people who have had it are still alive after 2 years.

I was to receive six courses of brentuximab, and at the time I was touring with Seal. I actually had to fly in for my fourth treatment and then back to continue the tour, and then again, a week later, for a PET scan to see if I was responding to the treatment. The results of the scan would be available within 12 hours. I received a phone call from my specialist the following morning when I was in a taxi, having just landed in France going back to join the tour.

I was told I was in remission for the first time in 7 years.

Deciding to have an allogeneic stem cell transplant

It was overwhelming. But I now knew that if I wanted to stay in remission I would have to have an allogeneic stem cell transplant. I had a couple of months to think about this.

I had a further two doses of brentuximab, taking the total to six. The drug caused me a few problems with numbing feelings in my feet and hands and in truth six doses was as much as I could bear - but I could still play my trombone and keyboard, which I was really grateful for.

I spoke with the transplant expert, who explained that as brentuximab was so new, they did not know how long the remission would last, although he suspected it would be around 3 years.

A match for an allogeneic transplant was found for me through the Anthony Nolan register and I was recommended to have the transplant sooner rather than later.

I was now faced with deciding whether to gamble on having 3 years of remission or to have the allogeneic transplant. It’s something I thought about an awful lot and I changed my mind about it regularly. I knew the transplant came with many risks - and having already had an autologous stem cell transplant, I knew what the treatment was going to be like. Having said that, nothing prepared me for the recovery from an allogeneic transplant.

It was very much left to me to make the decision. I’m very close to my parents and brother, and they have been unbelievably supportive throughout my illness. Everyone I talked to said they would support me, whatever my decision. This was a really tough time for me.

I chose to have the allogeneic stem cell transplant. For a while I wondered whether I had made the right decision. The transplant recovery was such hard work and I suffered with depression. I developed a rash that turned out to be graft-versus-host disease (GvHD), but it wasn’t too problematic. I also had problems with my heart and lungs. My heart is now fine, but my lungs have suffered quite a bit. Because I play the trombone, my lung capacity was probably really big, but during radiotherapy it had reduced by 20% and after my allogeneic transplant my lung capacity was reduced even more. For a while, I could tell my playing was impaired, but I did my best.

Going back to work

Information I had read suggested that I would be able to get back to work about 6 months after the treatment, although it wasn’t specific about the type of work. It was 9 months after the transplant when an offer of work came in - a tour in the USA. Although my medical team would have preferred me not to go abroad that first year, I really wanted to do this. They told me to make sure I was fully insured, which took weeks to arrange.

Because I am freelance, I was able to base myself near my treating hospital. This made me feel more secure. But, ironically, I got very little work from that area - I think some people thought I would need to pull out at the last minute. By contrast, other contacts of mine wanted to support and help me, knowing that if I had no income, then that would be an additional problem for me. So I ended up working a fair way from home, with quite a bit of teaching in London.  

Physically, going back to work was hard and I found it difficult even to walk up flights of stairs. But mentally it did me so much good and helped me recover far more rapidly. I was also really lucky that I didn’t get any infections.

Side effects of the transplant

I was told that after having the allogeneic transplant my blood type would change to that of my donor. Up until November 2013, two and a half years after the transplant, however, my blood type was still not changing and I was having to have blood transfusions every 2 weeks, for over 2 years for anaemia. I also had a course of rituximab and erythropoietin (EPO) injections to boost my red blood cells. I worried my body was attacking the new blood cells. Nothing seemed to help, but my specialists kept saying it would hopefully just change out of the blue.

My blood type changed overnight in November 2013.

With this change in my blood, my energy started coming back and I don’t get so out of breath now. I’ve noticed an improvement in my trombone playing and can feel that my body is building up again. It has taken a long time for my energy to come back and I have learned to pace myself.

Focusing on the future

The focus of my life for the last decade has been lymphoma, and I am now wondering what my focus is? For the last 10 years I have tried to live my life at 150 miles a hour, travelling the world and trying to put a lifetime into what I believed I had left. At my last appointment, my treating team said, ‘See you in three months,’ which felt really bizarre!

Now that I feel that I am through it, I get a lot more emotional. Before, I don’t recall crying, and was just focused and determined. Perhaps that was my coping mechanism. But now I get tearful about lots of things. I have seen a psyscho-oncologist at the hospital which is really helping me.

Looking back, I may have made different decisions had I not had lymphoma. In 2008 I was offered a full-time orchestral position with a symphony orchestra and if I had been well I may well have taken it. But because I was ill at the time, I really didn’t want to slow down. I wanted to continue travelling and I wanted variety – I had so much to fit in. Thinking about it now I am just so pleased I made that decision, because it really helped me through my treatment for lymphoma.’

Photo credit: Magi Haroun

Watch Carol’s film about the emotional impact of living with lymphoma