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My stem cell transplant

Trevor Battersby was diagnosed with follicular lymphoma in March 2004. He had a course of chemotherapy tablets but following a scan his doctors found that his cancer was transforming to high grade. More tests confirmed this and Trevor’s doctors suggested he had chemotherapy called R-CHOP with a stem cell transplant. This is Trevor’s account of his treatment.

R-CHOP

In December 2004 I started chemotherapy, R-CHOP. My medical team had warned me about some of the side effects I might have and especially about the effects associated with Rituximab (the R!). But I was really very lucky and had very few side effects. I had hair loss and was very tired but I didn’t have any sickness. I had been to a health food shop before starting treatment and I took glutamine which is supposed to protect your stomach. I don’t know if it worked, but I didn’t have to take any anti-sickness tablets. I even managed to work intermittently. I am self employed as a management consultant, so I was fortunate to be able to choose the work I wanted to accept. I finished chemotherapy in March. The doctors told me I should rest to allow my body to recover before the stem cell transplant. For 3 months I had regular check-ups and blood tests. In mid June the doctors felt it was time to start preparing for the stem cell transplant. They believed I probably still had a microscopic amount of lymphoma cells still in my body and a transplant would be my best chance of a cure.

Stem cell harvest

To get enough stem cells I had to have injections of a growth factor. A nurse showed me what to do and I injected myself every day. Once I had done the first one I realised it was not too bad and my attitude to both this and throughout my treatment was just to get on with it. I had no side effects from the growth factor and just had regular blood tests. After about 10 days I had my stem cells collected. I was attached to a machine, similar to a dialysis machine, with a drip in each arm. I was there all morning and actually found it quite relaxing as I read and listened to my MP3 player. They managed to collect enough stem cells from this first session and I went home and prepared to get the call to come in and have high dose treatment.

A couple of days later the consultant phoned asked me to see him the following day. He didn’t explain why he needed to see me so I had 24 hours of anxiety and thoughts of - ‘Oh dear- what’s happening now’. What had happened was the freezer where my stem cells were being stored had broken down and the stem cells ruined. So I had to repeat the growth factor and stem cell harvest. The consultant was both apologetic and hopping mad and I would have hated to have been the technician on duty! Again I was lucky and they managed to get enough stem cells to do a transplant. There were less than the first time but the doctors explained that they had successful transplants with an even smaller amount, so I was reassured.

High dose chemotherapy

The hospital was doing an unusual trial for people having stem cell transplants. It involved staying in a local hotel for chemotherapy and only going into hospital once treatment had finished. I was rather taken aback when the idea was raised, as I knew there was an increased risk of infection after transplant. My wife and I had even talked about how we could disinfect our flat! Although given a choice, I elected to stay in the hotel. My room had an alarm line set up and the hotel is only about 100 yards from the hospital. I liked being there as, despite being attached to a chemotherapy pump, it felt like a more ‘normal’ life. went to the hospital every day for a check up, but then could go out for a walk and eat when I wanted to. I was advised to avoid public transport and to be careful eating out, avoiding certain foods like salads, so my wife and daughters would often bring me fresh, home-cooked food. The hotel may have been better for me, but I know my family were very anxious.

On the last day when the chemotherapy finished my nurse said she would cancel my hotel and sort out a bed on the ward as I was likely to need it. I had felt so well during treatment I told her not to bother. Later that day my daughter and son in law took me out for a meal and I collapsed in the restaurant. Understandably this caused huge panic but my daughter got me straight to the hospital. I had doctors swarming over me, checking I was okay but I was just so zonked out I let them get on with it. I was alright but from then on I just felt wiped out.

Stem cell transfusion

Two to three days after the chemotherapy finished I had the stem cells back through a drip. This was completely painless but I still had absolutely no energy. I had some loose stool, but no other problems. At the end of August, 10 days after I had the stem cells infused I went home.

Going home

From then until Christmas was probably one of the most significant times for my wife, family and friends in terms of coping with my illness. Apart from a central line infection, when I had to go into hospital for IV antibiotics, I was physically well. I was just very, very tired and lethargic. All I wanted to do was watch daytime TV and I couldn’t walk far. My wife has since told me that getting in after a day’s teaching and seeing me curled up in a chair, half asleep, thin and with no hair was really disturbing, as it was such a departure from the old me. It made the treatment very real to her. She was able to unburden herself to colleagues at work so she could be strong for me at home. I found out later that my wife and daughters had tried not to fuss during my treatment and keep life normal, but they only managed this with a flurry of supportive phone calls between them

By December I was starting to feel better, I even managed to do the odd bit of work. I felt even more improved 6 to 8 months later, but it probably took a year to feel completely normal. I only see how ill I looked when looking back at photos, my face was very drawn and I looked tired and thin. I couldn’t see that at the time.

Four years later

My hospital check-ups reduced from daily, to weekly, to monthly, and are now yearly. I remember 2 years after my transplant as a real watershed. My consultant started to talk very positively about my progress and said that even if the lymphoma did come back they were confident it could be treated again. I am delighted to be on annual check-ups. I know what to look out for and can call the hospital team anytime if I am concerned.

People say that having cancer is life changing and I agree. Although I am back at work I am careful about how much I take on. If anything goes wrong I try not to get stressed or angry but think how much better off I am now than 4 years ago. I guess I had the lymphoma for quite a long time before I was diagnosed because I now feel better than I have for years.

Factfile

  • Follicular lymphoma is the most common type of non Hodgkin’s lymphoma (NHL)
  • About 30% of low grade lymphomas are this type
  • There are 3 grades of follicular lymphoma
  • Grade 3 is faster growing and likely to be treated as high grade
  • The main treatments for NHL are chemotherapy, radiotherapy and biological therapies

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Updated: 28 September 2009