Andy J
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Coming to terms with the long term side effects of treatment

Andy J
Posted by
11 Sep 2014

I was 18 when I was diagnosed with chronic myeloid leukaemia and at the time was just a week away from starting my degree in History and Politics at Exeter University – something I was really looking forward to after a turbulent summer spent working for the first time, partying too much and coming to terms with the fact that my Mum was suffering from terminal bowel cancer.

That was 11 years ago almost to the day and was an extremely difficult time for me and my family. However, we got through it all together and whilst my mum did not live long after my diagnosis, she did live long enough to know that my bone marrow transplant had been a success - her final wish. For that I will forever be in the debt of the extraordinary doctors and nurses at the Hammersmith Hospital.

After the transplant I began a new chapter in my life in which I was fortunate enough to do some pretty incredible things. Things like going to university, watching the sun rise over Angkor Wat and running from John O'Groats to Land's End. 50 years ago doing this like this would never have been possible and its thanks to the huge improvements in blood cancer treatment after painstaking research that I not only to survive the transplant but to be able to enjoy 100% quality of life.

Long term side effects - diagnosis

About four months ago I was diagnosed with an extremely rare lung condition (there are currently less than 100 officially diagnosed cases to date) called Pleuroparenchymal fibroelastosis, a type of pulmonary fibrosis, which doctors believe was brought on as a result of my bone marrow transplant.

It's safe to say that this was not something that I saw coming even though the signs that something might be up had been there for some time. I'd had a cough for as long as I could remember, was prone to chest infections and was struggling to do anything in the form of exercise which was unusual as up until as recently as a year ago I had been extremely fit.


The prognosis isn't great and there is no standard course of treatment. However, it's not all doom and gloom. I'm on a course of steroids which appear to be preventing the condition from getting any worse and doctors are hopeful that this will remain the case for the foreseeable future.

Whilst I've found it hard to come to terms with the prognosis and the fact that I won't be able to do many of the things that I used to do, I don't feel resentful. It's no one's fault that this has happened to me and secondary complications of some kind, especially with something as signifciant as a bone marrow transplant, was a risk explained to me when I signed up to undergo the transplant.

Improving treatments

If I had to make the choice all over again, I would make the same call in a heart beat. I don't regret my decision. However, if I had the same choice again today, 10 years on, I might possibly have chosen differently as a result of the introduction of drugs like imatinib which have revolutionised the way my type of leukaemia is treated with very positive effects. That's something that I'm cheered by, not resentful of, as one day researchers might have found something that can help my lungs, too.

The risk of long-term side effects after treatment (in some cases, like mine, many years later) is a possibility for all blood cancer patients and I don't think we should shy away from that. However, it does not mean that all patients will experience these side-effects or that they can't be treated. What's important is that you report issues to your consultant when you have check-ups and that existing treatment of blood cancers, whilst improving all the time, are developed further.

More research needs to be done in order to improve treatment options and stop side-effects from happening so that blood cancer patients can go on to follow their dreams after treatment.That's why I'm supporting Leukaemia & Lymphoma Research during Childhood Cancer Awareness Month and I advise you all to do the same.

Find out more about Chidhood Cancer Awareness Month and how you can help raise awareness about the need to reduce the toxicity of treatment to enable more children to be free to follow their dreams free from the fear of relapse or secondary side-effects.



Your outlook is incredible Andy, you're such an inspiration.  Reading your blogs always helps me to put things into perspective - great work, have a cracking weekend.


Thanks Ben!

I try my best to be optimistic and look for the positives as I don't really see what alternative there is. Feeling sorry for myself isn't going to get me better and only means I spend my whole time feeling miserable which seems counter productive to me. We should get you signed up for some kind of challenge!