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Nigel was diagnosed with chronic myeloid leukaemia (CML) in 2010. Read his story and his worries around the proposed changes to the Cancer Drugs Fund, especially for CML patients.

Prior to diagnosis I felt very well and had no real symptoms.  I had been working full time and playing squash three times a week.

However, on reflection, I do recall saying to my wife on various occasions (jokingly) before my diagnosis that I was sure I had M.E because I was so tired.  Clearly this tiredness was part of my leukaemia. 

Over the weeks prior to diagnosis I lost almost a stone in weight, I had noticed a lump in my stomach, (which turned out to be an enlarged spleen), and I had also been suffering with some severe night sweats, which again is very common in blood cancer patients.  I went to the hospital due to flashing in my eye which I put down to the symptoms of a detached retina which I had previously.  I was referred to the eye hospital, they examined my eyes and took my bloods.  I received a phone call a couple of hours later, around 11pm, asking me to call them urgently.  I didn’t get this message until the following morning, which is when I called them back. I was told I should go to the hospital for 9am, an appointment had been made.  I still didn’t give a great deal of thought to this, I just assumed it was to do with my eye. 

I went to my appointment and was told that I had almost certainly got chronic myeloid leukaemia (CML) and this would be confirmed with further blood tests and a bone marrow biopsy.

How did I feel when I was told that I had blood cancer?  I took it very well. I was very matter of fact and spent about an hour with the doctor discussing medication, treatments and the future.  On leaving the hospital I called my wife who came home and I told her, together with my children who were 12 and 15 at the time. We were all very upset and certainly over the first few hours and days I had the usual fears and worries that anyone would have about an early death and particularly of being not there for my children and family both now and in the years to come, certainly those first few days were very difficult.

I had a bone marrow biopsy taken and my CML was confirmed, I was then placed on a course of low dose chemotherapy to bring my white blood count down. Once it was low enough, I started taking imatinib.

My biggest worries were whether the drug would work. I had heard about its miraculous results and hoped I would be one of the patients that did well on it. There are now five approved drugs to treat CML, albeit only two are freely available on the NHS, with the other three currently available via the Cancer Drugs Fund (CDF).

The outlook for CML (and myself) is clearly unbelievable. From a death sentence fifteen years ago and the life expectancy of three to five years post-diagnosis, this is now changed to a full, normal life span.  The treatment has enabled me to work full time and to continue playing squash three times a week.  I am one of the lucky ones. I have almost no side effects at all and fully appreciate how fortunate I am. This is not the case for all patients.

With the imminent changes to the Cancer Drugs Fund I feel these could be quite devastating to CML patients. Whilst imatinib and nilotinib are available as first line treatments, the other three drugs are not, these are only available via the Cancer Drugs Fund or via clinical trials. Ponatinib is only available to patients in England that have the T315i mutation, which limits its use significantly as there is no access for any other reason. Ponatinib is an outstanding drug (although it does have a more severe side effect profile) and because of this, it is available in Wales and Scotland, which seems ridiculous as we are all one country.

Additionally there is also dasatinib and bosutinib.  From what I understand, dasatinib is likely to come off the CDF in the near future and be available routinely from the NHS, although this is only hearsay at present. Bosutinib recently had its availability amended via the CDF and now is much more difficult to obtain. Its future access remains unclear.  The impact of these changes, without wishing to be melodramatic, is potentially a death sentence for some patients. We have drugs here in the United Kingdom that will save lives and give a normal life span to patients. However due to the changes that are proposed, and potentially could take place, access to these drugs will be significantly restricted, meaning people will be dying needlessly.

Should I fail my current drug (imatinib) then my next line of treatment would be nilotinib as this is the only other readily available CML drug via the NHS at the moment. Should this then fail I would need to access one of the three other drugs that are currently accessible (with restrictions) via the CDF.

The proposed changes mean that the availability of my future or “back-up” treatment options (should I ever need them) is uncertain. An unnecessary worry for any patient. It is frustrating to consider that the drugs have been developed but might not be accessible when I, or other patients, require them. 

As a CML patient, you almost feel “fortunate” that there are so many effective treatment options available to you, should you need them in the future, and a genuine prospect of a normal life span. If these changes go ahead and if a new system is not introduced that considers treatment for rarer cancers (like CML) then many, many patients may not have their next line of treatment should they need it.