My Leukaemia Story

Monday 5th March 2001 is a day indelibly etched on my mind. It is the day my life changed and the lives of those around me. It was the day I was diagnosed with Chronic Myeloid Leukaemia (CML) aged 30.

People often ask me, ‘What went through your mind?’. It was all a whirlwind and somewhat of a haze, however my mindset was very much focussed on ‘Give me the information and the facts – I need to know what I have to beat’ mixed with ‘I just want to see my family grow up’ whilst at the same time being exceptionally scared. It is a very difficult situation to describe, and not one I would wish on anyone.

I am not ashamed to say it was the most frightening time of my life, yet there had been signs something was not right for the previous 18 months or so.

I had been constantly fatigued and had been to the doctors on various occasions with different ‘small’ issues including struggling to breathe on one occasion and a significant tooth abscess on another.

I put this down to work – I was travelling a great deal and working long hours – and along with my wife Fiona, raising a young family (at the time Imogen was 10 months old) based away from family in Winchester.

To make things even more frightening a week earlier to my diagnosis we had delightfully found out we were to expect our second child (that’s you Livvy!).

Talk about highest high’s and lowest low’s.

Whilst I had generally felt tired for some time, being diagnosed with CML was a relatively quick series of events.

 The previous week I had been driving to Maidenhead for work and had noticed something wasn’t normal with my right eye. I had some sort of ‘black spot’ with my sight.

I made an appointment to see a high street optician in Winchester on the following Saturday (so I didn’t have to take time off work).

I owe a great deal to the optician, and unfortunately never got his name. After looking ‘interesting’ (I have come to realise being ‘interesting’ in medical terms is not great news!) he immediately booked me in to see an Eye Consultant in Southampton General Hospital the next day (a Sunday!) as an ‘emergency’.

 The Sunday was spent being ‘interesting’ to the on call Eye Consultant with a memorable ‘I’d like to take some blood – it’s not normally what we do but I think it might help’. With my eye’s streaming from all the ‘stuff’ they had put in them to check the retina, my arms then became the biggest pin cushion for the day. I staggered out of the hospital trailed by the Consultants words ‘The hospital will call you with the blood result’.

At this point it was clear something was not right – we just thought it was with my eye – family history of glaucoma were running through my mind.

9am Monday 5th March 2001 and the call came. ‘We would like you to come in to the hospital, we suggest you pack an overnight bag, you have a high white blood count and we need to see you ASAP. Have you got a family member that can come with you?’

I remember that call word for word to this day. Straight away I looked up ‘leukaemia’ in the dictionary. I don’t know why, it must have been the correlation to a high white cell count at the back of my mind.

With my head spinning I knew it wasn’t good – I called Fiona to meet me at the hospital and called my Dad asking if he could drop everything and travel down from Yorkshire with Mum, it looked like we might need a babysitter.

From then on it was a whirlwind – I cannot exactly remember when the diagnosis came, other than one of the nurses saying ‘We are amazed you have walked through the door’.

My white cell count was 375. It should be 8 – 12.

 My blood system was so ‘clogged up’ with white cells it was barely functioning properly which would explain a great deal of the fatigue over time and the ‘black spot’ in my right eye. The ‘thickness’ of my blood had caused a retinal haemorrhage, giving rise to my ‘central macular intrusion’ (black spot).

Fiona, family and friends were fantastic, rallying around and heading down to Southampton from the North East and Scotland.

In amongst the endless blood tests and drip changes every 3 or 4 hours, scans on my spleen, a visit to a machine that skimmed my white cells out in bulk, doses of Hydroxyurea and painkillers and visitors in and out over the following few days came the ‘doctor at the end of the bed’ moment which you never get to forget.

The prognosis was I was lucky to be still walking and even more fortunate my CML had not yet progressed to Acute Myeloid Leukaemia (AML).

My two options were a Bone Marrow Transplant (BMT) and with no siblings the tests came back I had at best a 40% chance of success if a match could be found. Alternatively it would be a drug called Interferon with similar stats.

Either way it was not going to be pleasant, there were no guarantees and the odds were against me rather than with me. I could be cured, however on average life expectancy would be 5 years.

 I cannot even begin to explain what that statistic does with your mind. It is like being given a death sentence with maybe less, maybe more than 5 years to think about it. My thoughts were now very much on ‘I’m not average, I’m going to win’.

Then the glimmer of hope arrived. It was explained that there was a new breakthrough drug that was in initial trials and looked to be working well and if I was interested they would try and see if I could enter a trial.

It was a pill that was taken orally every day, had a few side effects but nothing like the other two options, however due to the fact it was new they had no idea if there were any longer term side effects or if the good results would continue. Even so, with the other options on the table this seemed like a decent shot in the relative dark to me.

Apart from Fiona the family were not overly keen on trying something that had so little background information even though early results looked great in comparison to other treatments.

 The drug was called STI 571 or Imatinib (aka. Glivec or Gleevec) and I wanted to give it a go. If it didn’t work then the original two options would still be there.

A couple of days later hopes were dashed. There were no trials open and it was not available on the NHS as it was still in trial. It seemed like the potential glimmer of hope had gone.

After ten days I was finally released from hospital initially having to return daily for blood samples to be taken and my dose of Hydroxyurea to be altered accordingly.

Within two weeks of diagnosis I was back at work, working from home.

What seemed like a last long shot was to see if our Private Medical Insurance (PMI) would cover it.

Imatinib was relatively new, not on the NHS and expensive…not a great pitch to take to any insurance company!

It was decided I would continue on Hydroxyurea whilst the hospital searched for a BMT match and we pursued the Imatinib options with my insurance company.

This was a risk as Hydroxyurea only controlled the white cell count to keep my blood flowing through the system, and did not in any way ‘treat’ the cause of the leukaemia. The leukaemia could progress at any stage.

August 2001 and the amazing happened. The call came and I could start on Imatinib with the insurance company agreeing to fund it – a decision we are grateful for to this day. A light at the end of the tunnel was there again!

So started my daily regime of 400mg of Glivec, initially taken as four orange 100mg pills. Later this would change to be delivered as a standard 400mg dose in one orange pill – The Magic Cancer Bullet as it became to be known, a drug that not only changed life for my family and I, but one that changed the face of CML treatment and the wider context of targeted cancer therapy.

My blood counts immediately started to stabilise, I had few side effects other than a few aches & a little nausea.

Visits to my consultant soon became monthly and in August 2002, exactly a year after starting Glivec my bone marrow test result came back Philadelphia Chromosome (the chromosomal translocation that defines CML) negative for the first time! At the bone marrow level they couldn’t find any leukaemia cells!

This now meant I was going to be measured for Minimal Residual Disease (MRD) using Polymerase Chain Reaction (PCR) techniques. This was looking for leukaemia cells at the molecular level – looking for the one in a million!

Results gradually moved down from 0.2% BCR-ABL PCR at the end of 2002 to settle around the 0.03% BCR-ABL PCR from 2004 onwards.

With such stable results my trips to the Consultant for check ups and blood tests moved to every 4 months – we had the delight of Livvy added to our clan and moved back ‘up north’ to be nearer family. From August 2002 life was and has been ever since ‘back to normal’ – well as normal as life is these days!

 Whilst I cannot claim to be ‘cured’ in all extent and purposes Glivec has for myself and many others made CML a chronically managed disease.

Over 9 years on from initial diagnosis I am in the top percentile of responders for Glivec. The trial I initially missed out on (my crystal ball!) continues to show consistently stable results with an over 90% survival rate after 5 years. Certainly better than my ‘doctor at the end of my bed’ odds and an absolutely incredible step forward in the treatment of CML.

Glivec is now first line therapy for the majority of CML patients with many new targeted drug therapies being created, and the more money that is raised for research the more lives can be saved and more stories like mine can be created.

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8 responses to “My Leukaemia Story

  1. Dear Harvey,

    Thank you for writing your story and starting this blog. It has been a long time since we have been in contact and I am so glad to hear that your response to imatinib has been so good and more importantly you results have remained stable over the years. That is very good news for the future.

    You might have read my diary on the CML Support website which outline my own experience. Your story has a lot of similarities with mine except that I was diagnosed in a later stage of CML and so had a more complicated ‘cell picture’. I eventually failed to hold my good response to imatinib and went ahead with a stem cell transplant in 2003. All is well and I am fit and healthy…one of the lucky ones.

    I would be more than pleased put your blog as a direct link on our site (due to be upgraded soon to an all new shiny one) and would like to thank you for putting the group under your support network.

    I still work hard to support all UK CML patients through the website forum, even though I am now ‘cured’. I want to help as many people as I can because I will never forget that I was lucky and was able to access information about the trials of STI571 through such an online group (ACOR.org) back in 1999.
    Through the information given to me by one of that groups group members I was able to travel with my family to the US and enrol in Dr.Brian Druker’s phase 2 trial at OHSU in Portland. My response was good and that experimental drug saved my (and many others) life.

    I wish you and your family well and will keep in touch.

    Sandy

  2. Sandy,

    Great to hear from you once again and to read the fantastic news on your health.

    We are fortunate to have gone through ‘revolutionary’ times in terms of CML treatment, as you say we are ‘lucky ones’.

    What is important is that more stories like ours are written and through awareness and fundraising every little helps.

    Thank you for the add to the cmlsupport.org.uk site – it is a community beyond value in my eyes and helped a great deal through testing times.

    All our best wishes,

    Harvey.

  3. Jennie

    Harvey, I found your blog on the UK CML support website, and I, like Sandy, I just wanted to thank you for sharing your story. I had never thought about the days when Glivec wasn’t automatically available, the times when it was still a trial drug or indeed the times before it existed! It’s weird to think that people such as yourself had to fight to go on a trial just to get access to the pills which so many of us are automatically given, without problems nowadays.

    I was diagnosed nearly five years ago at 15 (rare at such a young age, I know!) and put straight onto Glivec within DAYS. It has indeed been my saving grace letting me live a thoroughly normal life most days in a year and bringing my marrow back in line to be Philadelphia free! I am thankful everyday for what Glivec has done for me but I admit to taking it as a given that it’s always been there.

    Having read your story, I now realize this has not always been the case, and that even within my lifetime there were people who weren’t given the chance that we were because this drug just wasn’t around. Thanks for reminding me to be grateful for the chances we have been given!

  4. Hi all,

    Just putting in a cross reference link to a post on my blog which explains in more detail my results and therapy which you may find useful:

    Understanding CML, Glivec, PCR Results and where I fit in:

    https://leukaemiacharity.wordpress.com/2010/02/03/understanding-cml-glivec-pcr-results-and-where-i-fit-in/

  5. Michelle

    Dear Harvey

    Like the others who have posted, I want to thank you for sharing your story. My 37-year-old partner was diagnosed with CML this past December, when our first child was just four months old. I know you can imagine what we’re going through right now.

    My partner has, however, been incredibly lucky to have been accepted on the latest SPIRIT trial that’s testing Dasatinib as first-line treatment for newly diagnosed CML patients. He’s now taking Dasatinib every day and is responding ‘fantastically well’ so far (those are his doctors words, not mine).

    But while his immediate response to the drug has been exactly what we and his doctors hoped for, we have been struggling to cope emotionally with what the future may hold in the long term, particularly with regards to wondering whether he’ll be around to see our baby daughter grow up. Reading your blog about how well you’re doing eight years on has filled me with genuine hope for the first time in months.

    Thank you so so much.

    Michelle

    • Hi Michelle,

      Thanks for the post.

      It is great news that your partner is on Dasatinib on the SPIRIT trial and that results are heading in the right direction.

      We can totally appreciate the emotional rollercoaster. You will find time will help clear the ‘fog’.

      This can only be helped by your partner, you and support network being positive even when at the time it might feel difficult.

      Concentrate on getting through the ‘now’ and the future will come.

      Drop me a line if you want to chat.

      Harvey.

  6. Kate

    Hi Harvey
    Just got diagnosed on the 16th January this year (I’m 39 and had random blood tests for immigration to New Zealand) and starting to read lots about CML online. Came across your information and found it really useful. I’m on Imanitib and so far so good. My blood count is down to 6 so from 265 it’s going on the right direction. It’s been just over a month and I now feel able to read about it….
    Thanks

    Kate

  7. Nick

    Harvey,

    I hope this finds you well! Thank you for sharing your story with us! I found your blog searching for CML resources and would like to add it to our blog directory (link below) so that others dealing with CML can learn from your experiences. However, I wanted to get your permission first. Please contact me at nickv@navigatingcancer.com if you’d like me to add it to our directory.

    Take Care,
    Nick
    https://www.navigatingcancer.com/explore/leukemia/blogs

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