Annabel H
Posted by

Two years on from APL and loving life

Annabel H
Posted by
22 Aug 2013

At the end August 2011 I noticed a couple of bruises on my legs. I couldn't remember banging them at all. Thinking no more about it at that stage I carried on going to the gym,working as a community matron and running around after my two children aged 11 and 13. However, after two nasty mouth ulcers and an increase in bruising I decided to look on the internet at the possibilites. I certainly did not have any other symptoms which would have caused concern. I felt well. I thought at the very worst it could be leukaemia, I only had a few of the recognised symptoms and considered myself very fit and healthy.

About two weeks later on September 12th I decided to go to my GP as the bruising was much more extensive in my legs and upper arms. Feeling it was not improving, my GP sent me for a blood test. My husband was away at the time working so I was holding the fort at home and not overtly concerned thinking I might be deficient in something.

That night I was contact by my GP urgently and asked me to go to AE immediately.I had platelets of 14, meaning I could bleed to death with so few clotting agents in my body. Luckily, I saw seen very quickly and my husband could return from work. There was still no actual diagnosis at this stage but I was admitted to hospital.

I saw a consultant the next morning and he literally saved my life as my blood counts were continuing to change for the worst. I was diagnosed with leukaemia but they were not sure what type I had so I was transferred immediately to see the specialists at St Bartholomew's Hosptial.  Fortunately, my friends rallied round to help with my children. My husband was distraught by the news and I became the strong one, having faith in the treatments available today.

The doctors said that they thought I had a very rare form of acute myeloid leukaemia called Acute promyelocytic leukemia or APL. Even though APL is as sub group of AML, I had the variant version called M3v, presenting with a higher white cell count than normal. APL also has a higher death rate due to the increased possibility of internal bleeding.

They started me on treatment that night after conducting a bone marrow biopsy for confirmation. I agreed to be part of an ongoing clinical trial for APL and was selected to the atra, (vitamin a) and arsenic route. They said my chances were extremely positive as they had a high sucess rate using this treatment. I was expecting chemotherapy but my treatment was classed as non-chemo. In addition to my treament I started supportive care as well as blood and platele transfusions and addition of clotting factors.

Arsenic was used many years ago by the chinese and now is a life saver. APL creates an abnormal protein caused by two chromosones fusing together, the arsenic therapy unfuses the abnormality.

The first few days in hospital were bearable. I asked them to do exactly what they needed to. I was determined that I was not going to die. The nurses were so attentive and being a nurse myself found great comfort from their knowledge as I had never heard about APL before. Unfortunately, as my body was being rid of leukaemic cells I developed severe headaches, vomiting and had pseudo tumor cerebrai (brain swelling). I was told this was crucial to rule out a brain haemorrage with M3v.

It was a difficult time for my husband and family but I recovered and continued with treatment of arsenic and atra and other supportive medications to help me cope with symptoms. Just four weeks later I was declared to be in complete molecular remission. I went home three weeks later and continued all my treatments as an outpatient at Barts which lasted 10 monts in total.

About three months into my outpatient treatment my experience began to affect me psychologically and I just felt so low. I found it difficult to come to terms with the prospect of leaving my family for long periods of time and my diagnosis caught up with me. More medication and counselling really helped. I sought support from the hospital and found a site on Facebook for survivors and fighters of APL. It was a God send to speak to people with the same experiences and realise you were not alone. The emotional battle was as hard as the physical. The "what ifs" were very destructive but the facts were the facts and kept me positive - I was in remission and had a good prognois.

Now nearly two years later, I love life! I never take things for granted any more and am aware that without reseach I certainly would not be here today. I am still on the trial and continue with bone marrow biopsies at check-ups to ensure that I am still in remission. I hope that my experience helps others and two years on feel ready to share it. I am also so lucky to have been part of the future therapies and have fantastic family and friends who have been behind me throughout my treatment. 

I always fill my leukaemia recycling clothes bag and encourage all my friends to do the same!



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