My name is Sally and my MPN story began in April 2012 when a visit to my GP resulted in a referral to the haemotology department at my local hospital and my first, (but far from last,) bone marrow biopsy. Myelofibrosis was diagnosed and I was sent home with leaflets and the knowledge this was a rare blood cancer so my case was to be referred to Professor Harrison’s department at Guys. Sharing the diagnosis with my three children was a tough call for them and me, but my daughter discovered the MPN Voice website which proved invaluable in providing information in a user friendly and balanced way. I’d say to anyone with a new diagnosis that although you will probably be desperate for more information beware the power of Google and choose your websites carefully.
At Guys my consultant was great in providing both the clinical expertise and emotional support we needed. I always take along my husband Peter who may let me do the talking but is my strong, quiet rock, taking in the barrage of information and remembering to ask the questions my flitter bug brain forgets.
I proved very quickly to be a little more complex than at first diagnosis. Guy’s examination of my bone marrow biopsy slides revealed a second and rarely talked about MPN known as systemic mastocytosis. The WHO have classed this as an MPN in which excess mast cells are produced in the blood and invade any and all organs of the body. I was put on medication to suppress mast cell production and the MF was kept on a watch and wait brief. A further biopsy revealed a third element of myelo dysplasia and the combination made me somewhat unique. Give me boring and common any day! Unique can feel a lonely place. Having an MPN can make us all feel pretty alone as even your GP, never mind your friends, may not have heard of them. The buddy system run by MPN Voice and chatting to other patients in the hospital waiting room can be a great help in feeling there are other people out there who understand and know exactly what you mean when you talk about fatigue and other MPN symptoms.
My consultant put me on Imatinib to control the MF symptoms which were becoming more bothersome but as this proved ineffective in my case she applied and was given permission to prescribe Ruxolitinib. Good old Ruxolitinib had a much better effect and my fatigue levels lessened considerably and my spleen size reduced by a small amount.
My body’s idiosyncratic decision to combine three relatively rare conditions meant that even the wonderful Ruxolitinib wasn’t going to be a viable treatment long term and after being the subject of some multi-disciplinary discussions the idea of a stem cell transplant was mooted. My initial reaction was ‘No way’ particularly as I felt better than I had in a long time but we agreed to meet with a specialist, who though based at Kings College Hospital runs regular clinics at Guys for their transplant patients.
His understanding but honest appraisal of my options and prognosis without the transplant and continued support from Guys made me re-evaluate the situation. Sharing that particular set of facts and figures with my family was particularly tough especially as we were newly bereaved of my much loved mum and still grieving at her loss. However, to coin a phrase from the younger generation it was a ‘no brainer’ as without the transplant my prognosis was two and a half years so long as none of the three conditions transformed to acute leukaemia during that period. No crystal ball but that transformation was a ‘when’ not ‘if’.
So here I am now. My sister wasn’t a match but through the Anthony Nolan trust the consultant found me a 10 out of 10 match on the international database. I had my transplant at Kings College Hospital in January 2014
I am enormously grateful for the clinical and emotional care I’ve received from the transplant team at Kings and it goes without saying, though no words can adequately express it, I feel the most immense gratitude for my donor. That a complete stranger should give me the gift, the opportunity of life and health, is just amazing
For the first 4 months all went well with my transplant and at one stage I had achieved a 99% chimerism in my blood and bone marrow with my Myelodysplasia already in remission. It was predicted the MPN components would take longer to disappear. However, a bone marrow biopsy in August showed my chimerism had dropped considerably and it was decided in September that I required a further course of chemotherapy followed by a donor lymphocyte infusion. I have now received the chemotherapy and am awaiting my recovery before the infusion. Yet again my wonderful donor has stepped up to the mark and donated these specialist white blood cells ready for my use.
I cannot pretend this has not been a set back. We all want things to go smoothly but it IS A set back and the expertise of the clinical and emotional care I have continued to receive from Kings plus the ongoing interest taken in my case by my consultant at Guy’s, give me great faith that I could not be in better hands.
How have I coped with my own personal journey? The usual support of family and friends is my mainstay. The support for me as a person not just a patient I receive from my medical team and from a marvellous local charity, Helen Rollason Cancer Care, which provide complementary care such as reflexology and massage and a haven of understanding and empathy. For me information, knowing what I’m up against is important. Not everybody wants to know the statistics but I’m a need to know person. Finally and most
frivolously I make up pictures. I put it down to a lifetime of being an infant teacher. My mast cells are mischievous imps with horns on their heads and pins in their hands rushing around my body going “Ah ha another organ to invade!” My donor is Danish and when I was experiencing Graft versus Host disease of the skin I envisaged an army of Viking warrior cells hunting down and killing off my last Anglo Saxon cells. I even have a wonderful cartoon to that effect drawn by an artist friend of mine and I smile whenever I look at it.
So onwards and upwards. We have a rare disease but our options for treatment and the research being done in this field place us MPN sufferers at the forefront of medical research. We are unlucky but also very lucky cancer sufferers.
This is my story so far. Like all MPN sufferers I’m on a journey and as my consultant said to me once pre-transplant ‘it is a life time’s journey’. Good luck to all you fellow travelers.