Dick M
Posted by


Dick M
Posted by
14 Aug 2014

Having only just registered on this site, I've been amazed and humbled at the stories of courage and cheerfulness in the face of considerable adversity. In comparison, my own experience of a blood cancer feels almost trivial, but it may be worth recounting as there appear to be no histories relating to the more obscure myeloproliferative neoplasms.

For anyone who has just received a diagnosis of one of these cancers, it may be useful to read one person's experience.

Symptoms & Diagnosis

Last year, around my 69th birthday, I had been suffering from a range of trivial, but annoying infections, colds, catarrh etc. which seemed difficult to shake off. The colour of my hands also seemed rather odd, being much more of a reddish purple than normal.

Then a serious attack of dizziness and vomiting forced me to see one of our local GPs, who diagnosed an inner ear infection, but insisted on some blood tests to eliminate other possibilities. The GP also decided my blood pressure was too high and that needed treatment. Apparently, the preferred treatment is not recommended for anyone with any heart problems, and it also looked as if I had a heart murmur. All very worrying, not helped by the doctor's approach, which was to pass me between various clinics like a parcel, with no explanation or discussion.

Fortunately, the coronary clinic decided the heart murmur was not anything to worry about, and one of the other GPs was much more forthcoming in discussing the details. However, I should  be grateful to the first one at least for insisting on the blood test, as this revealed a very high platelet count and a need to visit the haematology department of Aberdeen Royal Infirmary. The specialists there immediately diagnosed essential thrombocythemia (no idea what is essential about it!) and were extremely helpful, explaining the likely prognosis and the pros and cons of different treatments.

Treatment & Side effects

As a result, after some delays, a daily dose of the chemotherapy hydroxycarbamide was started, and I awaited the onset of the multitude of threatened side effects that are mentioned in the literature. After a short period for my gut flora to adjust, there have been no noticeable side-effects and after increasing the hydroxycarbamide dose in stages to 1g per day, my platelet count had come down sufficiently for the specialists to decide it was stable and higher dosage was probably not advisable in view of the risk of reduced red cell counts. 

Regular blood tests and hospital appointments are now the order of the day, but so far, all seems to be going well. Of course, there is always the concern that the condition can develop into full blown leukaemia and the probability of this is slightly increased by the chemotherapy, but that is a bridge to be crossed if and when it occurs.

Living with thrombocythemia

I have probably been very lucky; thrombocythemia seems to be one of the blood cancers which is relatively easy to treat and my system has responded to the hydroxycarbamide without problems. It may be relevant that prior to last year, my health had been pretty good; having a good knowledge of nutrition meant that our family diet was good, with a relatively low meat intake and a lot of fresh fruit, vegetables and dietary fibre. It seems that appetite has been affected by the thrombocythemia, so I tend to feel more hungry and eat more, but am not putting on weight so far. 

Cycling, walking and gardening all play their part in maintaining reasonable physical fitness and to celebrate my 70th birthday, my daughter and her dog led me up Lochnagar, probably my first Munro, a 20km walk with an altitude gain of 800m.
So if you do get a diagnosis of a MPN, my advice would be to talk to your specialist, make sure you understand the pros and cons of treatment, and try to keep fit.  Maybe you will be as lucky as, so far, I have been.



Hi i have just been told i have essential thrombocythemia and today i had a bone marrow biopsy i have been feeling ill since having my daughter 3yrs ago and doctors finely did a full blood test and realized my platlets were very high and my symptoms are really bad at the moment i havnt heard of anyone as of yet that is my age and has it as im only 25 and im a little scared too x


As an elderly male, I'm not best placed to comment on your situation, although someone told me that ET is more common among young women than young men (anyone got a reference for this?). Only advice is to listen to, and just as important TALK to your haematologist. He/she will be able to give you proper advice if you tell them everything you think is relevant. Your GP may never have encountered ET before, given its rarity, so don't be disappointed if he/she can't give you much advice.
And while it may seem strange to say this, don't spend too much time on the internet, even on the specialist forums for MPNs. It's all too easy to get really scared by the postings from those who have more severe issues; you may well not be one of these, so don't add to problems by worrying.


Terrific blog post, DIck. Thank you so much for sharing your experiences with blood cancer and helping spread awareness about thrombocythemia which, as you say, is often overlooked and known about by far fewer people than say leukaemia or lymphoma.

Your attitude towards it all is absolutely fantastic and it's great to read about how you're getting on with life and not getting the treatment get in your way. This is something we want for all blood cancer patients and will not stop until that's the case.

Thanks again for taking the time to write this blog and all your support of the charity.



Hi anonymous, sorry to hear about your recent diagnosis with thrombocythemia. I hope that the treatment has helped alleviate your symptoms and that you are feeling a little bit better about the situation now that you've had a bit of time to get your head around things.

Diagnosis is a very difficult time for patients and their families and it is totally understandable that you should feel anxious. The important thing to appreciate is that you're not alone and support is out there, starting with your consultant who should always be there for you if you have any questions relating to your condition. You should also have access to a support nurse who will be able to talk to you more about things, whilst we also have information on blood disorders like thrombocythemia:


In addition, as you've found we have an ever growing base of patients and family members writing blogs about their experiences which in time we hope will have grown to such an extent that we can provide things like forums and live Q&As with nurses and doctors on specific issues.

In the meantime, please don't hesitate to get in touch if you have any questions or need help in any way. One thing you might find useful is to write a blog yourself about your diagnosis - I found this really helped me out when I was diagnosed with CML as it helped me get out and make sense of my feelings and what I was going through.

Thanks and all the best with your treatment,



I was diagnosed with Essential Thrombocymia 7 years ago. I Take Hydrea, also pills to lower BP and homoepathic remedies for back, etc.
I am 67 years old, an Avon rep, enjoy organic gardening, cooking, especially with our home grown veg and fruit. We "doggie-sit" our daughter and son-in-law's dog and love going to all the rural pub/restaurants here in Bedfordshire. We do the Times Listener crossword each week. My husband had a triple heart bypass at Harefield last year. He is now back to playing golf twice a week.
We both thoroughly enjoy life,


Good to see another old(ish!) one coping well with a very similar lifestyle. Haven't yet tried homeopathy for back - constant exercise of abdominal muscles seems to control such problems for me (most of the time). We left Bedfordshire/Buckinghamshire borders some 8 years ago.


Hello I've also been diagnosed with Thrombocytosis. Waiting for a bone marrow biopsy to confirm if it is (primary) ET, which is suspected. My doctor looked back on my records and I've had a high platelet count for 10 years, he apologised as it has been overlooked and never addressed. I was admitted to hospital last year with uncontrollable menstrual bleeding and was discharged with a very high platelet count. The hospital said it was expected to be high as I had lost a lot of blood, and it told them my bone marrow was working properly by producing lots of platelets to clot my blood ! Months previously I was prescribed a blood clotting drug to help with my heavy periods by my GP.I only took a few as had excruciating stomach pains. I do believe these tablets could've killed me. I'm 51 years old ,I also have recently developed high blood pressure .I have dizzy episodes every day and daily episodes of a very rapid heart beat , its very frightening. Every day when I wake up I wonder if I will get through the day without having a heart attack or stroke.


Sorry to hear of your experience, Marie. It's obviously scary, but try hard not to panic, 'cos it won't help your BP and will only make you feel worse (easy for me to say, I know!). I've got highish blood pressure, so take daily medication, and as noted in my original posting, it was severe dizziness that started me on the trail that led to diagnosis of ET. Just make sure you tell your GP all the details, and ask to be referred to haematologist quickly. They are the experts - GPs see so few of us MPN oddities that they may not know much about our particular needs.


Thank you for your encouraging reply. I did see a haematologist within 2 days of being referred by my GP. I'm having a bone marrow biopsy done in 2 days time and had a brain MRI scan done within days of being diagnosed, after reporting a funny turn I experienced a couple of months ago when I unknowingly had ET.I am awaiting the results. When I look back I've had symptoms for a long time but tended to brush them under the carpet ,it all makes sense to me now. I'm glad I found this forum as I don't know anyone who has the same blood disorder and its comforting to read other people are doing well and their condition is under control.


HI! I too have been diagnosed 3 months ago with ET and I am only 23 years old.. I have put on to Hydrea 500g daily with anti depressant pill.. I responded with it well yet I experience sleepiness in my class sometimes and it's embarrassing but I always struggle to overcome..my worst and disgusting experience was to discover my students went for lunch while i'm still sleeping in class..haha..


Don't notice that I feel any more sleepy than before diagnosis, but it does seem to be a problem that affects many younger people with an MPN. Only suggestion is for you to try and get as much normal sleep as you can, and if possible, to take exercise that may help to perk you up.
Never had students sneaking out to lunch while I snoozed, but did sometimes have ones who snored in my lectures!


Hi I was diagnosed with ET one year ago, I'm also Jak2 positive. I really didn't think that much of it at first and was advised to take aspirin. However in the last couple of months I have been having awful headaches, dizzy spells and muscle spasms. I am physically very fit and go to the gym every day, but I'm finding it increasingly more difficult as I havn't got the energy and the muscle spasms make exercise more difficult. I also feel that because I look well I dont talk about ET, I feel people would just see me as a moaner! In fact I never speak about it at all. I really just want to enjoy my life and not be bothered by ET.
Has anyone else experienced any if these symtoms?



Hi, I have just been diagnosed today, although I have had abnormal blood counts since 1989 when I was also diagnosed with another rare condition Bechet's disease! Its still whizzing around in my head..... I had a big bleed into my right eye on November and went blind..... I've since had an op and although its still blurry, at least I can see lol. I am on clopidogrel, I can't go on aspirin because of the Bechet's! Their gonna see what caused the bleed and then decide if I have to have hydroxyurea stuff, if that's spelt right lol. Anyway , thanx for reading my email, and I hope you were well.


Sorry to read of the lack of understanding among people about the effects of your MPN. It's difficult to know how much detail to give about our condition, but might be worth your while reading the section in the LLR booklet about MPNs which talks about this topic. I find that being quite upfront is best, saying I've got a form of blood cancer and am taking daily chemotherapy. Some people shy away from you at the mention of cancer, but the majority seem to appreciate that what we have can affect our everyday life to a greater or lesser extent.


Hi am 54 and was told I had et 12 months ago my platlet count is 1300 my hero doc says he will have to treat me soon I also have ms and I have terrible throbbing in my hands and feet but don't know if it is my Ms / et .been in a lot of pain does anyone else get pain with et .


My ET does not result in any pain, but maybe I'm just lucky. There does seem to be a very wide spectrum of severity of symptoms; fatigue seems to be the one which causes difficulties for the most people. The most obvious side-effects of hydroxycarbamide treatment are those associated with those cells in the body which are rapidly dividing, such as those producing nails, leaving them brittle and hair follicles, leading to hair thinning. These are not too serious, but obviously, other metabolic processes may be affected causing more severe symptoms. It's another case where talking and listening to your haematologist is vital.