I was wondering if there is anyone here who choose not to have treatment for their Myeloproliferative neoplasms (MPN).
I am end 40s, have got Essential thrombocythemia (ET) myself and next to it a rare muscle disease. At the moment I am only on aspirin for the Essential thrombocythemia (ET), but I am not sure if I want to have any other treatment if this would be necessary.
Oh @Folkert I am so glad that you have found our support forum.
I hope others will be able to share their experiences for you.
I reckon it is always a dilemma when having to consider unknowns.
You also show what unique complex beings we are and perhaps you might need to ensure that any decision does not interact with your other condition.
It has to be the right decision for you and nobody else, I don’t envy you and there is also quality of life in the mix
The Blood Cancer UK support services are available for you on 0808 2080 888
Please do let us know how you get on.
Be very kind to and look after yourself
Hello there @Folkert, welcome to the forum, fellow Myeloproliferative neoplasms (MPN) survivor. I’m so sorry to read you were diagnosed with Essential thrombocythemia (ET).
Sounds like, so far, aspirin has been your only treatment. This would be my ideal treatment, but alas, our blood cells can tend to do their own thing when we live with Myeloproliferative neoplasms (MPN) and we often end up needing additional treatments like phlebotomy and cytoreductive medicines like hydroxyurea or interferon. Sure you’ve read about typical treatments.
Don’t know if this would be of interest but the lovely specialist Blood Cancer UK nurses offer us space in the forum to ask about various aspects of our blood disorders. Recently we spoke of whether typical treatments for Myeloproliferative neoplasms (MPN) are considered active monitoring AKA watch and wait: Active Monitoring (watch and wait) - Ask the Nurses - #6 by Duncan
The way my haematologist put it to me is that taking aspirin alongside hydroxyurea will, respectively, thin my blood and decrease the overproduction of blood cells, decreasing my need for phlebotomy and minimising clotting risk. Phlebotomy alone can lead to anaemia which can bring its own physical effects. So the way I understand treatment for Myeloproliferative neoplasms (MPN) is that we each find an individual balance between thinning our blood, slowing blood cell proliferation, and avoiding/tolerating anaemic and other side effects.
But really I defer to the expertise of my haematologist and phlebotomists. No matter what horror stories are out there about hydroxyurea, for example, I’ve come to trust my specialists. In my experience they have tailored my treatments to how my body is responding, which can obviously vary month to month.
Most months I don’t need phlebotomy as the hydroxyurea does a good enough job at slowing the blood cell overproduction. The aspirin keeps my blood nice and thin so I don’t have to worry so much about clotting risks. And in months where my haematocrit is higher than 45 % then having a pint of blood drained seems pretty simple.
So I’d agree with @Erica that your treatment has to be your decision. I’d say be open to trying treatments your specialists suggest as they’ll be basing it on decades of research and not just prescribing stuff willy-nilly.
Do let us know how you get on and what you decide @Folkert. Maybe have a look around the forum for others with a similar dilemma.
Hi @Folkert and welcome to the forum.
It’s so hard making decisions around treatment isn’t it and I don’t know what the answer is.
All you can do is keep yourself informed and write down all questions you have so that when you need to, you are ready to ask them.
Please take good care of yourself and keep us updated.
Folkert. I feel like not taking the treatment. I’m 98 and I think thats a bit too old to start something which is going on for the rest of your life.. I should start tablets tomorrow but am so undecided. I want a peaceful last few months I’ve got and let nature take its cause.
I’ve got Essential thrombocythemia (ET). Too.
Barbara.1.
Hi @Barbara1 I responded to your original post.
It is your decision, but perhaps do not agree to anything you are not happy with.
I noted your wording ‘I want a peaceful last few months I’ve got and let nature take its cause’
However as I keep on saying it is solely your decision.
I don’t envy you your decision.
Be ever so kind to yourself
I rather think I would feel as you do were I 98! How magnificent that you are on line managing to get onto the Blood Cancer Forum! My next door neighbour until last year was internet savvy in her 90s. She waited until she was 100 before she decided she didn’t want any treatment if she became ill…and was a great inspiration to me, and my grand daughter. She had cava in the fridge for her family to celebrate when the time came! I was privileged to share that with the family…the cava and the reminiscences!
I waited for 6 months before I choose to have treatment for Essential thrombocythemia (ET). I had things I was doing, and didn’t want to have to cope with possible side effects while doing them…but the numbers did keep going up, so I decided I had to bite the bullet. I was in my mid 70s at the time I was diagnosed.
Although I have experienced some mild side effects, none has been enough to prevent me from living life to the full, for the time being.
All the best whatever you do.