Hello all,only just joined the forum…I was diagnosed with Myeloproliferative disorder just over 12 months ago after suffering a blood clot which traveled down my left leg and blocked the artery’s to my toes and was classed as having pre gangrene which luckily they managed to save all my toes after having 3 weeks of treatment.
They discovered that my platelet count was nearly 1000 so I’ve been on Hydroxycarabide since February 2024 and will be for the rest of my life,I have 3 monthly check ups where my count is now 434 which has risen from the previous check up 3 months ago so now I have to double up on my medication at the weekends to try and get it lower.
I have been of work for 2 1/2 months due to fatigue and brain fog which I’ve never had before and isn’t very pleasant and is affecting my life massively.Work has been very understanding at the moment and I really don’t know if I will be able to go back to doing a 40 hour week as it’s a very manual job.
Many thanks in advance to whom may reply or even look at what I’ve posted…Shaun.
Hello there @Shaun, welcome to the forum! I’m really glad you found it, there are a lot of us here who live well with Myeloproliferative neoplasms (MPN), although I am really sorry to read you were diagnosed at all. Thank goodness your toes were saved, that sounds truly horrible to have experienced.
I’m not a doctor, but it seems like your treatment is being adapted to how your body is reacting to the hydroxycarbamide AKA hydroxyurea. This was my experience too since diagnosis with an Myeloproliferative neoplasms (MPN) called Polycythaemia vera (PV). My hydroxyurea dosage was changed until my blood cell numbers balanced out and I no longer seem to need phlebotomy.
Another Myeloproliferative neoplasms (MPN) is Essential thrombocythemia (ET). I wonder if you know which Myeloproliferative neoplasms (MPN) you were diagnosed with? Myeloproliferative neoplasms (MPN) are a family of rare related blood cancers and although similar they can affect us very individually so it’s helpful to know what we’re living with and what potential side effects to look out for.
Perhaps this information about Myeloproliferative neoplasms (MPN) will be helpful: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
Sadly the fatigue you’ve described is very common with Myeloproliferative neoplasms (MPN), blood cancers generally, and certainly when taking chemotherapy like hydroxyurea. If I may reassure you from my place a couple years out from diagnosis about that fatigue, it can settle down and pre-diagnosis energy levels can return, using myself as a case study of 1. I know other forum members who’ve had much less energetic experiences of hydroxyurea and the other cytoreductive medicines we tend to be prescribed.
Anyway, I’m sure that’s enough to be thinking about! Do please let us know how you get on, and maybe have a look around the forum as you’ll see Myeloproliferative neoplasms (MPN) survivors are pretty active here and will hopefully be able to answer all sorts of queries you might have. Glad you found the forum @Shaun.
Good evening @Shaun, and welcome to the Forum. I’m sorry that you are now a member of this club, although everyone is very welcoming on it!
My own story is that I was diagnosed with Essential thrombocythemia (ET) a little over 7 years ago having, very foolishly, suffered a heart attack 6 months prior to that, so I guess that makes me one of the lucky ones as without the diagnosis I’d probably not be here now. At diagnosis my platelet count was over 1200 but is now varying between 450 and 600 or thereabouts. I was on Pegasys injections from the beginning, in various dosages and frequency, but came off of that treatment in December 20204 as it had “stopped working for me” in the words of my consultant. I started on Hydroxycarbamide before Christmas with the dose increasing from 7 to 8 then up to 9 capsules per week. 9 per week caused me to have a number of unpleasant side effects and my dose was reduced, after speaking with the medical team at the hospital, to 5 per week PLUS a Besremi injection every 4 weeks.
I will know how well, or otherwise, this combination of drugs is for me when I see the consultant in early June.
Now then, I totally understand your fatigue worries as I too suffer from such debilitating levels of fatigue almost all of the time and I also work full-time (and more!) as a truck driver/crane operator. Work are okay-ish much of the time but family and good friends are supportive.
Things to remember include being kind to yourself, not worrying too much about it all (it won’t make any positive difference), taking care, staying safe and keeping on smiling.
Best wishes,
Jimbo165
Hi @Shaun welcome to our forum
@Duncan has given you some good information and I will just add the Blood Cancer UK details on money and work
Blood cancer: money and work | Blood Cancer UK
Perhaps just try to take it a day at a time and don’t rush into decisions about work, look at all your options first.
The Blood Cancer UK support line is there for you on 0808 2080 888
In the meantime just be very kind to yourself and look after yourself..
Hello Shaun - I’m glad you have posted to let us know how things are going for you and you can touch base with other Myeloproliferative neoplasms (MPN) patients. I am one of them - diagnosed with Essential thrombocythemia (ET) 19 years ago! I had 13 years on Hydroxy then changed to Pegasys interferon for five as the Hydroxy stopped working but last year went back to Hydroxy again and it’s working fine again. I say all that just to let you know treatments vary, our reactions to them, how they work at any time and side effects too. It’s early days for you both having the diagnosis and starting treatment, do know it’s quite normal to take some time to adjust all round and you will and how work can fit into that and any adjustments that are needed for employment, something employers are duty bound to assist with 
I see you are having the “usual” three monthly checks, tends to be what Myeloproliferative neoplasms (MPN) patients have and it’s really normal for platelet counts to vary go up abit then down abit and for our doses to be tweaked up and down accordingly, do know that’s the way the treatment is and not a sign things are any worse for your condition, doses vary greatly between patients too some just a few capsules a week some a few a day, very individual response to the meds - in fact when I was on Hydroxy before I always needed very high doses 3 or 4 capsules a day yet this time round I’m being well controlled so far on one or two capsules a day 
I know fatigue is hard to deal with both from disease and the treatments, it takes time to find what it’s possible to do and some of the bits that need to be adjusted etc etc. and you will in due course. Do access the Myeloproliferative neoplasms (MPN) charity Myeloproliferative neoplasms (MPN) Voice if you haven’t already - especially helpful are many of their online videos and talks - just now they have one from Dr Kathleen McHugh that you would find helpful - quickest way to access it is on the public Myeloproliferative neoplasms (MPN) Voice Facebook page it’s the first item on there. Keep us posted how you get on