Hello, I am at the start of my journey having been diagnosed with ET, (CalcR), on 15th August this year. I commenced hydroxycarbamide 500mgs daily on 17th September. My first bloods were done on 24th October with my 1s f/u appt with the haematologist consultant today.
My platelets have fallen very little, 600 down to 574. My consultant is keeping me on the same dose but my main concern is that my next blood tests and follow up will be in 4 months time. My understanding is that until the dose of hydroxycarbamide is titrated and stabilised, blood tests should be more often… but I may be mistaken. Could you kind people advise me, please.
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Evofan
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My hematologist followed the standard protocol of every two weeks during dose titration until hematologic target is stable. After that it can drop back in steps to every three months or so. Along the way, a CMP should also be routinely done to monitor kidney and liver function.
Hi .. I am same as you .. initially I had blood tests monthly and saw the haematologist bi monthly. Maybe for a year .. I was having monthly Vennesections too . Judy in last few months have gone to 6 weekly blood tests and appointment ever 3 month ., when she repeats my meds . It has taken most of the year and a half with tweaks to get where I am today . We are all different I guess and I live in New Zealand so maybe different protocols ???
Thank you for replying. It does help me to understand that everyone has a different experience but again you seem to confirm that a 4 month gap at this very early stage is not usual.
Hunter, thank you for replying. From reading past posts I see you have a wealth of experience gained over time so thank you for your input, much appreciated. Yes I can maybe understand a gap of this length once the haematologist is happy with my platelet level and my dose of hydroxycarbamide has been titrated accordingly but I do feel after just 1 appointment there shouldn’t be such a long gap and considering my platelets have not really dropped. Thank you.
agree with you. Starting out should be more frequent. I started out with very high platelets. Immediately liver enzymes climbed to 3 times normal. The HU helped slowly lower platelets but for nasty side effects and chose to stop taking it. Same with anagrelide. Been on peg for 18 months. Going good and getting closer to stable. Hematology says until achieving my stable state, blood tests will continue weekly. Blood tests have given critical insight to my ET journey. Also have hypothyroid and anemia not caused by ET but need to be watched because ET and peg can interfere. Good luck.
Thank you so much, you have confirmed my suspicion that I should be having more frequent blood tests and alterations to my hydroxycarbamide dose if indicated, certainly at this very early stage. It’s only by reading the posts on here that I am even aware enough to question that this doesn’t seem to be the norm. Thank you, just what to do about it now is the question I need to ask myself.
Your Specialist has a responsibility initiating treatment, which would be close monitoring in the early stages...
Do you have a CNS? If so, I would contact him/her to discuss your relevant concerns. You could contact your haematologist too if possible. If all else fails, contact your GP to see if they can monitor your bloods.
I am on low dose hydrea (8+ years), it suits me just fine. However, when treatment was initiated I was closely monitored, and the dose titrated according to blood results until a stable dose was found. Had I continued at the initiated 500mg dose seven days a week my counts would have gone far too low, hence the importance of close monitoring. The dose that suited me was and still is 500 mg five days a week.
Yes, Maz also suggested I contact my CNS so that seems to be the 1st step. I’m under a haematologist who is not an MPN specialist, would this be more helpful? I find this difficult as I’m just beginning to learn about ET so to question a haematologist with my limited knowledge seems a little overwhelming if not insulting but on the other hand it is my future health that’s at stake… so confusing. Thank you for replying, I wish you well..
The majority of us do not initially understand our diagnosis, treatment or implications of either. It’s only with time, education and professional sites like this we learn. I certainly knew nothing, and I am still learning!
You can see from all the replies you’ve had there are questions to be answered. I understand the conflict you feel, we tend to put Specialists on a pedestal. That’s where the CNS is helpful. Maybe say you’re not comfortable waiting four months at this early stage in treatment, and ask them to clarify what their protocol is for ‘close monitoring’ when initiating treatment with Hydrea, and take the discussion from there.
An MPN Specialist is always a good idea, but having said that, there are some great haematologists too. I would see how things pan out with answers to your ‘questions’ and your confidence in their care going forward.
hello Evofan, welcome to our forum. The time between blood tests and follow-up appointments does vary. Hopefully you have the contact details for the haematology clinical nurse specialist (CNS) in your hospital, you can give her/him a call and discuss this with them, you can get lots of advice and support from your CNS so worth checking that you have their details.
It can be very daunting when you are newly diagnosed with ET, there is such a lot to understand. I hope that the information on our website is helping you, there is lots of information on there about ET, the different medications used to treat it, ways to cope with symptoms and lots more.
It might help you to have a buddy to talk to, a buddy is someone who has the same MPN as you and takes the same medication, and can give you support and advice from the perspective of someone who really understands what it is like to live with ET on a daily basis. Contact is by email, phone or a combination of both, whichever suits you and the buddy, and how often you contact each other can be sorted out between you, some people find that they feel better after speaking/emailing with their buddy a couple of times, others need more contact, it is all up to you and how you are feeling, if you feel you would like to have a buddy then please let me know and I can send you the buddy guidelines which set out the boundaries of how a buddy can help and support you, and also a request a buddy form. Please note that in order to be put in touch with a buddy you will need to be registered on our mailing list, this is part of GDPR and means that you will also receive our news and update emails we send out about patients' forums; drug trials/surveys; fundraising news and general updates. Please email me at buddies@mpnvoice.org.uk
We also have a series of relaxation podcasts you can download, these were produced for people with MPNs by Paul who is a psychologist and hypnotherapist and is also a MPN patient himself, diagnosed with MF. mpnvoice.org.uk/coronavirus...
Our in-person patients’ forums are a great way to meet other people with MPNs, to share experiences, and to hear the latest news from the haematologists and specialist nurses who attend to give talks about the latest trials/studies; new medications; ways to manage symptoms, we also have talks from patients who share their MPN journey.
We also hold online forums throughout the year, with each one focussing on a specific topic, i.e. ET; PV; MF; young people with MPNs; stem cell transplants; MPNs and the menopause. Live streaming the online forums enables our global MPN Voice community to 'attend' the forums. All the online forums are recorded are available to view on-demand on our YouTube channel youtube.com/channel/UC-S_Ic...
We hold in-person forums in various locations around the UK and Ireland every year, details for in-person and online forums in 2024 will be sent out in a mailshot, posted on our social media channels and on our website mpnvoice.org.uk/get-involve...
If you would like to receive news and updates from us please let me know and I can register you on the mailing list, you can email me at info@mpnvoice.org.uk
Maz, what a comprehensive reply and one which is full of very helpful advice. I do have a number for a CNS so I will give them a call once I’ve settled in my mind all that I was uneasy with following my 1st consultation after commencing hydroxycarbamide. Thank you for this suggestion
I’m already finding this site invaluable and it’s only through reading what everyone has posted about their own experience that I’m beginning to scratch the steep learning curve that I’m now on. So a big thank you to all that set up this forum and to everyone that has contributed to it.
Thank you for the many links, I will explore them all. The in person and online forums sound really informative so yes I would like to attend these to help with my development and understanding of MPNs and ET in particular. I will email you so that I can receive news and updates via the mailing list.
Thank you for such a helpful reply, I’m very grateful.
When I was originally diagnosed with PV I had several fortnightly appointments as my blood numbers varied hugely and titration was difficult. I moved to monthly then 3 monthly as my blood began to settle. Over the years, frequency of appointments have been subject to blood numbers and currently I am in 2 monthly appointments. I do feel my blood is well monitored.
I can completely understand your progression over time with your blood tests, seems very logical. Thank you for replying, definitely gives me food for thought.
Hi I recently started 500mg of hydrea in September to lower my platelets. My platelets were a lot higher and I can see they have come down a bit. I was back to see them 2 weeks after I started and my dose was increased. I was then back another 2 weeks later and became my bloodwork was not normal I am back on Monday after 3 weeks. I have been told that when they get the level of medication right I will only need to be back every 3 months x
Thank you so much for this. So I started in September also and have just been seen the once and now not for another 4 months. I just feel the more replies I read just really confirms that my management can’t be right.
Mine started weekly, (ET JAK2) then biweekly for a few months then went to monthly until it stabilized. 4 months seems like a long time between tests to figure out the dosage. It would be dangerous if your platelets fell too low.
Thank you for replying. I think I need to call and discuss with my CNS my query and the replies that I’ve had and to ask why my management is so different.
I agree, that is an awfully long gap between blood checks. I started hydrea 2months ago and when I started for the first 4 weeks it was weekly bloods and weekly phonecall appointments. Then after 4 weeks I seen them in person and they were happy to leave me 4 weeks (next week) before needing bloods again and I will also see them in person.
Thank you, much appreciated, just more confirmation that I need to speak to my CNS. Also thinking of asking my GP, who I’m seeing on Monday, to refer me to a MPN specialist for a 2nd opinion.
I feel compelled to add that platelets being in the 500-600 range is not really all that high, and that may be the reason for your hematologist not to be so concerned to get you back so quickly. Just my 2 cents.
Hi Evofan, I'm in the UK and I waited from may 2018 to the Oct before my platelet result, after starting hydroxy. Your platelets are not really high, I'm happy and so is the haematologist if they hover round the 500 to 550 mark. As long as you feel well I wouldn't worry, I did to begin with don't really think about it much now, just drink plenty of water. Good luck.
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