Hi everyone,
I have had ET for over 10 years and my platelets have never gone above 600. My recent bloodworks places them at 475 and everything else is fine. I am 60 this year and otherwise healthy. My consultant is suggesting that I start Hydroxycarbamide due to the risk posed by my age only.
I would be really grateful for any insights or advice and any experiences of taking Hydroxycarbamideand how to keep well whilst on it.
Thank you to you all for being there.
Stay safe
Hi Cassandra, I've been on hydroxycarbamide for about 2 years now. I'm the same age as you and so considered high risk. A few years ago I suffered a PE post surgery, but they can't be certain it was due to the op or due to, at the time, undiagnosed ET.I do have some side effects - extreme fatigue - I'm not sure if this is the drug or the condition, itchy skin mainly on my upper arms and aching lower limbs. Again these might be down to the condition not the drug. I also have sporadic constipation and occasional dizziness. In the main, it's easily manageable, regular exercise is the key to counteract the fatigue, which for me is fairly easy as I'm an avid runner.
I hope all this helps
Best wishes Ian
Thank you so much for finding the time to reply to me. I will bear in mind what you say about the side effects - it is so useful to know how other people find taking it. I am sure you are right about exercise - going to stick at this. Thanks again and stay safe
I was put on HU this January (age 61 ) when diagnosed with ET JAK 2 positve after years of high platelet levels.
My numbers were in the high 600's and had risen dramatically in the few weeks of initial concern to actual diagnosis. I was given the option of aspirin or HU and decided to go with HU. I started on 500 mg/day which worked well for the first month, but now have been put on 1000 mg/day. The 500 dose I tolerated quite well, the 1000 I am starting to see some brain fog and constipation creep in. But overall HU has improved my quality of life.
However, if I were in your shoes, and if I hadn't been taking anything at all for ET, I would probably ask my doctor about using aspirin (which, according to my doctor, also lowers platelet levels) rather than go into HU just because of landing in the high risk age group.
HU is a carcinogen in and of itself so if platelets are under control without it, and there is no other underlying concern I would see no reason to go on it. But this is a discussion to go through with your doctor.
My doctor actually gave me the option of using just aspirin, but I opted against it because of the trajectory of the platelet growth rather than the age factor. And that I took aspirin for pain, and the platelets were still high.
Thanks so much for replying and the note about the side effects. I am not sure quite yest whether to ask to put off the treatment for a bit as my age is the only factor so this information is really useful. Thanks so much - stay safe
And just for more information, I have been on the higher dose for three weeks now and the side effects have pretty much disappeared.
Are you displaying any symptoms such as headaches ? Are all other bloods in range?
Only start meds if you really feel it’s best for you not just cos of age .
Platelets are good . Have you taken any steps to get them so low ?
Thank you for replying - I don't have headaches more a bit of fatigue and the cold feet and hands thing. I am taking asprin but nothing else so not sure if I should try and resist the treatment - thanks for your comments they give me more info to consider. Stay safe
I’m 62 and have been on Hydroxy for 3 years and it’s brilliant at keeping the platelet levels at a normal level. It took my body a couple of weeks to get used to it at first (brain fog!) and since then I wouldn’t know I’m on it. We are high risk of stroke etc after 60, far better to take Hydroxy. Good luck. Keep us updated how you get on. Suzy
Thanks so much for the reply and for the positive comments - my consultant thinks also that age puts me at higher risk. I am so glad that you are tolerating it so well and you seem so positive and well it was lovely to hear from you. I will keep you in mind! Thanks loads
Hello Cassandra...it sounds as though you are coping well ....475 is a good platelet read.... anything under 500 is good ....
It sounds as though your heamo does not want to take any chances...
But I think (from information) I have gathered re : this condition .... you probably are fine as you are ....
Just monitoring you & staying with aspirin works for many with this condition... Don’t believe age plays a big role really .... if you are good as you are why take chemo ?... coz that what it is ....
Make sure to discuss this ...don’t be just another who has to take hydroxycarbomide.... when perhaps you Can manage without it ...Lainie 🙏x
Hi,
You put your finger right on the problem - you don't know what to do for the best and it is hard to go against my consultant who is lovely but probably playing it safe - you give me plenty to think about! Thanks loads and stay safe
Hi,I'm 10 years older but with the same diagnosis and I have been on Hydroxycarbamide for almost 4 years. Like you I was classed as high risk because of age. Hydroxy took a few weeks / months to get fully used to, but now I don't notice them at all. In the first year or two I did get fatigue and aching bones (but nothing I couldn't cope with) but all of that has now gone as my system has normalised hydroxy.
About 1 year in, I had a TIA which really brought home to me why I needed hydroxy to control platelets, so now I see it as a friend rather than an encumbrance.
Yes hydroxycarbamide is a powerful drug, and the thought of taking mild chemo can be a bit scary at first, but the bottom line is that we have a blood cancer and we need to recognise that and respond accordingly.
I'm sure it will work out fine, and we are all here to offer support if you need it
John
Hiya,
I am sure you are right and you must have been glad to have the treatment with the TIA and thinking about it afterwards - I hope you are well now. Glad it settled down as this gives me hope that I could cope with it. Look after yourself and stay safe - thanks
The trigger for my diagnosis of ET Jak2+ was CVST (Yes... the very rare thrombosis in the news wrongly associated to the AZ vaccine). An interesting aspect of my bloods was that my platelet count at diagnosis was around 550 and at all previous blood tests taken over the preceding 10 years they were between 450 and 600 and had gone undiagnosed. My haematologist commented that the actual count is only part of the picture and the size, shape and 'stickiness' of them are another factors. Your predicted 'risk' of thrombosis changes dramatically in the eyes of the medical professionals after you have a thrombotic event... Obviously better to mitigate it beforehand.... My HU side effects are mostly itching and some days I'm puffed oot.. not every day.
Thanks loads for finding the time to get in touch - I hope you continue to be well. I know what you mean about prevention and it is really interesting to know that the niumber of platelets are not the whole picture - I will bare this in mind. Look after yourself and thanks
You will likely hear a range of responses regarding hydroxycarbamide. Some benefit from it and do not have trouble tolerating it. Others, myself included, do not tolerate it. We are each unique in the presentation of our MPN and how we respond to the treatment options. Do be aware that there are other options for cytoreduction if you decide to pursue that path of treatment.
A few factoids to consider are:
1. The recommendation to initiate cytoreduction at age 60 is based on statistical projections of risk based on large groups of patients with MPNs. This may or may not reflect your individual risk based on how your body has aged. We do not all age the same.
2. 65 is the new 60. Some treatment protocols have shifted the definition of "high risk" to 65.
3. There are actually two first-line medications used to treat ET. Hydroxycarbamide (HU) and PEGylated Interferon (PEG-IFN). Formularies tend to prefer HU because it is much cheaper. PEG-IFN is preferred for younger patients (age<60) because of the intrinsic risks of long-term use (e.g. increased risk of leukemic progression) and because HU is teratogenic and can cause oligospermia/azoospermia. However, for older patients needing cytoreduction, there is still a choice between HU and PEG-IFN to be made. It is your prerogative to opt for PEG-IFN if you prefer that treatment option.
4. If you do decide to opt for HU, there are some things you will need to understand regarding its use. It is a toxin and there are handling precautions needed to prevent exposing others to it. If you are still sexually active then it is recommended that the male partner use a condom. It is very important to stay well hydrated to mitigate the toxic effects of HU. Very important to use sunscreen/reduce exposure to sun to reduce risk of dermal carcinomas.
Please do be sure to educate yourself about your options and pursue the treatment plan you believe to be best for you. Here a few resources you may find useful.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
drugs.com/monograph/hydroxy...
ethrombo.blogspot.com/2017/...
targetedonc.com/view/expert...
Hope that helps. All the best to you as you move forward on this journey.
Hi,
Thank you so much for the pointers, I guess you are right that it suits some people and not others: perhaps this needs trial and error and I don't want to feel worse as mostly I am well . I do have the fatigue and the cold hands and feet and night sweats so it might help with this or it might not. Thanks so much for all the articles - I feel much better if I have as much information as possible.
Thanks again for finding the time to do this , I really appreciate it. Look after yourself
Hi Cassandra, like you i have recently been diagnosed. I have ET. I have struggled with whether to take HU. I am 64 and my consultant agrees that as I am very active, not overweight or a smoker, I can probably stay off the chemo for a while longer. This gives me time to find out more. I am very active about keeping my diet good and there is a lot of help on this site to figure out more options. I hope this helps.
Thanks loads for this - I agree and whilst I don't know what to do for the best regarding the treatment - I am absolutely commited to taking plenty of exercise, eating well and trying to look after the things I can look after.
Thanks again and stay safe
Hi Cassandra61, I was diagnosed about 3 1/2 years ago and have been taking Aspirin daily. I just turned 65 and will be starting on HU next week at my next hematology visit. The reason she wants to start me on this medication is because my platelets have been steadily rising the past 6 months, not because of my age specifically. My hematologist is pragmatic in her decisions which I appreciate. I agree with others that it's better to hold off on the HU if possible. Please remember that you and your doctor are a team and you have a say in the decision. Good luck.
Thanks again and good luck to you as you start Hydroxycarbamide - I would be so interested to know how you get on if you have time to post anything.
Take care
Thank you so much. I will keep you posted.
Hi Cassandra,I'm 60 ET diagnosed 5 years ago. My platelet counts are relatively stable around 500 to 600, I have no other symptoms of note. I've been on Aspirin since diagnosis and monitored every 6 months by my haematologist. He will only recommend HU if I am consistently over 600. As I am triple negative ET and symptom less I am happy to go with that for now.
Sue
Hi , good to hear from you and so glad that you are staying well - I am still not sure what to do but it is so good to hear from everyone
Im not sure what to say about Hydroxycarbamide. I have had ET since since 1992 and there was not enough information in those days. I started on interferon for about 9 years and aspirin for about 6 years. When I was 61 my platelets went really high and I was on Hydroxycarbamide until 2018 when I was changed to Anagrelide (after 4 months my platelets went sky high and I had a heart attack with 2 stents fitted). I am back on three Hydroxycarbamide now (1500) and platelets are up and down, at the moment quite normal. I would like to think Hydroxycarbamide are doing me good!! Fingers crossed.
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