I just passed 60 years, and I’m in great shape and leading a healthy and active lifestyle. I have a chronic state of high blood platelets (around 650,000 rather than max 450,000), at least since 2015. My Doctor now prescribed me Hydroxycarbamide (alongside aspirin 75 mg) to avoid risk of thrombosis. This medicine is pure poison and I’d rather take only the aspirin. I’m also looking for any natural substance to help. Any ideas or opinions would be appreciated.
Taking Hydroxycarbamide?…: I just passed 60 years... - MPN Voice
Taking Hydroxycarbamide?…
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Holden65
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Without knowing your full health history and potential thrombotic risk it’s not so easy to comment. However assuming you are not high thrombotic risk 650 isn’t very high for platelets, most expert haems wouldn’t treat platelets unless well over 1 million. Similarly this idea that as soon as you turn 60 you are higher risk and hence needs meds is perhaps questionable because one can be a very fit/slim/healthy 60 or more compared to someone who is not healthy at a much younger age. If your not at peace with your docs plan prob wise to get second option ideally from MPN expert.
I agree with Ainslie.
Get another opinion. It’s your decision when and if to start meds. Be well informed ,
I would request 6 weekly blood test to keep a good eye on platelets. They can fluctuate by the hour, so no need to worry about slight increases , unles upward trend.
Have a look at supplements like Curcumin, Rishi or turkey tail mushrooms. CBD oil ..
Diet can be helpful in lowering inflammation. Mediterranean recommended.
Stress effects our physical health. So chi gong , yoga meditation are great .
Having an ongoing condition is challenging..!,!!
Ps . If you can afford to see a holistic practitioner , functional dr. It’s worth it .
why? Our bone marrow is producing too many platelets. You either reduce them or choose not to !
I wasn't clear enough
Hydroxycarbamide is indeed a very strong drug.
We need to be ready to take it without resentment and fear .
It took me two years . In that time I tried my best to lower platelets PLUS work on a healthy attitude of
Accepting the things we cannot change
I still take some natural remedies that support my system
Hope that's clearer ?
I think it would be good to explore alternatives, and do try to get referred to an MPN specialist if you haven't already. Find out why the doctor believes cytoreduction is needed.
However, I think you would be unwise to dismiss Hydroxycarbamide as "pure poison." Many people thrive on it. Personally it suited me well.
I agree with all of the above, particularly with getting a second opinion if you haven’t seen a mpn specialist.
Being fit and healthy isn’t necessarily a barrier to stroke and thrombosis and some patients, not just over 60s, only find they have an mpn after the event.
Personally I disliked the risk of a thrombotic event and it’s possible effects rather more than taking hydroxycarbamide.
It seems your PLT has been fairly stable if somewhat high, for a long time. That is a good start. There are many posts here about PLT levels, and studies *not* showing clear risk for moderately raised levels, as ainslie notes here. If yours are rising fast and still rising that could be different.
You should ask Dr what the evidence based concern is on your PLT level.
I am in a similar position they want me to start at 55 ! I will do everything in my power to avoid it, your platelets are same as mine too. Cut out refined sugar completely and eat anti inflammatory foods, fish walnuts berries etc … you can’t get lots of information on line x
Hi, I also agree with all of the above comments. I had higher platelets 5 years on from you and started Hydrea as they call it. It truly has no effect on my wellbeing, lifestyle or anything at all. I certainly was in state of shock at first having to take it but perhaps wrongly, feel it is a good stopper to anything thrombotic. Been on this and Clopydogrel 6 years now. All the best and you have found a great site for contact and ideas.
Inspiring response - thank you. Makes me feel better just reading it. Taking that first tablet was a big deal for me - and 11 days in, am still feeling anxious. But your reply makes me feel positive and hopeful.
I agree with most of the comments above that you should perhaps get a second opinion from an MPN specialist. The level of 650, holding steady for years, looks pretty good to me along with your stated excellent condition otherwise. Your aspirin anticoagulant is also helpful. With the possible exception of N-acetyl-cysteine, there is no solid evidence to suggest supplements are useful for your particular need. The hydroxycarbamide for most of us is something we can tolerate, but it is a poison, and it is likely to have some detrimental effect on your red blood cell and white blood cell levels. I empathize with your hesitancy to start taking the hydroxyurea.
Medication or possibility of a strokeStroke statics
1/3 die
1/3 survive and have a major disability
1/3 live a normal life
Plain and simple, I have never seen those statistics before. Eye opening. I am still in denial that a stroke is a possibility.
I was too until I had a TIA, then my opinion changed magically overnight. I now see hydroxy and clopidogrel as friends.
Haha plays havoc with health insurance !
Just imagine being paralysed after a stroke. Having no bowel control and then having to wait for someone to realise what’s happened because you have lost your speech. 🙄I saw it in hospital whilst recovering from mine.
well that is what high platelet levels make more likely !
I haven’t seen those stats before, what would be useful to add to that is what is the stats for how many with MPN post diagnosis actually have a stroke especially if they keep there Hct and lifestyle under control. I’ve been around MPN forums for 12 years and haven’t noticed much mention of strokes. Good discussion to have with a MPN specialist.
I had a stroke ( unrelated to my ET) in 2005 aged 50 . I googled then. I made a full recovery.
In addition I was also told that a stroke and heart attack can be similar. The heart attack and stroke can be because of a blood clot. The stroke can be caused by a minute clot that has managed to pass without difficulty through the heart but not through the tiny blood vessels feeding the brain.
The side effects of that specific medicine can be quite horrific as well. Including high probability (1:10 or higher) of skin cancer according to the manufacture leaflet. So I’m all for it if the chance for stroke is real. But not if the prescribing doctor suffers from hysteria and doesn’t care much about side effects.
I have been on 500mg daily of Hydroxyurea for a year now, no side effects. I had 2 Basel cell cancers removed this year( had them for awhile)but now I have to spot treat with the chemo cream, truly wicked stuff. Wear sunscreen when taking Hydroxyurea. .
Is this data from MPN studies?
For PLT of the top post here, various posts have discussed data pointing to moderately high PLT not being a risk for thrombotic complications. In contrast untreated high HCT and WBC have been more implicated.
Something else to look into are other forms of medication too like pegysus (interferon) which I take because, like you I couldn’t face taking hydroxycarbamide. It can also sometimes put us in recession which is a lovely thought. You have to ask for it though if you are in uk as hydroxy offered as first choice and is a lot cheaper than hydroxy.
Didn’t know Peg can sometimes put us into recession🤗I do hope that happens to me before my 6 week New Zealand and Australian trip.
Yes it can. My haematologist told me but I think it’s only rarely but it provides hope. Have a super trip. Sounds like a real adventure
Thank you I’m now only taking Peg every 2 weeks where as when first planned I was on HU then switched to Peg every week. Creating a travelling dilemma.
Haha yes remission🤣
Yes silky me! Remission😂
I guess you mean remission? I believe that interferon is promising in terms of making progression less likely.I didn't have to ask for it; my haematologist was very keen for me to switch from Hydroxycarbamide. Overnight I went from a normal, energetic person to being tired with aching joints.
Yes I meant remission. Sorry to hear peg didn’t work for you.
Oh it worked - I just disliked it.
The cost of PEG can put one into a personal recession!!!
🤣
That's why the NHS is such a wonderful thing!
True as is the wonderful benefits of belonging to the Alaska Native hospital here in Anchorage.
Hi Holden65,
I too really battled with starting Hydroxycarbomide when I reached 60 just over a year ago. My platelets were really not that high and other risk factors low, but as we know the algorithm shows age as a significant risk to thromboembolic event. After much deliberation, advice and many conversations and reassurance from clinical nurse specialist and others, i started on lowest dose, increasing very gradually I am stable on 500mg daily with no discernible side effects. Six months after starting I unexpectedly broke my ankle and was non weight bearing for several months and needed surgery. It was fortunate that I was already on treatment as that event would have been quite high risk. Overall I’m relieved to be on the treatment the obviously would prefer not to need it.
Hope you are able to make the right decision for You.
Best Wishes
I have been taking hydroxy for 12 years. Yes I do get a few side effects like tiredness, constipation and sore mouths but these are sporadic and not severe. If it comes to a choice between the risk of strokes or heart attacks or the side effects, taking hydroxy wins. The only other person that I vaguely know with E T only discovered he had E T after he had a heart attack. Of course everybody is different but this is my experience of hydroxy.
I'm sorry but the idea there is a "natural treatment" that is preferable to a man-made poison gets me very cross. There are natural chemicals (botulinum, various fungi etc) that can kill or harm. The vaccines they made for covid have been game changers yet there are a cohort of people who think they are the work of the devil. Please don't blindly think all "natural" things are good and pharmaceuticals are bad. Apologies for any offence
Well said.
Used properly prescribed by a professional working closely together with us , natural medicine rarely does harm . Not so with conventional. MEDICS would agree. re. Conventional
Prescribing water rarely does harm ... Rarely does good either so absence of harm shouldn't be the only criterion
I know we all have different views on natural medicine .
I'm not trying to persuade or encourage people in any direction.
Water is essential to keep us well. Not a medicine but vital to our health . So does do good .
I agree. There is also the idea that "chemicals" are bad, but literally everything is comprised of chemicals, including our bodies, every "chemical" drug, every vitamin pill, every "natural" remedy.
I agree. If we need blood count control we most likely require "real" medicine. No one likes taking these of course.
Supps (I do take) and diet can help on the margins, but we are not going to get high HCT down etc without meds. There may be a supp that can do it, but such is not yet demonstrated.
As others have already mentioned, getting a second opinion from a MPN Specialist is a very good idea. Here is a link just in case you have not seen it. mpnforum.com/list-hem./
If you are interested in more "natural" interventions then it is wise to consult with a provider who has that expertise. Note that anything that is biologically active enough to help you can also hurt you. And interact with other drugs/supplements. Many docs have little to no expertise in this area. Expert consultation is important. Here is a link to Functional Medicine docs. ifm.org/find-a-practitioner/
Regarding the age based risk assessment, things are changing. Some docs now use age 65 rather than 60. Other docs do not use a strict age criteria as we all age differently. My MPN Specialist told me "65 is the new 35." When I opted to resume cytoreductive therapy to treat PV, it was not because of age 65. It was because of the actual symptoms I was having from the PV and the negative impact of therapeutic phlebotomy.
We all age differently. Age is only one factor used to determine risk of thrombosis. How you have aged and your overall health profile matter too. Note that one of the things that changes as we age is that our response to aspirin changes as well. We are at higher risk for hemorrhage on aspirin once age > 60. That does not mean that we should not take it, just take it with full understanding of the risk/benefit profile. That is the bottom line of the decision about whether to engage in cytoreduction too. You have to evaluate to risk/benefit of your choice of whether or not to engage in cytoreduction.
If you do opt for cytoreduction, there are more choices than hydroxycarbamide. Pegasys is the other recognized first-line treatment option for ET. In addition, there are second-line treatment options, including anagrelide and Jakavi. There is a clinical trial for Bomedemstat underway that looks promising. Besremi (approved for PV) is in clinical trials for ET as well.
At this point, the primary choices are for cytoreduction are either Pegasys or hydroxycarbamide. Here is a bit of information on that.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
You will hear a mix of opinions about both hydroxycarbamide and Pegasys. Some of us tolerate/benefit from one and not the other. I did not tolerate hydroxy and it was ineffective. I experienced toxicity even at very low doses. I have done much better on Pegasys (then later Besremi), Note that I also feel much better and my quality of life is improved on the interferons when compared to using phlebotomy-only.
After careful evaluation of all of your options, you can make the best decision for yourself. All the best making your decision.
You are quite right in describing it as pure poison. My late husband was on that drug andall it did was give him bone marrow cancer.
He was also never given regular blood checks despite being given Warfarin
I'm so sorry that you lost your husband.
However presumably he already had ET or PV already. By bone marrow cancer, I guess you mean that he progressed to Myelofibrosis. If that's the case, it's impossible to know for sure what 'caused" the progression.
Are you jak2 positive? This can strongly influence the decision to start Hydrea.
Can you elaborate on this? I am new to all this and reading up on everything I can. I am not Jak2 positive. My platelets recently went up quite a bit. The doctor wants me to start taking Hydrea and I am scared to death. I am a very active and fit person. I’ve been a fitness instructor for 27 years and work out daily. I realize that doesn’t have anything to do with my platelets, but I am just struggling with all of it. Oh and I am 54. Any input would be great.
I was diagnosed three years ago when 74, and my platelets continued to be high until my last blood test a couple of weeks ago. They had fallen to well within range. I too am not JAC2 and have only been taking aspirin. How long should I expect my platelets to be normal before I can consider myself in remission?
I also have MDS so perhaps I can receive treatment now for that. Reduced platelets has not stopped my blood from being very sticky! I did a home blood test this week for thyroid and the phial of blood was just about solid by the time I had finished!
Have you been checked for the other mutations? Jak2 Exon 12, CALR, MPL, triple negative (no regular ones at all)
I have not replied to this because I am not sure 🤔 I am new to all this and most of the time I don’t know what I’m reading due to all the acronyms. The doctor just said I am Jak2 negative and did not explain. I really hope I can see a different doctor.
Hoping you can find a more caring Dr. You should look for an MPN specialist if possible. There are resources here to help find one. Here is one link that is a good start
Knowing which of those acronyms applies to your condition won't immediately affect the therapy you get, so no worries. But with a specialist you would find out as a normal part of understanding your condition. All of us are entitled to this sort of info..
Yes, according to the prescribing doctor I am. Can you elaborate how this should influence the decision?
Well I'm not a Dr.I assume your diagnosis is ET.
Jak2 positive and >60, usually Dr recommends cytoreduction.
But let me tell you my story.
I am now 74. Seven years ago, I was diagnosed with Elevated PLT,
ET jak2 positive. Dr recommended Hydrea,, said I wouldn't even know
I was taking it. I read the warning labels and refused to take it.
Platelets continued to increase. Last year diagnosis was now PV.
I started the Hydrea, blood counts are now well controlled.
Dr. was correct, I don't even know I am taking it.
I assume your Dr is recommending a low starting dose.
Sure its chemo, but its very mild chemo.
I was over 60 and have peripheral arterial disease (8cm stent in thigh as only 15% blood supply to lower leg) Have had no problems on hydroxy - was already on Clopidogrel after stent. I still regularly walk fairly long distances in later 60s albeit with poles up steep hills.
I am interested in your comment about poles going up steep hills I am ET jak 2 + and an avid walker never even thought about poles to help with steep hills as I live in North Wales this tip is an excellent idea thank you do about 5 mile a day 71 yrs
A lot of people need them for balance and to help their knees coming downhill - but I find them more useful for helping take my, not too excessive weight, uphill ! ( I also overextended the back of a knee in a fall so it helps reduce strain on ligaments & tendons at the back of the knee)The important thing is to wear the wrist straps correctly to transfer the weight. I looked at loads of videos on line to put together the tips which worked best for me ! Buy the lightest you can afford!
My age 65 diagnosis in May 22 came as a shock since it was 3rd cancer dx in 4 years. Taking HU +aspirin daily. Seen by 2 Hemocs, a naturopathic MD. The ND added cod liver oil, fish oil. I too am in great shape, walking 15 miles weekly, playing golf, tending to a large ag property, a healthy non-red meat diet with little to no processed foods for a decade, 1-2 glasses of red wine/day, decades of supplements out the wazoo, normal BMI. One MD said- you’ve been hit by lightening 3 times. On HU, platelets went from 750 to 400 in 3 months. I accepted HU treatment easily. I live on an island and Covid prevented me from leaving for about 18 months. And then the MPN dx came and I was advised to steer clear of flying until my platelets came down. That was not acceptable. For me it’s about doing the things I love and staying active. Every Hemoc I’ve talked to has confirmed what I’ve read - I can expect a normal life expectancy on HU. I’ve learned that I can only control so much and the body is going to do what it wants to do. Regular medical tests will hopefully give me data I need to treat, adjust, and stay well and thrive.
I also had a CT if my chest and head to look for any calcium buildup or blockage of any kind. Having that information might be helpful to your decision making. Good luck.
I felt the same way. I too was, and am, in great shape at 68. I started hydroxy since platelets went to 700000. Have been taking for 1 1/2 years now. At first I treated it like poison but, having no adverse reactions, I don’t worry about it. Initial dosage was 1000 mg per day but reduced to 500 per day since that controlled platelets. I hope u fare as well!
Hello Holden65 et al, I agree with a lot of remarks on here especially regarding seeing an MPN specialist, although your doctor maybe that already.To put your mind at rest about the "poison". I started taking hydroxy- carbamide in 1983 when I was aged 37, diagnosed with PVR and continued until I transferred to another drug in 2013. It got the bloods in control and the doses were adjusted as and when the bloods changed. The highest my platelets went was 880, but with adjustment of the hydroxy it returned to normality. I had mouth ulcers regularly and later on developed a redness on the face called rosecea. Apart from those side effects the "poison" held the bloods in good control, and I was seeing the blood doctor every 3 months, rather than every other week to begin with.
I enjoy life traveling the world, normally walking well, but now recovering from a hip replacement. I am 76 and enjoying life, as I hope you do when you are 76.
Best wishes to all readers, from Michael
There is one member, Aneliv9, eager to hear from long timers, back when they called it PVR. I hope Aneliv9 sees your post here.
Which drug were you changed to in 2013?
My PVR changed to MF around 2010 and I was put on Ruxolitinib in late 2013, which is controlling the blood well, but causing skin cancers
Understand the Rux complications. But good to hear it's working ok for a longtime. Are your other symptoms ok?
Apart from struggling to get my weight down which had increased with Rux' over had no problems. Spleen 'disappeared' more or less overnight after 30 years, no night sweats, no itching, and feeling better overall.
MichaelGood to hear your doing well, do you think it’s the Rux causing skin cancers or previous HU or the HU followed by Rux. When I discussed that with my Rux expert a few years ago he wasn’t clear which was the culprit. I am on Rux 5 years for PV and no previous meds but had UVB daily for itch. My skin is all good so far.
It almost certainly from the Rux' because the skin cancers started 5 years after starting the Rux'. I was using Hydroxy for 30 years but no skin cancers then, although I did have the redness on my face, which went soon after taking the Rux. I hope this helps.
Those were all very good replies. I would definitely get a second opinion. When my platelets were high at age 60 they sent me to an oncologist who had me tested for the Jak 2 gene which I did have. When my platelets got up to around 600 he wanted to put me on hydroxy which I refused. I went to see a different oncologist due to a change of insurance and he was fine with my taking only baby aspirin since I was asymptomatic. When my platelets went up to 1 million I choose to take hydroxy but in retrospect since I was still asymptomatic I wish that I would have waited. My experience with hydroxy was that I was fine on it for two years but it eventually started to make me very sick and so I recently got off of it. You found a wonderful site to get information from. It is your body and you know how you feel and doing more research before starting any medication is probably a very good idea. Getting a second opinion will give you much more information. Wish you the very best of luck. This website has been a godsend for me and I wish that I had found it sooner!
Are you Jak2 positive or had any prior thrombosis history? In Australia, if you're 60 plus with no history of thrombosis and Jak2 negative you are considered at intermediate risk. The recommended treatment is aspirin only with close management by your haematologist. This protocol came into effect in September last year. One month too late for me. I started taking Hydroxyurea in August. After 7 months I developed peripheral neuropathy and am still dealing with it.
My last platelet count was 649,000 and I am 61 with no other cardiovascular risk factors so your situation sounds very similar to mine.
My haemo said she'd like to see my count below 600,000 but for now aspirin is the only medication I am taking. We may look at Pegasys interferon down the track.
My experience with Hydroxy was a negative one. Having said that most have taken it for many years without issue.
In the end it has to be your decision.
All the best.
My platelet count never went above 470. It had been at this slightly raised level for two years. My GP had not thought to investigate it. He then allowed me to have a large leg thrombosis, followed some months later by a pulmonary embolus and then six months later two pulmonary emboli - one in each lung and still he did not investigate until the following year when I already had ET/PV and was started on hydroxycarbamide. This has worked well for me for the last 18 months in bringing blood levels all to normal and keeping them there. I felt like chemotherapy was like swallowing poison but it was just the idea of it and the shock at the start of treatment. Many, many drugs have horrific side effects but sometimes the alternative is also bad. One has to become knowledgeable and then decide on the course of action. It is not easy. I am on rivaroxaban - a blood thinner - but recently had also had to make the decision to add in daily aspirin to keep bad migraines at bay, thus raising the risk of a bleed. These migraines often made me unable to speak coherently for two hours or more and so the possiblity of a stroke was there. No-one was able to help me make the decision which I was of course told was at my own risk. However, I have decided the risk of a bleed is not as scary for me as a stroke so I am taking the aspirin as well as the rivaroxaban. I do not like the situation. However, I think the decision is right for me.
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