My consultant is keen for me to start Hydroxy, Ill be 62 in Sept. latest count 463. If Hydroxy bring platelets down, based on my numbers what benefit is it to me. My consultant said its because of my age. Any info would be appreciated.
Hydroxy: My consultant is keen for me to start... - MPN Voice
Hydroxy
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Tigger59
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Hi , I’ve just heard that my consultant wants me to go on Hydroxy next year after I turn 60 and he is a new consultant. The last consultant alway said it wouldn’t necessarily be the case he’d put me on Hydroxy at 60 !? My platelets have always stayed around the 785 to 800s. I also asked how high they would have to be before they put me on Hydroxy and they alway said I was well below that, as well as being very fit and healthy with no TIAs. So its very confusing with all the different opinions. I’m wondering if the new consultant is just going on standard procedure at 60 without even seeing me with only a phone call after my last virtual call. Also I used to like to speak with Jean my practice nurse but she has re located !!? And I had such confidence in her !!? What to do !? What to do !?
Hi, yes, similar, when I turned 60, the consultant agreed because my platelets are not high , no other conditions, he was happy to leave me aspirin only. I'm researching hydroxy to find out what it might do for me, all I am finding is it results in lower platelets which I cant see apply to me. I feel I am missing something.
I know! It makes me think should I be getting a second opinion? I hear lots about professor Claire Harrison helping with advise. Although at the same time I wouldn’t want to have a stroke !!! If I didn’t go on the Hydroxy
Also I so wish I could ask my original Haematologist Dr The who moved to Liverpool what his opinion would have been!? But I’m not sure if that would be possible?
in reply to Kizzy03
Hello yes follow your gut and get the second opinion,lm 70 just and on hydroxy which for me has difficult side effects. The alternative is a drug not offered as a first course of action and often given to 80 year olds,instinct tells me this is not for me. I'm arranging a video call with the consultant who l have never met and spoken with 3 times if l still feel unsure l will also get a second opinion.
My consultant ( knowing I was very reluctant to take hydroxy) said it was ok up to 1500. I’m 64 . But I think I will rethink if they get 1200..
Thanks, there seems to be so many opinions from different health boards, which makes it very difficult to know whats best. My platelets have never been above 560. I m trying to find out as much as possible about Hydroxy.
Hi my lovely, I was put straight on to Hydroxy and I was 54. Because of my horrid symptoms, and the fact I had had 3 DVT's, I welcomed it. It did reduce a lot of the symptoms it also gave me some more. If you are prescribed Hydroxy please read the drug information leaflet. I learnt lot from that xx
Thank you
Hi, I’ve just read your post. Likewise I had a stroke aged 50 ( not ET related) I was diagnosed just days after my 60. Like you put on hydroxi. For once I’ve found it difficult to pass on my thoughts to those above.
Thats about the figure I was given 1500, when I asked how high they’d have to be before given Hydroxy from my last haematologist. He was always watch and wait and I’m only on Aspirin for now.
The age for being considered high risk is 60 in most protocols. Some protocols have shifted this to 65. This protocol is based on statistical projections in large groups of people with ET or PV. It has nothing to do with your individual risk profile. We each age differently. We each have different cooccurring medical conditions. We all tend to have more cooccurring conditions as we age. We also acquire more genetic mutations in each year of life. Thus the age based protocols make sense for groups of people with ET/PV, but may or may not make sense for any one of us individually. Optimal care is individualized care guided by a MPN specialist with the depth of experience to examine your profile and make treatment recommendations based on your unique MPN presentation.
Many hematologists lack the expertise to provide optimal care for MPNs. They simply lack to experience and knowledge to do so. They need to follow protocols rather than truly individualize care. This makes sense from the perspective of the physician as he/she is less likely to make a "mistake." Defensive medicine is a very real and salient part of how medicine is practiced. Doctors who follow the standard protocol are less likely to be held accountable if there is an unfortunate outcome, even if the unfortunate outcome is caused by following the protocol. Ultimately physicians recommend treatment options and patients decide which option to choose. It is up to each of us as patients to take responsibility for the decisions that are made regarding our care. We need to choose wisely, based on facts not fear.
Regarding your question about reducing your platelet levels when they are already relatively low - there is no benefit. There is no linear relationship between risk of thrombosis and platelet levels at these kinds of numbers. The issue is not about how many platelets you have, it is about how your blood cells behave. This is far more complex than whether your platelets are above or below 450. That is not to say that cytoreduction is not indicated for some people. It most certainly is needed for some people with ET/PV. Those with a history of thrombosis, microvascular events, or hemorrhage or who are at increased risk for these things most certainly do need to consider medications to mitigate their risks.
The answer to your question is not black and white. It is not that simple. There are risks and benefits to each of your treatment options. Whether you need to initiate a new treatment protocol based solely on your age is a decision you will have to make. It needs to be an educated and objective decision based on your own assessment of the risk/benefit profile of each of your choices. On thing I would note is that hydroxyurea is not your only choice. There are other medication options, including PEGylated Interferon. The formularies prefer hydroxyurea because it is so much cheaper than PG-IFN and the other options. HU may or may not be a better choice for you individually. You will need to evaluate that for yourself.
Do know that all of your choices come with risks/benefits. This includes continuing to treat with the protocol you have been following to date. To be clear, aging does tend to increase our risk factors. While there is some disagreement in the MPN treatment community about the age protocols, many MPN experts will still recommend initiating cytoreduction at a certain age to reduce risks. You will have to decide this for yourself based on your own assessment and risk tolerance. If you do opt for cytoreduction HU is not the only option. , You will have to decide which medication is the best choice for you. The best thing to do is be sure to consult with a MPN Specialist in making this decision. Also consider getting a second opinion on your options.
Since we ultimately have to take responsibility for our own treatment, education about our options is critical Here are some articles you may find of interest.
mpnjournal.org/how-i-treat-...
legeforeningen.no/contentas...
drugs.com/monograph/hydroxy...
targetedonc.com/view/more-h...
Hope this helps.
Hi, Thanks for your great reply, and information. Absolutely true, only I can decide, Im gathering as much info as possible to help. Thanks again
The latest protocols for ET weigh JAK2 status as a very strong risk factor. I saw no mention of that in either the query or your Hunter’s reply.
Andyls is correct. Mutation status does matter. JAK2, CALR and MPL are similar, but not the same. Likewise with mutant allele burden. Add to that, the status of non-driver mutations (e.g. TP53, ASXL1, NF1, etc.) I am NF1:c5425C>T positive which affects my risk profile. I am more likely to progress to AM L due to the NF1 mutation.
These sorts of factors is why consultation with a MPN specialist is so important. MPN Specialists are better able to take all of the relevant factors into account in making a recommendation.
Hello Hunter. I would be grateful if you could post these links to my box, as I cannot see how to bookmark them. Many thanks!
Hi My platelets were 730 when I first saw haematologist. He started me on low dose Hydroxy am doing ok - platelets going down but still 600. I didn't realize most of my health issues were because of high platelets! feel much better already.. good luck Tigger59!
Hello. The latest guidelines I heard for drug intervention were age 65 and / or platelets at 1500. But, and it’s a big but, the decision to start treatment is based on many factors including other underlying health concerns and symptom burden.
I started on Hydroxy when my platelets hit 1700 in my late fifties. They’d hoovered around 1200 for a long time. I really did angst about it (which with hindsight was a complete waste of energy) but it was a no brainer with my platelets so high. And the result of taking the Hydroxy was transformative not just in terms of my numbers but in how I felt.
I’m under Prof Harrison and the team at Guy’s. I was always told that the 60 (and now 65) / 1500 markers were only ever points at which ‘to start a conversation’. It may be worth asking for a second opinion.
The older we get the more concerned doctors are for blood clots. Aspirin is for thinning the blood but Hydrea is for reducing the platelets which helps to reduce the possibility of clots which are more prevalent as we get older. But what is considered “older” is up for discussion. My hemo suggests 65 and up. Others say 70. I’m 78. Because Hydrea is very quick to reduce the numbers ( mine went down in two weeks) the other discussion is side effects of the drug. It is a chemo and toxic. I believe it’s important enough not to take the decision lightly but also it really doesn’t matter what the rest of us do because we each react to meds differently. What is good for one does not mean it’s right for another. It’s got be a decision made by a specialist that is trustworthy and knowledgeable. Myself....I don’t want to take a chance with clots and I handle Hydrea pretty well....3 times a week, 500 mg. Others can’t. Please don’t take other opinions as the way to go. We’re not doctors. I do a lot of research and join MPN seminars for discussions with the medical field. Good luck with your decision.
Hi,After my husband losing his battle with life after being given hydroxycarbamide for ten
years and myeloidfibrosis setting in if I were you I would not touch them, there are
other alternatives. Perhaps you should get him to sign a paper to say that he is responsible
for anything that may go wrong. I would not trust an haemotologist no further than I could throw them because as has been noted on this site they will not accept the side effects, and
anyone can have a stroke whatever your age. My husband always stated those tablets were killing him, which considering what has happened and the fact that yes, they did control
the platelets, they just killed the platelets full stop.
My husband who passed away at 73 last September was told by an Haemotologist at Burnley General Hospital, Lancashire in June last year that he had started with myelofibrosis,after many years with no proper checks being made, so be warned because if haemotologists
will not accept the side effects then it would appear that after 60 nobody can be bothered with you. The correct thing to do would have been to tell him right from the beginning so
he could make his own mind up because without knowing anything whatever about those
tablets how was he to know. He always stated that the tablets were killing him.
He was an HGV driver not a computer enthusiast and if we had both been told then I would
have been able to find out all the things that would have helped,
I have been treated to intimidation by Blackburn Royal Hospital who also would not answer questions that were put to them because they knew full well that we should both have been
told everything about those tablets and the side effects etc.
Sorry to go on but as so called medical negligence solicitors will not help or anybody else I am never going to come to terms with Alan's death.
Hi, I am very sorry for your loss, it is heartbreaking and hope you get answers and find some peace. I lost my dad last April, he suffered a major stroke 10 years ago, which resulted in him being diagnosed with dementia 2 years ago. I have seen first hand what a stroke can do, and having ET jak2, is a risk factor. I have a lot of research to do, which I can then discuss with my consultant at my next face to face. As others have mentioned, Hydroxy is not the only option. I also need to find out more about what ET jak 2 actually means, what drugs do, side effects etc. Thank you, take care.
HiUnfortunately they are not going to give me answers because they are quite well aware
that when they started giving Alan hydroxycarbamide without telling him all the ins and outs regarding those tablets and the fact that I have Type 1 Sugar Diabetes which they had noted but ignored then it was even more important that we were both told all the
information. To control platelets to the extent of them not being there at all is totally
disgusting. It would appear that if you are over 60 then you are not important.
Both my husband and I are 73. Legal and General refused to pay his life insurance out
because they would not accept the fact that Alan was told nothing so between
NHS East Lancashire and Legal and General I have had it.
I was diagnosed with ET Jak 2 in 2008 at age 52. My platelets were only around 600,000. Other than that, I was pretty healthy, no risk factors for stroke. However, he immediately put me on hydroxy. Several months later, my platelets dropped down to normal range and I stopped taking my medication on my own. I ended up being rushed to the hospital in terrible pain. I thought I was having a heart attack. It turned out to be a blood clot in my spleen. My platelets shot up to 800,000, and they kept me for 3 days. I went back on the medication when I got out but my platelets never were normal again. I have now progressed to myelofibrosis. I now believe that my original hematologist put me on meds way too soon but back then I was naive and trusted him. But, everyone is different and if you’re unsure I would definitely get a second opinion.
I started on it last year at 61, my platelets were 489,000. It didn't take long to come down, my doctor let me go off it for a month at Christmas now I'm back on it only 3 times a week. It's recommended once you hit 60 if your numbers are high, we're at greater risk for stroke.
I am 61, was diagnosed ET with JAK2 early January and have been taking Hydroxy since then. My platelets were skirting 700, they are now in the low 600's and dropping. I have no other risk factors for stroke except for age and ET.
My perception is that the hydroxy has vastly improved my quality of life.
For years (I have had high platelet count for at least 5-6 years before diagnosis) I have wondered why I was dragging so miserably and why every activity ended up with aches for days afterwards. I felt an immediate improvement in energy and mood the first week of taking the hydroxy. And in the last two weeks I was able to put in a new dry stream bed, put together a commercial trellis, now ready for installation if it would stop raining, build two table tops so that mosaics can be applied, put in new plants, weeded multiple garden beds, made beer and two batches of bread. In a addition to that I am back to hiking and walking multiple miles a trek.
Before I was taking hydroxy I put the inability to manage any of the above to depression. I would also be racked with muscle pain for days after doing any one of those things. But after putting in the stream bed yesterday, I have a bit of a stiff neck, but back, legs, arms etc feel normal.
I don't see how any of the above improvements in energy have anything at all to do with platelet counts, but as Hunter5582 has pointed out, ET is also an inflammatory disease, and that could account for the way I was responding prior to taking Hydroxy.
Even given that all of the above benefit could be entirely coincidental (or placebo effect), for me it is worth the risk, but I have had no side effects from taking it and I personally would rather have a shorter life span being active and interested than a longer one feeling like I am watching life through a fog. This is the sort of trade offs one makes with incurable diseases. What life do you want to want to have at the end of the day if you can't have long and energetic?
If it were my choice I would say if you are feeling great, have no particular feeling of malaise and are not wondering what happened to the active person you used to be and have no other risk factors, I would stay off the Hydroxy.
On the other hand, if you feel like you just can't be moving in the morning or think that you are depressed all the time you might want to give it a try.
You can always back away from taking it if you don't have a good response to the medication. There are others that you can try if you can't tolerate the hydroxy.
I am ET just turned to PV and will be starting Pegysus shortly. Worth looking into as an alternative. Good luck
I was put on hydroxyl when my platelet were 880..hey have started coming down over the weeks with the dose being adjusted. She is happy when I get to 450 so I wouldn't have thought you would need any treatment yet, just occasional blood tests to see if rising
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