Hi all, Just getting back on here about platlets increasing over 1500,My hematologist will want me on hydroxyurea as he said when I go over 1500 that is his way forward.
The past 2 bloods I had done have come down from 1420 to 1402 to 1300 last time 6 weeks ago.
I am just wondering if it has to be this way I have been having poor sleep the last week or so with my little one not sleeping well don't know if this effects it or not maybe I am trying to clutch at straws to stay off hydroxyurea as long as I can.
Should I try and get a blood test in a week or so and see if it is at the same mark or not I feel well no headache ect at a cross roads now and don't know what I should do.
Thanks for any help advice.
I don't want to put myself at risk or push this too far.
Thanks again Mike.
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Mike1974
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There are a number of things that can cause reactive thrombocytosis. Some people do report that they experience some degree of increase PLT due to stress. Note that it is normal for PLT to cycle by as much as 100K in a single day in reaction to what is going on in your body. My PLT used to cycle by 200K when not on cytoreductive therapy. Ultimately, it is the trend over time that matters.
With PLT as high as 1500, it would be appropriate to consider initiating cytoreduction. Note that while there is risk of thrombosis, it is actually the risk of hemorrhage that increases when PLT are that high. There is a specific risk of a condition called Acquired von Willebrand Disease at elevated PLT levels. You can also increased increased risk of hemorrhage without having AcqvWBD, With PLT that high, the norm would be to do a von Willebrand Panel and check your prothrombin times (ptt/aptt-INR).
If you do decide to initiate cytoreduction, note that there is more than one choice than hydroxyurea. Another common option to treat ET is Pegasys. Most doctors prefer PEG to HU for someone your age due to the risks associated with long-term use and to anyone who still may wish to consider having children. Some docs prefer PEG to HU for all patients as a first line choice. There are other options as well. Here are two references.
Additional blood work is indicated prior to making a decision. Suggest it would be prudent to get a second opinion from a MPN Specialist. mpnforum.com/list-hem./ Most doctors, including hematologists, do not have much experience treating MPNs. Not all are up-to-date on the emerging thinking on treating MPNs. Note that if after reviewing the information on your options you would prefer PEG over HU, it is much more expensive. It can be harder to get authorized.
None of us can advise you as to what is in your best interests. That is a decision you will have to make based on your treatment goals and risk tolerance. Ultimately, it is your treatment preference that must drive this decision.
Hi Mike. I am 46 and been taking 1g Hydroxy plus one aspirin a day for just over 10 years with no ill effects. This started when my platelets were over 1500 and after taking they Hydroxy, they came down to 400 and have remained around this mark ever since. For me, being on Hydroxy has been a very positive experience with no side effects at all. In my opinion, it is worth a try! Best wishes.
Hi Mellieevans,Thanks for you very positive response about being on hydroxyurea. It really helps when mulling this over the next step on this journey.Thanks again.
Hi Mellieevans,Thanks for you very positive response about being on hydroxyurea. It really helps when mulling this over the next step on this journey.Thanks again.
Hi, my platelets have always been in the high side since diagnosis at age 49. When mine got over the 1500, haem wanted me to take HU. I stalled him, did lots of research on pubmed, checked with an MPN specialist who confirmed what I had discovered, and I declined the HU. I just take ½ regular aspirin every third day. No history of and thrombosis etc and for me , even having 1 side effect from the HU wasn’t worth the risk.
At the end of the day, it’s totally up to you what you decide. Don’t feel rushed into any decisions, just ask for more time to weigh up all the pros and cons for you. You have to be happy with your decision.
Hi mhos61, Thanks for you help I will have a good chat with my hematologist on Tuesday and work out what is best for me and why he feels hydroxyurea is his first course of action.
Just to clarify Mike, I have been on hydroxyurea for the last six years. It has suited me very well with no side effects, and I am very satisfied, however I am 67.
Most MPN Specialists would advise Pegasys for their younger patients if not contraindicated by any autoimmune issues.
I suspect you’re seeing a General Haemotologist? There are MPN Specialists in Co Cork and Dublin. If you’re conflicted about treatment it would be a good idea to consult with one.
Below are the contact details of two MPN Specialists in the Republic of Ireland. Not sure how the health system works over there, but if you make contact I am sure they will advise you on how to proceed for a second opinion or to transfer your care.
I live in the UK, but I receive ‘shared care’ with my local haemotology team, and Professor Claire Harrison (MPN Specialist). Maybe something like that is possible in Ireland too.
Dr Clodagh Keohane (Mercy University Hospital, Cork) Tel 021-4271971 (ext 5747)
Dr Eiblin Conneally (St James’ Dublin) email address : conneallysec@stjames.ie - Tel (01) 416 2167
Hunter covered it pretty well, I have heard from ET veterans that stress raised their platelets. Whether it’s time for meds is for you and your doc to decide, as always getting a second opinion from a MPN expert is ideal even to help you chose which meds if starting meds. I have always been advised not to base any decisions one one blood test, it’s the trend that counts, looks like they were falling so whatever you do another test seems wise. And HU isn’t the only drug, I would also look at Peg if you are starting meds. Some docs, not all, believe it may other benefits on the bone marrow etc.
Hi ainslie,I was in the doctors yesterday and I asked for another blood test so we will see it could even be higher because I have been caught up on it a bit,I see my hematologist Tuesday next week so I am sure he will want do bloods before he decides on anything.tThanks again
You seem a bit out of sorts at the moment. Hunter's advice is always spot on.
I would just like to add that I have been in Hydroxy for 10 years and have no side effects from it. I was horrified at first when it was suggested by haematologist that I took this drug but all is ok. I don't even go to hospital now, just 3 monthly blood tests which are sent to hospital and my nice Dr calls me for a chat about everything and how to progress.
Perhaps just go ahead with taking it, I am sure you will be monitored carefully especially at first and see how you get on. Good luck, this is an excellent site which if you feel out of sorts you can drop into and see how many of us are in the same position.
Hi jennytheb,Its good that you are doing so well on hydroxyurea and yes the idea of going on it is hard,but if it the best option then I have to think hard about it.
Hi, Mike. As I understand your question you are asking if HU affects sleep and causes headaches? I am in the US so don’t know what is generally recommended in Ireland but I was started 18 months ago on HU and have not experienced any ill effects from the medication. My doctor watched my platelets for several years hover around the 450 mark before rising to 750. At this point I saw a Hematologist/Oncologist who recommended I start HU daily (500 mg.) with 81 mg of Aspirin. My platelets are now 220 and the rest of my blood count is within expected range. I have read studies from the NIH in the US and have not found that sleep is affected or headaches as a result of taking HU and Aspirin. I should also mention that I am a nurse and have experience reading medical research so I think I would have found something on this if it was significant. This is not to say that it is not possible as individuals experience medication side effects differently. I would not be comfortable personally with a platelet count over 1000 and would encourage you to have a conversation with your doctor about HU as well as other alternatives available in your country. I guess my suggestion would be to do something rather than risk an adverse event that might put your long term health in jeopardy. Best of luck to you!
It's important to point out that none of us here are qualified to advise you what to take or not take. Hydroxycarbamide is a long established drug which suits many people and we shouldn't be put off by the fact that it's technically a chemotherapy drug. There are alternatives, such as Interferon, which you could discuss with your haematologist. I have been on both at different times - personally I was happier on Hydroxycarbamide, but for many people it's the other way round.
Hi Otterfield,Yeah it looks like some intervention will be needed and I suppose if one is not working then the other is an option.And yes I will have to make this call for myself.
Hi Mike,I brought my Platelets down to normal range by sprinkling Cayenne Pepper on my OMAD...now down to 242 from 765 in 2 months, HYDROXY UREA could not do this in 18 months.
Thanks I was called in by the doctor after my platelets went over 1500 I asked should I do them again a she looked at me and said why not they came back over 1700 this time so I think I was stressed out when going in not knowing what they wanted and thinking the worst.So for me stress is a factor.I don't think he will give me much of a hearing now that he sees these new numbers..
Just remember, my first month on Cayenne Pepper brought my PLATELETS down from 669 to 442....so that's down 227 markers, so amazing....Xeralto blood thinner could not do this, it did help just a little in the beginning from 765 to 669 but that was it....wonderful you are trying it, Good Luck Mike.
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Hello again everybody! I have finally received a diagnosis based on BMB. Triple negative ET
Hydroxyurea and hair loss
Want to understand ET
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From ET diagnosis to uncertainty !
