My platelet count is 7-800I I've been told I have ET and I'm on low dose aspirin.
My specialist has not been very informative, and I have a bone marrow biopsy scheduled. Has anyone chosen not to take the platelet lowering drug hydroxyurea (spelling?)) I am 70 in good health generally apart from this so I would like to hold off as long as possible before going on to the drug Any input would be helpful, its all a bit scary.
I was diagnosed about one month ago. My platelet count last month was 530. I am also on low dose aspirin. I have an appointment with a specialist in about 10 days. I want to make sure that I am on the right track.
This can be scary but discussing it with others is important . I pray that you will get a doctor that will explain all of your options. I had a bone marrow biopsy about 5 weeks ago and I still don't know what it all really means. Hence the next Dr appointment. Are you jak2 positive?
One note on BMB it is quick. Mine was about 10 or 15 minutes. Tolerable.
Let me know what you find out. We are all in this together. We learn so much from one another.
Take care, Janet
hello, here's my view of the options;
high platelets give u a risk of stroke now. hydroxy may lead to the development of leukaemia after many years of use. the only other option is venesection - taking blood from u so that the level of platelets is diluted - we replace our platelets at 7/10 day intervals so u might need very frequent venesections. also hydroxy slows down your bone marrow and can reduce the risk of myelofibrosis, a more worrying condition than ET. i take the hydroxy but try to keep the level low and have occasional venesections.
good luck
jane
Thank you for the really helpful reply. I did not know that hydroxy can reduce the risk of myelofibrosis although I had read about the risk of leukaemia. Now you are on hydroxy how often do you get a blood test to see how the platelet count is doing?
Hi jeanr,
I was diagnosed at 52 with PRV. My platelets were always around the 700-800 mark. I resisted hydroxy until I was 59. My haematologist explained that the risk of blood clot and stroke increases with age and he wanted me on it by the time I was 60. I was very anxious and corresponded via e mail with Louise ( volunteer) who allayed a lot of my fears. I take 1 tablet, 500 mg, Monday to Saturday and can honestly say, as I have previously on this forum that I suffer no side effects from the Hydroxy so don't be afraid of what may never happen. I have also had a BMB, yes it's a little uncomfortable but bearable. Ask if you can have gas and air, that helps.
Judy x
Thank you for your reply and your input re hydroxy. I appreciate your words - especially the don't be afraid comment. Thank you for telling me about your dose level and how hydroxy is working for you, also the tip re BMB. I'm glad you have no side effects. Your words help a lot.
Hi thanks for the info I am starting my Hydrea tablets today and am a bit worried about it also I hope I don’t have much side affects I am 68 and hoping I will feel better when I take it
You’re welcome, I am 66 now, my dose has varied over the 7 years, I‘m currently on 9 tablets per week and still no side effects.
Good luck
Judy
Hi judy, i've just rejoined
Yay! Good to see you back. Hope you’re ok? I’m not posting much, I find some threads get quite tedious with some comments getting very personal, so I pick and choose when I log on now.
Judy xx
Hello. Do you have any symptoms? Of ET or is it just the raised platelets? I was on 5x 1 a day hydroxy for years. I was diagnosed at 35 yrs with platelet count of 2500.
If you can try to find a haematologist that specialises in MPN? Depending on where you live. Good luck with biopsy.
Hello Jean - yes it can be worrying and frightening when first diagnosed with a MPN and told you need a form of chemotherapy. I was diagnosed with ET 7 years ago with very high platelet levels and after a bone marrow biopsy was put onto Hydrea and aspirin - at first I was very anxious at the thought of chemotherapy on a long term basis - but as others have said the reality is really not so bad - and really far outweighs the real risks and reality of having high platelet levels which is the real danger - yes Hydrea has it's side effects when you first take particularly but they are very manageable and nothing horrific at all - you would find the help on these forums a good source of tips to help out with anything you may experience from the drug but it is a very tolerable drug - I too hope you have a good consultant who is well versed and will explain the condition and the treatment well - and do use this site and MPN Voice to get good information too from those who have the condition including those that are working here - do be assured that although ET on Hydrea is a challenge it is well manageable and you will do fine - many of us have been dealing with it for years and can attest to that - and will also feel for you and understand the feelings you have right now on being diagnosed - so friends are here to help you out! All the best
Thank you for your cheerful reply. I am finding it helpful being part of this forum and hearing from people who have been taking hydrea for years. I plan on having a list of questions when I go back to the haemotologist.
Gee I’m glad I read this thank you I’m also like jeanr I’m starting the Hydrea today and wondering if I should it is scary thanks for info where all in it together it’s good to know I’m not alone
Hi jeanr
I was diagnosed at 66 with the JAK2 gene following a rising platelet count, am now 70. I have been on 75mg aspirin and have so far put off the HU drug but count has now risen over 1000. Now in a quandary myself as I'm facing knee surgery and May have no choice. It's a difficult decision but I have the best haematologist and trust her to suggest the best treatment. If it wasn't for the impending surgery I probably would still hang on for as long as poss without HU. Other than vague tiredness I have no other symptoms and other than bad knees from 20 yrs of international hockey I'm fairly healthy!! The key to ET is an informative haematologist you feel comfortable with..... Trust is everything. All the best
Thank you for your reply - it sounds as if you have a good haematologist. My only symptom is skin irritation. Once I have my bone marrow biopsy I am going to ask for an appointment with my haematologist and go with a list of questions. I am leaning towards hanging on if I can. I appreciate you telling me of your situation. It has been helpful finding this forum and hearing other people's stories.
Hi jean. I lived in Canada for nearly thirty years so it would be good to link up with you re the ET. If you felt like it would help I could check with Maz about the privacy rules and email addresses.
Hi Jamieisabella, always use the private message facility to exchange email addresses, it's safer for you. Maz
Hello Jean, what Helpatlast said is very good. I think the risk from a stroke outweighs the risks from Hydroxy. I take 16 x 500 mg hydroxy per week, plus aspirin. My haematologist told me being over 60 made the platelet count higher, so the risk was higher. I had bmb, it wasn't too bad, I had gas and air with it! I was told I was Jak 2 negative after the bmb. They probably have leaflets on the disease at the hospital, mine does but you have to ask for them. I'm sure you'll be fine on the hydroxy, the majority of people are.
Thank you for your reply. I appreciate all the information. I think when I was diagnosed it was a bit daunting, more so because the specialist ignored my questions, so I am very grateful for the forum and all the information. I feel more knowledgeable now, and feel more confident about going in and asking questions next appointment. Thanks Lizzie.
I was diagnosed in 2004 and chose not to take it until 2007. Between 2004 and 2007 my platelet count steadily rose to almost 1.5m. On it I then got it down to under 400k and it goes up and down from 330 to 500k since then. I felt the benefits of taking it as it reduced my tiredness from producing so many platelets and I was fortunate not to have many side effects. So in hindsight for quality of life I might have been better to take it before I did, as I lacked so much energy to do everything post diagnosis and was less active I put on weight and am still struggling to get it off some 10 years later.
Thank you for your reply. That is an amazing drop in platelet count. I had wondered how well it worked. I appreciate you telling me about your situation, it helps me make a decision. I have learnt more from this web site than I knew before and hearing people's stories has been so helpful . This is such a supportive forum, I am so glad I found it.
Hello Jeanr, welcome to our forum, as you can see it is a very supportive forum. I can completely understand your fears about starting medication for your ET, it's a fear that many of us have had, I myself have been taking Hydroxycarbamide for 6 years, I was diagnosed with ET 10 years ago. I was put on the Hydroxy because of the symptoms I was suffering, extreme dizziness, head pain, fatigue and fuzziness, and I can honestly say it has made a huge difference to my quality of life. The decision to take any medication is a big one and you will need to discuss it fully with your haematologist to get all the facts on the pros and cons and then make your decision, I can send you some of our booklets that we have on ET and Hydroxycarbamide, just send me your postal address either in a private message on this site or email me at maz.cd@mpnvoice.org.uk. I would also suggest that you make a list of questions that you want to ask your haematologist, it's always best to write them down so that you don't forget to ask something really important, you could also take someone with you, this helps sometimes with remembering the answers you are given. Let us know how you get on. Best wishes, Maz.
Thank you Maz. I am definitely going to take a list of questions to my next appointment. Thank you also for telling me about your symptoms and how hydroxy has worked for you. I am glad the medication has proved to have such a positive impact for you. I would appreciate the leaflets, but I could receive them by e-mail if that would be easier? I live in Canada. I feel very fortunate to have stumbled on this forum. I feel very reassured, and as you say people have been so friendly. It has made a huge difference, I was rather dragging myself around in doom and gloom! Thank you.
Hello Maz. I read your reply to jeanr. Very helpful but I get chronic ulcers which have really brought my immunity down. My hair is falling out or breaking and my feet are cracking and become very dry. During the first year with ET and starting Hydroxycarbonmide and 150 mgs Asprin I did not get any side effects but my immunity seems to be very bad. Did this happen to you. Diam
Hello Diam, I did get and still sometimes very rarely get mouth ulcers, and when I first started taking Hydroxycarbamide more hair came out when I washed it, but that settled down, I don't have any problems with my feet cracking, though my skin is drier so I do use a good body moisturiser every day and put lots of moisture cream on my feet as well, I cannot stand dry skin. It might be best if you discussed all of these problems with your haematologist to see if perhaps a change of medication might help. I do hope you get on ok. Maz
Do take the medical advice to have Hydroxecarbamide . I am 73 had sky rocket platlets 6 years ago . Have been on these tablets since 2009 few side effects -and platlets way way down - appointment at hospital 4 times a year for blood tests and check up plus chat with team .Feel good and cared for . Good luck - Lucy
Hi Jean,
I feel compelled to tell my story.
I was diagnosed at 51 with PV/ET (they can't quite pin it down), 2 years ago. A bit of a shock as rarely ill and couldn't quite believe it. I'm a bit of a natural health person so actually refused treatment to start with and adopted an even healthier lifestyle with moderate excerise and tried ways of lowering stress and my platelet and haematocrit lowered by itself. I am on 75 mg aspirin daily and I've had a few venesections but surprised my haem who now thinks what I'm doing is having an effect. Recently my platelet count rose to 650 and they were a bit concerned and, like you, I would like to put off hydroxy and there are other options. If it rose to 700-800 I would seriously consider it as I don't want a stroke but it goes up and down with me and I can't prove what I'm doing is working as there isn't another me without the measures I take as a control experiment! I changed my doctor to one who was more sympathetic to what I am doing and we have built up a good relationship even though she might have thought at the beginning, I was away with the fairies, she is quite interested now that I have to have very few venesections (10 months apart at one point) but I'm glad she's there and I do trust her. I'm on a 'natural inflammatory' diet which is not too strict but is mainly a diet of un-industrialised food like our grandmothers' might have cooked! Load of veg, limited good red meat, keep hydrated, fish oils, green tea...etc. I also take Tumeric as an anti inflammatory which my haem now accepts can be beneficial as it has research linked with these conditions. I'm seeing a professional medical herbalist who is very good on diet.
It's good to see so many people who do take hydroxy and are doing ok as I do realise I may have to take it one day and there is new research going on which is good. There are other drugs and these are changing as time goes on. I do wish the medical establishment would take a holistic approach more seriously.
BTW I am Jak2 positive.
Good luck
Vanessa
Thank you Vanessa for your helpful reply and telling me about your situation. You seem to be doing a good job of keeping the count down. I am quite interested in how you are doing that, I am quite healthy and have upped my fruits and vegetables and cut down on meat and tried to increase my fitness level really as I feel that the fitter I am my body will be better able to handle things. I will get another count when I go for my bone density scan, so then will have a better idea of where I am which will help me hopefully to reach a good decision. I have found that it seems arbitrary - because I'm reached a certain age I should go on the medication. I really do appreciate your response, I was also interested to read about turmeric - I shall have to look up about that. With all good wishes, Jean
Hi Jean ,
I really can't add much more , you've been given such good advice , this is so important for you at this time , I know how your feeling it's 14 months now since I was Diagnosed with ET jak2 Pos , After a TIA which scared me to death & my family looking on , my platelet count was 800+
I'm now on HU 500mg 4days wk
& 1000mg 3days , & Clopadogrel & Simvastatin , I do get a bit fatigue & headache but I manage it well & I walk a lot stay healthy 1200 cals a day lots of fish , veg
And camomile tea , ,what I'm trying to say is us MPNers are a special kind of breed 
, we are all very simular in one way or another
It's hard to take it all in ,
but we are here for each other x
I hope this helps you
Keep positive , & healthy & the rest takes care of itself x
Pam from Newcastle upon Tyne .x
Thank you Pam. I appreciate so much people telling me their individual stories. I knew very little when I was first told that I had ET. I found lots of articles, but couldn't find anyone to talk to about it, so finding this forum has brought a lot of reassurance. It must have been really scary having a TIA, I am glad to hear you are managing well and I appreciate your kindness and cheerful comments. Thank you -- take care too, Jean
I have et
When first diagnosed my plt level was 1000
I was put on aspirin and hydroxyurea but had a lot of side effects so went off hydrea and when my levels went back up started roferon which I tolerate much better
My haem says now they don't recommend using anything to reduce platelet levels until closer to 1500 unless there are other factors in my case I have high blood pressure so he feels I need to keep them a bit lower around 600?
I found these forums fantastic
Thank you for your reply, I was very interested to read that your haematologist is saying that they don't recommend using anything to reduce platelet levels until closer to 1500 unless there are other factors. I'm glad you've found that roferon works well. I appreciate you telling me about your situation. I am so pleased to have stumbled across this forum people have been so supportive and kind. With all good wishes, Jean
HI Jean - isn't this an amazing forum!! You have been given so much advice and positive vibes
I am on Hydroxycarbemide and like several people on here have made other lifestyle changes mainly to diet and exercise that I am convinced has made a difference to how I feel - and my haemo also thinks it's helping the condition in general. I have given up sugar as far as possible - that means no added sugar and also low fruit intake, no processed food and basically eating a savoury, wholesome diet - I've lost 21lbs, have more energy than ever (always good with ET!) and my hair, nails, skin have never been so good! I sleep better and my platelet levels are stable around 50 with 12 tablets of Hydroxy per week.
Having the diagnosis, the medication and the knowledge you have this condition is the biggest shock, then when you start to live with it, it's not as big a deal. This forum is amazing for its wisdom, information and general love and support - it's helped me more than I can say!
Keep smiling - we are lucky, there are many folk out there who have conditions and illnesses that REALLY impact their lives. It's not to minimise the impact it has on some of us, but we have ways of managing it and support from others that can make all the difference.
If you want to talk more about the sugar free lifestyle, let me know and we can chat.
Liz
Thank you for your reply. I have been trying to eat more nutritionally since I was diagnosed - more fruits and vegetables and fish. So I very interested in hearing about the sugar free and your lifestyle foods - do you stay away from meat? Thank you very much for telling me about your experience. I am glad things are going well for you. I was interested to hear what a positive impact the dietary changes have made to your hair etc.
Hi Jean
I can't add much more just to say welcome to the forum as you can see from all the responses you are not alone. I too have ET. Diagnosed
Hi Jean sorry pressed wrong button! As I was saying I was diagnosed following a portal vein thrombosis in 2012. I now 54 and take hydroxy and aspirin. Put on hydroxy as in high risk category due to the thrombosis. I was very worried initially when started taking it. But it has had such a positive impact for me. My platelets are now normal and just had my dose reduced. Obviously will continue being monitored and dose may need to be adjusted up or down as time goes on. I despite the meds I take feel so much better than when diagnosed.
I have only one tip I take it in evening as it can make you feel tired and that way I sleep through the fatigue.
Good luck with everything Liz C
Thank you very much for the tip to take it in the evening. I am glad you are doing well and that your platelets are normal and your dose has been reduced.. Thank you very much for your reply and input. All the best, Jean
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