Starting Treatment ?

Hi everyone, I would like to ask if anyone else has decided not to go on treatment or at least delay it. I have just turned 60 and have ET, have been on aspirin only for the last 5 years with platelets fairly stable in the 800's and no symptoms. My consultant has been happy for me to remain on aspirin only without any mention of taking anything else. At my last visit I was about to turn 60 and treatment was mentioned but she made it clear it was my decision. Obviously I am aware of the increased risks that come with being 60, but I am having a lot of difficulty with this as I am symptom free and have read a lot on here about side effects. Yes, I realise I might not have any but I would also prefer to wait as long as I can. I have no other risk factors for stroke but I also realise anyone can have a stroke without warning even those without an MPN. Has anyone else delayed starting treatment ? I would love to hear everyone's experiences , my next clinic visit is due next month. x

26 Replies

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  • Hi Jodary, yes, like you, decided to put off taking any drugs, and kept on even keel for long time, in 700's, just on aspirin. Am older, as 76 now. Told by lovely haematologist could be on a sort of 'plateau'. However, platelets suddenly rose very, very dramatically over a few days, and I did in fact have a stroke (thankfully, no long lasting effects), which has obviously somewhat changed my mind. Before, was so keen to avoid side effects of drugs, wanted to take nothing at all. Hope you get others writing in, especially those nearer your own age. But I would definitely advise listening to a wise haematologist, who knows you and monitors your platelets. Wonder how often they are checked....mine now every week, but that is because of the stroke. Very best wishes, Tinkerbell 13

  • Thank you , I was on 6 monthly clinic visits but as I am 60 am now on 4 monthly. Its quite easy to forget about having an MPN between visits. I sometimes get very confused about what to do.

  • Really understand your 'getting confused' and this is another reason for being on this brilliant MPN site, as so many in similar situations and does boost our confidence to hear about/from others in similar siutations. Do you feel you have an understanding haematologist, whom you see regularly? as that does help....and good to go along with all your questions written down, we find! Like you, most of the time, I just don't think about the ET, and just get on with living a normal life. But, then, when the appointment comes around, it all jumps to the fore again! Hope you get some more feedback from others, to encourage you. Kindest wishes, Tinkerbell13

  • I do have a lovely haematologist but she always says its my decision and I just don't know , like you I want to not think about it and live a normal life, and obviously not being on treatment enables me to do so. Do I understand that you are on medication now? Obviously if something similar happened to me or my platelets suddenly jumped up that decision would become much easier for me !

  • Yes, on the lowest possible dose of Anagrelide, which I seem to be tolerating. Do realise, probably a wise decision, though always prefer just to take vitamins and drink lots of water and eat lots of veg and fruit, rather than have to take any form of drugs! Best wishes, Tinkerbell13

  • Hi Jodary, I think it has to be a personal choice. As long as you have all the relative facts and have discussed in depth the 'pros and cons' with your haematologist, essentially, it is down to you.

    I am a similar age to you (61), and was diagnosed last year with ET with platelets stable over six months at just 500. At my first appointment with the haematologist she suggested that I commence with hydroxycarbamide. Nothing could have prepared me for that, I was really shocked, as I was only beginning to learn about ET, so I couldn't comprehend why with relativily low platelet counts and no ET related symptoms (apart from fatigue) that this was absolutely necessary. In addition, I had no other health issues. Indeed, I have low cholesterol, normal blood pressure and a healthy BMI. However, I did listen to the haematologist discuss the risk of heart attacks/strokes with increasing age, and she also highlighted the potential devastating disability that often arises from having a stroke, that somehow struck a cord with me - more so than the risk of death? I made the decision albeit with mixed feelings to commence with hydroxy, I still don't know if it's the right decision and I do question it at times - but I have to put my faith in the expert and hope that she's advised me well.

    As far as reactions to the medication are concerned I have had none. I have been on this medication for nearly a year and take one tablet a day Monday to Friday and week ends free. I am due back at the clinic in May, it will have been four months since I was last checked so my platelets may have increased....hopefully not though.

    During the course of this last year I have tried to educate myself as much as possible about ET (it's hard) - but last year when I was questioning my platelet count I thought counts were all that mattered, what I didn't take into account was the effect ET had on platelet quality because I was unaware of this fact.

    I hope that you have many more responses that will help you make an informed choice that is right for you.

    Mary x

  • I guess u r weighing up stroke risk with any side effects of taking meds. When i started taking hydroxy i looked up and discussed with my haem all the available statistics and as a result concluded that the risk of stroke was higher and more unpleasant than the likely side effects of going on hydroxy. Also some evidence that hydroxy can reduce the risk of fibrosis. good luck

  • Yes in effect thats just what it is . weighing up your risk against possible daily side effects. I have a cruise later this year and my sons wedding next year. I don't want to feel not 100% cos of side effects but I do want to be around ! X

  • Hi Jodary, im now 64 was on a watch and wait for 18 months however heam kept point out to me the risk factor of being over 60 my platelets went to 503 then was told need to be on HU im jak2 pos ET also have mild bp and family history of strokes so i was at high risk plus i have mitral valve regurge am on beta blockers and statins also .. so i did agree with the advice to start HU ,i asked to start on low dose first to get used to it , so was on 3 pills a week then after few weeks on 5 now been on 7 a week and platelets 388 im on asprin of course good luck with your decision and its not as bad HU i was scared but needs must eh Holly

  • Thank you , I sometimes think it would be a bit easier if I was actually advised to but its always made clear its my decision and I am sympton free and reluctant to start it. If that makes sense x

  • I was told my platelets would jump when I got to 60 - and they did - with a big bang, they went over 1000 from 850! This meant going on hydroxy, which I tolerated fairly well for over 3 years, then I got peripheral neuropathy in my feet and was changed to Anagrelide. My platelets have been a lot better on Anagrelide, and the last 2 checks were in normal levels - hope this carries on! It's your choice but as long as they keep an eye on you it might be ok to wait a while. (I do wonder what changed in my body when I got to 60?)

    xx

  • That is strange , my platelets had actually gone down a bit on my first clinic visit after reaching 60. I will see what happens next time. I do find I read someones experience and think I perhaps better start treatment snd then read someone elses and change my mind. I know everyone is different but I do know I feel very strongly I want to go on as long as I can without the heavy meds. Thank you x

  • My platelets have dropped down to 350.

    Now my red blood cells size has increased?

    I'm now wondering what this means?

  • This is what I mean, I don't have any symptoms and sometimes HU gives you other problems or side effects.

  • I am 65 and my platelets are in the high 900's so far only aspirin only. I was diagnosed a year and 1/2 ago with platelets at 850 and I looked as far back as I could and it looks like it started in Feb 15, 2015 at 543, then went to 750 in June when I picked it up on a wellness test, GP wanted me to wait and I did all summer and it went down to 650. He then sent to me a local hematologist which did all kinds of tests (mainly due to I had malignant cancer in 2013) so he wanted to make sure there was no cancer lurking. He did the blood work I am also Jak2+ and then a BMB, then handed me a script for HU and a paper from the Mayo Clinic, when I read put on gloves before use, I was shocked but I did start it 7 days a week at the end of October 2015, I stayed on it until Feb 2016, had lots of side effects but nothing I could not live with, but one morning woke up dizzy, nauseated and back pain around kidneys so I had recently gone to an expert (I am in the US) and he had told me to get off of it and not take anything but aspirin. So at that point I stopped, my platelets had only gone down to 550 after 4 months 7 days a week on it. I went to a second expert (as you can see I was searching) he said the same thing, no meds and age is not a factor alone. Although they did say people over 60 are more prone to cardiovascular events but I don't think our bodies says hey your over 60 all of sudden, I think as time goes on with ET it does get worse. OK fast forward from Feb 2015 to now 2017 platelets slowly went up and down and mostly up. I can tell you I did go back to the expert at John Hopkins and he said not yet, he told me the longer you stay off medicine the better, he also told me people 65 and over are more prone to leukemia and even though there is a small chance with HU he really does not want me on it. I said are you just waiting for me to drop! he showed me tons of research on ET and he is convinced the evidence is just not there for thrombotic events with high platelets alone, he told me he goes on evidence. He is a true expert was one of the top Doctors at Ash this year. He is a lone ranger (although most of the Doctors there agree with him). I do feel better off meds then on them but I do get scared and every ache and pain I get even more scared, my local keeps saying I need to go on meds (he says that Hopkins is the only experts that feel that way). So I'm pretty confused and I am going to try a lower dose of HU 300mg and if I get the same side effects I got before then I'm going for pegasy, my local is very agreeable to it. I am afraid of Anagrelide as I had AFIB in the past and the expert I see says he will not prescribe it and if I wanted it I would have to go to another Doctor?. It is confusing to say the least! but if you have no symptoms are in the 800's it would be up to you and I really think we are our best advocates by the way what mutation are you???. You can always stop the HU. Good luck with your decision!

  • I don't know which mutation I am. I was never told anything other than I had ET. Should I be asking those questions at my next visit ? What do I need to know ? I am getting more confused as I read someones experience and think perhaps I should accept treatment and then read someone elses and think maybe not ! Also I didn't know you had to wear gloves !!! That sounds scary in itself ! Thank you for replying

  • Hi I understand the confusing side, I have been confused and scared for a year now. You have to rely on your Doctor, mine looks at all the blood work not just platelets. Like I said try the HU you can always stop or wait that is what is soooo scary about this disease, it is someone saying they had a stroke or heart attack etc. Glove yes it does say wear gloves but I did not! it comes in capsules and unless the capsules breaks open you should be fine. I asked the pharmacist and he said it just so no one else gets it on the skin because it can be absorbed through the skin. I agree that is scary! but it is a mild chemo, they gave it to children who had sickle cell anemia. You have to be your own advocate, I keep holding back on meds but my platelets are climbing so I will be trying something. Good luck.

  • I have had ET for about 6 years - maybe longer and not diagnosed? However, I had a heart attack when I was 64 but the consultant did not start me on hydroxycarbamide until this year (I am now 69). Previously, I took aspirin along with lots of other blood pressure drugs. I get some side effects but nothing really scary - I was very nervous at the beginning but feel more confident taking

    hydroxycarbamide now. I take only 5 capsules per week - one each weekday and have a free weekend. Hope this information is of assistance.

  • Hi JuneKnox why did they hold off after your heart attack? and how high were your platelets?

  • Hi Jodary,

    You don't have any symptoms like dizziness, fatigue, headaches or tingling and numbness in extremities?

    Just curious. I am 53 this year and stable Platelets at 1200 and ASA. Will be asking the same questions in a few years. But I have the above symptoms.

    digijools

  • No, no symptoms, that is why I am reluctant .

  • Hydroxycarbamide will lower your platelets, and make you feel better.

  • Well I tend to get every side effect to drugs listed and so far my specialist in Toronto still wants to avoid drugs for me.

  • What is your age and platelet count if you dont mind me asking ? And are you feeling quite well in yourself ?

  • Sorry getting confused with my replies.. I also get side effects to every tablet. Even antidepressants for my ever increasing anxiety made me ill. X

  • I am 69 years old and only started treatment this year (other than aspirin). I had a heart attack in 2011 but my symptoms have been under control with the usual medications. I think I may have had this disease for a long long time but have only had my blood monitored over the last 5/6 years. I would just go with the advice of your consultant - everyone is different. I hope this is helpful for you. Kind regards.

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