Newly diagnosed

Here I am newly diagnosed with ETand also tested positive for Jak2 and trying to decide when to start the HU. I am rather afraid of this drug and wondered if others have experienced hair loss, weight gain etc., etc., I am 64 so I fall into the criteria of a risk for stroke or heart attack so my haemo told me. I questioned him as my platelets are 700 now slowly rising from 640 last year. My symptoms are bruising and tiredness. I am guessing I have had this for a while as I kept noticing blood spots under my skin over the past few years actually and everyone just said it was thinning skin! I am not overweight, blood pressure normal, so wondered if that would make me less risk for stroke as it seems they just put you into a certain criteria without checking other areas. My haemo phoned me to discuss this and he said I fit the criteria, yet he has never met me or seen me so doesnt know if I am normal weight etc., etc., confused totally.

31 Replies

  • It's great you found this site. Everyone's experience can be different even though we can have same diagnosis! In terms of high risk for stroke my understanding is that platelets clump together making you more at risk. If ever you had a TIA that also contributes. As for weight I am under 8 stone but at risk of stroke! good luck with everything I am sure others will give reassuring answers. Bruddery

  • Hello and welcome. I'm sure you'll find lots useful information and support on this site. I know I have!

    I was diagnosed with ET earlier this year and am on Hydroxycarbamide. It's been a tough journey for me though many others have no or few problems.

    If you get chance you may like to check out my posts which will give you some insight into my response to Hydroxycarbamide.

    I wish you all the best x

  • Thank you YogaLover as I read this I am so tired and I havnt yet started treatment it is like that with me. Always tired must be my symptom. It is still morning and could sleep. I think also I am tired trying to decide when or if I should start treatment. I only found out on Wednesday so still stunned and quite sad too. Thank you though for the support.

  • I just wanted to say that I am one of the fortunate ones with few side effects from HU. I felt better immediately my platelet count began to drop so take heart and the few side effects began to disappear.... it could be the same for you.

    Like you, I was stunned at first and rather frightened when I began to read the info available. Now I feel positive and find the fact I can ask questions on the site gives me confidence. I don't feel so alone anymore. I question my haem and am beginning to learn to -as the NHS puts it - be the 'manager of my illness'.

    Good luck and try to get to one of the forums - the best thing about them for me was I discovered I wasn't the only one!

  • Hello I was diagnosed with ET and Jak2 last month and started taking Hydoxycarbamide 3 weeks ago. It's all very frightening at the beginning and bewildering. I wasn't given an option or alternative and was told I'm in a high risk category as I'm 65. It was tempting to get a second opinion but only because I wanted to hear some more positive news I think not because I didn't believe the consultant. So far I'm happy with my NHS treatment, I think I have a way to go as the once a day dose hasn't been successful in reducing my platelet count, it's 950. I've been reading on this site about patients taking Pegasus which seems to be a drug that's taken less frequently I'm going to ask my consultant about it. She assured my Hydoxycarbamide has been around for many years and is a first line drug for most patients and that many suffer no side effects at all. So far I haven't experience much other than a bit of tiredness and a strange taste in my mouth, time will tell I suppose. It is important to keep reminding ourselves that we are all different despite having the same or similar complaints. The platelet count and other reasons like the Jak 2 and high levels of blood cell counts contribute to how we feel. I have found this site a huge comfort though as its a lonely business despite having loving family and friends around. There's nothing like hearing from people who are experience the same feelings, problems and issues as us. Keep writing.

  • Kyls- I know you are scared, but I would strongly recommend that you take the docs advice. It is the combination of your biochemistry and your age that put you at risk. I was diagnosed about 6 mths ago and started on meds immediately. I am only 48 y.o. and fit ( go to gym 5 x week) with no prior health issues. Out of the blue I had 2 strokes when my platlets were only at 453,000. I argued with the Mpn experts about the meds and realized that they were in fact needed.

    You may not like it , but let me assure you that they beat - catastrophic stroke or a heart attack. Please listen to your docs. If you do not understand- do what I did....ask him to keep explaining until you understand. Good luck to you....

  • Hello, I'm sorry you are feeling worried at the moment but please don't believe all you read about HU and side effects. I have been on it for most of the last 27 years with basically no problems. We are all different and whilst it is awful for those who do experience nasty side effects, that doesn't make HU a bad drug - just not suitable for a few of us. Good luck. Fee

  • Hi - I have ET, and as I was getting close to 70 and platelets were 8-900 HU was suggested. I did not want to take it. I have been on it 3-4 months and my count has decreased each month. I have had very few symptoms on taking it. I wanted to mention that I had been quite tired, but my regular Dr found my thyroid medication was not working properly, and that did decrease my tiredness. I have not gained weight, I think my hair might have thinned I'm not sure, my hairdresser suggested that my hair might be changing as I'd stopped dying my hair. I'm not wild about being on it - and totally sympathise.

  • Hello,I was diagnosed with ET in June and as I am 62 was put on HU straight away.It has taken me from then until now to come to terms with it. The worry was worse than the reality for me as I am just tired a lot,specially after working all day. I imagine it would be much the same without the drug given my age! Good luck and try not to worry...stress is a killer!

  • Hi klys, welcome to the community.

    I have e.t jack2 neg , I'm 45 and had a stroke when I was 43.

    At the time my platelets were 540 , I was only on asprin at the time, I then had to go on hydroxy....I was very scared but was told I'm high risk now because of the stroke .

    I'm managing very well it's been two years and can honestly say it's ok for me , I know we all are different .

    I expected hair loss vomiting etc didn't happen . I do feel fatigued which I felt before treatment anyway.

    Wish you all the best with the treatment .

  • Hi I'm 53 , I have ET jak+ and Bechets disease, I was put on h.u because of my symptoms, I actually couldn't be more pleased!! I didn't lose any hair, or have any of the more frightening side effects u hear of. I immediately felt better, although I do have my off days. I would try it and see, it can only help!

    Don't be frightened, there are lots of people, u can chat to on here, who understand, the fatigue, the fear, and all the other stuff that goes with being diagnosed with an MPN.

    Take care xx

  • Hi

    I was diagnosed with ET in April and as I am 66 was put on HU 11/day. At first I was very tired but now I feel better. My two problems are mouth ulcers which I tread with mouth rinse and my hair is thinning 😟

    I wish you all the best, W

  • I have been diagnosed with ET for 6 years and have been prescribed HU for the 6 years . I am now aged 73 . and in excellent form . I am seen by consultant every 4 months . I was first seen at Hammersmith Hosp london and now Western General Edinburgh . Both departments have been so caring that I feel the care goes a long way to enjoying life with ET . Hope you have a good GP who will arrange appointment with consultant for you . Do stay with MPD voice lots of support .

  • Hi - I was diagnosed in July - high risk and a little older than yourself. Looks like I have this condition for a very long time..... Since I began Hydroxy my platelets have fallen like a stone. It does take 3 months for the effect to be fully appreciated - I am feeling so much better. Macmillan Care Line persuaded me to try the drug - like you, I was afraid - I could always stop if I wanted, there was nothing to be lost by giving it a try..... side effects so far are minimal and I hope they stay that way. (I have lost weight.) Try for an appt with your Haem - take a list of questions - get answers. Are you having blood checks? Finding this forum is a good start - you will always have friends and someone to chat with. Your confusion will clear and you will begin to take control. My best wishes, Sue

  • Hi,

    Like you I have ET and Jak2 positive. I was diagnosed in 2007 when I was 58 and my platelets were 635. I took just aspirin until July this year when my platelets had risen to 900. Just like you, I felt that I was healthy, not overweight, blood pressure and cholesterol normal so, despite being well over 60 I resisted taking hydroxycarbomide fora number of years because the thought of it really worried me more that the ET, until the dreaded platelets hit 900!

    I've been taking it now since July, 500mg a day and so far so good. I haven't noticed anything untoward so far and I feel no different apart from, a good thing in that my feet are no longer hot and uncomfortable in the heat or in bed!

    So far platelets only dropped to 605 so I may be under pressure to take a higher dose.....hope not!

    I think we all know our bodies best and I guess I knew it was time to take it. However, I had decided that if taking the drug made me feel worse than without it, then I would stop as it's all about quality of life.

    Good luck with your decision......I found it a hard one to make, but so far it seems OK, although the thought of taking it long term does still worry me.

    Wishing you all the best, and as you can see there's always someone on here that you can talk to,

    Best Wishes Gill

  • Hi gillyflower your reply has made me feel so much better as you mention hot painful feet. I was only diagnosed with ET and Jak 2 last month. I was suffering with that for the last 2 years, I've been seeing a podiatrist and had orthotics made, which only helped a bit. I was told last Thurs that my platelet count hasn't dropped at all on my one a day HU so I've had to increase it to two a day at the weekends. I was fed up about hat but to date have had no more side effects. You sound quite positive so it's good to hear some good news and that it isn't all bad with this complaint.

  • Hi, Im 51 and diagnosed with ET and jak2 negative a year ago. I take aspirin every day and have found that my platelets go up and down. I am lucky have been told im low risk but still got very upset and confused when I was diagnosed. I ve got my head round it now and manage my condition. I try and keep fit doing Pilates, jogging and exercise at the gym. I also suffer badly from sciatica which is painful , and it affects both legs. I just wonder what bit will go wrong next. Then when I look at what some people go through I stop moaning. Its hard sometimes but at least there's this group to help.

    keep positive.

  • hi There, I am newly diagnosed also and I too am scared of this drug HU, its the fact its a CHEMO drug and its going to kill good cells, mine have fluctuated over the past year, 550, 750, 650, 712 and then I got sick and it shot up to 801. I am also 64 years old. My risk factor for a stroke! Let me know what you decide, I am thinking of a second opinion not that I don't like my Hemo Dr its just you want someone who is experienced in this MPN. There is a new drug call jakifi which is very costly but I was told by a well know cancer center here in the US there is help to pay for it. Mickey

  • Hello Klys, welcome to our forum, I can see that you have had many replies to your post, and as you can see, we all understand how you are feeling as we have all been there, I hope that all these lovely replies have helped you. I can post you some of our information booklets on Hydroxycarbamide and ET, email me with your postal address I can also send you information on having a buddy which might help you, having a buddy to talk to can help as the buddy has the same MPN as you so can give help and advice from the perspective of someone who really understands how you are feeling. Best wishes, Maz

  • Hello I read so much of these posts all very helpful and kind. I have read horrible stuff about the medication HU hair falling out, nails turning black and falling off, have I read correctly? Sounds horrendous though some people seem to be okay and not sufferingtoo many side effects. I am still confused and it is now 7 days since my diagnosis, maybe I need more time, but the medicine terrifies me but at the same time I know it is necessary to protect me for something worse.

  • Sorry forgot to ask also why do we have to stay out of the sun with HU really? I live in cyprusnhaving retired here so almost impossible. What does the sun do to your skin with HU?

  • Hi Klys, some people have found that their hair does get thinner and fall out, but not in massive clumps, and your nails can become brittle and break more easily, these are rare side effects attributed to Hydroxycarbamide and not suffered by everyone who takes it, and those that do experience these side effects do suffer them in varying degrees. With regards to the sun, yes, you do need to protect yourself from the sun when taking Hydroxycarbamide as your skin can become more sensitive, you should wear a good sunscreen, protective clothing and a hat, and also make sure you keep well hydrated. I appreciate that as you live in Cyprus you are exposed to the sun all year round, but if you are sensible in using a sunblock etc you should be ok. I can understand your fears, and it will take you a while longer to understand it all and come to terms with it, but there are many people around the world who have been taking Hydroxycarbamide for many many years and are doing ok on it, I have been taking it myself for nearly 7 years and can say that it has improved my quality of life in that my symptoms of dizziness, head pain, confusion, are much less in severity and frequency. As with any medication for any illness/condition, we are all different and react differently, all I can say is, try it and see how you get on, if you find you cannot tolerate it then speak to your haematologist for their advice on other medications. Kind regards, Maz

  • Another medication prescribed also with the HU she gave me medoprazone to protect my stomache from the daily asprin? I havnt had any problems taking the asprin and do realise long term use could change that, but this extra drug will also have side effects, hopefully it is not too toxic. I guess we always have to way up the good and the bad of everything when being treated for ET. Anyone else prescribed this drug or something similar?

  • Hi thank you for all your avice, all sounds acceptable. I came back from Scotland last week where I had the diagnosis and advised to take HU as I fit the criteria as high risk being 64. I went to the haemo here in Cyprus and she says I don't need it and age doesn't matter!!!! I am horrified, I never thought for a moment different countries would have different treatments. She actually said, have you had a stroke? I said no so she said she gives HU to patients IF they have had a stroke! I am gazzumped! Will phone my doctor and try to get a second opinion somewhere but not many haemos here.

  • It has been nearly two weeks since my diagnosis and reading all the wonderful posts from all u guys on here! I am still wavering over taking HU and wondered if anyone tried to reduce their platelets with selenium and vit c? I read it somewhere and I know deep down I am grasping at straws but also with some hope! I am sure everyone on here would like an alternative to the dreaded HU guess I am still in panic mode though a tad more reassured after reading all ur wonderful posts which are quite uplifting.

  • Hello everyone. I started my HU 500mg three times a week today, swallowed m first pill expecting something awful to happen, still waiting in fact, just feel eerie actually. My platelets jumped from 720 to 840 in two weeks so that decided me. So here I am and go back in two weeks for a follow up. Will keep you all posted of course. I do wonder now what are the possible consequences of sun on my skin as I live in Cyprus and I was an avid beach bunny haha yes at my age 64. What does the sun do to your skin really when on this drug>

  • Here I am on my second day and just taken the Mezapratzone I have to wait until lunchtime for the asprin which my haemo advised then the HU also. Went to bed last night expecting goodness knows what, but I didn't turn orange so woke up realising things might be okay after all. Sorry if I sound paranoid, but finding this all very frightening, also praying it works as as I am only on 500mg three times a week, hopefully my next blood test in two weeks will have started to lower the platelets. Still have very dry eyes, when I mentioned it to her she didnt connect it to ET at all? Also hope I don't gain weight, always been a weight obsessed person, oh dear now I am rambling, thank goodness I found this forum, somewhere to ask for advice and to find people with the same feelings..........I feel the medicines cause more worry than the ET.

  • Hello Klys, I know what you mean when you say you were waiting for something to happen when you took your first tablet, I was the same. With regards to the sun, Hydroxycarbamide can make your skin more sensitive to the sun that is why we advise people to use sun block and cover up, long sleeves, a hat etc. Maz

  • Hi Klys, there is no evidence to say that selenium and vitamin C will reduce platelets, and if you do decide to take any supplements or vitamins you must check with your haematologist first. Maz

  • Hi again everyone. Back again and just starting my second week on HU with trepidation. I am already suffering constipation even though drinking masses of water. May I ask if anyone here has tried or thought of trying homepathy for ET as I cannot imagine taking this medicine indefinately, I feel I might be going down a terrible road with drugs etc., I am on asprin, something else to protect my stomache from the asprin and also HU. For someone like myself who has avoided drugs all my life except when absolutely necessary I am still trying to find an alternative for this disease. I know no one wants to take HU but maybe Homepathy could help also....?

  • Hello again. Also I have a lot of red blood marks on my arms, is this with the asprin or the HU? I seem to have more recently as started my HU two weeks ago also woke up with a swelling on my cheek? Still feeling panicky since I started HU not sure what to expect.

You may also like...