Saw big chief at hospital today

Hi was told in a nice way , i need to start hydroxycarbamide , because of risk to me if i was to wait much longer or i could

get more symptoms than i have ! The registra i had been seeing was holding off for whatever reasons , anyway consultant today said i need to ! I started feeling upset and scared i said about my daughters wedding in Sept and re side affects of the drug . being it an important day Lo and behold he agreed i can start treatment after wedding on the 17th! so seeing him 28th ,have to say the leaflet he gave me to read on the chemo scares me ,re could get these side effects 😞

32 Replies

  • Hi, I was in the same position 3 weeks ago. I had been putting it off myself or various reasons, mostly being scared. 3 weeks in now on Hydroxy and do not feel much different apart from constipation. This I have counteracted by buying pure liquorice from ebay. A thin stick a day keeps the constipation at bay. lol. Don't be scared like I was. Yes maybe somewhere down the road we may get more side effects but I felt I needed to give a chance now before I hit big trouble. Enjoy your daughters wedding, forget things for the day.

    Best wishes.


  • Thanks Anne , yes i know what you mean i was advised not to wait anymore , i will look forward to wedding first and foremost Lisa is 41 and her first and only wedding (her words ) haha a happy occasion of course x

  • Hi catwoman2015,

    Please don't worry unnecessarily. You may get few or even no side effects. I have been taking 500 mg of hydroxy every day for the last 3 years ( since I was 59) and I can honestly say I have had no side effects at all! Maybe I'm lucky as I know it doesn't agree with everyone, but you may be lucky too. I worked full time until 1 year ago, then part time and have 6 grandchildren so I am very busy. I have more peace of mind that I am less likely to have a stroke from high platelets.

    If it doesn't suit you there are alternatives.

    Enjoy your daughters wedding.

    Judy x

  • Hi Judy ,thank you , i have to admit i do worry re stroke etc , im 64 now so at high risk so will do as i have neen advised and hope im fortunate like you and others to tolerate medication fairly well best wishes to you Holly x

  • Hi Holly

    I was scared when I started it too butbive now been taking it for over two years with no real side effects . I take 14 a week at the moment .

    The thing is after taking it for a few weeks I felt so much better maybe I've been lucky . I do get fatigue days but mostly put it down to the ET itself or the fact I have 11 grandchildren lol .

    Enjoy your time between appointments and it's lovely you have the wedding to look forward to .

    When you start the HU we will be with you all the way .


  • Bless you Helen , gosh 14 seems alot , he will start me on low dose 500mg week tthen twice a week so im eased in slowly , i get fatigue now anyway and i have one grandchild im a lightweight eh compared to your 11 ! you and i are same age eh , yes am feeling better about Lisa wedding now it will be a long day for me ! 12 hour phew best wishes Holly x

  • Agree with what other members have said. . I would say you are more likely to tolerate it than not, and I'm surprised your Hem agreed to delay your start date. That's your choice of course. I can understand your reservations but you still had time before the happy event to see if you had any unwanted reactions to the Hydrox. . . Having said that I don't think a few weeks will make much difference either way.

    The key thing is to not be worrying about it looming ahead and concentrate on having the best wedding possible as we need these milestones to spur us all on. Hope you've got your outfit and fascinator to set it off. , Chris

  • Hi Chris , yes i think it was because i had tears in my eyes , what a woos i am , compared to what you have been through , i need to shape up, i also havent seen this consultant before ,its always been a registra she usesd to delay putting me on drug , saying i would get dry itchy skin and maybe mouth ulcers , but i said to my hubby ,well if thats the worst that can happen ,it dont seem to bad !! yes got all my outfit thanks and the fascinator , shoes may have to be changed by the evening , a tad too high for me these days haha may take my slippers , but not a good look me thinks hope your doing good best wishes Holly x

  • That's good you got all your best bib and tucker all sorted. . I'm sure your slippers will be very welcome after spending most day in heels.

    But I need totell you off as it's not a matter of being a wuss, it's th fear of the unknown and taking any drug that alters your being is a big deal never mind one that is cytotoxic. Post transplant I still take about 15 different ones daily mostly AM and some repeated PM to total about 25 or so. And I don't like it for sure. But I'm under docs orders and you gotta put your total trust in them.

    Mouth ulcers are a very common side effect nuisance of taking Hydrox. I used to rinse with mild salt solution, don't waste cash on over counter stuff. Doc might prescribe a mouthwash. Chris x

  • Thanks Chris ,your a gem .ps i hope you dont rattle. hehe x

  • Hi I have E T and started taking it 5 and a half weeks ago I have no side affects. I had one appointment at hospital after 3 and half weeks and my count had gone down from 624 to 484. Had to take it because I am 63.

  • Hi Hannah ,ditto my age a factor also just 64 now with ET jak 2pos

    and he wants my numbers under 400 how much are you taking a week . its great that most people take it fairly well all the best to you Holly

  • Hi Holly I take 500 mg a day

  • He said i will take 500mg say on a sat to start with ! he wants my platelet under 400 , do you know if this treatment is stopped once platelets at low reading or is this a life long medication ?

  • Hi Holly, hey what are your platelets now? I like you I am holding off on these chemo drugs too! USA have had some not so good reports of chemo medication. Your choice of course. Luv Lyn NZ xx

  • Hi. Lyn, just. under 600 , i have a few other health issues also so cant hold off any longer to risky , been 18 month just taking asprin . plus im 64. now so time to give in and obey Doctors orders best wishes Holly

  • Hi Holly I know you have been dreading tstarting hydroxy for ages and can understand why you want to wait and not risk spoiling your daughters big day. Please don't worry, as the others have said the side effects are not necessarily as bad as you think. I have been on it for 3.5 years and don't think about it too much now, though like you, I worried at first. Have a lovely day at the wedding and let us know how it goes. Karen x

  • Morning Karen, Thank you , i suppose its also relisation that this illness is becoming more real to me once im on HU in some ways last night i wished i hadnt read the leaflet hosp gave me on the drug ! my husband read it as well , But i agree with all that my friends on here have posted to enjoy the wedding first and foremost . and will tell you all about it i will be seeing family i havent seen for couple of years And my daughters American friends coming over too from meeting them when she lived in states for 3 years with her partner for his job best wishes to you and hope you stay well Holly x


  • Hi Catwoman

    The Jedi is spot on as usual, wise and brave. I think it's the fear of the unknown and not understanding our condition which preys on us most of all. You are not a wuss and you are amongst friends.

    Trust your Heam, don't be overawed or frightened to talk to him/her and have a list of written questions when you go for a consultation (take a buddy if you like).

    Remember that your GP, Dentist and the Registrars may only encounter a case like ours a few times in their careers, so we can't expect them to be much more learned than what is printed on the packets of the meds. OK, I exaggerate, but they are not superhuman, under pressure and we must not put unfair expectations upon them.

    In general, the benefits of HC for the majority of us far outweigh the drawbacks. If the side effects are negative, the Heams may have an alternative.

    The wedding of your daughter is one of those landmarks that we all dream of and I sense your family's day will be fantastic and filled with joy and love. I find it difficult to take my own advice, but we owe it to our loved ones to be as resilient and positive as possible, and try our best to be as well as we can. They empathise with us, while they also worry. Our families look to us for a positive lead and there is so much we can achieve.


  • Thank you dd. yes your right like so many on this forum are ,my daughter is 41 and its her first marriage coming up ,she said only intends to do it once ! (unlike me twice wed ) ! haha but yes she worries about me so i play alot of it down but i know she not a child anymore but guess in mums eyes they always will be best wishes Holly

  • I have been Hydroxycarbamide for nearly 11 years now. I have E.T.JAK neg, Cal positive. I was very closely monitored for the first few months and am still checked every 2-3 months. I can honestly say I have not experienced many of the side effects of the mediation but every one is different. I am 65 now and was diagnosed when 53. The taking of the tablets is now just part of my daily routine but I do remember how worried I was when I first started taking them. The side effects have to be put onto the leaflet but not everyone will experience them.

    Enjoy your special day and try not to think about your MPN - I don't know which one you have.

  • Hi mol56, i have ET jak 2 pos , unlike other chemo treatment ,i take it HU is permanent for life then , my family keep telling me its just a course , ! if my platelets go down to under 450 will tgat mean i wont need this tablet then ? Thats good your doing okay on meds ,best ishes Holly im 64 now

  • Hi Holly, I know exactly how you are feeling, I felt the same when I was given my first prescription for Hydroxycarbamide, I cried, but having been on them now for about 7 years I can only say that I wouldn't be without them, they have made such a difference to my quality of life, I suffered really badly with dizzy spells, head pains and fatigue before I started them, which is why my haematologist put me on them, but now, I only get these symptoms now and again, whereas before they were constant. I was diagnosed with ET 13 years ago, I am now 56, my platelets are now nice and low, 335 at my appointment last week. With regards to how long you will be on them, you won't stop taking them if your platelets go down, you will need to stay on them because of the risk factors associated with having ET and being over 60, you will be monitored on a regular basis with blood tests and you may find that the dose will go down, and sometimes up. If you find that you can't tolerate them your haematologist will be able to give you something else. With regards to the side effects, they do sound scary when you read them all, I did get and still do, very rarely now, mouth ulcers or a sore mouth, but nothing so drastic that I can't cope, and as Chris said, a mild solution of salt water to rinse your mouth helps enormously. I did also notice when I first started taking them that more hair came out when washing it, but that soon settled down, and as you probably know, I bleach and colour my hair blue, and it still hasn't fallen out. So my lovey, all I can say is, we all know how you are feeling and you are definitely not a wuss, and I hope the wedding goes well, and I agree with you about your slippers for the evening, I had to resort to flip flops at my nephews wedding last month as my shoes, though fabulous and extremely over the top bling were definitely the sort of shoes you just sit down in and not prance around in. Love Maz x x

  • Hi Maz, what a wonderful long reply you posted. its made me feel heaps better as im sure when others read it so will they . And i have same symptoms you described before you started treatment ,which i have had for some time although like most on here say heamatolgy seem to dismiss especially the fatigue , im very grateful to you for taking time to explain more of the symptoms prior to treatment , i keep thinking i hope i feel lots better by taking the medication! so i thank you from bottom of my heart and also all my friends that have posted encouraging words ! good idea about flip flops i will get some . even my daughters changing from her wedding shoes in eve to open toe low heel shoe well she is now 41 haha All the best to you and team on here and for all you do best wishes Holly 💐😊 x

  • Hi catwoman , glad all went ok with main man , been on hydra 6 years now few symptoms but have had two strokes in past so none said nice taking hydra so if helps small price to pay , not everyone has side effects but it's helped bring my platelets down so all good , good luck hope all works out for you xx Chrissie x

  • Thank you Chrissy ,you take care look after yourself Holly x

  • Hi Holly , you've been given the best advice, I know exactly how your feeling

    The dreaded HU word !!!!

    But really it's a pussy cat , It really isn't the green eyed monsterits made out to be , after my Tia 3years + I've been taking HU , with very little side affects,

    The odd mouth ulcer & fatigue I'd rather have that , then a stroke , all I can say is drink plenty water ,

    limit alcohol & eat healthy , you will be fine , xxxx

    Just go to your daughters wedding & enjoy every minute post some pics

    Take care

    Love Pam xx

  • Bless you Pam , yes will post pics of wedding ,Time going by so fast not long till 17th sept hope its not too hot haha we are in Uk but ... weather so erratic eh! Dont know if its a symptom of ET but i dont like being too warm i cant cope when im over heated was at a bbq last night i was last one to put thin jkt on even ! Then after a while took that off haha , my mum of bride dress got lining in so hope its a bright day but chilly oops good job this isnt fb Lisa tell me off she feels the cold !! cant drink much alcohol at all now glass beer best or small red wine or rose ,dont think it goes to well with meds i already take . so will have to feel jolly on life happiness for them ! Thanks for being my friend young lady you take care of you and yours love Holly x 💐

  • Hello Holly, we have met in the past and just to remind you and anyone else on here, that in 1983 I started Hydroxyurea as it was known then and was on it in various doses until 2013. In 1983 I thought I was getting old, due to various symptoms such as giddiness, headaches, painful lump in the left side when I lay down in bed, prickly skin when washing and showering, and very dark urine. Why on earth would I associate that with a blood problem? Anyway, I was put on Hydroxy and soon the bloods became more like the experts thought they should be and I felt much better. The headaches ceased and bit by bit so did the itching (which is much too flippant - prickly skin was much more my feeling and painful too).

    I did have mouth ulcers a lot of the time and went to the GP quite a few times about that problem, but nothing could really be done other than a mouth wash. You are an age now where you should get prescriptions free, but Chris's advice of a saline wash in the mouth is as good as anything the chemist can supply. Another problem which came sometimes was a red and a bit lumpy face, but another ointment supplied by the GP helped to ease those symptoms. From my point of view I was glad that the bloods were in control and hence reduced the chances of clots and I felt better. I needed to go on Omperazole to reduce acid in the stomach, but that was more to do with the rotten blood than the Hydroxy. Due to the blood I was also put on Allopurinol to reduce the chances of getting gout, which I have had a couple times and not very nice either.

    My blood has turned to MF in about 2012 and I am on Jakavi / Ruxolitinib which seems to be working well for me. I am 70 soon and have just returned from a motorcycle holiday to Florence and back to Bristol, hence the delay in reply.

    I hope this rather lengthy message is useful for you. Try to keep positive and do enjoy life.

    I wish you well and hope to see you at another Patients Meeting event somewhere or other. From Michael S

  • Hi Michael , yes reading your post as helped, thank you , i said to consultant will i feel alot better on HU , and his reply was i would only be feeling unwell if my platelets were over 1000 ! however i have headaches more , and get dizzy more , i feel hot at times and chills also this awful fatigue ,but no one seems to say much about these symptoms ,i know fatigue is mentioned alot on here ! So yes will see what happens during time im taking the chemo treatment , sounds like you had a great holiday ! Had a bit of a meltdown today but will try and stay upbeat i know there are folk who are alot worse off take care regards Holly

  • HI. There is nothing wrong in having a bit of a melt down!

    I'm sure most of us have them, I certainly do. We wouldn't be human if not.

    It is really hard to stay positive all of the time but for most of the time will do me.

    The symptoms you describe - hot at times and chills and fatigue are symptoms we all seem to get at times. On the positive side, my headaches have definitely decreased since I have been on Hydroxycarbamide.

    Take care

  • Thank you mol56,think no its hair thinning ,, now thats got me too being a woman hard eh you take care Holly x

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