Just started Hydroxycarbamide this week but feeling very resistant & to be quite truthful, scared!

Recently posted a question re alternative entry sites for venesections but after discussing this with my consultant, he's now prescribed Hydroxy as the alternative. My veins were hardening due to the regular blood letting-just having a simple blood test on Monday last week proved trying for the bleeder (& me!). Sooooo, the Hydroxy it is (chickened out the first time I was prescribed it) but how can an oral chemotherapy drug which is recommended you don't even touch with your fingers be safe to ingest?!!! I'm feeling very wobbly about taking it with all the potential horrible side effects so I guess what I'm looking for are some reassuring posts from you guys as to the positives. I also think it's the reality that's kicked in that my condition (PV/ET-JAK 2 +) may be moving on & I need now to come out of the warm waters of that lovely river in Egypt - de nial! Anyone in a similar situation in Dorset or who has just started with Hydroxy?

29 Replies

  • hi polly, the reality of pvr/et is that there are not many management tools . i understand your apprehension re hydrox- it is a bone marrow supressant which supresses the production of blood cells and is an alternative to bleeds. just wash your hands after taking it and you should be ok. i started hydrox and had a reaction to it, and have relied on venasections for several years= but a side effect is that my iron count is so low, im chronically tired, so will probably start interferon in the new year, and maybe swap between the 2 . good luck, karteeka

  • Karteeka,may I ask you do you have our trial drugs on offer?? Ruxolitinib is the one I am taking now ,I'm very well .even my aches n pains ,better !

  • Hi PollyPV I understand exactly how you feel, when I first started Hydroxy 2 years ago this month, I was terrified, I cried all the way home from the hospital and then more. However, my ET is really under control now. The only thing was I had to take 1000 mg a day and I was taking them in one go, this upset my stomach a little, so was advised to take one in the morning and another after tea, this really helped and I don't notice any difference now. Once you get in a routine and realise you won't light up in the dark you will settle down, but it is so daunting at first as it is all new. I read all the side effects and scared myself to death but thankfully I can honestly say nothing happened. I think as time goes on you become more confident. I know other forum members haven't been as lucky, so its a case of seeing how you go on. Best wishes :)

  • Hi! I've been on 500 mg Hydroxycarbamide for ET for 2 years. A few side effects to start with - mouth ulcers, reduction of hair on upper lip and very dry skin. Have adjusted now and feel very well with mouth ulcers hovering but not a problem. Don't be frightened. I was at first. However, now I see it as the thing which enables me to live a full life. Good luck. Hope it goes as well for you as has done for me. Sallie

  • Some of us would welcome less hair on the upper lip!! (Glad you are coping well - hope I do too)

  • Hi Polly, I started on Hydroxy 2 months ago, after 8 years of venesection. I tolerate most drugs pretty well and I have had no side effects so far, apart from one tiny mouth ulcer which I didn't even realise was there until I went for a hygienist appointment at my dentist. I started on 500 mg per day, my platelets in the two months have reduced from 800 to 380. My heam says if I am down to high 200's when I go back in January he will reduce my dose. Don't be scared, give it a go and see how you get on. I am in Devon by the way. If you want to correspond via e mail/telephone, just let me know.

    I hope you tolerate it as well as me, if so you won't even know you are taking it apart from better blood counts!

    Good luck


  • Hello PollyPV - at the risk of repeating myself coz i seem to have mentioned this fact sooo many times it scares me, I have been on Hydrox this past 7 yrs but there is a lady on here I recall saying she had been on it 18 yrs so Im a fledgling. Obviously everyone reacts differently but I can assure you that I sat down after poppin me tabs in the early days waiting for some sort of adverse reaction to completely poleaxe me. But it didn't come. I won't say I haven't been fatigued, and had an occasional red cell top up when the Hydrox caused anaemia, but by and large they've kept me on an even keel thus far. So you will just have to suck them and see - no don't suck them they taste bloody awful as I had one or 2 caps stick and break in my mouth over the years. I wish you luck but please don't spend your time fretting and lead your life as normal. Cheers

  • Oh yeah just read Piggies response and reminded me that the occasional mouth ulcers are a nuisance factor.

  • Wow! Thank you all! Feel so much better for reading all your experiences and reassured that I can only give it a try - if it suits great, if not it's Plan B. Which I haven't a clue what that might be! But I gather from this forum there are alternatives so again, that's good to know. Thought you'd all like to know I championed this site when talking to my consultant who was under the impression it would be more negative rather than positive. I told him it reduces the isolation you can feel having this obscure condition & gives you the opportunity to make informed choices on treatment as well as learning of new developments regarding trials, treatment etc. Simply sharing is so therapeutic. So thank you all who replied & to Judy, I would love to be in contact with you as it seems we're pretty similar in where we're at with our MPDs! Unsure how I give you contact info though?

    One last thing, I can't find alcohol contraindicated on Hydroxy- ok to have a glass of wine still whilst attempting to cook & produce something vaguely edible?!!

  • Hi PollyPV,

    I have sent you a personal e mail with my contact details.

    Yes you can drink while on hydroxy - Phew!. You just need to be careful in the sun.

  • Avoid hydroxyurea, it is leukemic over time according to MPD expert, JJ Michiels.. Ask for Pegasys, it is weekly interferon. And a baby aspirin daily. Interferon can have a positive molecular aspect and put you into a full or partial remission. But stay on phlebotomy for as long as you can, for some on phlebotomy platelets increase with phlebotomies. Insist on a 22 gauge intracather with vacuum bottle, the 15 ga collection set up for blood donations will over time collapse your veins. If you develop phlebitis or a TIA, then it is time to consider interferon. Check for gout. Go see an expert in MPD at least once, Professor Tony Green or Claire Harrison in London. Females phlebotomize down to 12/38, hematocrit/hemoglobin, beg to go that low, most hems like to use 45, it is too high esp for a female. Robert, PV 1990, on interferon Intron-a since Feb 1995. List administrator mpdsupport.org and on Facebook.

  • Hi I have been taking Hu now for over ten years and yes there are some side effects but we are all different and some people experience very few. Talk to your hem about your fears he/she really are the best for advice. We can all give you the support you need but the choice must be yours. Try and research for yourself especially recent findings but still not all hems agree on the subject of it causing Leukaemia. Try not to be put off by the scare tactics of those who are not doctors no matter how insistent they are as I said use your own research. Good luck I hope it works well for you and you do not suffer to many side effects.

  • Well said Malaika.

    I have been successfully treated on HU/Hc for 2 years, with a dose higher than I have seen mentioned here to date (2 or 3 x 500 mgr daily). Apart from my own stigma and apprehension of being on chemo (this site is really helping - bless you all for your company and honesty) , I have had little in the way of side effects other than tiredness. Following on from a suggestion at the recent MPD forum in London, I have switched to taking meds at night. I don't know whether it is what Terry Pratchett would call headology but it seems to work for me. Brilliant! And thank you for the tip.

  • Hi Polly I have been on Hydroxy for a few months now as I have ET, been taking a 1000 mg a day and then at the weekend 500mg and my hospital visit is now down to every three months, I must admit I was very scared to start with knowing that the drug was very toxic so just pop them into a small plastic cup so I do not touch them and Bobs you uncle, then I forget about it and get on with my every day life, so far so good very few side effects, which is very strange for me as I react to most drugs so long may it last, the only thing is that I get just a tad tired by the end of the week, and it takes most of the weekend to recover, but hey if that is all I have to put up with well then I am happy. Please do not take any notice of scare mongers, take each day as it comes and enjoy life. And a little tip if you enjoy a glass of wine either put ice in it or just have water after each one and make sure that you drink plenty of water every day. Good luck.

  • Hi ,Polly

    I have been on hydroxcarbamide for now very nearly 19 years and am lucky enough to have no side effects except perhaps some dry skin on my face from the sun . Best of all it works keeping my platelets on target. I drink wine a as well . The new evidence is that it is not leukemic.

    all the best Town crier

  • OOPS, , , Seems I had you down as a lady in my previous post Town crier - no offense meant my friend as I'm sure there must be ladies who undertake the roll. I think my wife could be a contender when I roll home the worse for beer. I knew there was a bod here on HU for what must be a record time, so fair play to you and long may you continue to be well though it aint a 'record' anyone would want to break.

  • Hi Polly,

    I have ET, diagnosed five years ago. I started with aspirin as the only treatment. I tried some alternative therapies but they only had marginal positive effects. I finally went with my docs recommendation and I've been on HU for a little over a year. I was really scared at first and had many of the same worries you shared. I guess I got used to the worries and set them aside. I have had quite a few side effects with Hydroxyurea. That's unpleasant. I've figured some ways around them. Taking my dose with my evening meal has made the side effects easier to manage. The bottom line is the drug is effective. It manages my platelets well. I also have heard that the idea that HU speeds along the progression to leukemia has been refuted. The whole progression of MPN's is being looked at differently now. I believe a new gene mutation has recently been identified too....maybe it's CLAR...can't remember exactly, anyhow, that's all one non medical persons understanding of information gathered from the internet and list serves like this one. Best bet is to keep checking in with your doc, and yourself! Best to you.

  • Hi Polly. I know exactly how you feel! I was diagnosed with ET nearly 3 years ago, until 5 weeks ago I was just having aspirin but my platelets went over 1000 so the hem prescribed hydrawotsit (can't spell it). I was devastated. I didn't't know anyone else with ET or anyone who had had this drug.. fortunately I found this forum and my fears have been eased somewhat. After 2 weeks on it my platelets were down to 880, so hem said increase the dose to 1000mg one day and 500 the next. I go back on the 5th to see if this has lowered them more. At first I felt sick a lot, but that has faded, I also got a lot of headaches but they too are lessening. I have had a lot more pain in the joints I have arthritis in but that may be coincidence. If that's the only side effects I get I'll be happy. I'm in Yorkshire by the way. Best of luck with your treatment! I think we're all in it for the long haul.

  • I think that town cryer is an inspiration ,to be so well and confident

    After so many years is just wonderful ,,it gives us newly diagnosed

    Real encouragement ,,thank you,..

  • Perhaps i am just lucky,

    My daughter had a non malignant spinal tumour undiagnosed for 3 years by Swindon and Oxford but she was finally treated in Kings College London. It does seem to me that for anything difficult London is the place to be.

  • Thank you so much town cryer for your in put.im extremely lucky to live near Cambridge ,my own doctor is prof green ,he is a dedicated amazing man ,he spoke at the recent patients day in London ,we attended .my treatment was not going so well on hYdroxycarbamide and blood thinning ,so I was put forward for consideration for the Majic trial now I take ruxolitinib 5 a day ,I'm very well again ,side effects are minimal .

    I'm a very active .full of life,optimistic ,even my arthritis is easier ,I think a good healthy diet helps ,even with mood swings,,

  • prof Green is one of the world experts on MPD . He was behind the work that showed for most mpd people especially ET that HU plus aspirin is better than angrelide but of course some people do have a reaction to HU. Perhaps its worst effect can be leg ulcers ,it is certainly a bit rough on the skin.

  • Hi there

    I understand your fear of starting HU. I was told to take this a year ago for ET and was really upset and frightened. There were side effects and they settled down after a few months: being very cold, headaches that are now only minor and there only some of the time, feeling ill and fatigue. The HU must be taken on a full stomach or it burnt my stomach. Having lots of water, 2 litres every day also minimises the side effects. I switched to having HU in the evening which gives me a normal full day and the fatigue now sets in an hour after taking the tablets. If I exercise after taking them I feel very ill so I exercise earlier in the day or if the sport is in the evening, I have dinner, play the sport, eat a hearty pudding then take the HU. After consulting with 3 different haematologists they strongly to remain on the HU and according to them there is no natural alternative that does the job of HU. I was told in February this year to increase my HU from 500mg/1000mg on alternate days to 1000mg daily as platelet count was increasing. This upset me so much. I refused and instead have slowed down my activities and meditated more and that brought down the platelet count. Once again in October I became very active and platelet count went up, specialist recommended an increase in HU which I didn't do and slowed down the intensity and quantity of activity I was doing and meditated more and the platelet count is now coming down again.

    I hope this is of help.

    Catkinspolymer I am interested and thrilled to hear that new research suggests that HU is no longer leukemic. Where about is this evidence or research? I am interested to read about it . Thanks


  • Original Article

    Leukemia (2007) 21, 270–276. doi:10.1038/sj.leu.2404500; published online 14 December 2006

    Risk stratification for survival and leukemic transformation in essential thrombocythemia: a single institutional study of 605 patients

    N Gangat1, A P Wolanskyj1, R F McClure2, C-Y Li2, S Schwager1, W Wu3 and A Tefferi1

  • Thanks again all! The more people post on here, the more I learn! I too would welcome source of the research re leukaemia as I have to admit that was my biggest underlying fear. 9 days in and nothing to report of any note apart from minor waves of nausea usually signalling I need to eat. And just show me chocolate! Got a real desire for the sweet stuff where previously I could take it or leave it! Know I need to drink much more water as am aware Hydroxy can have an effect on the old kidneys-it's just getting into the habit. Also checking the plughole like some demented plumber for hair! Got telephone consultation on Tuesday so can't fault the care I'm receiving from my consultant at Poole Hospital. Thanks again all and Judy, will be in touch.

  • I find it's best to eat a small snack on a tea plate if you can every 3 hours ,even a piece of fruit ,leave a glass of juice ,or water and jug ,in sight ,on the kitchen counter to remind you to drink all day.plenty vitamin C to combat cancer cells.sugar feeds him ,so don't eat too much ,fresh fruit is so much better.try to cut down on dairy ,clogs up your cells,stick every veg in a pot with stock cube and cook ,blitze it ,soup is so good for us,don't believe me?? I'm the proof it works..

  • I have done a silly thing in that I have deleted my message!! Basically it said that I have been on Hydroxy since 1983 due to PVR. The only real problems I had were mouth ulcers which are a well known side effect of Hydroxy. Also the face needs to have sun cream put on it all times of the year. I take Omprazole to reduce stomach acidity, but this is caused by the PVR, rather than the drug, it is thought. At one time when the PVR was worse I was on 1500gm one day and 1000gm the following day, but bit by bit it reduced to 500gm per day. My PVR changed to myelofibrosis about 5 years ago, probably due to the bone marrow burning itself out. Best wishes everyone from Michael

  • Some of you asked where the work was done showing that HU or HC is not that likely to increase the rate of leukemia . It was done by the Mayo Clinic and is published in heamatology hope this helps Town Crier

    Leukemia (2007) 21, 270–276. doi:10.1038/sj.leu.2404500; published online 14 December 2006

    Risk stratification for survival and leukemic transformation in essential thrombocythemia: a single institutional study of 605 patients

    N Gangat1, A P Wolanskyj1, R F McClure2, C-Y Li2, S Schwager1, W Wu3 and A Tefferi1

  • Hello,

    My home is in Dorset too, although I spend part of the year abroad.

    My diagnosis is ET Jak2 positive.

    When I am home, I am treated at Poole Hospital and have found them quite good.

    My treatment is hydroxycarbamide, aspirin, simvastatin, lisinopril and omerprazol to counter the cocktail of drugs and stop the heartburn.

    Apparently I am in the high risk category, so the HU is necessary.

    I do have quite a few side effects, but they are manageable. If you would like to chat more, you can message me privately and I'll help if I can.

    Take care and good luck to you.

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