Hello. I am 59 & have just been prescribed 500 mg HU to lower my platelets & am so scared. Not only am I horrified that I will be taking a chemo pill for the rest of my life, but when I read the info that came with my prescription, it said to handle pill & bottle using gloves and wash hands immediately afterwards. Also read men taking it should use condoms. Does this mean my saliva & body fluids are now poisonous & I should stop kissing my husband or allowing anyone to drink from my glass? I should have asked my dr, but honestly, once he said “mild chemo”, every word he spoke sounded like the “wah wah” adult voices in a Charlie Brown cartoon. I can’t even remember what disease he said I have. He mentioned a mutated gene & something about a gas pedal being stuck but I can’t recall the exact term. I am still not over the shock of having 2 stents inserted 2 months ago for blocked heart arteries and being put on heart meds & a statin. A few months ago, I took no meds & thought I was 100% healthy and now I have 2 stents, some kind of blood disease, am taking 7 pills a day, one being chemo.
I was wondering what precautions everyone else takes handing HU because it will be almost a week before going back to my dr. I know I could call his office, but just thought I’d ask here. Also will I lose my hair? I did ask my dr that and he said I shouldn’t, but the way he said it didn’t instill much confidence. Sorry about this long rambling post, but I am just so overwhelmed. I am keeping up a positive front for my husband & haven’t even told my sons, family & friends about this new diagnosis, but I am terrified.
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bjay22
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First of all, since we are all putting our HU tabs in our mouths, take the handling warnings with a large pinch of salt. Men taking it, that's them potentially fathering a a chemo-dosed child I think. Nothing to do with you being toxic!
Don't be scared. I think we all were to one extent or another at diagnosis but this forum is the best place to be for advice, encouragement and, since we're all in a similar boat, empathy.
Hair? Mine has gone a bit dry and brittle but being a bloke in his mid to late sixties, it's a) unsurprising and b) trivial.
And share with friends and family as much as you can.
Please do not be terrified by taking Hydroxy it really is not as bad as it sounds, when taking mine, one daily then two Sat and Sun, I pop them into a small Shot glass, then swig them down with a full glass of water, no need to touch this way, plus make sure you consume at least 2ltrs of water a day this helps to pass any toxins through your body. Also take Asprin, Thyroxin, Zestril, this is a blood pressure tablet, did take Statins but could not tolerate, so improved my diet took more exercise and for me I feel life is good for the first time in many years.
You could ask Maz our forum coordinator to send you some booklets on living with an MPN I have ET JAK 2posative diagnosed four and half years ago now and now all my bloods are good, but before that had numerous things go wrong with my health.
If you are worried about anything, please talk to us all, we are a rare bunch of people, but we know exactly how you feel, we are here for each other, so ramble ahead we are good listeners and try to give some good advise where we can. There are many on this forum who have been on Hydroxy for many years and have coped really well on it.
Also my hair went a little thin to start with but now I use good products, and still have it coloured and I feel it is my crowning glory make sure I do it every day plus makeup is a must for self asteem, my mother used to say never go out of the house without your Lippy on.
I started hydroxicarbamide when I was 59, ( I am now coming up for 64) I was diagnosed with PV at 51. I take one 500 mg tablet per day and 2 on sundays. I honestly have had no side effects, in fact I feel a whole lot better knowing that I am less likely to suffer a stroke or thrombosis. I pick them up with my hands, without gloves, and take them about 1 hour before bed with all my other medication. I have never worried about touching them or toxicity of someone else using my glass etc. I kiss my grandchildren all the time, I certainly would not do this if I thought I was toxic. You need to find out which MPN you have and then look on mpnvoice.org.uk You will find lots of valuable, honest and realistic information to help put this into perspective for you. Maz, the editor of this site could also put you in touch with a buddy who has the same MPN as you. I found this very helpful in the beginning.
Once all this strange information sinks in and you understand more you will feel a whole lot better.
Forgot to say, hydroxy makes your skin more sun sensitive so you need high factor sun cream. I have just been diagnosed with a basal cell carcinoma on the back of my hand and am awaiting an appointment to get it removed.
Phew. So relieved. Thanks everyone for the quick responses. It makes me feel a whole lot better. I didn’t even know about the sun sensitivity thing and that is important, because I have always been a sun worshipper. Also very relieved to read that my hair should be fine. In a few days, when I go back to my dr, you can be sure I will be writing everything down. Again, thank you all.
I'm on double doze, its not that bad, if you are worried about handling the tablets use disposable shots glass from Poundland that way you dont need to touch them. As for passing on the medication during love making, I was told its not a problem. I would assume its more toxic for a man passing it on to a woman for obvious reasons so woman passing a man, you really dont need to worry. Good luck, any other concerns use this forum, they great bunch of people for advice and emotional support.
Thank you RafflesUK. I live in the US, but it’s very comforting to hear that others have been taking this med & living with this for years and are doing fine. When I googled high platelets and hydroxyurea, this site was one of the first I came across. Very glad I found it.
There is a common thread here. New posters panicking and understandably terrified. We’ve all been there!
However I think the more you get to know, the more you will get over the dreaded ‘cancer’ word, you will realise that life goes on and it’s still great if you want it to be. MPNs generally progress very slowly and especially ET.
You say you will be on chemo drugs for the rest of your life. I think this is highly unlikely. There’s lots of research going on into something that is still relatively new and great advances in the offing. I’ve watched loads of videos of amazing Hems explaining their latest research/trials and enormous progress is being made. The next five years will be transformational so just hang in there and don’t panic! Current meds should see you live to a ripe old, new meds.......
Hi, today my doctor told me the same. He said I should take it for a month and we will see what happens. Once the blood counts are normal and stable we will see what we’ll do next. I hope he didn’t say that to calm me down. I read in here that most patients take the drug in the evening. Why so? My doctor told me to take it in the morning!?
Hi Paul, what a comforting answer! It is such a scary and lonely illness! (Because I don’t go around telling my problem!). I have ET or PV (not sure which) JAK 2+. I was prescribed yesterday with a low dose for a month, haven’t started it yet. I thought that one starts the drug after 1000000 platelets but at 650 and 50 haematocrit my doctor, a professor, started me yesterday. I really don’t know how much this will change my life. I am crying while writing this to you. Be well
Hi bjay, gosh you’ve had a lot come crashing at you all at once - I’m not surprised you’ve had a bit of a ‘melt down’! Ditto to your other posts, the very best place for info and support is this forum and MPN voice. I was diagnosed 2 1/2 years ago, I am positive for the gene JAK2 and I have ET.
I scared myself stupid when I had to start Hydroxy, but I’v become much more at ease with no major issues - I’m fine to handle them and take them evenings, they are keeping my platelets down and most of us also take aspirin as a blood thinner.
I promise you, you will get to grips with this condition - keep hydrated (+ yes use sun screen) - you will be monitored carefully to get things stable and things will become easier.
Hi. Welcome to the forum. You’ve already received lots of good advice. I asked my doctor about the safety of exchanging bodily fluids with my husband. He said at my low dose (500 for 6 days, 1,000 for 1 day) it wasn’t a problem. But if you take a high dose it apparently is. Even kissing if using tongues. (Sry to be graphic.). I personally would never touch my pills with bare hands without washing them extremely well after. Katie
I touch my pills just the same as the other pills I take and don’t even wash my hands after. The drug is encased in a capsule, I don’t believe there is any danger.
Please try not to worry.... I have been taking Hu for about 10 years and I am fine... I take two a day......I don’t treat them any differently to other tablets. But I was all those things you describe when I was told I would have to take a “nasty little pill” she said! You’ll be fine!
Firstly, don't be scared. This chemo will do you more good than harm. You're on a low dose. As mentioned in other replies, take the handling instructions with a pinch of salt, as long as you wash your hands after taking it, there is no need for mask, gloves or gowns!
When I asked my Haemo about men wearing condoms, he informed me that was only if the man himself was taking it, not you, so carry on kissing your husband :). What MPN have you been diagnosed with? I have ET Jak2 neg.
As for your hair, and any drug for that matter, everyone reacts differently. Some people's hair thin slightly, but you do not lose your hair as you would with a more toxic chemo. If it helps, my hair was very short, thin and wispy prior to starting my chemo. I've been on HU since January 2016 and I now have the thickest, longest hair ever! It does make your hair a little dry and frizzy but nothing that can't be sorted with a good serum. My own hairdresser thought I'd had extensions put in! I take Silica for my hair and nails, but check with your consultant first before taking any supplements.
I understand it's very overwhelming and we've all been in your shoes, but taking this chemo for life will extend your life. I also found it daunting that I would be on this drug for life. I was on 1,500mgs daily of HU when I started and 2,000mgs at weekends. I now sit with 1,000mgs daily and 1,500mgs at weekends.
We all know how you feel, but please don't be scared. This is a lovely forum where everyone is in the same boat and we are all here to help ease your concerns.
Beautifully said Angela. I too was terrified but am pleasantly surprised not to have any side effects other than perhaps skin a bit drier and hair a little bit more dry - but actually looking good. Lynette1
Hello Bjay, welcome to our forum, as you can see you are in the right place for help and support. We all understand how you are feeling, we've been there, I won't add too much to the great advice you have been given, just to say that I can send you some of our booklets, or you can read them on our website mpnvoice.org.uk/about-mpns/... I am sure it will help you, and also to read the other information we have on our website mpnvoice.org.uk
try not to panic too much about the Hydroxycarbamide, it's really not as bad as you think. Best wishes, Maz
What a great blog! I can remember when I was diagnosed with ET some four years ago and feeling equally disturbed. I too read the leaflet with the hydroxicarbomide and feeling shocked and astounded. I suppose over the years I've become complacent and don't bother with the precautions. Maybe in the day and age of 'health & safety' they have a duty of care to acquaint you of the risks however small. I would certainly not stop kissing my wife, or any other wife's! So i feel you are maybe overreacting and need to realise how much worse the diagnosis could have been. At least with ET the prognosis is good.
Welcome, it is lovely to hear from you and you will feel better than you do right now.
Yes, it is so much to process when first diagnosed. I too asked the question about rubber gloves on this site when first prescribed Hydroxy. I was terrified by the enclosed leaflet, thought I would be bald within weeks and that my time was limited. Here I am two years later and feeling fine. My hair has not deteriorated. For a while I used mane and tail shampoo and conditioner but have since returned to everyday products I take a silica supplement which I feel helps my hair and nails. I drink at least 2 L of water everyday and generally carry on as normal. I chose to take my tablet in the evening as for a while I used to feel tired and did not know whether it was a result of the tablet or condition and have continued with that routine. I honestly feel that a lot of the tiredness was the whole emotional processing of having an incurable condition. Life is good. This forum is wonderful. Try to be gentle with yourself and maybe incorporate some relaxation into your day.
Just about everyone on here will have felt the same kind of overwhelming feelings that you are having . As all the other replies have confirmed , given time , your confidence will build . I have massive problems with swallowing , & as per CRUK info, I open the capsules & take them in a designated shaker with tepid water . There is minimal taste & I’ve done this daily since diagnosis with no problems at all . Take care & be confident that in the long term the meds will get you where you need to be 😊
Hi bjay, the following is something i wrote a while ago, firstly i have taken HU now called hydroxy carbamide for 22 years .I have never taken any precautions in handling it . secondly men should where condoms as it likely that it will damage sperm and could cause malformed foetus . Thirdly you will not have poisonous bodily fluids. It has controlled my ET well for the las t 20 years and I tolerate it well , however some people do get side effects. My hair is thinning but that is just old age.I would hazard a guess that your thrombotic incidents may well be attributed to your ET. Finally mu haematologist said that if the ET was properly controlled I should live to a normal life expectantcy. I am now 73 and was only 41 when fist diagnosed.
From: CHRIS ATKINS <catkinspolymer@hotmail.com> To: MPD-SUPPORT-L@SERV.AOL.COM Subject: Essential Thrombocythemia and the RUBBER INDUSTRY Sent: Tuesday, 19 August 2008 Hi Allissia I have searched through my old notes on my case which may be of interest.I am now nearly a 70 year old man living in the wilds of Wiltshire and still going strong whilst living with ET. I started in the rubber industry in 1963 on leaving school and worked for a tyre company in the west of England called Avon, now owned by Cooper tyres of the US. Stayed in the rubber industry another 15 years and then went onto a similar occupation mixing specialist plastics fo another 22 years. Had some visual disturbance and dizzy spells in late 1985 and had a privately funded medical check including a blood test, which possibly showed some evidence of myloproliferative disease.There was some notes on my blood tests where the technician had written presence of " basofils, myloproliferativre desease ?" On recently checking also spotted PCV was 49 at that time. my GP ay the time did no understand the significance. It all seemed to get better and was all forgotten about by me and my GP until 1996 (with a new GP) when I was in serious trouble with high blood pressure chest pain and lethargy. Blood test showed a platelet count just over 2 million and a BMB revealed ET. This was controlled with 18 time 500 mg tablets of HU per week and fell to about 330, 000 where it has been for the last 12 years. Recently however it has fallen to 270,000 and hem has reduced HU to 13 per week. PCV has risen to 47 and I am now having a phlebotomy every 6 weeks or so to keep it below 45. Back in 1985 I had two small children and I just got lucky that I did not have any kind of thrombosis. My girls would have suffered without their Dad.? Generally today I keep well but cannot do an 8-hour workday. Managed to semi retire in 2000 and now fully retired but doing lots of charity work with our entry to Britain in Bloom.I am also now the town crier. However one shock was that when I retired I rang a Swedish friend who i had gone to college who also worked in the the rubber industry and found he had PV. We searched hard but did not find any significant increase incidence of myloprofilerative disease in the Rubber industry. Perhaps most ironic of all two other close college friends have now died of heart failure whilst me and my Swedish colleague keep soldering on. I also enjoy long (8 week trips) to the Continent with my caravan but have to have a phlebotomy as soon as I get back. To be absolutely honest the ET interfers very little in my life , but it does make you get on with things you want do. all the best hope the spelling is up to the mark. all the best Chris Atkins Brit 69 years old ET diagnosed in 1996 but some evidence of MPD in 1985 12 times 500mg HU per week baby aspirin every day and amlodopine to control the blood pressure.
Hi bjay22, I also take one 500 mg of Hydroxy daily. I just wash my hands after touching the capsule just to be on the safe side. It was wonderful to have my platelets come down to the normal range, so was happy to find something to take to do that. When I first started taking it I was on 2x daily so now glad to be on only 1. I haven’t had a problem with my hair. I still have itching but some have written that Benadryl helps with that. Good luck hope your mind gets a little more at ease. This is a wonderful forum so anytime you have a question someone will reply to you. Ann16
I used to use gloves when I first took hu, but faffing about like that soon wore off! I just took them with my bare hands like other medication - still haven't grown two heads! It is very scary when first diagnosed and prescribed chemo. A few years down the line and I get far more trouble from my arthritis than my ET. My hair did thin slightly, my main concern was dyeing my hair - yes you can safely do so! (I haven't seen my natural hair colour for about 40 years!) As for kissing etc - no problems so far!!!
Lizzziep - I have also dyed my roots every 6 weeks or so since forever, so was very glad to read here that the meds did not cause a problem. I have started taking the meds at night and I have stopped using plastic gloves. Before posting here, I was so concerned, I even kept the bottle in a plastic ziploc bag. lol.
I was so terrified when first diagnosed, I had read all sorts of things on the internet about ET, 99.9% of which were complete rubbish. I have found lots of information and more importantly reassurance, from this site. 😘
Oh boy do I recognise what you are going through! I was diagnosed with ET last year and nearly had a fit when I read the notes for Hydroxycarbamide (HU) - alarm bells were ringing in my ears and I refused to take them. I talked to my GP and my daughter (who is a doctor) and they both reassured me that the drugs companies have a legal duty to spell out every possible downside even though the risk may be minutely small. They both also confirmed that the real risk was in not taking them and being more likely to suffer blood clots / thrombosis, stroke etc.
So...... in I jumped and guess what? Nothing fell off, I had absolutely no side effects and my blood count started to come under control very quickly. I handle them in just the same way as any other tablets. A few months ago the HU had got my platelets down below the magic 450 level, and I am hoping that they will be lower still when I have my next review next week.
Chin up! You are on the path to better health and understanding your problem is half way to fixing it. By the way, I now record all my consultations on my mobile phone (with the consultant's approval) so that I can re-listen to it when I get home. That way I don't miss anything and if something is unclear I can always refer back to it.
Good luck and you have come to the right place for support - this group is amazing!
I just put the capsules in a piece of tissue and throw it down my throat. Lots of water. I take at night in case of side effects I would be asleep! I have noticed a bad effect on my hair but am trying different products to help. The worst thing for me is exhaustion but I also have CFS so that is why. This forum knows more than most haemo consultants, I think, so I look on here first for help.
Hi bjay22. Was diagnosed with et in September last year.
Went a big crazy at first.
Husband was worse.
We are cool now.
I am on two tabs , I take mine at 2pm every day.
I have other medication morning and evening so it suits me to take it then. Some days I get tired in the afternoons but I use the excuse that it may well be age related.
Lasts about an hour.
Call it my time.
Hair ok, I kiss my husband and have sex as normal.
I put my tabs in an egg cup and drink a tumbler of water with it..
I keep fit gym three times a week wear flight socks when I go on holidays and drink eight glasses of water a day.
I have bought a salt lamp to help me feel good about myself and love you guys on this web page.
Keep a log on how you feel and share it with your team.
There is very good net work of people on here to help you normalize your condition. I have et he is a Mexican bean who wears a sombrero and flashes his lights at me Ha ha.I am managing my condition and plan to live my life with a positive attitude.
I am on 4 capsules of Hyroxy a day, when I was diagnosed my 5 year old grandson was having radiation and chemotherapy treatment for a brain tumor. The first question for my doctor was should I stay away from him, then should I not kiss him will my treatment cause him any harm because of his treatment and weakened condition. Answer was no to all questions. He is now fourteen and fine and I have no trouble with the hydoxy. Hope this helps set you mind at rest.
I know exactly how you feel. I was resisting taking this drug a lot. Then finally I gave in and I was very very scared. I cried and cried, because I also did not want to lose all my hair etc.
I am taking 500mg/daily since August and nothing horrible happened. I did not lose my hair, at times I feel a little weird, but may be that is not even from the drug.
Just drink lots of water every day and try to relax and trust, I know it is not easy. At all. Try to still like yourself, try to make yourself still look pretty, be gentle with yourself.
It is like "May contain nuts," on a packet of peanuts. The drug company wants to be able to say 'the warning was there' if anyone tries to sue them about anything, it has only been added recently. I don't wear gloves to take my tablets. I am the only one to handle them at home. I do wash my hands after taking them with my breakfast, but only because I have an orange and get sticky fingers.
At first they gave me some nausea, and I read on the forum that taking them at night might help, and it did.
Hi I've been taking 2tabs a day started just before I got stairalized after my 2 girls I've never worried about it as platelet count is normal with tablets just bit tired as I'm getting older it quit a common thing I go for blood test every 3 moths
This is great advise. l am also 59 due to start in the next few months. Very reassuring also to hear people’s experiences
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