Welcome back!

Hydroxycarbamide for ET - when to take? To take with or without food?

Am about to bite the bullet and start taking Hydroxycarbamide at the beginning of January.
There is probably no right or wrong, and I may be overthinking, but am wondering, as this should be taken at the same time each day, what do other people do?

I was thinking that I may find it easier to take at 2pm after our main meal of the day. I am not a person of regular habits, so it is probably a toss up between after lunch or after eating something in the evening. There is no information regarding with or without food, so I am going for after food, so there is something in my stomach. I did wonder if having it in the evening may be best as I can then sleep and let the tablet do its job. Any thoughts? Or experiences?

1 Like

Hi @Modesigns from what you say there are no instructions on or in the packaging.
I await others with more experience answering you or you could try the Blood Cancer UK support line although they might not be able to help.
Have you got any contacts on your medical team that might be able to help or what about a Pharmacist?
In this household we have to leave notes everywhere to remind us of things !!!
Look after yourself and always best to check.
Good luck in your quest.

2 Likes

@Erica - I have asked the questions, and spoken to the pharmacist and team. No specific answers, so am just looking at the management and preferences of others.

2 Likes

Hello Modesigns - I am sure you will find Hydroxy an efficient treatment. I had 13 years or so of it for ET, I always took it in the mornings, first thing with water most often not long before some breakfast but not always. I didn’t find it had any difference whether with or without food and I know the general advice is that and time of day makes no difference so probably will be whatever is your preference. Do know the biggest help with HU is to keep well hydrated, use of water and sips of it to keep up hydration through the day whatever you are doing will help a great deal, it helps the fatigue elements of HU and also negates some of its effects of mouth ulcers - I always wished someone had let me know that in early days as I learned the hard way, had the mouth ulcers and by trial and error upped hydration and didn’t have any them again. It’s sort of going a bit more than the hydration of a “normal” (:rofl::roll_eyes:) person and really being aware of it throughout the day. If you get a few effects first off and some tiredness do know the body adjusts and that all eases after a bit of time on it, although you may well not get them in any event but handy to know it subsides if you do once the body is used to the drug. Let us know how you get on.

4 Likes

@Jilly20 That is SO helpful to know that! I have been trying to prepare myself for drinking a lot more water. I teach singing, so mouth ulcers are not going to be welcome, but am allowing myself 2 months to adjust before I continue to teach, or make a decision to retire from that part of my life.

The mornings could be good, but I am an unpredictable riser!! A 9-5 job would never have suited me!!
You say you were on H for 13 years or so…are you not on it now? Or have you changed medication?
There is a lot of information - but it takes some sorting, and some reading from a variety of reputable sources.

1 Like

Ah yes i remember you saying previously you were a music teacher. That’s such a good idea to have decided to take a couple of months to adjust into your treatment - well done. I know it’s all bit daunting when treatment starts, I remember thinking goodness oral chemotherapy what is going to happen to me? But you soon realise it’s not so bad, in fact many patients are on Hydroxy for decades - and I am firm believer that treatments are friends (even if at times not feeling like it) keeping us safe from the risks of the actual disease. I was happy taking Hydroxy all those years - unfortunately they started to loose efficacy for me in controlling my platelet levels so I had to change over to Pegasys interferon and I inject that each week for the last three years. All the best

3 Likes

@Jilly20 Thank you for that too! I will try and keep the ‘Treatments are friends’ mantra alive! A good way to approach it I think! As am to turn 75 in just over a month, I think I will be very privileged to get one decade of HC…but who knows??! I remember you saying that you had to change to interferon…but hadn’t remembered it was you…there are so many people I get them mixed up. All the best to you too.

3 Likes

Been taking 1000mg hydroxycarbamide for nearly nine years now for CALRpositive ET, with absolutely no serious side effects apart from brittle nails. Always take first tablet with lunch and second one with supper, for no good reason other than having got into the habit. It took my gut a couple of weeks at the beginning to recognise it was going to have to put up with the new ingredient, but after that, nae problems. I’ve never worried about hydration - drink lots of tea, coffee and occasional cider, and (sorry for the detail) pee nice and clearly!
I’m heading for 78, and also have prostate cancer, which IS a problem. Awaiting call for rather unwelcome -oscopy, so when today’s NHS letter arrived, I was ever so pleased to discover when opened that it was just Haematology telling me my platelets were still 20% outside the “proper” range, and to just carry on as before! Platelets have never been in the “proper” range since diagnosis, but “my” consultant says it’s not worth trying to get them any lower.
DickM

3 Likes

Yes @DickM, I am sorry to hear your prostrate cancer is causing you grief.
My heart sinks every time I see an envelope from my hospital, too.
I expect we are not the only ones.
However aren’t we lucky to have our NHS and in my case such caring staff.
I have been seeing my GP nurses from daily to twice weekly now since Oct.
Look after yourself you have a lot on your plate.

2 Likes

Thank you for that helpful information @DickM! Am starting with 500mg. Hoping that is where I stay…but who knows on this journey. My husband had prostate cancer, but after radiotherapy he now is in the clear. I do hope your treatment is successful. Happy New year!

2 Likes

Hi i take hydroxycarbamide and have ET …I take them same time every night at 8 o’clock…I think its what’s best for you I take three every night .I also have stomach problems so found if I took them with food I felt a bit sick …so I am in to a routine now and not much problems…mouth ulsers
But a good mouthwash helps good luck
Hope all goes well for you …Smiddy :pray:

2 Likes

I’m sure you’ve tried this, SMIDDY (wonderful alias if you speak Doric!) but I wonder if spreading the pills across the day would be better? I notice that if I forget to take my lunchtime pill and take two together at night, stomach definitely says “Oy, what are you up to?”.
DickM

3 Likes

Everyone’s different but I have taken hydroxycarbamide for 11 years with NO side effects. I always take it 9-10 in the morning, well after breakfast, along with all the other tablets (!) and have never had a problem. I do hope you have the same experience. Very best of luck, I know how lonely this situation can be.
Jenny

3 Likes

@JennyMary, @DickM, @SMIDDY, thank you for today’s input! I thought I may try morning or evening, but when I have to watch my weight I fast intermittently, so after lunch, (mostly main meal) will fit in best. I HAVE TAKEN THE FIRST ONE! 2pm. It shouldn’t have been such a big deal, but as someone who has been on no medication until I had to take apririn 4 months ago, it sort of was!! I was awake for a long time last night not wanting to begin…but the numbers meant I had to…so life is divided into before and after Hydroxycarbamide. It is VERY encouraging to know that many people don’t have side effects. And very encouraging to have a place to chatter about fears, or to chatter in order to work through ideas and fears. The CSN nurse assures me there are remedies for various side effects, and that, too, is very helpful, although I imagine she is on holiday today!!
All the best to you all. Marion.

3 Likes

@Modesigns starting your medication today means it will be easy to member when you started it.
Yes, the diet starts after my birthday on the 4th.
Look after yourself and please let us know how you get on.
Be kind to yourself.

1 Like

@Erica - I may remember the date, but may well forget the year!!
Enjoy the feast before the famine!
And enjoy your birthday…getting in early in case I forget. Hope you have a plan!

1 Like

Hi @Modesigns oh, yes, I have a plan for my birthday.
I ordered my Wiggles the Caterpillar cake and Sainsburys was out of stock and delivered an extremely chocolatey cake (serving 10) which I reckons serves 4.
Distraught I was to say the least.
My husband confessed last night he had also brought me a birthday cake (the first time in 40 yrs ???)
Luckily I had liberated some space in my overfull freezer so I froze the chocolate cake in 4 pieces.
Our son tested positive for Covid just before Christmas so we obviously didn’t see him. Well he tested himself this morning and was negative so came round with Christmas and my birthday present, he will be back at work on my birthday.
We demolished my husbands birthday cake, which was not one I would have chosen myself, but scrummy.
My husband has to self isolate for 3 days starting tomorrow so he will be staying here on Tuesday and I have a GP nurse appointment to have my head wound redressed in the afternoon and then a phone call to my sister in the West country. We are also having a new TV delivered in the morning, it’s all go here !!!
I have some birthday cards already, but the post deliveries will be up the creek because of bank holidays. Christmas decorations come down on the 5th.
I will do what I want, when I want and eat what I want on my birthday, thanks so much for the good wishes it means a lot.

1 Like

Wow! @Erica! Keep up the celebrations! And enjoy the what and when you want day! And the stashed away frozen extremely chocolatey cake! (If I don’t get to it first!)

1 Like

Hi @Modesigns. Just to be different from everybody else, I take all my meds, including Hydroxy first thing in the morning before breakfast, as soon as I come downstairs.
The only (very mild) side effect of Hydroxy I have is a slight itchy shoulder first thing.
As I have just been diagnosed with Exercise Induced Asthma (never heard of that before !!) I have to use a Preventer Inhailer first thing, which can cause sore gums, but the advice is to rinse the mouth out afterwards,
That might be a help after taking your meds.
I have made an Outlook Calendar listing all my meds, hanging in my kitchen showing what I have to take each day, as they vary, and I tick them off. At 83, I can be forgetful !
Take care, and stay safe.

2 Likes

Hello @Beejay! You are doing well with that! That sounds like a good plan. My problem with mornings is that they are my most irregular time. Sometimes up at 6, sometimes at 8 or later. Have settled with around 2.30pm. Am being very proactive re water. I think it will certainly help. It has really helped me to know how others cope. How long have you been on Hydroxy? You take care too.

1 Like