Starting Hydroxycarbamide

Hi All. I hope everyone has manged to get some rest over the last few days.

On Tuesday I am starting Hydroxycarbamide at 500mg everyday. I’m aware there are side effects. Advice would be most welcome, especially best time of the day to take it or anything to watch out for.

Take care All.

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Hi @Adw265 I hope others can share their varying experiences and I will copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
Please do let us know how you get on on too. be kind and look after yourself

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Hey there @Adw265, I just replied to you on another thread, but wanted to reiterate how great it is that you’ve chosen a treatment. I hope the hydroxyurea works really well for you and any side effects are minimal. What a way to end the year, hey?!

I take my hydroxyurea and aspirin in the evenings after a snack or dinner. I’ve noticed more gurgling and bloating if I don’t take them with food, or at the very least a drink. I’ve also taken to carrying around spares for when I’m out and about (say, taking a day trip or out for dinner), and also antacids in case they cause heartburn.

Let us know how you get on @Adw265.

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Hi Duncan

Thanks for the advice regarding time and taking with food.

I agree, what a way to end the year! :joy:

I’ll let you know how I get on.

Catch up soon.

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Hi @Adw265,

I am sorry to hear that you need to start Hydroxycarbamide. I am sure you will receive lots of support and advice here on the forum. I can see you have already been given some great advice from @Duncan.

I have also enclosed some information on side effects from Cancer Research UK here which you might find helpful Hydroxycarbamide

Also, its important to mention that side effects can vary from person to person. Some people will experience none, whilst others are not so fortunate. Your hospital team should have given you some contact numbers in case you have any problem so its always a good idea to have these to hand, just in case.

Let us know how you get on.
Take care
Fiona ( support services nurse)

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I can see you have already had forum members share their experiences. Please keep us updated on how you are doing. I hope the side effects are not to bad. Take care x

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Hi Fiona

Thanks for the link. Very much appreciated.

I did get the emergency number for the Haematology department should there be a adverse reaction or side effect.

Take care.

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Thank you for sharing the Cancer Research UK hydroxyurea information @Fiona_BloodCancerUK, just had a read through.

Some of it is new to me! Hadn’t heard of the potential problems passing urine or pancreas inflammation, but thankfully haven’t experienced those. Do these tend to happen in older folks already diagnosed with Myeloproliferative neoplasms (MPN) and taking hydroxyurea? Or perhaps as an early sign of Myeloproliferative neoplasms (MPN)? No worries if there’s not enough data.

Something not mentioned in the CRUK info that still alarms me is the minor risk of our chemotherapy potentially affecting sexual partners. My first haematologist didn’t bother sharing this but I read it buried in the medicine safety notes after taking hydroxyurea for months. My new haematologist confirmed the very slight risk to sexual partners from me taking hydroxyurea. It was also too late to reserve any sperm should I have wanted to procreate.

Don’t know about you @Adw265 but I guess if anyone plans to have biological children then they might like to consider the complications prior to starting hydroxyurea and talk through options with specialists.

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Hi @Duncan

The CNS who is part of my Haematology had informed me of the potential risks with sexual partners and that I will need to wrap it up. I’m not looking to have any children so that’s not an issue on that side.

Sorry that it’s too late for you.

Kind regards
Alex

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Really glad you got ‘the talk’ before starting hydroxyurea @Adw265! I don’t really think about transmission risks anymore as they’re meant to be so minimal—although I’m sure any partners would appreciate knowing.

Thankfully I’d already decided against wanting children or my terrible first haematologist might have faced official complaints!

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Hi Adw265,
I’ve been on a similar dose for about six months now. Not much in the way of side effects (for me at this level) other than an increase in fatigue. Over time this has diminished and my wife suggested a few days ago that my fatigue levels are now less than before I started on hydroxycarbamide. I think this is true. There is still some fatigue but I can mostly ignore it and keep going.
Happy New Year,
Lucky

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Hi @Lucky

I’m really hoping the fatigue does reduce as that’s the main issue I have.

Happy New Year

Kind regards
Alex

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Morning @Duncan,

Happy New Year!

Unfortunately the data that I have available is quite general and not broken down by age. However, both of these side effects you mentioned are identified as very common which means they happen in more than 10 in 100 people.

I am sorry that your haematologist did not discuss your fertility or the importance of using effective contraception with you before you started taking hydroxyurea. It is important to use contraception when you are on chemotherapy treatment and the risks are openly discussed.

Yes, you are completely right about the risk to partners of people taking chemotherapy. I have taken this information from our web page.

  • If you’re having chemotherapy, a small amount of the drugs could be present in your body fluids. To protect your partner during sex, your hospital team might recommend using a barrier method until a few days after treatment.

I have also enclosed our information on fertility and contraception which you might find useful to read fertility and Contraception .

Take care
Fiona (support services nurse)

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Aw thank you so much for confirming that @Fiona_BloodCancerUK, I always learn such new and interesting information from you and your lovely colleagues.

Honestly, if it wasn’t for this forum and the expertise and lived experiences shared here I would be so in the dark about various aspects of Polycythaemia vera (PV) and/or hydroxyurea!

Hopefully others who chance upon this thread will now also know about the potential risks from taking hydroxyurea for partners and procreating!

Happy new year to you too :sunrise::sunrise_over_mountains::city_sunrise:

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Good evening All.

Just a small update.

Been on Hydroxycarbamide since 31st Dec 2024 and no adverse effects. Had a blood test yesterday and both Haematocrit and RBC went up dramatically. Assuming they will probably increase dosage? Have an appointment on Monday with consultant.

Take care and look after yourselves

Alex

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Hi @Adw265 please do let us know how you get on on Monday and don’t forget to ask all your questions that are on your mind.
I have to write them down as my mind goes blank as soon as I walk into a medical building.
Please do let us know how you get on, and yes, take care and look after yourself.

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Hey there @Adw265, such good news that you’ve not had any side effects from the hydroxyurea. Slightly jealous! Sorry to read that your haematocrit has gone up though. If my experiences after starting hydroxyurea are anything to go by then these readings do go up and down a bit every month, especially to begin with.

Something my first haematologist didn’t tell me was to try to cut down on iron-rich foods. I ate a lot of spinach and other green leafy stuff and was taking a multivitamin with iron included, which my second haematologist told me to swap for an iron-free one. Maybe you’ve had more food high in iron recently? Perhaps the lovely @BloodCancerUK-SupportTeam could advise?

Anyway, hope it goes well with your consultant, do let us know. They may say to stick to your current dose of hydroxyurea for now to see if your haematocrit settles down. Mine is still occasionally over 45 % but so long as it’s near 50 % I tend not to worry as that’s still close to its normal range for folks without Myeloproliferative neoplasms (MPN).

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Hi @Duncan

My consultant has said that iron in my diet isn’t an issue as this may help alleviate fatigue with my ferritin being so low. Under no circumstance am I to high any iron supplements as this would cause an issue and increase venesections.

Kind regards

Alex

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Sounds like what my second haematologist says @Adw265! Good stuff.

Apparently, some people with Myeloproliferative neoplasms (MPN) develop anaemia due to treatments reducing ferritin levels, so maybe keep an eye out for any anaemia symptoms. We can ask for an iron infusion should anaemia develop.

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Hi All

Update after consult.

I have now been told to try and avoid high iron foods. They are hoping that the venesection on Friday will be the last one and that fatigue will start calming down.

I’m feeling very apprehensive at the moment. I’m really hoping that the Hydroxycarbamide controls my bloods.

All the best

Alex

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