Just been diagnosed with maelofibrosis
And have been given HYDREA CHEMO tablets
Anybody else on these and what can I expect from them
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Hi @Terry007 sorry to hear of your diagnosis.
I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
The Blood Cancer UK support line is also there for you on 0808 2080 888
How are you feeling and doing?
I would say be very kind to yourself, I was in shock after I was diagnosed for a long time.
I really look forward to hearing more about you.
Please do keep posting and really look after yourself
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Hi @Terry007
I was on hydroxycarbamide from Nov 2023 -April 2024 after being on another treatment prior.
The side effects are scary but I would say it’s good to know if anything happens whether it’s due to treatment or something else. Also a lot of the warning are based on collected data from trials and they are legally required to state all kind of reactions that hundreds/thousands/millions of patients have encountered.
It’s also important to note everyone is different and some hardly suffer while others do.
Hydroxycarbamide is a very tried tested medication and though a chemo drug is scary… my haematologist said it best that you can worry not take it and things get worse or you take it, find ways to tolerate it and live longer…
Anyway regarding my experiences
Initially I was absolutely fine and more importantly my levels and results were very close to a healthy persons normal.
I didn’t endure any sickness but my hair did start to thin (but this was very gradual and it was lost in chunks) and is temporary.
The thing is I also take heart medication so blurry vision at times, light headed feeling and flashing lights could’ve been due to an amalgamation of meds rather than one in particular.
I know a lot of people here take hydroxy and have been getting on really well with it so I’m sure they too will post their experiences soon so stay posted 
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Hey there @Terry007, a big welcome to the forum. I’m glad you found us.
I’m really sorry to read of your diagnosis. If I’m reading it right, you’ve been diagnosed with myelofibrosis (MF)? I was diagnosed with a related Myeloproliferative neoplasms (MPN) last year, Polycythaemia vera (PV), and have been taking daily hydroxyurea since then as well as daily aspirin to help thin my blood.
You may find this Blood Cancer UK research and information about myelofibrosis helpful: Myelofibrosis (MF) | Blood Cancer UK
Also this information about MPNs which MF, Polycythaemia vera (PV), and Essential thrombocythemia (ET) are types of: What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK
I agree with @Rammie18 that we all seem to have different experiences with our treatments as we’re all individuals but most of us will experience fatigue, at least initially. I had severe fatigue after starting hydroxyurea and phlebotomy but that mostly faded to a tolerable amount after about 3 months.
Unfortunately there doesn’t seem to be much we can do about the fatigue, but if you experience it I can share some research that shows getting early morning daylight into your eyes can help with sleep which will improve energy, as well as doing slow stretching exercise like yoga, tai chi, or qigong. Our dear @Erica swears by pilates. Personally I find having smaller meals helps me not get so tired after eating. Keep really hydrated as you may note your skin gets drier. Hydrating well will help your blood flow better too should you need phlebotomy. I have been known to drink nearly a gallon of water the day before phlebotomy to help it flow well!
Anyway, I’m sure that’s enough to be getting on with! Let us know how you’re doing. Have a look around the forum as there are others living with MF who will know what you’re experiencing.
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Dear @Terry007
Thank you for posting and it is understandable that you have questions around hydroxycarbamide. On the whole it is well tolerated but can take some time to get the right dose for you as the aim is to suppress the blood counts to a therapeutic level without causing too much suppression. We have some information here Myelofibrosis (MF) treatment | Blood Cancer UK and our colleagues at Myeloproliferative neoplasms (MPN) voice have some information here: Hydroxycarbamide – MPN Voice
Do call if you should need any support: Blood cancer information and support by phone and email | Blood Cancer UK
Kind regards
Gemma
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