Hydroxycarbamide

[CarolineL]

Hi all,

I was diagnosed with Polycythaemia vera (PV) in March 2023. I currently take Apixaban (a blood thinner) and have venesections as treatment (my last one being in July 2023). As a result I have mild iron deficiency but other than that am pretty much living normally. For context, I am 47 years old, vegan and generally very healthy with no other ailments and rarely getting ill (i.e. colds, viruses, sickness bugs etc.) - in fact I have only had one week of sickness in the last 15 years when I contracted Covid-19.

Although I now generally feel well bar the odd iron deficiency headache, my consultant has been trying to get me to take Hydroxycarbamide for some time. I am reticent to do this as I do not like taking drugs at the best of times, let alone such powerful drugs, and it sounds like the side effects are far worse than the iron deficiency symptoms. I currently feel as if I am being held to ransom as they are dangling the fact they could treat my iron deficiency if I went onto this drug in front of me yet offering no alternatives at all. My concern is that if I start taking Hydroxycarbamide and it appears to be working that I’ll be stuck on it for life, even if a newer, better, less restrictive drug comes on the market.

My next consultant appointment is in March and I want to go in forearmed with more information. Whilst my consultant has given me information on Hydroxycarbamide she has not truly explained everything so I would like to know about other people’s experiences with this drug and whether it has helped overall from the people who actually take it.

Specifically I’d like to know about side effects and how long they lasted; what restrictions there are with this drug (i.e. going out in the sunshine etc.); if the ‘cure’ is better than the symptoms; if this is a lifelong tablet or just short-term stopgap; if this drug is taken in conjunction with blood thinners or instead of them (if you happen to know), and if there are alternative drugs which could be used instead to treat Polycythaemia vera (PV). I’ve also read that one must be careful when having sex and use genital and oral protection in order to protect your partner - what are the effects on your partner that you need to protect them from and again is this a lifelong measure or just when initially taking the drug?

As I said, I have read a lot of information on this drug from trusted sources like the NHS, Macmillan etc. but reading something online is nowhere near as good as hearing from people who actually take it on a daily basis and are living with it, so any experiences or information you are happy to share would be much appreciated.

Many thanks.

[clickinhistory]

@CarolineL sounds like you have read every cancer charity web sheet advice on that I have lol.
I am was diagnosed in September last year, just on aspirin 75mm a day and random blood letting when they go opps that is a tad high, off to the leeches my lad. Another one on Thursday morning, so I am waiting for them to make their mind what treatment plan I will end up on.
I know that there has been a new drug put on the list, but if it gets down to us Polycythaemia vera (PV) lot, who knows.
So waiting for the answers that you seem to be looking for too.

[Erica]

Hi @CarolineL yes, it really seems that you have a whole list of questions to ask your medical team, I say that as they know your whole medical history.
I find being pleasantly assertive and not leaving till I get answers,
Ask your fears, alternative treatments and ask your intimate questions too.
I hope others can share their experiences
Please do let us know how you get on and take lots of care

[Liz59]

CarolineL Hi I was recently diagnosed with Polycythemia vera on December 12. I am on aspirin and hydroxycarbamide. Initially i got mouth ulcers but they settled, I rinsed my mouth out with salt water. Initially again I had lower back pain and sore muscles. That also seems to have settled, still get from time to time but not as severe, could also be due to my age and job. I find fatigue the hardest but had that before I started Hydroxycarbamide so not sure how much is the medication or the Polycythaemia vera (PV). I was told to wear a good sunblock when out in the sun as there is an increased risk of skin cancer but bear in mind skin cancer runs in my family. Yes its a life long medication. I am new to this journey so that’s all I can tell you. I hope it helps and good luck with your appointment.

[clickinhistory]

@Liz59 nurse laughed about the sunblock as I drive a lot before a telling off for not wearing it, even in winter sun. Bit of a wake up call as I will wear t-shirts even in winter

[Liz59]

clickinhistory. I find it strange putting on sunblock in winter. Especially on the dark winter mornings.

[Duncan]

Happy new year, @CarolineL, bet you had a delicious vegan roast or two recently! I managed to make vegan toad in the hole and bara brith which went down rather well, if I do say so myself

Such great questions, so much resonates with me. Recently I asked my haematologist about my iron levels and he said, “Iron drives polycythemia vera so we expect and want some deficiency with the therapy you’re getting, ie phlebotomy. We don’t check iron studies and we don’t replace as it’s the goal to reduce iron to control the disease.” So I guess it’s a case of needing to lower our iron levels, but not so low as to cause full-on anaemia. Quite the balance!

However, not once has any of my medical people mentioned my fertility being affected, unprotected sex being risky for sexual partners due to the hydroxyurea, nor what the lifelong effects might be for me. My spouse was sitting there with me during the video call when my haematologist diagnosed me so I’m going to follow up about these omissions—what if I wanted to have children, presumably my fertility is now affected?! I’ll get back to you with what he says about fertility and side effects from sex and whether it’s meant to be taken for life. Bearing in mind that my haematologist also told me that Polycythaemia vera (PV) is not cancer and hydroxyurea is not chemotherapy

However, I was told that hydroxyurea increased my chance of developing skin cancer and to be more careful in the sun. Where I live is sunny so it’s good practice to apply high factor sun lotion anyway—I’ve even been sunburnt hiking in dense fog! So I’ve taken to applying zinc-based sun lotion, wearing UV-resistant long-sleeved clothes, and always have a hat on (I’m bald).

My experiences of starting hydroxyurea weren’t great as I noticed many physical side effects, but they faded and now seem unnoticeable. Checking my notes, I wrote to my haematologist that after a fortnight of taking it I had these new symptoms:

Tender spleen area
Dull persistent headache
Fatigue, difficulty concentrating
Sensitive urethra, cloudy urine
Digestion discomfort/bloating/constipation
Visual distortions
Aching elbow tendinitis and sprained index finger (historical injuries that got worse)
Morning sweats from minimal activity
Heartburn
Tinnitus

Thankfully they’re all gone now. Hope this helps, Caroline!

[Erica]

Hi @Duncan You have raised some interesting issues in your post.
Firstly I copy this on Blood Cancer UK’s website
fertility and blood cancer | Blood Cancer UK
I was diagnosed at 53yrs old with Chronic lymphocytic leukaemia (CLL) and pre menopause.
I have never had any treatment
Fertility and menopause, hot sweats were certainly not mentioned to me.
Also that there might be a susceptibility to skin cancer.
I was (and am!!) fair skinned, blond and blue eyed and have actually had skin cancer twice since my blood cancer diagnosis.
Perhaps training does not cover these issues or perhaps they think that it is too much information for the patient to take in at that time, I don’t know.
Thanks for your post and really look after yourself, I also have a fetching range of hats for different weathers.

[Duncan]

Oh lovely, thank you @Erica. I just wanted to say that I’m so sorry to read about your experiences with skin cancer, on top of that Chronic lymphocytic leukaemia (CLL). Wow you’re quite the survivor!!! I’m sure you have a beautiful collection of hats. I’m partial to flatcaps myself, or woolly fisherman’s hats on windy, cold days. I’m fortunate in that I’m olive-skinned and tan easily and thus burn less, but it’s still a concern for us all taking these medicines and as global heating increases all over the world. Long gone are the days when we could frolic in the sun without a care, right?!

[CarolineL]

Thank you to everyone so far for your responses - it’s really helpful.

The thing that I’m noticing most is the lack of information given to patients and the disparity in what is being shared with those who have the disease. I’m not faulting the NHS here as they are so hardworking and we are extremely lucky to have them, but at the end of the day it is us who has to live with the disease on a daily basis and us who will suffer any side effects or ill-health.

Erica may be right that they don’t want to overwhelm you with information straight away, but without full disclosure how can you make an informed choice about the treatment plan you wish to pursue? After all, whilst the medical team are the experts, the actual treatment you have should be collaborative and not simply dictated to you without any discussion or alternatives voiced.

I for one like to have all the facts about any topic before making a decision so only being drip-fed information or given a disingenuous view is very frustrating! I think there is too much of a tendency to simply prescribe a pill so you’re dealt with and they can take you off their books as it were. It’s the “easy” option for them but I question whether it’s always best for the patient.

[CarolineL]

Happy New Year! No doubt you had some delectable vegan feasts yourself during the festive period

Despite all the initial side effects, do you feel better on Hydroxyurea overall? i.e. are you still having any Polycythaemia vera (PV) symptoms or have these disappeared since going on the drugs? After the initial side effects, are you generally feeling well? And are you still having phlebotomy or have the drugs effectively replaced the venesections?

[Duncan]

You know, I’m in the weird position of never having had any noticeable symptoms of Polycythaemia vera (PV) prior to diagnosis. My Polycythaemia vera (PV) was found after a blood test caught the JAK2 gene mutation that I’d asked my doctor to check for since a close relative had tested positive for JAK2.

I had no signs of Polycythaemia vera (PV), although my previous CBC showed I had elevated platelets. I have regular CBCs and there didn’t seem to be anything untoward in results from earlier years. The symptoms I listed above began directly after I started taking daily hydroxyurea. They’re all gone now, and it feels like my body got used to the chemotherapy after only a couple of months. I reckon any fatigue I feel now is due to the gradual backup of excess blood cells in between phlebotomy sessions. Stress causes me fatigue too.

Phlebotomy was initially every fortnight after diagnosis, but now is roughly once a month if the CBC done a couple of days before the appointment shows my haematocrit is above 45 %. I still take hydroxyurea and aspirin daily. Despite my ‘youngness’ my haematologist considered me at high risk of clotting due to my previous heart attack, hence why I was put onto hydroxyurea straight away and continued to take aspirin to thin my blood.

I totally agree that we need more information before making decisions about healthcare that can be life-changing. I do think some of us are patronised by our specialists and not fully able to consent to our treatments we’re railroaded into as we’re not always given correct or transparent information, speaking from my experiences.

Might be interesting to note that I’m not having treatment via the NHS, nor in the UK, and yet am facing the same sort of lack of clarity from my haematologist that so many people on here experience, so it seems like it’s an issue across the board with these blood cancers, in different countries with supposedly advanced healthcare.

I mean, the fact that my doctor has incorrectly stated that I do not have cancer and am not taking chemotherapy suggests that these fancy doctors aren’t all up to scratch with current medical thinking and keep passing that onto us—the people actually living with these cancers and chemotherapies! Infuriating.

It’s great that you’re being so thorough, @CarolineL, before potentially starting medicine that can have so many side effects. Keep asking these questions.

[CarolineL]

I’ve been lucky that I’ve never really had symptoms either, except before diagnosis when I had vision issues (blurred, floaters, double) and had frequent headaches/migraines/dizziness but that was obviously my body trying to tell me that something was wrong! This was happening on and off and very intermittently for about 6 months before it was more constant and I went to my GP to be checked out and was then referred to A&E and subsequently Haematology.

It’s interesting that you’re still having phlebotomy as I was told by my consultant that the hydroxycarbamide would effectively no longer necessitate venesections as the drug effectively stops the cells growing so the need for phlebotomy is eradicated. This is also why they are able to treat the iron deficiency once you’re on the drug as they no longer have to worry about too many blood cells being produced as they are suppressing growth and iron levels will eventually stabilise because you’re not stripping your reserves every few months with venesections.

The more I chat to fellow Polycythaemia vera (PV) patients the more I realise that we are not all told the same things. I appreciate that we all have different medical histories so that will be a factor but there is such disparity and so much contradictory information being bandied about that I find it very worrying indeed. Who is telling us the truth and are we making incorrect decisions on our healthcare because of a lack of transparency and/or misinformation?

[clickinhistory]

@CarolineL I am what now seems like two weekly leeches visits while waiting for the Aldi doc to decide what happens next. As of yet, there has been no discussion of treatment options going forward, which, given the levels and stickiness of my red stuff, seems to be strange.
So I have had no chance to research the “chemical” options as I have had no indication of what the medics have decided or not. So I read other people’s journeys into this arena with interest, as this could be me going forward.
The trouble is we have a medical regime that is busy with the numbers, trying to work to Primark fittings over a wide range of people, when the reality is, we need Saville Row solutions at Primark price points.

[Duncan]

These highlights in PV from the European Health Association congress may be of interest to folks with Polycythaemia vera (PV). Warning: contains dry medical language.

This bit stood out to me, coming from its lead haematologist; “Ruxolitinib was associated with impressive control of blood cell counts and symptoms, as was also shown in patients with an enlarged spleen.”

So many other interesting findings to note, but at least there seems to be many treatment options for us. It doesn’t have to be only phlebotomy and hydroxyurea.

[clickinhistory]

@Duncan did wonder when this was produced? As the down playing of Polycythaemia vera (PV) as like having a mild dose of long term flu, take two tablets a day and you will be fine does not sit well, especially the threat of RIP from the symptoms.
The side effects and the mental toll were also ignored, but a pat on the back for us clever medical types did.
Sorry, bad night sleep and getting the fun run of joint and muscle ache and shortness of breath making me a tad less tolerant today, that or the wind from Storm Isha has my back up

[Erica]

Sorry to hear that you had such a bad nights sleep @clickinhistory, but thanks for highlighting the side effects you have suffered today, it is a good reminder to me to put cause and effect together.
I hope you have a better sleep tonight and be very kind to yourself

[clickinhistory]

@Erica thank you, been a bit of a lost weekend on work stuff, so hope for a better night tonight.
Stay safe in the storm

[Duncan]

This get-together of European Hematology Association blood cancer specialists happened in 2016, apparently. They meet annually and share progress relating to blood disorders like ours.

It is rather dry language, but they state that treatments for those of us with Polycythaemia vera (PV) have changed; “In the past, there was a single goal: to reduce the number of red blood cells. Now, there are 4 others: to reduce the number of white cells and platelets, shrink an enlarged spleen, and improve symptoms.”

So one goal of our doctors is to improve our symptoms. This should mean that our overall health is important, including our mental health, to assist in our quality of life. It’s not just about giving medicines and taking blood but our holistic overall care. Like they state; “It is important to control all of the blood cell counts, spleen size, and symptoms to improve the patient’s quality of life and further decrease the risk of blood clotting.”

Thought that was particularly important as our care can so often become statistical and not bear in mind how every aspect of our lived experiences can be affected by these disorders.

[Marylin]

I take Hydroxycarbamide, have done for nearly three years. I took a blood thinner I think was rivaoxiban but not sur of spelling. It didn’t work. I got clots. Now on warfarin and aspirin. Plus a lot of other medication…

Have had a spell of shortness of breath, various and total exhaustion. Tests have shown more clots in lungs than previously thought as well as the start of pulmonary fibrosis. This has led to a diagnosis of pulmonary hypertension. Now waiting for the Haematologist, Thoracic and heart consultants to meet to determine. Future care and treatment.

The Hydroxycarbamide caused me lose half my hair, skin dryness and itchiness, tiny bruises, but I am 80 and probably oler than most . Marylin