Ah okay, so there are availability problems for you too! That would make me so anxious, not knowing if my medicine is in stock or not. There have a been a couple of times where my pharmacy were really slow sending out my hydroxyurea and I had to get my haematologist involved to remind the pharmacy to hurry up! Very frustrating, but I had some spare capsules
So that would be my first tip with hydroxyurea—keep lots of spare capsules!
My second tip would be to check its potential side effects. My first haematologist didn’t mention that hydroxyurea can affect our fertility and sexual partners too, so do bear this in mind if you hope for children in the future. Hydroxyurea causes skin sensitivity so I have to wear high SPF sun lotion every day now to protect against skin cancer risks.
I’m sorry to say but one of the most common side effects of hydroxyurea I’ve heard about from forum members is fatigue. It’s so common it’s called cancer-related fatigue (CRF). For me it was probably the worst part of my diagnosis and treatments as I had really bad fatigue for about 3 months after starting hydroxyurea. It caused bad brain fog (“chemo brain”) and made it hard to think clearly. All of this faded, thank goodness!!! It’s important to know how it can affect us so I’m sorry to say that it may cause you fatigue.
I’ve posted a lot about my fatigue and hydroxyurea earlier on in this thread so if you’d like you can read more right here, just scroll up. It was horrible! It’s not horrible anymore and I don’t need painkillers or feel nauseous or get headaches.
Definitely worth reading more about before it starting hydroxyurea I’d say @NinaSt, and if you have any questions at all please just ask as I’m sure we can suggest information that will help.
Hi Dibbers, just responding to your question about family risk. I have Polycythaemia vera ('PV') and my sister has Essential thrombocythemia ('ET') and an aunt on our fathers side had Essential thrombocythemia ('ET') too. My haematologist said its not genetic but for reasons unknown it can be familial - but that is rare. He currently only treats two Myeloproliferative neoplasms ('MPN') patients (including me) with family members who have also been diagnosed. He has co-written a number of years ago an academic paper on it. I have 3 other siblings and my father had 6 siblings none of which have a diagnosis. So my message to my own daughters and siblings is to be aware of it, have annual blood tests (which is a good idea anyway) but the risk is very low, so please don’t worry about it.
Hi Duncan, I just saw in a post you made in March 2024 the following… “It’s also not a risk for sexual partners, again due to evidence-based research over decades”… in relation to hydroxurea.
If that is the case, then thats great news, as myself and my wife have no risk of fertility etc. However I’d read elsewhere, that as I am on 500mg daily of hydroxurea for my Polycythaemia vera ('PV') then we should be using condoms because of the risk primarily to my wife. I’m just wondering is your comment above still current and if so could you point me to a source please? Thanks.
Hello again @Bosco, good to see you posting again. How have you been getting on? It’s great to see you supporting other new members here.
Sounds like your haematologist has said the same to you about MPNs like Polycythaemia vera ('PV') and Essential thrombocythemia ('ET') not being hereditary as mine has with me, which is a strange relief as I’d say it means our doctors have had similar trainings or kept up with recent research findings. Uncanny that you have a sibling with Essential thrombocythemia ('ET') and an aunt also with cancer as this is exactly my situation! I’ve also told my wider family so they can choose to check for gene mutations sooner rather than later, if they want.
I scrolled back to see what I’d shared in March 2024 and yes my newer haematologist told me then (and since) that although the warnings that come with the hydroxyurea state it has risks to sexual partners from potential chemotherapy transmission via bodily fluids, my doctor reassured me that it’s basically impossible for something as “mild” as hydroxyurea to affect someone else via sex. My haematologist is rather young and recently trained with a fancy renowned expert on Myeloproliferative neoplasms ('MPN') so I take his advice without too much questioning.
In the meantime, perhaps this Macmillan research about hydroxyurea may be of interest and maybe even reassuring, which states; “It is possible that small amounts of chemotherapy may be passed on through vaginal fluids or semen. If you have sex during this treatment, your cancer team will usually advise using condoms or a dental dam to protect your partner.” Hydroxycarbamide | Macmillan Cancer Support
It’s a rarely discussed area, regarding intimacy with others whilst living with a chronic type of cancer and long-term chemotherapy use, so thank you for bringing it up @Bosco.
May I ask how you’re getting on since earlier this year, I hope you’re bearing up okay with the Polycythaemia vera ('PV') diagnosis and its aftermath?
Thanks @Duncan thats reassuring and logical. It seems like the guidance we’ve seen is more of a blanket message that encompasses all forms of chemotherapy, including hydroxyurea, but when you step back and think about it (though I’m not a medical professional) it seems at least extremely unlikely to have an impact on ones partner. My next appointment with my haematologist is in a month so I’ll raise it with him, but he never mentioned it when he put me on hydroxyurea. He took care to mention the need for me to use SPF50 so I feel he would have said something regarding sexual activity too if there were risks.
Thank you for asking how I am getting on. I was put on monthly venesections back in March/early April from memory as my HCT was 0.53. It rapidly shot up to 0.60 so the frequency was increased to every fortnight. It’s been as low as 0.49 since, but last time it was 0.51 so he has decided to put me on hydroxurea 500mg daily in parallel to fortnightly venesections for a month. Hopefully that will stabilise it. I’ve only been on it a week, and so far, touch wood, I’ve had no side effects. But I’m taking it day-to-day and trying not to look too far ahead. It’s early days for me on my Polycythaemia vera ('PV') journey (though I had Essential thrombocythemia ('ET') for over years pre-Polycythaemia vera ('PV') diagnosis), but one thing I’m conscious of is not to get too excited when something goes well (like a drop in HCT) or too down when something doesn’t go well. And also to be upbeat around my family especially.
You’re very welcome @Bosco, and you know reading that your haematologist mentioned for you to wear high SPF lotion makes me think they know their stuff. Hydroxyurea unfortunately increases our risk of developing skin cancer, but I’m told it tends to be very treatable (although I’d never want to experience this). My haematologist always checks I wear sun lotion, a hat, sunglasses, and has even checked I wear sun-protective long-sleeved clothing as he knows I like to hike.
I’d be really interested to know what yours says about how taking chemo like hydroxyurea can affect our partners, but only share if you feel like it of course. I’ll be hoping your next appointment goes really well.
While I’m not a doctor, I keep an eye on my haematocrit at each blood test and if it’s near the normal range for people without blood cancer then I think to myself that mine is doing well. My blood tests were really frequent after diagnosis, like you it sounds, but since my haematocrit gradually settled down the testing was done further apart. Now it’s only every 3 months, like active monitoring AKA watch and wait for folks with other types of chronic blood cancer but with additional daily chemo!
So I’d say it sounds like your treatments are working as intended so far, good stuff! Try not to worry about your haematocrit changing a bit each time as my haematologist tells me this is totally normal, and in fact to be expected.
Do please keep us posted @Bosco and keep looking around the forum as there are many of us here living well with Myeloproliferative neoplasms ('MPN') who I’m sure would love to hear from you and your lovely optimistic approach to all this.
Apologies @Bosco, I had missed your message until now. I appreciate the information and the reassurance. The reading I have done did suggest it wasn’t likely but it’s great to hear that from others.
It’s been a few months since I’ve jumped on but I thought I’d just give a little update on how I’m going. I had only recently been diagnosed and was Polycythaemia vera ('PV') and was stressed and unhappy with my Haematologist… well things have changed, I mean I still have Polycythaemia vera ('PV'), but I’ve got a new Dr who is lovely, and actually spends time with her patients and listens, I was in tears after my first appointment because I felt like someone was actually caring about me and my condition. I had my Dad with me so he got all the info with me, obviously including that it’s a blood cancer, but we came out and said to me “I just glad you have someone looking after you”. So that was 5months ago, and that was the last venesection which got my levels right down to .38 hematocrits. My next blood test was 3mths later and was up to .43 and so I had another maintenance venesection after another visit to my lovely doctor which ended with a “I’ll see you again in 3months”. So other than staying on blood thinners, I’m on maintenance venesections and feeling actually better than I have in ages.
And I’ve been back to the neurologist after another MRI to check on my CVST clots, which have now “almost completely resolved” and my brain is in good condition for my age with no visible damage, so I’ve been lucky and I’m incredibly grateful.
Anyway that’s where I am, I’ve got my next blood test in late October. I’m still getting my head around it all but I’m ok so that feels like a victory!
Hey there @CourtM, thanks so much for your update. This sounds like great news! I’m so glad your change of haematologist has found you a lovely one, it really makes a difference. Especially as Polycythaemia vera ('PV') is chronic—we’ll need to have many dealings with these doctors, so it’s good to get along, I’d say! I cry with mine too, shows how caring he is I reckon.
Just wanted to also say how great it is for your haematocrit to have reduced so well, looks to be within the normal range for people without Polycythaemia vera ('PV') so that would feel very reassuring for me. I bet that helps with feeling better than you have in ages, keep that up!!!
Aw such good news @CourtM about those CVST clots too, I do love it when forum members share when treatments are helping, gives us all more hope. No visible damage and being almost completely resolved sounds incredible, reminds me of being told I had “minimal scarring” after my heart attack. I know that gratitude you’re feeling.
Hold onto your victories and marvel at them I’d say, and do feel free to share even after any setbacks as I’m sure you’ll still find empathy here. Now enjoy the nice long break before your next appointment!
