Now part of the polycythaemia vera posse

Recent diagnosis
,
363

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 :face_exhaling:

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.

Here’s some great information about hdyroxyurea from Macmillan Cancer Support: Hydroxycarbamide | Macmillan Cancer Support

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.

3 Likes
364

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.

4 Likes
365

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.

2 Likes
366

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?

2 Likes
367

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.

3 Likes
368

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.

3 Likes
369

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.

3 Likes
370

Hello to my fellow PVers

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!

6 Likes
371

Thanks for sharing your update @CourtM

When dealing with blood cancers even the smallest of steps are to be celebrated

Take care

3 Likes
372

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!

4 Likes
373

Hi all, greetings from a new member :woman_raising_hand:t2:

I was found Jak2 on the 14th of July, and today I had my bone marrow results… Polycythaemia vera ('PV').

At 57, I am high risk due to having had an episode of amaurosis fugax back in February, what started all these investigations .

My haematologist is suggesting interferon or hydroxy, favouring the 1st.

I am as cool as I can about everything (well, you know what I mean) though still have a hepatology appointment tomorrow as it seems they found something in my liver.

Husband and I have a week away in Fort William from the 2nd of October, hoping to enjoy the beautiful autumn landscape, lovely to have something to look forward to. We are not afraid of rain.

Nice to have you all to talk to and exchange tips and experiences

Love to all,

Cecília

3 Likes
374

Hi Duncan I hope you are well? Just circling back to say that my haematologist said that there is no risk to my wife with me being on hydroxurea.

In other good news my HCT is coming down (now 0.46) due to a combination of the hydroxurea and monthly venesections. I’ve no side effects so far other than post nasal drip which may or may not be related but which is causing an ear problem for me.

3 Likes
375

Hi @CKG Cecillia

Hope appointment has gone okay and all on course for your break in Fort William.

You’ll know that at this time of the year weather can be changeable and I’m sure you will have clothing for all seasons

2 Likes
376

Aw hello there Cecilia @CKG, I’m so sorry it did turn out to be Polycythaemia vera ('PV') after all. You are joining an apparently rare club that no one would ever want to join, but there seems to be many of us around the forum living well with Polycythaemia vera ('PV') and other Myeloproliferative neoplasms ('MPN') as you’ve seen. Welcome!

I’m glad to read you’re staying cool through this, and perhaps keep note of what is helping and your process as I’m sure others would be interested to know, including your haematologist.

It’s a lot to take in, isn’t it? I remember finding a lot of the medicalised language indecipherable at first, and actually this great Blood Cancer UK information about Polycythaemia vera ('PV') helped a lot: Polycythaemia vera (PV) | Blood Cancer UK

This from Macmillan is also great: https://www.macmillan.org.uk/cancer-information-and-support/blood-cancer/polycythaemia-vera-pv and this from Leukaemia Care: Polycythaemia vera (PV) - Leukaemia Care

I’m sorry that you have further testing to await for other health challenges and know how that can feel, so I’m glad to read you have that lovely trip ahead. I just got back from one and feel a little refreshed and unwound, I hope yours is a real treat for you, a place to exhale after what I imagine has been a lot of uncertainty.

It’s great that you’re here Cecilia and do keep us posted. Have a further look around the forum using the search box at the top and you’ll see we have regular threads like the Friday jukebox, monthly film and TV reviews, and all sorts of more focused big C stuff too of course.

Take care and have a great break!

4 Likes
377

Oh super interesting @Bosco, thanks so much for sharing that. So both our specialists have said the same, despite those scary warnings on the medicine packaging! I’ll let my other half know too.

I’m really chuffed to read of your haematocrit coming down so well, practically into the normal level already. That’s really great news, and I think from what my specialist tells me it means that your blood is thinner and thus less at risk of clotting. Great stuff, I love it when our treatments work for us!

Can’t say I’ve read about ear problems being related to hydroxurea, but I know some forum members have mentioned almost tinnitus-like auditory sensations, perhaps due to thinner blood? Pass it by your haematologist I reckon, but if it’s painful do have it checked soon.

That’s great not to be having other typical side effects from hydroxyurea, long may that last. Keep us posted how you get on @Bosco, I’m really glad your treatment is working.

4 Likes
378

Hi all,

Why is it that we do so many tests but do not get to see the results? Is it because the doctors think we shouldn’t know or maybe wouldn’t understand?

I had some investigations that started with an abdomen ultrasound where a “solid mass with vascularity” was detected. Then I had a CT scan, followed by an MRI. I asked the haematologist if he could advance the results ahead of my appointment with hepatology (he had requested them after all), he had a quick look, mentioned the words “spleen borderline enlarged, possibly slightly enlarged liver”, then said it was not his specialty and he would prefer that the hepatology team would tell me their findings.

I already knew they had found the hyperplasia, they mentioned this at the appointment; saying it was nothing to worry about, that for peace of mind I would have a repeat MRI in a year, and that was all! What about the borderline spleen and liver size, why do they think it is not important? I should I not want to know this?

Also, after my BMB, the haematologist just said it had confirmed Polycythaemia vera ('PV'). I imagine he would have known lots more from it, was there nothing else he could have told me? For instance I have seen people here talking of some numbers from 0 to 3, not sure if related to fibrosis or scarring (or are these the same thing), but should I not know this too?

Talking this over with my daughter who had ovarian cancer at 22, 2 years ago, she said it is the same with her. They call her to the hospital and say that all is fine, and she doesn’t get to see any results either. She thinks it’s a waste of time.

To be fair, I do get to see the letter they send to the GP, and the information is quite concise. Sometimes I can find some small extra detail, so maybe if more information is not relevant for the GP, it might not be to me…

Is it the same with everyone else, in terms of getting to know results?

Thank you

2 Likes
379

Hi @CKG

I’m sorry to read that you’re having issues getting information from your team.

Unusual and certainly not an issue I’ve experienced.

I always get my Haemoglobin, Total White Cell Count, Platelet Level and Neutrophils at every appointment from my Consultant.

Also for last year getting Ferritin levels as there was too much iron in my blood because of the number of Blood Transfusions over last 3 years.

I know from others on the forum that there’s an App where you can see blood results. We don’t have it in Scotland but I believe it’s available in England.

I can’t recall who mentioned the app so I’ll tag a few people who may know how to access

Wondering if you can help @CKG @Spangleystar @2DB

1 Like
380

Hi @DuncanB
I can’t see my blood results I have to ring up and ask them to email me

You can also request a SAR from the hospital and doctors

There should be a how too on the hospital website

1 Like
381

Hi @DuncanB

Thanks for your reply.

Sorry for the confusion.

I do get the full blood count results on Mychart, but not these other results… that is what I wish I could see.

Cecilia

2 Likes
382

Ah thanks @2DB I hadn’t heard about this. Will certainly do it!

2 Likes