Now part of the polycythaemia vera posse

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Ha we could probably start a thread of our favourite post-treatment treats! Bet there’s quite the range… of sweet treats :cupcake::chocolate_bar::doughnut:

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Tofu fish and chip poisoning being odds on favourite :wink: A crime against humanity

I notice after the leeches, it is a savoury treat, like a croissant sets me back up

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Ha ha ha I’d hate to get food poisoning from tofu!!! Funnily enough I’m also usually all about my savoury foods (mostly sandwiches) but I like to follow my tastebuds on the rare occasions I fancy something sweet. I nearly got a pain au chocolat instead of the doughnut from the vegan café the other day. Wonder what you’d think of their baked goods, not a trace of animals in there! Going there now actually to fuel-up pre-cinema :croissant::movie_camera:

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Hello all

My Haemotologist has switched me from hydroxycarbamide to ruxolitinib

Is anyone taking this medication?

I’ve only been on it for a few days and so far I’m not really feeling anything but wanted to know how people initially got on with it, and after a while whether side effects become a bit more apparent?

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Oh wow @Rammie18, so you’ve now been prescribed and tried the main 3 medicines?! I hope the ruxolitnib works really well for you, sounds promising so far. Long may that last.

The notes I took at the conference regarding it suggested; “Ruxolitinib treatment is more effective at relieving fatigue and achieving overall benefits than hydroxyurea or interferon. It’s also better for complete response and event-free survival from thrombosis, haemorrhage, transformation (from one cancer to another), and death.”

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I know right, I’m always one that will do anything if be it just for the experience.

I don’t have an enlarged spleen but started showing visible side effects weirdly after 4 months of taking hydroxy.

With me keeping things to myself (though not on the forum) I’m constantly masking a lot of how I feel or make out that everything is fine and power through situations. But eventually things catch up and I just implode. Think I just needed a reset so being/trying something new may give me the jump start I need. Only thing is with my experience of hydroxy I feel like my body delays reacting to medication or picks a later date to build a resistance

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I’m sorry to hear of those side effects with hydroxyurea, hopefully they’ve faded now you’ve stopped taking it. Keeping my fingers crossed you carry on feeling fine with the ruxolitinib. Why do they have such weird spellings?! Feels like I need to have a whole dictionary in my head for all these Polycythaemia vera (PV) terms!

Here’s to an easier time of it with your treatment, dear @Rammie18! Just wanted to add that I’m glad you can share this stuff here. I wish you could do closer to home too, of course, although I recall your reasons for not doing so. Having a couple of loved ones I can be totally myself around regarding all this makes up for those who still can’t even acknowledge I have Polycythaemia vera (PV) nearly a year later :roll_eyes:

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Hey there @Ismawati64, wondering how you’ve been doing? I looked up that research you kindly shared and found the original article with all those cute illustrations and still couldn’t make sense of it! Perhaps my brain has cathexia, or perhaps I just needed more caffeine.

Anyway, hope you’re doing well.

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Hey there @adultdaughterof, wondering how your dad and you are getting on? How’s he settling into his treatments? Hopefully his tiredness has decreased, or at least balanced out a bit so his quality of life feels improved.

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Hey there @Lucky, how have you been doing? What did you decide about treatment after all? I wonder if you went with hydroxyurea on top of the aspirin and phlebotomy? Hopefully you found a way to balance your work needs and your treatments and any side effects. Do please let us know how you’re getting on!

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Noticed today my hairs started to thicken which is a relief too… I know I shouldn’t be concerned about appearance over the grand scheme of things but it just makes things more complicated if I look symptomatic.

My Haemotologist was really understanding and I feel not only just he care but also tells me what I need to hear regardless of it’s what I want.

Today was the first day I did feel tired and people noticed… work is becoming very complicated and battling over what I love to do over working with people who make it difficult with my health scrambling for attention.

Appreciate you and all those contributing as it really does keep me going and feel supported in this journey of ours

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You know, although I’m bald (well, I shave my head) I wondered if I was losing more beard hair as it seemed like there was more of it in the sink after I’d settled into taking hydroxyurea. Perhaps I only started noticing it then and didn’t care about it before… My other half doesn’t think I’ve lost hair and my beard is still bushy, but I know what you mean. You kind of end up thinking hair loss versus death by clotting isn’t really comparable, but yes it is!

We have to go about our business, carrying ourselves and these blood cancer side effects in public, and if having a full head of hair (or full beard) helps us feel more like ourselves then that’s valid, I’d say. For me as an introverted person I don’t want to draw attention to myself. It’s a cruel irony that we can live long lives with these mostly invisible blood cancers and yet may still experience noticeable physical symptoms! I’m so glad your hair is thickening again, sounds like the new treatment suits you better.

Perhaps it’s time to consider a change in work? A slightly different role, or a move to a place where it’s easier to work alongside any Polycythaemia vera (PV) symptoms that arise? Easier said than done, I know. I’m trying to think about what my professional future holds as I’m not sure I can manage working full-time, and maybe don’t even want to now. These blood cancers really throw a spanner in the works, right?!

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Oh, @Rammie18 it must be a really difficult time for you personally and professionally.
I think it is very natural to really feel anxious about your hair thinning I think it is scary and so visual.
We are your forum family and you are always there supporting others.
I know how passionate you are in your career too and how much you love helping others again. So sorry that other aspects impinge.
Look after and be very kind to yourself

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Hi Duncan,
Thanks for asking. I decided on hydroxycarbamide but haven’t started yet. We delayed while a bone marrow sample was taken - just waiting for the results. Although it was painful the anticipation was worse than the reality (as with so many things). The doctor showed me the sample - I must have been still under the influence of the gas and air as normally that would make me feel very light headed. Fortunately work has quietened down recently so it’s easier to balance appointments and work. Having phlebotomy is interesting; my next is on Thursday and I can tell my HCT level is creeping up. I’m getting postural hypotension, my head feels like its under pressure/slightly throbbing and there is a feeling like a headache is coming on. I used to think this was normal (or at least due to the stress of work) but it goes after a pint is drawn off. Part of me is very worried by the term cancer but the thinking part knows I’m incredibly lucky and that I’m more likely to die with Polycythaemia vera (PV) than of it. I just have to keep reassuring that part of me. How are you doing?

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Hello @Lucky! Glad to read you’ve decided on your medicine. I’ve come round to feeling positive about hydroxyurea since my new haematologist pointed out that it’s been the main preventative treatment for kids with sickle cell for decades and yet they haven’t grown up to have a greater incidence of other cancers. Sounds good to me! I hope it works well for you. Watch out for the dreaded fatigue.

Sorry to read that your BMB was painful, and worrying. But now it’s over! Unless there’s some big change in symptoms we usually don’t need another one done as blood tests are just as accurate, apparently. Didn’t get to see my sample, but I would probably have been rather queasy! Funny how we can now tolerate more stuff, right?! I used to hate injections but thankfully don’t seem to mind these days.

Know what you mean about being able to tell when your blood is not quite right. Excellent somatic sensitivity! I wonder what else you can gauge is going on around your body? Keep note as you’ll likely see other patterns in what you’re sensing and you might be able to predict other stuff too. You never know, your haematologist might be interested too. I wonder if drinking more water on those days when you feel the throbbing might decrease those symptoms? More hydration generally is advised when taking hydroxyurea so I’ve got into the habit of always having a bottle of water nearby. Sure you know already but drink as much water the day before phlebotomy as you can. My phlebotomists often comment how easily and fast my blood drains which makes the process faster and thus I can get out of there quicker—my record is a pint drawn in just 15 minutes!

I also know what you mean about the C word. It’s bonkers to be living with a form of cancer after being so fearful of it during my life. But you know, sometimes I forget I have blood cancer! There are other times when I trust that it’s actually manageable and it’s not always at the forefront of all my thinking. Being an anxious person, this feels like a big achievement. Glad to read you’ve also been told that great aphorism of us being more likely to die with Polycythaemia vera (PV) than from it, such a relief isn’t it?!

Thank you for asking how I am. Today I’m feeling generally optimistic and also a bit preoccupied with non-cancer stressors so I guess they’re good signs that I have space for other stuff right now.

Keep us posted about how it goes, @Lucky. I hope phlebotomy passes uneventfully on Thursday!

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Hi @Duncan

I’m good, but a bit busy with work and meetings abroad. Hope you are doing well.

Ah, yes, the Sugar Thief cartoon :smile:
The mutation of JAK2 created clones that survive and grow with the help of sugar in our blood/body.

Although my treatment with interferon has already shown good progress (all blood parameters are within the normal range), the JAK2 clones are still around and stealing sugars in my blood. Occasionally, I’m experiencing a knock-down effect or like low-batt R2D2 :robot: due to low blood glucose blood high blood pressure.

I’m wondering when my haematologist will check my JAK2 again. Do you know or any one have a DNA test again after 12 months of the treatment to see JAK2 status (still positive or already negative/no mutation).

Hope you are all having a great week!

Best wishes from Ottawa,
Yuyun

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Rammie18 Ihope the ruxolintinib suits you better. I understand the delays in reacting to new meds. I was on an asthma medication once for about four months before I realised they were making me paranoid. I came off them and told the consultant, his reply was yes they sometimes make people feel suicidal.!!! I think my reaction to the hydoxycarbamide has increased over time but so has the dosage . So I am now waiting to see what they suggest, still enjoying the break from medication.

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Hello Yuyun AKA @Ismawati64, lovely to read that treatment is going well for you. What a relief, right? Sounds like you get some of the fatigue but that it’s tolerable for now, so I hope that improves. Haven’t figured out a pattern with my own energy levels yet, but stress definitely wears me out faster.

You know, the concept of testing again for JAK2 isn’t something I’ve heard of since diagnosis. Neither of my haematologists have mentioned me getting tested for it again. I got the impression that having the gene mutation is for life. It’s intriguing—can we decrease the gene mutation and thus do we have less blood cancer? Unsure if that’s how it works and a better scientist would need to explain it in layman’s terms for me to get it! Really interesting though. Did your haematologist talk about reducing your JAK2 mutation?

So you’re over in the Americas too, howdy! Glad we both found this forum from afar, it’s been a most helpful place for me.

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Oh goodness @Liz59, that paranoia doesn’t sound fun! Glad you’re not dealing with that now :face_exhaling: I can see why you’re enjoying the break from medicine!!!

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Hi Duncan,

A very interesting and reassuring point about long term use of hydroxyurea.

The BMB was probably done as I’ve had undiagnosed Polycythaemia vera (PV) for a long time. Persistently high platelet counts were recorded in 2016 but not investigated. However, I’m pretty sure my symptoms predate this by quite a while.

Yes tolerance does increase. I can now look at the blood leaving my arm without a second thought. Same with pain, having a kidney stone has recalibrated my pain scale - though there are very different types of pain of course. I know someone who was able to lift two broken arms above their head as their pain tolerance was so high. The doctor said they can’t be broken or you wouldn’t be able to do that but the x-rays showed clear breaks.

Leg cramps at night seem to be another sign of increasing HCT, for me at least. Has anyone else noticed this?

I’m fairly careful about hydration but have increased my liquid intake as I’m due another blood letting tomorrow. Last time it stopped and I had to start pumping by regularly clenching my fist and relaxing. Fingers crossed that the extra hydration helps.

Yes life carries on. Bills still have to be paid, work completed but holidays and friends too.

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