Hi Again,
I've now hit 60, and have decided to turn down the Hydroxy recommendation - don't want to take a a chemo drug. Will continue aspirin and 6 monthly monitoring. Feeling fine.
Platelets still steady around 570, JAK2+ve.
I understand they only start at 65 years age in New Zealand - is it 60 in all other countries?
Had anyone out there also turned down HU?
Thanks...
Thanks
Take your haematologist's advice. I am 59, live in UK, diagnosed with ET Jak2 +ve last September and put on Hydroxycarbamide and Aspirin. I think the chemo name scares people. I'm on a very low dose (500mg daily) and I have no side effects. Minimises risk of stroke and other thrombotic events. Wouldn't be without it, it's comforting.
I totally echo what SDJD says.
I have PV, started Hydroxy at age 59, now 64 and had no problems whatsoever with it.
Hi, I am in New Zealand and I think most places here say 60, but there are other people in NZ who have reasonably steady platelets who have decided to stay on aspirin and watch and wait after 60. Where are you?
Wendy
I understand your concerns and I felt the same myself. Most people on hydroxy seem to tolerate it very well - I have 2 other family members doing fine on it. I am ETJAK 2+, now 70 and was diagnosed after a minor stroke 2 years ago. I did the research and decided that for me Pegasys Interferon was the best option. Had a bit of a struggle getting hold of it, but was able to after changing hospitals. I have now been on 45 mcg for 10 months, no side effects and platelets down from 900’s to within the normal range. Haematologist is planning to check my allele burden after a year. So i’m Very pleased but for you it may depend on what drugs are available locally. Good luck! Tessa
Pick me!! I am from NZ and yes it is 65Years, I was asked to commence HU when I turned 65, I declined that offer. I am fit and well with no symptom's of ET! work shift work including night duty and cope well. My platelets' are stable around 600-670 and have been for the last 2 years. I am on aspirin 100mg daily and are happy to take. I have a blood test every 6 months and see my haematologist once a year. He is more than happy with my decision. I will take HU when I have too!! I eat a very healthy diet, lots of exercise and good sleep and relax as much as possible!! Good on you!
Best wishes Lyn
Thanks Lindiloo - very encouraging!
Hi. 60 isn’t written in stone. From my experience at Guy’s in London it’s just a number around which a ‘conversation’ might begin to take place about commencing drug treatments - simply because all the evidence suggests that the risk of a thrombotic episode increases significantly in older age. However, we’re not numbers, we’re individuals. Anyone reading my posts will know that I was very treatment resistant(!). I’m not yet sixty but my platelets we’re climbing. And at 1700 Hydroxy was a no brainer. It’s been nothing short of a miracle. Within three or four months my platelets have tumbled to normal range. I’ve had no side effects and I’m on a really limited dose (8 tabs a week). So first, hitting sixty doesn’t automatically mean commencing Hydroxy - or Interferon or whatever. And second, if you do start, it not the great drug monster it’s sometimes feared to be. Right now, for me, it’s proved more friend than foe.
Thank you for this comment. I’m on 1000 Hydroxy a day and it’s for life. I’ve only been on chemo drugs 4 months so I am hoping I made right decision.
Hi. Like age, the interventions are never written in stone. Dosage can fluctuate - up or down, or sometimes both over time. And drug regimens can change according to disease symptoms and progression. But more than that, new drugs, new understanding and new approaches to managing MPNs are constantly coming on stream. It’s an exciting time and the potential of stopping the disease in its tracks is now being glimpsed on the horizon. Who knows, maybe we’ll live to see the realisation of a cure. Keep well.
I'm in NZ and have started Hydroxyurea, aged 59. This was necessary in my case because my high platelet count was causing troubling symptoms. The Dr would normally have had the "talk" with me regarding HU when I reached 60 or if my platelet count reached 1500. Mine got to just above 1250 before we really had to reach for the pill bottle.
Really it is a call that you will have to make in concert with your specialist, but I think that your relatively modest platelet count and good health would certainly favour keeping going with aspirin only.
Best Wishes,
Peter
Hi, I met a lady who was of the same opinion as you. Her platelets were in the 700s. Having suffered a stroke when I was 50 and made an almost full recovery, I know that medication is the best way forward and that recovering from a stroke to lead a full life only happens to 1/3rd if stroke victims.
Think long and hard.
Best wishes,
Well I was high risk at 66 and reluctantly agreed to take Hydroxy, even though I was bothered by the suggestion that it could cause leukaemia. After 4 weeks of increasing disability, excruciating joint pain and severe breathlessness beside many other side effects, I stopped and took nothing for 5 weeks. At my 'eventual' appointment and after a lot of research, I told my haema. that the best option for me as one intolerant of hydroxy and with all my symptoms is Pegasys. That was the first time i was allowed to voice an opinion and have some kind of input. The presence of my husband and help from my specialist nurse (commonly known as badgering) caused that, I'm certain. Amazingly, although he still had his ear closed and STILL referred to the fact that I should go back on the hydroxy and he 'has hundreds of patients on hydroxy' (well I'm pleased they can tolerate it) he agreed to put me on a low dose, once a week. He had to order it in and it seems he travelled to London to 'learn' about it.
I have now given myself the first dose last Friday and so far, with all the side effects, which I'm tolerating so far, I feel much better. July 10th is my next visit and I am hoping for a reduced platelet count, even this early because something must be making me feel better mentally. Hope all goes well with you and you're able to have some input to your treatment. ATB. Penelope
Thanks Penelope - hope its going well for you
So far so good, even with the dire side effects. Platelets down to 320 and looking so much better. Aching for Britain however and sleeping is very welcome when it happens in my overheated state! Still loads better though, thanks.
We have no simple choices, there is no clear road map.
First choice/gamble is risk of thrombosis/stroke versus risk of drug side effects.
My game plan is to stay as fit and healthy as possible and keep door open for SCT if required. Hence I’m prioritising avoiding stroke.
Second choice (for those of us ET, PV or early MF) is HU or Peg.
I’ve gone for Peg because if I can cope with the side effects (fine so far) and if I’m in the subset who achieve a good molecular response, I might slow progression. HU does not appear to offer this chance although appears better tolerated and has (generally) quicker initial response (although I’ve had good initial response to Peg).
I’d strongly advise anyone thinking about HU v Peg to spend an evening google searching, including this website. I said at the start that there are no simple choices and this is in part because our Hems can’t agree on best first line treatment.
My personal view is that the evidence supporting the Peginteferon Bulls is slowing increasing, including latest Ropeg v HU Year 2 Trial results. After 6 months HU ‘winning’, after 12 months a draw, after 2 years Ropeginterferon pulling away. Year 3 results eagerly awaited, to put it mildly!
Yes. 26 years at platelets of 500 and told reaching 65 has changed everything. We are not convinced.
Hi I have been on Hydoxycarbamide for 22 years now 73 . No side effects platelets 250 to 450 . I dont fancy a stroke or a heart attack.
Town crier
My haematologist said 60 and 1000 to me, so they obviously have different views even at the same hospital as Lyn and I are under different haematologists based in Wellington hospital 😉 Maybe that decision is also partly dependant on the patient though do you think, as I have a few other things going on that also put me more at risk of a stroke already?
Best wishes
Wendy
Hi Wendy,
Just a thought!
I have noted a difference of mutational status between you and Lyn. I believe you are Jak2+ which is a further risk indicator for thrombotic events. On the other hand Lyn is Calr+. I wonder if this may have some bearing on Lyn’s haematologist respecting her wishes not to commence treatment.
Hi Mary,
Yes maybe the CALR is a factor and also the fact that Lyn's platelets are pretty stable. I'm only on aspirin at the moment as I'm only 56 at the moment, so we'll see when I get to 60 what they say then, although it may be earlier if my platelets keep rising😉 I usually have pretty thorough discussions with my haems regarding my condition, research etc. so I'm confident it will be a well weighed up joint decision when I get to that point as I'd rather put it off as long as possible, but at the same time I realise I have a higher stroke risk due to other medical conditions too, so a double whammy😁
Wendy
Strange I was only 52 my platelets were hovering in mid 500,s and U was put on hydroxyurea I think I started too early Now at 60 my platelets climbing near 900 take 2 capsules 3 days and 3 capsules for 4 days I believe my Consultant is planning Angrelade think thats how u spell it lol So many different treatments anyone else similar to my treatment ?
Hello - I'm in Australia and it's 60 here. Like you I wasn't keen on taking Hydrea from 60 and as my platelets etc were ok 650'ish, I was taking a 'I'm not taking it' line with my haemo. However at 58, my haemo looked at one of my neurological scans taken for headaches during one my appointments with her and she noticed ischaemic changes in the white matter part of my brain (ischaemic = small dead areas). She said it was due to my ET and that even though I had been on aspirin, they had still occurred. I tell you that news totally freaked me out. So I immediately started on treatment in November 2016. Now I'm on 1000 mg and my platelets are down to 412 ( the best in years). I now have the position that I'd rather be taking Hydrea than suffer a stroke to be quite frank.
Cheers
Mark
Hi. It’s 60 in the U.S. I too was very reluctant to get on it because of it being chemo & “toxic.” But am glad I did get on it. Before I got on I almost died of blood clots filling both my lungs. I couldn’t move or talk, just moan. Fortunately my husband was home, paramedics close by & got to the hospital quickly. But even with all that ‘luck’, my lungs had serious damage. I now have to sleep with oxygen every night & when I get respiratory infections I can’t fight them off, need oxygen 24/7 and recovery takes 4 times as long. My most recent infection included severe coughing which damaged my ribs. I’ve had to sleep in a chair for 5 weeks so far first in order to breath well and then because the rib pain is too severe if I lay in bed. Others on this site had clots that resulted in severe strokes with permanent disabilities and heart attacks. To me it’s a no brainer. Take hydroxyurea and stay alive and functioning. Blood clots are one of the two major causes of death for those of us with ET. And if you are one of the very few who don’t tolerate HU, switch to something else. But stay alive. Good luck & remember we’re always here to listen & help when possible. Katie
Thanks, Anna.
Hi I was diagnosed with PV Jak2+ in april 2016 after a few TIA's. I'm 48 and female. Ht fluctuating around 50%, platelets fluctuating around 670 since then. I turned down the hydrea recommandation as I feel okay except of tiredness. It's like Paul says: First choice/gamble is risk of thrombosis/stroke versus risk of drug side effects. I don't feel insecure despite the TIA's (at least most of the time), hydrate myself (one glass of water every half an hour) and take aspirin every day. My blood is monitored every 3 months. Last june platelets were 580, lower than usual, maybe a natural fluctuation, maybe disease evolving to MF (?), blood will be checked for teardrop cells in september. BMB gave as a result MPN-U, fibrosis grade 2 (hematologist wasn't worried at all as he says most people have some fibrosis). Excuse my English as I'm Dutch.
By the way this is a great forum!
I didn't want to take the chemo, but I feel soooo much better for taking it.😎
Oh that’s good to hear. My headaches have improved that I had had for years. It makes a drastic difference.
Thank you for all your replies - it's great to hear real experiences rather than just theory. The vote seems to be to go with the HU.
My locum heama seemed unsure, so I have an appointment with main heamo soon, for a second opinion...will keep you updated!
Hi I am new to the this site but I was diagnosed with ET and Jak2 about 7 years ago and now at 52 years old they say it is PV and have put me on one hydroxycarbamide a day which doesn't seem to be lowering my platelets at the moment but I have monthly blood tests so I will see what happens, I came across this thread due to increased weight but it is interesting to hear everyone else's thoughts
I think it’s because we are older higher risk. My platelets were high that’s why I decided. But I am still finding it hard even coming to term I’m on 1000 chemo a day. I still get tired fatigued. But I try to be positive I’m older so do want less risk of stroke. That’s the main reason I decided.
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