Hydroxycarbamide

[Carol0925]

Hello, I was diagnosed with ET and JAK2+ last week. Have started aspirin and given information re Hydroxy. I’m not sure whether I want to start Hydroxy as I have no risks, apart from high cholesterol which Haematologist did mention. Just wondering if anyone has delayed starting Hydroxy. My Platelet count has been 560, 530 and most recently 480.

[Scottishterrier]

Please give it a go about 23 years ago I had a blood clot on my liver I went getting like heartburn and sore too breath told my consultant he sent me for a CT scan that was November and didn't get my results till January and that was when they discovered the blood clot and my consultant suggested interferon but I read an article on it and side effects were horrific and he also suggested hu it was a chemo drug I asked if I would lose my hair and he said no but could not have children only two problems tiredness and nausea but I had to have a gastroenterologist consultant who I am still under he is fantastic he prescribed domperidone and does the trickStay safe

Scottish terrier xxx

[Carol0925 in reply to Scottishterrier]

Thank you and pleased you’ve found a good Gastroenterologist.

[Mirror368]

Your platelets are not especially high. Should you decide to go on Hydroxyurea I suggest you ask your doctor about starting slow on 500 mg on Monday/Wed/Fri. This way you could adjust to any symptoms.

Good luck, Eileen

[Carol0925 in reply to Mirror368]

Thank you Eileen, will discuss the mon, wed and fri dose with Clinical Nurse Specialist.

[hunter5582]

The age-based risk assignment does apply to large populations but not necessarily to individuals. We all age differently. Most doctors do follow the age > 60/65 recommendation for cytoreduction for ET, but not all do. Some make a recommendation based on an individualized assessment of each patient. My MPN Specialist said "65 is the new 35." I like that doc!

High cholesterol should be considered a risk factor for a cardiovascular event in the context of JAK2 positive ET. It is important to carefully consider your risks when deciding about cytoreduction. Your PLT numbers are barely elevated. In fact, they are below the target of 600 many MPN specialists use for ET. Note that individualized goals are very important in treating MPNs.

There is more than one option for treating ET. Hydroxycarbamide and Pegasys are both recognized as viable treatment options. There are also second-line treatment options like anagelide. Here are a couple of articles worth reading.

mpnjournal.org/how-i-treat-...

legeforeningen.no/contentas...

Note that if you do choose to initiate cytoreduction with hydroxycarbamide, there are different dosing options. Some will start with the generic 500mg every other day rather than daily. In the brand name Droxia, there is dosing available in 200-300-400mg. This is worth discussing with your MPN care team.

Suggest that prior to making a decision, you consult with a MPN Specialist for a second opinion. You may want to engage the MPN Specialist for ongoing care or set up a shared-care arrangement if you want to use the local hematologist. Here is a list. mpnforum.com/list-hem./

Wishing you all the best.

[Carol0925 in reply to hunter5582]

Thank you for the advice and information.

[mhos61]

According to the World Health Organisation criteria for risk, your age and being Jak2+ puts you in the ‘high risk’ group. This is why your haematologist is suggesting that you start cytoreductive treatment. He/she will also consider other cardiovascular risks such as the high cholesterol that you have already mentioned.

Having said all that, it’s your choice whether to medicate, and nobody can force you. There are other treatments too, such as interferon and Anagralide. There are side effects to all of these drugs, but it doesn’t necessarily mean that you will experience any of them.

I would imagine with platelets that low you would be put on a low dose of hydrea if you do decide to go ahead.

My platelets were 500 at diagnosis seven years ago. Initially, I was put on 500 mg hydrea daily. My platelets dropped to 288 very quickly, and the hydrea was then reduced to 500mg Monday to Friday only. I have been on the same dose ever since. My platelets are stable now, somewhere between 320/360. I also had borderline high haematocrit which the hydrea has also reduced, so all in all my thrombotic risk has been significantly lowered.

Don’t feel pressurised to commit. Consider each treatment available to you and discuss any questions you have with your healthcare provider.

[Carol0925 in reply to mhos61]

Thank you for replying. I will be seeing my HC provider in a month.

[Phantasia]

I was on Hydroxy for 7m. Unfortunately I ended up with peripheral neuropathy which was pretty awful and destroyed 2022 for me.My platelets barely decreased.

So I turned out treatment intolerant and resistant.

My last hydroxy capsule was 18m ago and I have remained on aspirin only.

So far my platelets have stayed at the 650 mark. I am triple negative though.

Having the JAK2 gene increases the risk of an incident. If you're over 60 that increases risk again.

I am 62 and if I need medication I will opt for interferon.

Your platelet counts aren't that high.

You can only be guided by your haematologist as every case is different.

My experience with Hydroxy was terrible and I won't take it again. Having said that most tolerate it quite well. I was just unlucky.

Think about, don't rush into a decision.

Good luck. 👍

[Carol0925 in reply to Phantasia]

Thank you for replying and really sorry you developed PN. I have chronic nerve pain too 😬 Have you found some effective treatment for your pain? I take Nortriptyline which really helps me have better days. Take care x

[Phantasia in reply to Carol0925]

I was on low dose Mirtazapine for several months mainly to help me sleep because the pain was at it's worst at night.

The PN seems to be gone for the most part but I get occasional flare ups. When I do it isn't nearly as bad as the burning sensations I was experiencing.

All the best.

[Franko21]

I’m 64 with ET & Jak2 also high cholesterol, platelets when diagnosed 588 going up to 722 . I now take baby Aspirin and weekly 90 mcg of Interferon which I tolerate well no side effects except itching which I have under control. Platelets now after 6 months 276 . I was very scared of side effects to begin with and I felt fine wondering why I would take a drug that was going to make me feel so ill with horrible side effects but I just gave it a go and all fine and if it’s not I can just stop . So the choice is yours but it might not be as bad as you fear . Hope all goes well .

[Carol0925 in reply to Franko21]

Thanks for commenting. Pleased to hear you’re tolerating Interferon.

[amarylis]

I was diagnosed with ET 28 years ago, when I was 38. At first, I was on aspirin only, until aged 50 and with blood counts consistently breaching 1000, I was put onto Hydroxycarbamide. I tolerate it well. I take 500 mg daily. It keeps my counts below 400 and I’m celebrating my 66th birthday in a couple of weeks. To me it’s been a no brainer and potentially a lifesaver. Good luck xx

[Carol0925 in reply to amarylis]

Thanks for commenting. I’m 66 x

[Loubprv Volunteer]

hi

I really can’t advise you what to do. However I can offer some reassurance that I ve been taking 1000mgs Hydroxi daily for 14 years and am very well. The only POSSIBLE side effects I’ve had ( over the last two years) have been skin related. A couple of small basal cell carcinomas on my face and a number of actinic keratoses on my chest and face. However, as 50% of my friends have the same and aren’t on Hydroxi I may well have had these anyway! I’m 69 and have PV.

Don’t be frightened of this drug, it does its job, and if it suits you, you may well be taking it for 20 plus plus years with absolutely no problems. All the best Louise

[Carol0925 in reply to Loubprv]

Many Thanks for a reassuring comment Louise. BW Carol

[Isabella1854]

I’ve been taking Hufroxy Carbamide 500 mg daily and 1000 on Daturdays and Saturdays and Sundays + 75 mg Aspire daily for just over a year now. I can honestly say that I have had no side effects at all and wouldn’t know there’s anything wrong. I think I’m very lucky as not everyone is so fortunate. I can only say try it and see, there are alternatives.

[Carol0925 in reply to Isabella1854]

Thank you Isabella, so pleased you’re not having any side effects which is reassuring. ☺️