Treatment to commence

[lynnieb]

Had a blood test 2 weeks ago to see if I needed to start treatment for ET. Unfortunately, I do. My nurse phoned today, and said I had to start 'sooner rather than later'. I go to see my consultant in 3 weeks to see what will happen. Bit scary, as I'm 54, and they said I probably wouldn't start meds until I was 60, but my platelets have been 1100-1400 for ages, and the clotting test they did showed I need to start. Don't know what drug I'll take yet, so, watch this space!!

[hunter5582]

In that level of PLTs, you are at risk for hemorrhage. It is not surprising that you would initiate cytoreduction, particularly if your results indicate bleeding risk.

Hydroxycarbamide and Pegasys are the two preferred medications for ET. Pegasys is currently in short supply, however. While HU is faster acting, PEG is usually preferred for younger patients (age < 60). Besremi is currently available as an alternative to PEG in some cases.

Suggest you educate yourself about each of your choices so you can make an informed decision. There are excellent resources on the MPN Voice site. Here are a few more links to get started. '

drugs.com/monograph/hydroxy...

oralchemoedsheets.com/sheet...

drugs.com/pro/pegasys.html

nssg.oxford-haematology.org...

Wishing you all the best on the next stage of your journey.

[lizzziep]

I started treatment just before I was 60, diagnosed at 57, but probably had it a while. I was started on hydroxy which I took without problems for 3 years, then Anagrelide for about 6 or 7 years, now on Momelotinib as progressed to MF a couple of years ago.

It is daunting starting medication but many people take various ones without any problems. They should monitor you well when you first start on it. In the UK it’s usually hydroxy to start with as that’s the cheapest! Don’t be scared by the list of possible side effects of any of the drugs they’re all possible but unlikely.

Hope all goes well for you.

[Bluetop]

The idea of taking medication for life is something of a shock, as well as getting your head round ET. You don't say if you have any symptoms, hopefully not. Speaking for myself, I started on hydroxycarbomide 9 years ago and have by very fortunate with the minimal side effects. I wish you well. I think you will always find this forum informative and supportive.

[RazB]

hi, much better to start treatment than not. Then you will bring your platelet count down and it will be monitored at a safe level. My count was a similar level to yours when I was 39 and I started Hydroxycarbamide which I’m still on now, I’m 56. It took a while to get the dose right and I felt a bit strange for a few weeks but all is ok. Do you have an MPN specialist? Or at the very least a haematologist who knows and understands MPNs? In my experience that’s just as important as the medication and care that we receive. Stay positive, well hydrated and rest when you need to. Let us know how you get on xx

[lynnieb in reply to RazB]

Thanks x

[Threelions]

Hi,

I started ET treatment as soon as I was diagnosed (51 years old).

It’s much better to effectively manage your platelets with a recommended treatment rather than risk having a related episode. Prior to diagnosis I had suffered 2 x tia. Since diagnosis & treatment I’ve been ok so far, touch wood.

[lynnieb in reply to Threelions]

Because I also have neurofibromatosis, they were a bit reluctant to start treatment. I think my platelets being so high for so long, though, forced their hand! Thanks x

[Mostew]

I do hope you resspond well to whatever medication you decide is the best option. I keep reminding myself how lucky i am to live in a time when we have ways of controlling MPNs guess years ago people wouldnt know why they had stroke etc...

Do all you can to be as healthy as you posibly can ( in mind and body)