Et treatment options

[Loubielou]

Hi All, I am 46 and have ET jak2+ . I was diag 6 years ago and my platelets have stayed around 600-700. Treatment has been low dose aspirin up to now. Unfortunately 3 months ago I had severe chest pain, went to my local A&E and had lots of tests. The blood results indicated potential pulmonary embolism so they put me straight onto blood thinners. 24 hours later they did a pulmonary angiogram to check for a clot In my lungs. They couldn't see anything. Saw my haem one week later and bloods were back to normal. After further investigation by cardiology the theory is that I most likely did have a clot but it was either too small to see or had broken up by the time the angiogram was done. Has anyone else had a similar experience?

We are now looking at treatment options. I'd be interested to hear your experiences of starting on hydroxy or interferon.

Many thanks, Lou X

[francesb]

Hi, I've been on Hydroxy for two years, I take it at be time and am fine on it, no problems at all. Best wishes, Frances.

[Loubielou in reply to francesb]

Hi Frances, thanks for your reply. Do you mind me asking whether you considered interferon? The haem suggested to me that it might be better to try it first? I think this was based on my age. Thank you.

[francesb in reply to Loubielou]

Hi, my Haematologist said we might look at Interferon if the Hydroxy fails but prefers Hydroxy at this stage. I'm CMML or MPN unclassified - a weird one they can't pin down a diagnosis exactly. I started with very high white count. I'm 68 and as I said, doing fine now on Hydroxy. Could well be an age thing I guess! Hope you get a good treatment soon, good luck, Frances.

[AndyT]

Hi Lou - I started on pegylated interferon (Pegasys) in October after 13 years on aspirin only. It has worked really well for me - platelets down from 1100 to 350 and no major side effects - I now just inject once every 4 weeks, which is very convenient too. My haematology clinic in Leicester have over 40 of us on Pegasys and certainly favour it for anyone under 60. They have recently published some positive study results on peg - happy to send them to you if you want to PM me with your email.

Best wishes

Andy

[Superwoman]

Hi Lou, I have been on Hydroxy for three years now, ET JAK 2posative I seem to be alright, just keep well hydrated keep fit and make sure I eat well, although I do enjoy a glass or two of wine at the weekends my only vice I must say, but it's my treat. My bloods so far have been really good and Haemotologist is really pleased with me.

There are times I become really exhausted but I just get on with it, this being really hard, but I will not give into anything, to much to live for think it is that attitude of there are people worse off than me.

I know it is hard to make that decision as to which drug to go on, I was never given that choice, just told this is what you have got to have for the rest of your life, oh and that along with many other tablets for one thing or another hey ho.

Anyway it's good that your bloods are back to normal. I had an angiogram done many years ago for a blood clot in a main artery, then angioplasty think this was the start of my problems, but so far so good.

So keep smiling and all will be well.

Jean X

[Loubielou in reply to Superwoman]

Hi Jean, thank you for your reply and to hear that you enjoy a good quality of life. Its so helpful to hear people's experiences of these medications. Take care xx

[zvinkovic]

Hi,

When I was first diagnosed I was put on Hydroxy because I had a blood clot in my left leg and platelets at 1100 and they needed them to fall down quickly. While on it I had liver pain, skin problems and very low immunity, so my GP suggested I switch to a doctor who prescribes interferon. I was 21 then and she said that it is better for young people to be on interferon. So I am on interferon for the last 15 years, tolerate it well, some days are harder than others but it might be ET and not interferon. I am hoping for pegylated interferon in the future, but for now it is not being prescribed for MPNs here in Croatia.

Best wishes.

[Loubielou in reply to zvinkovic]

Thank you for your reply Zvinkovic. Seems like a consistent message from the docs - to recommend interferon for younger patients... And you were very young! Lou x

[Susana7]

Hi Lou, I have been on Pegasys 90mcg for 8 months with great success: platelets are now 482 down from 1.5 million. I am Jak2 + and have PV. I was on aspirin only until then. Interferon is best for younger patients (I am 52) as it reduces the chance of progression to MF and is the only treatment that can achieve hematological remission. If I were you I would give it a try. I have only minor side effects and hope to reduce the dose soon. Good luck! X

[Loubielou in reply to Susana7]

Hi Susana7, sounds like its been a real positive experience for you. I feel more encouraged about interferon from hearing your's and others' stories. Thank you for replying to my post. Lou x

[heathermc]

Still waiting for my treatment. I'm 52 diagnosed 2 years ago with ET jak2 negative. On asprin at present my platelets are 901. Get tired . A few migraines but had them all my life. Apart from that I'm ok. I should find out what treatment I'm put on this week. I have mood swings just thinking about it. I do pilates and yoga to calm me down. Good luck.x

[Loubielou in reply to heathermc]

Hi Heathermc, thank you for replying. I find the extreme tiredness is hard to deal with and can be difficult to explain to friends and family. I hope that you get the treatment that feels right for you? Do you have a preference? Lou x

[LKVVZ in reply to heathermc]

I thought they only treated if the platelets were over a mil?