Advice

[Melanie66]

Hello ,

I was diagnosed earlier this year .... ET...I am being asked to take Hydra carbo but I have declined .... now am considering interferon ...

Still waiting for a buddy ...I’m so concerned about these treatments .. Grateful got any

advice ...

Melanie .

[socrates_8]

Hey Melanie...

May I ask your age please? It's just that sometimes age is or can be a factor. However, and that said, if your medical team is suggesting that you need HU, or Interferon for that matter, then they must be growing concerned about your higher than normal platelets...

Do you know what level they are currently Melanie?

Whether you are more suited to HU or Interferon, unfortunately, might only be discovered by trial and error, as each of us are actually quite different from each other in a great many ways...

For example, Maz (the website co-ordinator), says HU is absolutely fine and has been in her case for many years, and if you email her I am sure that she will also help you in regards to finding where some other literature about all MPNs, med's and symptoms can be found on the website etc...

On the other hand, me? I could not tolerate HU at all... However, I was later found to have MF, and eventually moved onto other med's.

Melanie there are a great many good people here on this site with ET also, that will eventually respond to your post with their experiences with medications, and what worked best for them etc. However, please do keep this small factor in mind Melanie, we are all just patient survivors here like yourself, and you are ultimately best advised by your medical team, in my view...

Best wishes

Steve

(Sydney)

[Ebot]

Hi. Can I ask why you declined Hydroxy? I expended a lot of energy worrying and angsting about treatment options. Got myself into a right state at one point. I avoided drug interventions for as long as I could until my platelets got so high (1700) that commencing treatment became a no brainer. With hindsight I realise what an utter waste of energy all that angsting was. My numbers have tumbled. I feel the best I have in five years. And I’ve had absolutely no side effects. The reality is, that the overwhelming majority of patients tolerate Hydroxy exceedingly well which is why it is usually the drug of choice.

I do wish all that scary drug information guff could be conveyed in some kind of graphic that shows how very very unlikely it is that individual patients will suffer adverse effects. And a greater emphasis put on the overwhelming likelihood of positive benefits. Hope this is helpful.

[GolferCL]

Hi

I was diagnosed in June this year, ET Jak2+, started on (non Peg) interferon straight away as i’m just 43 yrs old. A few fluey feelings for a few weeks, but took paracetamol alongside and felt fine. After a few weeks, no side effects at all and the platelet count is in normal range now.

Give it a try!

[Susana7]

Hi Melanie, I was diagnosed in 2014 and declined treatment for a year, fearful of side effects and hoping my platelets would stabilise naturally. They didn’t, platelets kept going up, HCT also became elevated, diagnosis changed from ET to PV, and in 2015 I started Pegasys interferon. In my case, it was pointless to wait, the disease just continued to progress. With Pegasys, all counts normalised and I feel much better, it has been a wonderful treatment for me. I only inject every 3 weeks now. So, I would not put off treatment if I were you and would give interferon a go if your haemo is suggesting it 😊. Good luck! Susana x

[Jocko]

Hi Melanie,

Once I was diagnosed with ET I did a bit of reading to try and understand the possible treatments. I didn't fancy taking HU and had a preference for Peg Interferon. When I went to talk to my consultant re treatment he suggested I might try Peg Interferon. Which was what I wanted to do so all was good and we were on the same page. If he hadn't suggested it I would have. I believe it's not cheap for the NHS therefore it may not be offered in all cases. If you feel strongly that you'd rather take Peg Interferon over HU then have that discussion. Peg Interferon doesn't work for everyone so it's like all meds you won't know until you give it a go. The most important thing is your attitude to the treatment. By that I mean if you need to feel positive about your treatment which will help you deal with any minor side effects Do some reading and try and understand your options. This will help massively when you see your consultant. I am 55 years old and I've been taking Peg Interferon for just over a year. It's been good so far as my counts are down and side effects for me are minimal. The weekly injections are not as bad as they sound and you soon get used to it. Good luck with your decision.

Jocko

[Stephen399b]

Honestly, you have had the right advice above. This won't go away by hoping. I have been on HU now for nearly 3 years (Age 68, ET, Jak2+) but still working full time in very busy job. As Platelet count has reduced to normal levels, my doseage has reduced, from 3/day to 10 per week.

My Haemo has talked about Interferon and if I don't keep reacting OK to HU I may switch.

The only real side effect I get is tiredness, but that might also be OF syndrome (Old Fart). As Susana says, stressing about possible side effects will probably do more damage than just accepting that you have a rare condition, but it is treatable, so live every day.

Best wishes

Stephen

[Coradelphine]

I was on hydrox for years, I’ve been aware that I’ve got et since 2003. At times I was taking a very high dose I didn’t have any side effects. Anagralide was added to the mix as there hadn’t been long term use research done on hydrox. I was then swapped onto anagrelide alone and am still on it (15years) later. It would never have occurred to me to refuse any of the medication. You are aware that ET is chronic , can’t be cured it can only be managed but by refusing medication you are risking you life.

I have now developed MF and still on anagredide

Whichever you decide please start taking it ASAP and don’t come off it unless your haematologist tells you to.

If you’re not happy for some reason see another haematologist- don’t mess about with your life.

Best wishes x