Treatment options

[heathermc]

I am due to start treatment in two weeks. I have ET with Calr positive. My plateletsare 1645.. which is high. Not had other issues. I take aspirin. I have a few hot flushes but as I am 55 put some of it down to my age.

Because of my age the consultant have to decide either HU or Angralide.. my own consultant favours Hu but I will find out on the 14th.

I've got mixed emotions at present ...knew it was coming but admit I'm scared a feeling not uncommon to many.. Fingers crossed for 14th.

[conno61]

Hi heather. I have the same calr+. I'm currently on hydroxycarbimide. I didn't really have a choice of treatment as in the UK it's basically a post code lottery as to what you can get. My choice would have been peg interferon but here in Merseyside you can't get that but down the road in Cheshire you can. Madness. It all comes down to money, hydroxy is cheap to buy whereas peg interferon is more expensive. Hope it all goes well with you whatever you opt for.

[heathermc in reply to conno61]

Thanks. I'm in the north east of England so probably in the same lottery. I'm see how it goes. When I begin treatment. I feel overwhelmed at present . It will sink in. Part of the unique condition we all suffer from.

[conno61 in reply to heathermc]

I think we all feel like that heather but sadly it's a necessity for us. You'll be fine once you've taken the first one. Just think of it as a little life saver 👍

[socrates_8]

Hey Heather...

Wow! Your platelets are so high...

I am also CALR+ Type 2. Usually, Type 2 has a higher platelet regime than Type1. I was originally diagnosed w/ ET in May 2016 (57). However, due to a Grade2 result from my first BMB (& my symptom burden), I was later reclassified to MF, and then started Ruxolitinib after having tried both HU & Interferon Alhpa, (Not Pegasys).

Hot flushes and cold sweats are also a part of my ongoing symptoms, as is varying degrees mental fugge, Bone pain, headaches, tinnitus, and I have already had two suspected TIAs (minor brain strokes). That is why is so imperative to keep our platelets down to a manageable level well below the 1M if possible.

My platelets, still range from mids 700s - 1M most of the time, and I am still here so far...

It's far better to have some way of controlling our various MPNs than to risk the converse, in my view...

Yes, being overwhelmed at first, is a part of the process. But after a while we adjust and simply try to get on with our lives, as best we may etc...

Best wishes Heather

Steve

(Sydney)

[lindyloulou]

Hi there, I go to Nottingham hospitals, initially at 50 I was on Anagrelide for 9 years which controlled my platelets but side affects for me became too much. Now on Pegasys, platelets well controlled and I m hoping as they are still dropping I can reduce dosage or even get a break from treatment,I am ET CALR positive. My consultant recently told me that at 50 he would have now recommended Pegasys from the offset, Hope all goes well, find a specialist in Myloproliferative neoplasms if your not happy with their recommendations, I declined hydro due to my young age at diagnosis. That said a lot of people are happy and fine taking it. Lynn

[mhos61 in reply to lindyloulou]

Hi Lindyloulou, can I just ask is there an MPN Specialist in Nottingham?

Mary

[lindyloulou in reply to mhos61]

You know what that is something I have never asked, I think this is due to the fact that my treatment and the team have been so good. My previous hospital in Leics had 2 specialists but I chose to go to Nottingham City Hospital, cannot fault their care and their knowledge, one of their Junior doctors ( not sure if she is still there) was involved in the findings of CALR.

[Jocko]

Hi Heather,

I am a 55 year old man who was diagnosed in May 2017 with ET Calr+. I was already on aspirin for something else and I believe aspirin helped hide the symptoms of ET. I know this because during the diagnosis they asked me to stop taking the aspirin and I had all sorts of side effects e.g. pins and needles, headaches, tiredness, pain in my fingertips/ toes etc. As soon as I went back on aspirin they disappeared. I had read up on ET treatment and had decided by that I wanted Peg Interferon over HU. Fortunately my consultant suggested this and consequently I have been on 45mgs Peg since Sept 2017. My counts have come down from 1250 to a steady 160. Happy days. Anyway my advice is read up, if you have a choice go with your gut and see how it goes. No one knows until you start taking any meds what will happen. Try and stay focused, informed and positive. Don't let any mild side effects get you down. Try not to feel like a victim, as they say it is what it is. Try and live your life as you did before you were diagnosed. Good luck I hope all goes well. Jocko

[Wyebird in reply to Jocko]

I wonder why I haven’t been offered pegeus. I’m currently on 17 hydroxi +10 anagrelide I was on 17 plus 14 anagrelide but had to reduce the latter to 7 anagrelide because of side affects. As a result my platelets rose. I was given the option- 10 anagrelide or extra hydroxi. I’ll know in 4 weeks if the new dose works.

[Jocko in reply to Wyebird]

I believe it is area by sres. - as I understand but it is not cheap - that may be a consideration. Also my understanding is the experts think Peg works better for younger people. Maybe your consultant thinks it wouldn't be suitable. It's best to talk to your consultant to find out Thier thinking. Let them know how you feel - you should have input into your treatment. Good luck. Jocko.

[Wyebird in reply to Jocko]

Thank you, I’ll wait to see if my present dose works. A blood test in 4 weeks and 8 weeks should give the answers. I have been given so much support from the clinic. It’s a specialist one. The staff are amazing. I’m going to fatigue clinic ( no other symptoms) and been offered counselling. I know there are people far worse than me. I just don’t want to look as if I’m dictating. I just worry that after 3 years surely I should be stable.

[mhos61 in reply to Wyebird]

Well good luck. The main thing is you have confidence in your clinic, which sounds excellent in its additional support.

[mhos61 in reply to Wyebird]

Wyebird, In regards to being offered Pegasys, I’m beginning to think the same! But at least I’m on a very low dose of hydrea, if I were you I’d certainly be asking. As someone suggested, why are we not all on it?

[Wyebird]

We all have mixed emotions when it comes to pumping meds into our bodies. I’m calr et. My highest platelets were 802. I was sofa ridden. I felt much better when they started to drop due to hydroxi. I take anagrelide too. We are all different. Don’t worry about the meds. You’ll be fine

[mhos61]

Hi Heathermc,

I would ask why Pegasys isn’t being offered. Having said that, I take hydrea (wasn’t offered Pegasys) and have had no problem with it. I’m on a very low dose, 500mg Monday to Friday. It controls my platelets well, been on the same dose for nearly three years, and I have no side effects.

Mary x

[Camelian]

I can sympathise with you im 57 and will go on medication when I'm 60 or sooner I guess if platelets go up. I have been given a choice of meds told I'll go on hydroxycabamide - I will do some research before starting meds and challenge if I think there's a better option. I I'm still trying to gather information around the medication but there is a lot of people on thirstier that can give you advice. I hope all goes well please feed back I will very interested to read your posts.

[Camelian in reply to Camelian]

Should have wrote haven't been given a choice sorry it's this predicted text.