Experiences with Pegasys for ET

Well @JennyMary I think @Nichola75 and @Rammie18 have put it so well and it is your body and your decision at the end of the day, once you weighed it all up and made a decision I find it so relieving and empowering.
I am useless at thinking on my feet and I have found it is OK to say that you would like to consider what has been said and the best option for you.
Please let us know how you get on.

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Dear Nicola and Erica,

Going to write to Rammie separately but thank you for your support. I’ll try to answer all queries.

1.Nicola, what did you mean by ‘support line’? Is there somewhere I can find out about risks of thrombosis?

  1. I don’t have a supportive team at the hospital, I’m afraid. One doctor and the oncology nurse are kind but really don’t seem to have a lot of knowledge. The head of the team seems to have no empathy at all. He didn’t warn me of the possible side effects of Pegasys and was very difficult to contact when I needed help. He once said ‘Well, if you can’t cope with Pegasys and the Hydroxycarbamide isn’t working any more, I really haven’t got anything to offer’ Not comforting! Blood Cancer Forum has been my support team!

  2. Next appointment not til 4 March but I suppose they will contact me earlier if the platelets go through the roof

  3. I’m not afraid, especially as,like Erica says, I have taken charge. Expecting a lot of pressure from doctors and family which will be difficult but family have always known that quality of life is far more important to me than longevity!

Best Wishes

JennyMary

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I can imagine it’s hard for family to understand. You don’t know what it’s like unless you have experiences it do you.
I meant the Blood cancer UK support line. Didn’t know if they might be able to help.
It frustrates me that peoples experiences differ with their teams and a shame yours are not great.
@Rammie18 will be able to help lots.
Take care X

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Dear Rammie,

I wanted to answer you separately to say how sorry I am to hear of your problems. You’re obviously much younger than me and its so cruel and unfair. Have you actually started hydrea? Some people, like me, seem to have no side effects while others manage by choosing the time of day they take them or taking them one by one. I do hope you are one of those. The ludicrous thing with the Pegasys was that I was started on half a dose only and although I persevered, the reaction was so bad that I had to be taken off it. Goodness knows what full doses would have done to me!

Try and keep positive, so hard for you, sounds as if, like me, your doctors are saying scary things without considering the effect on you.

The Forum is such a kind place to come with your worries, sharing has helped me and I hope it does the same for you.

Best wishes and good luck,

JennyMary

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Hi @JennyMary just wondering how things are going and how you are feeling.

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Hello Erica, thanks for your email. As far as the ET is concerned I’m going on with the blood tests and hoping that the hydroxycarbamide is still effective enough to keep them happy and they won’t try to offer me anything else. My eyesight has been permanently affected by the Pegasys and yesterday I went to have glasses fitted for the first time - the sudden deterioration was a shock!

My husband has just had a mini stroke and my son has a serious chronic condition so I’m very glad I feel well enough at the moment to cope with that and absolutely determined not to take anything else as I explained in a previous email.

Best wishes

Jenny

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@JennyMary so sorry to hear you’re going through a tough time and sincerely hope your husband’s recovery’s goes well and your son’s situation improves. While caring for others it’s important not to neglect yourself but definitely not add extra stress or anxiety onto yourself. Have you spoken to your medical team about everything you’re going through. Maybe if they were aware they’d be more understanding and less pushy and put a more suitable health care plan in place for you so you’re more able to cope with everything.

Be sure to keep us posted how you’re getting on… The good days and bad… It’s so important not to build things up so remember this forum as a platform to let it all out and the amazing people here to listen and support you.

Take care

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Good morning @JennyMary. Wow, that’s a lot going on with both yourself and your family and as @Erica and @Rammie18 said, it’s really important to look after yourself as well.
I bet it was a shock about your sight. Is it something that’s will stabilise now that they are aware of it?
Wishing your husband well. Please keep us updated :blush:

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Good Morning Erica, hope you are well.
just an update on me and my ongoing treatment, along with a bit of background.
I’m a mid 50’s make who, very foolishly, had a heart attack back in September 2017. That quite possibly saved my life as it was following that episode that my ET was discovered and diagnosed over the next 5 months.
I underwent a Bone Marrow Biopsy in March of 2018: and yes that was quite painful!
I went through a lot of blood tests, averaging 3 per week for several weeks, which caused some disruption with work (I’m a truck driver) but my company has been good to me, which takes one big stress/pressure down several notches.
My initial platelet count was 1200+ but with time and Pegasys injections, ranging from weekly doses of 45, then 60mcg before changing to 90mcg every two weeks. After several months this became 90mcg every 4 weeks by which time my platelet count was down to “only” 400.
After a few months of this I settled on to a new regime of 90mcg every 3 weeks and that stayed the same for a couple of years up until this January when I have returned to 90mcg every 2 weeks following my platelet count rising to the wrong side of 600.
Other than feeling tired all of the time, and the cold like sniffles in the hours after injecting, the other issue that I have is liver problems, from both the ET and the Pegasys. My LFT hasnt been below 100 throughout the last few years of regular blood tests, and has been as high as over 150.
Other than this I’m okay, smiling and taking as little notice of my condition as I can.
Apologies for the long and detailed post.

Regards to all Forum Support Volunteers and to my fellow, and fellowette, members.

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Gosh @Jimbo165 that sounds quite a juggling act with being a truck driver which perhaps adds to the anxiety and stress.
Yes, I was also diagnosed as I was having ongoing treatment for something else, meant to be.
I was called a Cheshire Cat at school for smiling too much, perhaps it is my comfy mask sometimes, but as long as you are smiling and have a sense of humour you are a winner with me.
Please keep posting whatever length post you want to, we always want to read them and take lots of special care of yourself.

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Gosh @JennyMary you really do have a lot going on in your family.
That deterioration in your eyesight really seems to have shocked you.
I am sorry to hear about your husband and son but I hope you can look after yourself as well as I can tell you look after them. It is so important and please keep posting you know that we are here for you.

Dear @JennyMary, I am so sorry to hear that your husband has had a stroke. It sounds like you have a lot to deal with at the moment. I am pleased that you are well enough to cope with this at the moment but do please as for help if you should need it. We are also here to talk if you need us. Kind regards Gemma

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I think that most doctors/consultants have their own experiences, and will vary on the “standard” recommendation a bit - or even a lot, whilst others adhere to the “rules” as if they are written in stone.
I have ET, and my platelet count was over 900, for many years, with just a childs asprin as “treatment”.
As soon as I hit 60, I was told I had to get my platelet count down to around 350, and had to start on hydroxy carbamide immediately
Not quite sure why there was such an on/off switch, and how ET knew my birthday, the only answer was that people tend to be more susceptible to strokes after 60, so 60 it was.
I held out until my platelet count went over 1,000 when I was 62, as I couldn’t quite accept there could be such a dramatic change, just between one day, and the next day, just because it was my birthday, and when my medical condition/health, had not changed at all.
now, my platelet count has been over 450 for 9 months, and they are increasing my dose of hydroxycarbamide, I will be on 2 tablets every day.

and I still don’t understand, why 900+ is fine until you are 60, but it has to be around 350 afterwards - it should be based on your own medical situation, but it really does seem to be just based on age - which I find very odd.

So I listen to the medics, but also trust my own instincts,
I think, personally, I would do what you are doing
though this is my take on things, and I am not a medic

I hope everything improves for you in future

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Wow - that does sound like a lot of reorganisation on your life for a while. I hate it when my daily routine gets disrupted - a little OCD :woman_facepalming: I’m glad things are going ok for you at the moment. Trusting your instincts is so important!
Keep posting and take care :blush:

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Hallo everyone, so many supportive messages that I’m just going to try and answer everyone in one email. I think I have given the impression that I’m sorry for myself but actually the reverse is true. I have no idea what my platelet count is at the moment because although I do my blood tests once a fortnight, I won’t hear how things are going until 4th March, my next appointment, or if they go sky high. Last I heard, they were 625 and I’m on the maximum dose they can allow me. The point is that whatever they are, I feel so well, so back to my old self now the side effects of Pegasys have gone that I can and do tackle anything and as far as possible ignore the ET as Jimbo says he does. When I hear the stories of people like Jimbo and Rami, all I think is how lucky I am and I don’t want to lose that wonderful feeling by taking something which I know will make me feel rotten again.

My husband’s stroke was a tiny one, three hours of confusion, and he is now absolutely fine, on medication for slightly raised blood pressure, but we have a very healthy lifestyle and diet and he has a very positive attitude so I truly am not worried about him. I suspect it was triggered by his worry about me for the last few months!

My son’s illness is a different matter, especially as he refuses to acknowledge that he’s ill and won’t do anything look after himself or talk about it at all. We’ve lived with it for more than 20 years and the effect on me has been far greater than ET could ever be.

So, my sight has deteriorated but nothing that glasses can’t fix. Millions of people have glasses and think nothing of it. I only mentioned it really as a side effect of Pegasys which seems to be permanent.

What I’m trying to say is that I’m enjoying my life one day at a time and all my sympathy is for others so much worse off than me, and not for myself!

Best Wishes and thanks to everyone,

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You didn’t give that impression at all. I’m glad you are doing so well :blush:

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Hi @JennyMary you never gave that impression and I have found that this forum is a safe place to be able to say how it is at any time.
We and the Blood Cancer UK are always there for you.
What a good idea to do one reply, I must remember that, thank you.
You are a wife and mother and that brings up so many emotions and thoughts.
Look after yourself as well as you look after others and be kind to yourself and please keep posting.

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Hi JennyMary,
You have nothing to reproach yourself for in any way, shape or form. You have so much going on in your life that it can be easy to overlook yourself in all of the activity.
Fortunately for me I have some very caring daughters, and one bossy one, who all look out for me, and were very “strict” with me during the shielding times for us CEV people.
I will say that we are allowed to sorry for ourselves on occasion, although if you are anything like me you then feel guilty for having felt that way!!
Keep smiling and carry on doing all that you do.

Best wishes and stay safe.

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Good evening Nichola, just an update on my latest Pegasys experience. I had my injection 10 days ago, on the Friday evening as per usual, just a week earlier than my body had been used to for a long time. The following morning I woke up (a good start!) and headed off to work (not such a good start!!) feeling quite sickly. Over the next few hours I had 3 or 4 episodes of being quite sick, and feeling generally quite rough. Finished the day at work, headed home, had something to eat and then went to bed, still feeling rubbish. The next few days followed a similar pattern; waking up and feeling sick, then being sick a few times, easing off daily through to Wednesday when i woke up NOT feeling or being sick.
Hopefully this was just some sort of bug, goodness knows there are enough of them doing the rounds, and merely coincidental to the injection, although I shall find out this coming weekend as I’m due to inject again this Friday.

Watch this space.
Take care everyone, stay safe and keep on smiling.

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Oh @Jimbo165 that was a rubbishy few days, please let us know how you are after Friday, look after yourself