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Delaying treatment

Good morning everyone. My doctor wanted me to start on Pegasys because he considered me high risk. My platelets are in the 800s and I have an unknown MPL mutation. I hear this isn’t as common. I’m considered high risk because I had a stroke in January, but this was a provoked event At the time I didn’t know I had ET. My neurologist said that the ET May have made me more prone to getting the clot after the tear in my vertebral artery that resulted from the trauma I had (snowboarding fall) Had I not had the stroke, my MPN doctor would simply put me on aspirin (which I’ve been taking since the stroke). My neurologist and MPN doctor did consult with one another so they are aware.

I’ve been torn about taking medication. Initially I thought I would be prescribed with HU but because of my age (39) he said I was young and would start me off with Pegasys. I was very thankful.

....but After much torment, I’ve decided to hold off on treatment. I just felt like I wouldn’t be out on medication if it weren’t for this provoked stroke.

I know that many you may think it’s a stupid decision but was curious to know what some of you would have done if you were in my situation.

Thanks in advance.

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Hi annem22, I have family experience of a stroke at such a young age. My family member has never worked again. I can’t tell you what to do. All I can advice is that there are a few papers and videos on Pegasys and the new interferon (ropeginterferon). I’m 51 and was considered low risk. I decided to fight for Pegasys (for my own reasons). After nearly 2 years, and no side effects from interferon, my bloods are all within normal range. For me Pegasys was an easy drug to take. I’ve heard many doctors speak about the side effects. MPN patients usually remain at a very low does with low side effect (if any). The high dosage is for hepatitis patients.

I hope this is helpful. It’s not aimed to preach at you.

Good luck with whatever you decided to do.

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Thank you for responding ElanorPV. Did your family member have an MPN or any other underlying health issues? I’m sorry to hear that s/he is not working anymore because of it. That thought frightens me since I am the bread winner of the family and I guess you and many might wonder why I won’t just take the medication. I’m struggling with it daily, constantly flipping back and forth between yes I will and no I won’t.

I do worry about the side effects and how it will effect my ability at work since I am already dealing with the side effects of the stroke. My vision and balance is still off and I get disoriented still at times.

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My family member doesn’t have an MPN. I only mentioned because blood clots (strokes) can be very debilitating.

Before I started pegasys I was unable to work because of fatigue. Within 4 weeks I was back to work full time. This is my experience.

Good luck with what you decide.

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Would you like me to post links to the latest research. This helps some people but others can’t handle the information?

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Thank you Eleanor! As for the latest research I can only hope my MPN doctor(s) will be up to date and be able to inform me in layman’s terms. I am very fortunate that I am able to function after having the stroke but definitely not in the same capacity as I used to physically. I hope that only improves with time.

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I’m a bit confused. The doctors are recommending Pegasys. They have the latest research but you are still unsure. Why?

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I’m unsure because my MPN is based off of a gray area. The MPL mutation that I have isn’t as clear as Jak2 or CALR. I’m unsure because if it weren’t for the provoked stroke I wouldn’t be considered high risk. I just don’t want to start on medication that may cause other problems but yes I know that I also at risk of another stroke. Weighing my risks as will be seeing another MPN specialist to see if they also agree on diagnosis.

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Hi

You asked what other people might do in your position. I’d give Pegasys a try for 3 months or so and see if it brought my platelets down, and what sort of side effects , if any, it had.

Then you can make an informed choice.

You are young enough that better drugs are very likely to come along to treat ET ( maybe even cure it) in your lifetime.

All the best.

Rachel

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Hi Rachel.

Am I crazy for being worrying that even trying Pegasys for 3 months might cause other problems that I currently do not have?

I’m not so worried about side effects as long as they don’t prevent me from being able to do my job but just worried about starting earlier than I need to.

But I know that I have to consider the risks I’m taking like having another stroke. My doctor said if it were him, he’d start but he’s comfortable with wait and seeing how my platelets do in the next few weeks.

My primary care doctor is also board certified hematologists so I’m thankful that he caught this. He was all for me just being on aspirin and going about the watch and wait. When I saw an MPN specialist and told him that they wanted to put me on Pegasys, he was like why? That medication is horrible unless you like walking around with flu-like symptoms. I am actually seeking one other MPN specialist to see what their take is on it. Maybe then I will be better informed.

Thank you again.

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Sorry to hear you’ve had such a difficult time with the stroke and now the decision to start medication or not.

Like Rachel said, I would give Pegasys a go and see how you feel 😊

I just started on Pegasys. I was really concerned it would have side effects that would stop me from doing day to day things, but I was pleasantly surprised!

I didn’t like the thought of living with high platelets, it made me anxious so I’d prefer to go on treatment and have that piece of mind that my levels are in the normal range.

Good luck and take care

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Hi. I’m glad you’re tolerating the medication well. If and when I decide to on it, I hope I am just as fortunate. My question for you is, by going on medication, did they tell you by what % is reduces your chance of a thrombotic event? I feel like I wasn’t given a clear answer and I know the doctor can’t say for sure, but maybe a percentage?

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I had a stroke aged 50 not ET related. Diagnosed at 60. I’m high risk and definitely do not want another stroke.

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I hope you’re recovering or have recovered well from your stroke. Did you have any other medical issues that could have caused your stroke? I definitely don’t want one either bc next time, I may not be so lucky. And I know, you might be wondering why I’m not taking the medication especially is I don’t want the stroke to happen again....well I am just not fully convinced that I would have had one if I didn’t have the other trauma and I’d hate to just go on such strong medication just because... if being aspirin is enough for the time being.

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I’m one of the lucky ones I have recovered and I went back to work. I don’t think it’s 100% though as when I’m tired I’m forgetful.

No reason found for having one. A sample of my blood that I gave for research 2 months prior to the stroke was recovered. No sign of my mutated Calr gene. Ten years later I find I have that.

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Hi. I almost died from massive blood clots in both lungs. That’s when they diagnosed my ET. I’d had blood clots in my lungs 1 or 2 years before & a TIA 7 years before, but no one realized I had ET until I almost died. That’s when they tested me for it. I didn’t want to get on meds (I’m on Hydroxyurea) but decided it was much better than having a stroke, heart attack, etc. from blood clots. For me it was the right decision. There are many people on this forum who were diagnosed after serious strokes & heart attacks. But only you can decide what risk level you’re comfortable living with. As others have suggested, you can give it a try & see how it goes. It’s a very difficult decision to make and I wish you luck. The stress caused from this illness & decisions will get much better. We’re all here rooting for you. Katie.

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Hi Katie, I am so sorry you went through such traumatic events. I’m so glad you survived it all. Do you know how or what causes the massive clots? Was it because of ET?

I am struggling most with the risk I’m taking bc I have young kids (9&4). I want to be as normal as I can be for my family. I know that there’s a good chance that I might handle the drug very well, but I’m already struggling with the after effects of the stroke, to add on more side effects, I’m not sure how I will be. I hate for my kids to see how much I’m struggling even now. I just grin and bear and try to power through it. I’m told all the time that I look so good, and sometimes I look at my work pictures and think,

“Wow, i really look normal. Like nothing is wrong with me” but internally, I’m dizzy, with neck aches and vision disturbances. Struggling with my balance and facial numbness with half of my body numb and tight and the other half, lacking the ability to sense temperature and sharpness.

Anyhow, I’m seeing another MPN specialist to see if she also agrees with medication. What if they find something else wrong or her diagnosis is different. This whole ordeal has made me into a paranoid person who thinks I might have some sort of cancer (other than an MPN) that I could be dying from, but no one had figured it out yet.

Thank you for your opinion. I really appreciate it. I hope you are doing well and continue on that path always.

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Hi. I’m so sorry to learn about all your problems. Are you getting physical therapy of any kind to help you regain functions you’ve lost? I have had almost no effects from Hydroxyurea except occasional mouth sores which are easy to treat ( & avoid). And yes, my blood clots were because of my high platelets but they also have me on blood thinners too. Good luck & feel free to ask us any & all questions. Or. If you’re feeling down and need encouragement. We’re a caring group. Katie

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Hi annem22. I'm 37 and we're trying to have a family so I started taking pegasus in May. I was worried about the side effects but I've been fine (except for a little bruising at injection site which is neither here nor there). I think if it weren't for our fertility struggles, I would have been adverse to taking more drugs but actually, I've got on ok with it and my platelets are now normal. It's a tricky decision....

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Hi hansyhand. Thank you for your input. I hope Pegasys continues to be good to you. I am wishing you the best with starting a family if it hasn’t happened already.

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Hi,

You have very good replies above to help you make a decision. And whichever way you decide it will cause you to wonder if you should have done the other. Do you think the choice is 50 50? I often work out imaginary percentages and it helps me towards a decision.

What are your concerns ff you took the Pegasys. Column A. Column B if you didn't?

I had a suspected TIA 2 years ago. I was and am sure it was the result of extreme yoga movement plus tight neck muscles that cut off supply to brain. But the indecision and aftermath afterwards would make for a long short story! Anyway the key point here is that I had to see a geriatrician who was maths and statistics savvy. The question was whether to put me on heart/thinners/other med. He did column a and b. He knew his research data on probabilities. He decided against. I agreed. I learnt such a lot from that visit. I have been fine since, touch wood.

So good luck with your difficult decision.

Mairead

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Hi MPort. So you are not on any medication for high platelets?

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Hi,

I have PV and am on medication, Pegasys interferon. There was no choice for me on this.

I have read on these sites of ET patients who both do and don't take medication with platelets around 1000. But my earlier email was about reaching an informed decision. It takes a very experienced haematologist (experienced in MPNS, not all are) to decide if someone of your age and fitness and history needs to start medication. Just like the geriatriciatic consultant did with me for heart med.

Best of luck.

Mairead

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I just thought of this. Not sure if link will work so

Ted talk 'show me the data' Tatithia Williams.

It is both very funny and highly informative.

It sheds light on your dilemma.

Enjoy

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This is great! Enjoyed it very much. Definitely a reason why I didn’t just jump into taking medication. I’m not entirely sold as to why I need to go on medication and having had a stroke that didn’t just come out of nowhere, doesn’t add up for me...yet.

Will have to pick the brain of the next specialist I’m seeing to see if they feel differently.

Thank you sharing that

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Do you think it would help to get a second opinion from a(nother) MPN specialist? It might give you a different perspective - or confirm the current view.

And the question in my mind is, that although you say the stroke was ‘provoked’ there still appears to be a query about the extent to which the underlying ET played a role in it.

I resisted drug treatment for as long as I could - I was regarded as low risk as I hadn’t had any clotting incidents etc. But when my platelets climbed to 1700 commencing HU became a no brainer. I felt I was a stroke waiting to happen. And that, with all its potential ramifications, made resisting drug treatment (in my view) simply foolhardy.

With hindsight the angst I expended over ‘to drug or not to drug’ was an utter waste of energy. My counts have tumbled to within / near normal range and I feel the best I’ve felt in five years.

I wish you all the best in your deliberations.

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Hello Ebot,

I am actually going to see another MPN specialist. I want to see if they come with the same view/diagnosis.

I don't doubt that my ET played a role in my stroke, but first came the vertebral artery dissection (VAD) and then the clot. But my neurologist also mentioned that, at the time of my VAD, I also wasn't on aspirin, so maybe that would have changed things.

For now, I will wait to see what the other doctor says and see what her view of my situation is so that I can make a decision that I feel good about.

I'm glad your counts are within/near normal range and that you're feeling great. I don't know if going on medication will help with the side effects from the stroke, but if and when that time comes, it would be oh so wonderful if it did.

Thank you!

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Sorry that you are going through such a touch time bouncing this decision about. I was whee you are a month ago and finally made the decision to trial medication for 3 months for the sake of my family. I was diagnosed with ET earlier this year and am 49 years. I had a pulmonary embolism 4 years ago and a mild LVSD but was not diagnosed even though my platelets were 700. I am fit and healthy with perfect BMI and BP. I have recently been very fatigued and struggling with foggy eyes and ringing ears. My platelets went up to 1276 a month ago, so I was considered high risk. I have been taking aspirin and totally adamant I would not go on hydroxycarbomide as I was terrified of having to miss work, my family persuaded me that my health comes 1st, so I promised a 3 month trial. Taking that 1st tablet was massive let me tell you!! So I had a blood test this week and my platelets are down to 900, so far so good just a few headaches. Bottom line is that you need to make the correct decision for yourself but in my case, after so much turmoil, it hasn’t been as bad as I had thought. Now only time will tell about the side effects. All the very best of luck. Penny

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Hi Penny,

I'm glad the medication is working for you and I hope you haven't had to miss too much work. That is definitely a fear of mine. Do you know why the put you on hydroxycarbomide at your age of 49? Why not interferon/Pegasys?

Best of luck during this trial period and I hope the counts keep dropping until it reaches the normal level.

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Hi Annem,

I started taking Peg a year ago. I didn't really want to take HU and was lucky enough to be offered Peg which would have been my preferred option. I take 45 mgs once a week and my platlet count has been great. There are mild side effects which for me have been pretty easy to live with. For me it's been a great choice because atm it is doing what is needed and is hopefully keeping me from having something like a stroke. You have to weigh up the options and do what you feel is right. Positivity is the key. Good luck.

Jocko

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Hi Jocko,

have you always been on 45mgs/week? Did you ever have to increase? Did your doctor say that if all remains well, that they could/would do 45 mgs every other week or so?

Other than the mild side effects, have you better being on medication?

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Hi Annem,

I think it depends on your situation and what you want. I started on 45mgs and have continued on 45mgs. My counts have come down from 1250 to 167. I now have a phone appointment every 4 months and a blood test a week prior to the appointment. I have read that you can potentially take less meds if your consultant agrees and in some cases wean off completely. Bottom line is you want your counts within range and to be honest if 45mgs works then I will stick with it unless the consultant suggests taking less often. I think what you do is between you and your consultant and I guess different consultants have different ideas. However not everyone gets offered Peg so at least you have been given the choice. I preferred to take Peg and not HU so all is good.

All the best

Jocko

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Hi Annem22, I know how you feel. When I was first offered Pegasys in 2014, after an ET diagnosis with platelets in the 800s, I declined and asked my haemo if I could stay on watch and wait (and only on aspirin), which they agreed to. I was 50 which is young for the disease, but on high blood pressure meds and that put me on the high risk category, hence the advice to start Peg. But I felt fine, blood pressure was controlled and had no side effects. In the year that followed, platelets continued to rise up to 1.5 million, and the hematocrit also rose so that my diagnosis changed to PV. In 2015 I finally started Pegasys at 90mcg/week, and it took close to a year to normalise my counts - I experienced very mild side effects only but that included some temporary hair thinning/loss which I found a bit distressing. Today, I inject only 45mcg every 3 weeks and have no side effects. Pegasys has been a wonderful treatment for me. If I could go back in time, I would have started Peg straight away in 2014, which would have meant less disease progression, lower Peg starting dose (or less time on that dose), less side effects (although as I said they were very mild and temporary anyway) and quicker return to normal counts. However, I read about people on other forums who are on watch and wait and their disease is stable with counts plateauing and not rising like mine did. It is a difficult call. Maybe you could decide on the basis of that: if your platelets remain stable in the 800s you watch and wait, if they continue to rise you start treatment! Good luck and let us know what you decide. Susana x

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Hi Susana - what you mentioned is one of the main things I worry about. What if I just started this treatment earlier, rather than delayed it? what if my decision to delay it in end results in the progression of the disease. At the moment, my bmb came back with nothing in terms of fibrosis. My MPL mutation isn't as common and not as clear as JAK2 or CALR, but it's been found in people with ET. My doctor says it a very gray area, but because I had my stroke, that puts me in high risk category. BUT my stroke was provoked and yes, having high platelets could have made me more prone to have a clot, but I also wasn't on aspirin at the time. Maybe it could have been avoided, if I were.

I am glad that Pegasys has been working well for you. I am glad to hear such good things about it, or not such horrible things, but hair thinning/loss would be distressing as you said. DEFINITELY NOT looking to have to deal with that.

I hope your counts continue to be in normal range and that it's just smooth sailing from here on. Thank you for your input and sharing your experience. I will be seeing another MPN specialist next week so I will see what her take is on my specific situation as well. Will also be getting CBC's every two weeks to monitor how my counts are.

Anne

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Good luck Anne. It is really reassuring that you have no fibrosis. And by monitoring your counts closely you will be able to tell if the platelets are stable or on the way up. As for the hair loss, it happened from months 4-9 of Pegasys 90mcg, it then naturally subsided (I used a load of anti-hair loss products at the time!) and stopped completely once I moved to 45mcg. So it was temporary and dose related. It did not create any bald patches, nothing as severe, it was more thinning of the hair with hair falling every day, at a higher rate than normal, and becoming frizzier. I fortunately have a lot of hair so people just thought I had gone for a frizzier style! My advice is that, if and when you start Peg, start at 45mcg! All the best, Susana x

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Hi, I know how you are feeling! My platelets were high and GP sent me to Haematologist who diagnosed ET which was later confirmed by bone marrow biopsy. At the same time I found a breast lump which was cancer so the ET treatment was delayed till after my Lumpectomy and recovery although I was immediately put on Aspirin. 2 weeks ago Haematologist put me on Hydroxycarbamide which I fought against taking because of side effects and had also been given another drug for 5 years to prevent secondaries with cancer. I was up and down wondering whether to refuse the Hydroxy but when I saw Haem Dr on Friday he explained very well that as I was a cancer risk ,having had skin cancer removed some time ago I should definitely carry on with Hydroxy and he has doubled the dose. I am presuming till my platelets are down he will increase dose. Fortnightly hospital visits for now to see him. At the moment the platelets are around 800 . We can only make our own decisions which is so very hard! I can't advise you but I think if I had had a stroke I would take the treatment. Pegasys seems to be a really good drug from what people on here say. I had a bad tummy for two or three days with mine but ok since. Don't know what now I've just taken the double dose. Wishing you all the best in your decision .

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Azaelea - you have been through so much! I'm so sorry that you had to deal with 2 cancers being diagnosed back to back. I really hope that your lumpectomy got everything and that you're recovering well. I may be confused with all the information I read since being diagnosed with ET, but I thought take HU, there could be a chance of developing other cancers - skin cancer? I could be misinformed.

I hope your counts keep decreasing until normal range. Wishing you all the best health going forward!

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Hi

I would have grabbed it with both hands. I am lucky to be on Pegasys now after a terrible experience on Hydroxy. If you are high risk and you are being offered this straight off, there must be a good reason.

My experience on it has been excellent. Yes, there can be side effects but these vary for us all. I usually get the extremes but many do not.

All I had from Hydroxy was severe disability through horrendous side effects.

My platelets normalised within 3 weeks on Pegasys. They are continuing to level out and my body, after 12 weeks, is used to the drug. There is also a bit of 'knowing how to deal with it' using paracetamol and sleep aid on the dose evenings but once used to the regime I cannot complain because it doing the trick.

I hope this helps. All the best. Penelope

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Hi Penelope, what are some of your extreme side effects from Pegasys? I'm glad that in spite of the side effects, you are responding really well to it. Great to hear that you responded so quickly. Are you still on weekly doses or will your doctor at some point spread them out?

Thank you for your input!

Anne

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Hi,

It is a very difficult decision and you've had some great advice already. I am 41 and was diagnosed two years ago after a blood clot on the brain. I am pretty sure that I would not have had the clot had I been taking aspirin at the time. Anyway, I was considered high risk and was put on Pegasys. It was a frightening thing taking it for the first time but looking back I am very happy about the decision. If you have any other symptoms such as visual migraines, lowering the platelets might help you feel better overall. It certainly did for me. And I know that I am doing everything I can to avoid another clot. Pegasys has also been shown to slow disease progression in some patients.

Good luck with your choice! Kind regards, Cecilie

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Hi Cecilie,

I feel the same way as you do regarding the clot we both got and had we been on aspirin, it might not have happened.

I had double vision after the stroke, but after a month, it got better, although my vision to my right still isn't great. But the right side of my face is also numb, as well as the right arm. It's as if it's still asleep. I always assumed that this was a result of the stroke, but I wonder if going on Pegasys could alleviate some of the problems. That would be really nice, but that wouldn't be my deciding factor.

I'll stick to my aspirin regimen for the time being. I am getting a 2nd/3rd opinion next week and I'll see if this specialist has the same view and recommendation. I am only delaying, so we'll see how long I stay with this decision.

Thank you for your input and sharing your experience..

Anne

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