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I am terrified. Does it get easier?

Hi. I am new here. This is my first post. I am a 35, 36 next month, year old male living in Florida. Over Thanksgiving I experienced tingling in my right tricep for a minute or so and a couple dizzy spells lasting about the same amount of time. I then experienced tingling along the jawline on the right side of my face. I made an appointment with my GP. My GP diagnosed me with hypertension, and requested I go to the ER and get a CT Scan and bloodwork. Went to the ER, the CT was negative, but the bloodwork showed I had platelets in the 1200s. The ER suggested I go to a specialist and couldn't give me any other information as to the cause of the high platelets.

I went to a specialist, a hematologist, a week later. He pulled blood to test for mutation, and diagnosed me with ET. I went for a recheck the next week, my HEM did not have the results, but wanted to schedule me for a BMB and said that my platelets had increased to 1600. My HEM stated that I would be put on HU for my ET. So that is my story, so far. I have my BMB tomorrow afternoon, and will probably be put on HU tomorrow as well.

I am anxious about the BMB. I am having it done in the office with local anesthetic. I know it is painful but quick. How long does it take to recover from the BMB? Secondly, and probably more scary for me is the thought of being on a chemo drug for the rest of my life. Is HU as bad as I am thinking it in my mind? I am very fortunate and have a loving wife and 2 daughters, 3 and 6, and I want to be as active and involved as I have always been. I am afraid of getting fatigue and not being able to participate with my family or function as necessary at work. I have not experienced any fatigue that I know of due to the ET, and rarely get headaches. Also I have most likely had elevated platelets for approximately 6 years or more from reviewing my past bloodwork.

BTW this forum seems awesome. It is very positive with people offering solutions, and that is what I appreciate. Any responses to my post will be greatly appreciated.

Thanks.

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You are very lucky to have had such a thorough workup of tests. Don't panic, once you're on the meds it will start to normalise your bloods and relieve some symptoms.

Keep well hydrated with water & minimise the amount of tea & coffee you drink.

The only suggestion i can make is to request pegylated interferon if available. Read through some of the posts on this site. If tolerated it is the medicine of choice for younger MPNers

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PS, stress raises platelet counts so try & relax, even if you have to take HU in the mean time.

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Thank you for your advice. I have been stressed non-stop since finding out I had high platelets. It has made enjoying Christmas with my girls slightly difficult. I am normally all about Christmas. My family has been the best medicine though.

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Your illness can wait. Just play it by ear as it comes. There is plenty of time to deal with that. Enjoy your family and have the best fun ever with your children.

Many people who have a BMB are able to return to work the same day, so hopefully you will fall into this category as well. Best wishes and good luck.

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Thanks. I appreciate the kind words. I am going to do my best to concentrate on the good parts in my life, which i am fortunate are a lot. Unfortunately I have to work Christmas, so I will be without my family for a bit, but I plan on making up for it the week after.

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Have you asked your Hem about starting on Pegasys rather than HU. There is increasing evidence that Pegasys can, atleast for a significant subset of patients, slow down or even reverse progression. Google Ropeginterferon versus HU.

It has a reputation for more severe side effects but recent studies indicate similar level to HU.

BMB a bit uncomfortable but not too bad. A lot depends on skill of the practitioner.

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Hi Rancor114,

Sorry to hear of your ET diagnosis at such a young age, it can’t be easy to hear.

As you say, this is an execelellent forum. Maz is the administrator, she can put you in touch with a ‘buddy’ if you feel the need for extra support. A ‘buddy’ is someone who is both around the same age, and has the same diagnosis as yourself. There is also a lot of up to date information on the MPN Voice website. You can also ask any question on the forum and someone will hopefully get back to you.

It sounds like you have a great haematologist who is following the WHO (World Health Organisation) guidelines for an accurate diagnosis, so take strength from that! I agree with Fee13 about Pegasys as a treatment option for younger MPNers. I presume you’re on aspirin or similar at the moment for protection?

I can’t answer your question about a bmb as I’ve never had one. I’m sure someone else will help with this. I was diagnosed with ET by the Jak2+ mutation alone. WHO 2016, now states that a bmb is a major criteria for a diagnosis of ET to distinguish ET from PMF.

I know it’s easier said than done, but try not to worry too much. Once you have your results back a treatment plan will be put in to place if necessary. It is also comforting to know that there is excellent ongoing research taking place into MPNs. Also, look up Patient Power based in the USA, lots of information on there too. I found ‘Ask the Experts’ section very helpful in the early days of my diagnosis.

I do hope you manage to enjoy xmas with your family.

Mary xx

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Thank you. I was on Aspirin but was told to stop for the BMB. I will have to see what my HEM wants me to take tomorrow. I am very fortunate in that my HEM seems very knowledgeable and compassionate. He is roughly the same age with 2 children in the same age range as mine, so I know he can relate to my situation. So I feel i am in good hands. Just have to take it as it comes, but right now since everything is so new it is hard for me not to let my mind run rampant.

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It is a normal response to be anxious. However, don’t add to your anxiety by overloading your mind with too much information at this moment in time.

MPNs are complex, and it will take time to clearly understand your diagnosis. The hard part is this waiting time for an accurate diagnosis and treatment plan, it is the most anxious part for most of us. I’m sure when you go back to discuss your results and action plan with your haematologist he/she will put your mind at ease.

It is reassuring that you have a good relationship with your haematologist. This will serve you well.

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Hi Rancor114

Yes it does!! :-)

The diagnosis is the worst bit. Once you have all the information tho it becomes so manageable. I was diagnosed at 37 with platelets at 1200. My HEM kept me on Aspirin only until about 6 months ago when I opted for medication. I’m on peginterferon and my platelets are stable at 350 I would personally recommend this medication, it has worked wonders for me with little to no side effects!

Fatigue is a very common side effect and yes it does get in the way but there are ways and means to manage it so you can keep going (plenty of proper sleep, yoga, water, Vit b12, magnesium - check with your Con before taking anything to boost energy levels) I’ve 2 jobs and a law degree keeping me busy and I manage just fine!

The BMB is uncomfortable as hell but it doesn’t last long and it only takes a day or two to get over, they will talk you through protecting the site until healed.

The words ‘rare, genetic and blood cancer’ are terrifying! Especially so young, but honestly once you have control of your treatment and are managing your symptoms it becomes just another part of life. There are some days when I feel under but mostly I forget there’s anything even wrong.

Just get to recognising your symptoms and ease up when they flare up. This site is great for info and support and even just a moral boost late at night. Being international theres usually always someone about.

Good luck and have a lovely Christmas 🎄

Kerry :-)

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I am glad to hear you are able to be so high functioning. It is very encouraging. As far as symptoms now I have just experienced short dizzy spells and tingling. No fatigue or headaches to really speak of. I am worried of the medication being too burdensome. But reviewing this wonderful forum I have read plenty of testimonials of people on various medications with little to no adverse effects. This forum and people like you help to calm my overactive mind. Thanks.

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Hi Rancor. Sorry to hear about your high platelets. My BMB was in the office too, but no locals. It is rather short and yes some intense pain when withdrawing the BM. The mental anguish and stress is what was hard for me afterwards. Try to relax. I am 60 years old, have ET, and diagnosed as Calr Type 1 June 2018. Best wishes.

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Hi Rancor,

I can completely identify with how you're feeling right now. I was diagnosed with ET last year, and started HU in July. I was very hesitant to start it, for exactly the same reasons you have, but I did it . . . and everything is fine. I take 500 mg (one pill) one day and 1000 mg (2 pills) the next - alternating like that each week. I've had zero side effects, other than it has lowered my platelet count which is what we want. I'm very active - racquet sports, running, hiking, etc., - and that hasn't changed at all. My anxiety and worry levels were high for a couple of months, but then as others have said, it kind of recedes into the background. I had a BMB and it was fine - a little discomfort, but very manageable. I walked home afterwards and there were no residual problems. Like all of us, I really wish I didn't have ET, but from everything I've read, if it's managed so that we don't get clotting events like stroke or heart attack, the rest of our lives should be pretty much like everyone else's. Sounds like you have a good haemo, which is excellent. I'm in Canada, and a lot of the folks on this forum are in the UK, but we're all in the same boat, so keep checking in and let us know how things go. I'm betting they'll go just fine.

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Hi -- I'm sorry to hear about your diagnosis and, as many here have said, the anxiety you're feeling is completely understandable. You're lucky to have a good doctor and wonderful family support -- it means you have the foundation for adjusting to treatment and finding your way in these early days. Patience is difficult right now, I know, but as you get more information, things do get better and easier. Rely on the forum for questions and support -- we all know what you're going through and are here whenever you need us. Take care and let us know how you're doing. Best wishes to you.

Kim

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Hi Rancor114,

I'm new too, I had my BMB a few weeks ago and it honestly wasn't as bad as I thought it would be, I was a bit uncomfortable for a week or so and then was fine. I hope yours is quick and better than you think.

I can't help with the rest of your questions as I'm new to it all too and haven't started a treatment yet. I'm also not looking forward to a life of chemo, if that's the decision made when I go back.

Angel x

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Most importantly don’t waste precious time stressing over what can’t be changed or may not be as bad as you fear. I was diagnosed this year with ET and probably spent half the year crying and stressing and I consider myself a strong brave woman! What a waste!! Yes, I have ET, yes I am still fairly young but in all probilities have had it for years and years. I have led a really active and busy life up till now but did have a pulmonary embolism 4 years ago which was strangely put down to allergies. I took 6 months to have my husband convince me to take the hydroxycarbomide for the sake of my family. So I finally tried it and 3 months in my platelets dropped from 1276 to 883 and I feel good! So don’t let this stop you, live your life, love your family and do whatever it is that makes you ecstatic to be alive, but listen to your body and understand what it is saying and heed its warnings. Rest and hydrate. All the best for Christmas. I am off on a family ski trip in the Arctic circle . Live, laugh, love. Penny

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Hi I've been on chemo for over a year now and have found that working with my ET works for me rather than swimming against the tide if you get my drift. Sure I get fatigue issues and have a time in the day to be quiet & rest. I hope you get used to your condition and the meds start doing their thing soon. I go to the gym twice a week, nothing too vigorous, But it's my way of not letting the disorder define me so finding a psychological boost also helps. I wish you and you family my best wishes and as one of our great historical figures said "K.B.O Keep buggering On"

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Sorry to hear you have ET - I was on HU for three years with no side effects - I have PV.

It’s hard but try not o worry you sound as if you are being well looked after medically and by your family. I hope the BMB goes well.

I wish you all a lovely Christmas

Anna x

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Hello and welcome to the Forum. Sorry to hear of your recent diagnosis, it does throw us into a bit of a tailspin at first but there is life after diagnosis. I have PV not ET but was diagnosed more than 30 years ago when I was 29 and have been on Hydroxy ever since. I work (more than) full time and have been fortunate not to have any particular side effects with HU. It is scary that its chemo... but thats only a word, and actually I have had more trouble with side effects from a much more 'benign' drug I take for smething else!

Dscuss all your concerns with your haem, and ask for the options.

Good luck. Fee

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Hi there! Wow, you remind me of myself when I was first diagnosed!

I am 36 now, turning 37 in June. 2 and a half years ago I was diagnosed with PV. My symptoms were tinnitus, bone pain in my clavicle and dizzy spells. Also went for random blood test and they found abnormalities, thereafter Jak2 test and the BMB. Had a wife and two boys ages 1 and 5. The BMB is rough, best of luck with that, know that there are 1000s of people that has gone through it before and you aren't alone. My BMB was to confirm if I had PV or ET as my platelets were also high at the 800k mark.

I was put on 1.5g HU immediately and eventually all the symptoms went away even the itch. I now have to deal with the fatigue, headaches and nausea the HU causes me but I am fortunate that cannabis oil takes away all the symptoms except for fatigue.

About 6 months after my diagnosis my beautiful wife passed away unexpectedly and left me behind to deal with this new disease and care for two little boys. It was rough at first, but I found focus in joining a gym again and it does help with my health and fatigue a bit.

Two years later almost and everything is normal. Having PV is also now normal for me. I do the HU as is needed (currently on 0.5 or 1mg a day - 1 cap in morning and 1 before bed). It also helps with fatigue to split dosage seems. I go for phlebotomy (venesection) once a month to check on blood levels as to monitor HU required.

A little advice... It all seems very overwhelming at first. I promise your life will be as normal as it was before you knew you had an MPN. A few changes will come though. Look after yoruself, eat healthy and stay away from junk food, get some exercise and keep being positive.

Best of luck with everything! Look after yourself :)

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Thank you. I am so sorry to hear about your wife.

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I agree wholeheartedly with fee13. I started on HU and managed 4 weeks before I had to stop due to intolerance. I have been using Pegasys since June and the speed at which it brought my platelet count down was amazing. Within 3 weeks they were within normal range. That has been with 45mcg per week. I now administer 45 mcg every 10 days.

There are side effects for me but we are not all the same. I get most of them but many say they get none at all. the results make it worthwhile.

I totally understand how you are feeling at this time. It has taken me about a year to come to terms with my diagnosis, which, like you, showed that I had had this 'condition' for around 6 years at least.

If you keep in touch with us on this site, you will find so much information to help you with everything from fatigue to aching bones and joints. At the forum I attended this year, I learned that doctors will not advise you about supplements that may help you because there have been no official medical tests to prove their effectiveness. However, I was thanked when I drew attention to the benefits I find from taking sublingual B Complex and B12. I also try my best to follow a low inflammatory diet, which I can promise, controls those aches and pains.

I wish you all the best. I know you cannot ignore it and get on with Christmas until you have allowed yourself to come to terms with this but just be content that you are now diagnosed and you will be looked after.

Physical activity also helps a good deal and I'm sure at your age you will be active in any case but just a 40 minute walk a day will improve you mental and physical wellbeing. ATB. Penelope x

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Hi,

I am a 55 year old male and was diagnosed with ET in May 2017. I too had reservations about HU and after reading about Peg Interferon I had it in mind to push for that. Fortunately the consultant suggested this before me and I have been on Peg since Sept 2017. If you are unsure about HU try reading up on Peg Interferon and maybe chat to your consultant to see what they think. For me (so far) Peg has been great and has had few side effects so I would recommend. Good luck, don't panic and make a considered choice.

All the best

Jocko

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Welcome, Yes it’s scary. It was many months later before I came to terms with the diagnosis. You will get used to the idea you have ET.

On the positive side, I was tired when my my platelets were in the 600s. You could well find that once your platelets lower you will feel much better.

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I will just chime in to echo what most have already said here on this terrific forum. I am Jak 2+ with PV (also live in florida! 😜) and had a bmb to confirm. Honestly the bmb was not too bad at all for me. Maybe he gave me something to relax me. I took nothing but aspirin for the first five years and am now on Peg which I also highly recommend. I have the fatigue but no itching and work full time. It is so scary at first but you will do very well I am sure. As others have said, with the passage of time, the disease becomes more manageable. Try to breathe deeply and enjoy the holiday.

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It does get easier, after nearly 3 years Im coping well but be prepared to crash occasionally just let it, pass & it will ! - Then carry on. Meditation. Relaxation & Mindfulness helps, but takes a while to get int.

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Thank you very much for all the responses. Your kind words and wisdom have done a lot to calm me down and prepare me for the future. I had my BMB done. It wasn't as bad as I was making it out to be in mind. No true pain, just a lot of discomfort and pressure. I am a little sore and tender now, but this pass. My HEM calmed my fears about meds, which I am still waiting to be prescribed. My next appointment is 1/2, so I just plan on working and trying to enjoy Christmas as much as possible (I still have to work).

Thanks again to everyone. Everyone have a Merry Christmas and Happy Holidays. I am so glad I found this forum. Filled with logical positivity and great solutions, also awesome, helpful people.

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Try not to worry too much .

My husband diagnosed with PV in 2012 he's been on hydroxy for 3 years and had no side effects at all.

His PV has progressed to MF now it's worrying but it can be managed.

His BMB wasn't as bad as he thought it was going to be this revealed the fibrosis in his bone marrow.

Try not to read up on too much as it can scare you.

My husband only suffers fatigue he's 46 and still works full time .

Tracey

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Hi Tracey , sorry to hear your husband progresses to mf . How did he know that ?? I’m 48 and have pv for six years now

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