Just diagnosed with ET calr positive 39 yr old male

[Peato]

Hi everyone, this is all new to me. I had a heart attack out of the blue in July 2020. After further blood tests I was found by Cambridge Addenbrookes hospital to have essential thrombocythemia (et) calr positive.

I am quite scared as I am only just 39 years old and have a young family. I really just want to live my best life and a long life.

Any help and advice would be greatly appreciated . I am Awaiting a date to have a bone marrow biopsy, they wanted to do this straight away however it’s tricky managing the meds I’m on now and what needs adjusting prior to the procedure.

Currently I’m on Hydroxycarbamide 500mg a day to bring my platelets down however I expect to move onto PEG interferon in a couple of months.

I am nervous taking the HU due to my age however it seems to only be in short term. So far no side effects and I never have had any until the heart attack!

ET showed up in my blood tests with my platelets being 823 at the highest over the past year and a week ago they were 720 on asprin and heart drugs alone. They will be tested again on 18th August to see what the medication is doing.

Thanks for any advice and thanks for reading.

[katiewalsh]

Hi. First, welcome to this forum. The folks who belong are wonderful & very supportive. Next, it sounds like your experience leading to diagnosis was similar to mine? A blood clot caused by ET leading to a heart attack in your case & almost dying from pulmonary embolisms in my case. Although I sustained permanent lung damage & need nocturnal oxygen now, I’m fortunate that’s all that happened. I hope you haven’t suffered any permanent damage. People can live long healthy lives with ET if they are receiving the right treatment. That requires you to have a doctor who specializes in MPNS. If you don’t have one, please get one as soon as you possibly can.!! A doctor who specializes in this can improve your quality of life, reduce the chances of another heart attack , stroke, etc. from blood clots and more. Although I was much older, over 60 at the time, I was put on blood thinners & baby aspirin to prevent future blood clots. A specialist will know if you need either or both of these. And what the best MPN medication is for you given your lab results & health history. But to ease your mind, there are many (perhaps most) folks with ET who live a normal lifespan. ET is considered the best MPN to have as it has very little chance of progressing. In case your doctor hadn’t told you, Hydroxyurea gets secreted in bodily fluids so you should wear a prophylactic. Your bone marrow biopsy may give you more information about your MPN. Last, there’s amazing research being done & new medications & treatments are being identified to improve our lives. Two good resources for information are MPN VOICE (I’m pretty sure that’s its name) & I especially like the online material by NCCN which is the most comprehensive I’ve found. Hang in there & keep your spirits up. And remember to post on here any questions you have or if you need some support or some understanding folks to vent frustrations to. When taking your hydroxyurea be sure to swallow it quickly, rinse out your mouth right away or just some large sips of water & remember to drink lots of water throughout the day. Most of us try to drink 2 liters a day. Take care. Katie

[Peato in reply to katiewalsh]

Thanks Katie for the kind words I have my second consultation on Thursday so can get some questions together and I will definitely have to start drinking a lot more water

[Mazcd Partner MPNVoice]

Hello Peato, welcome to our forum. We all understand how you are feeling at the moment about your diagnosis and what it means for you. I would advise that you read the information on our website mpnvoice.org.uk, it has lots of information about ET and the all the different medications used to treat it, and also how to cope with any side effects you may experience. I would also suggest that you write down any questions you have to take to your next appointment, this way you won't forget to ask something important, particularly about the different medication options. We are all here for you to help and support you, take care, Maz

[Peato in reply to Mazcd]

Thanks maxcd for the kind words I have my second consultation on Thursday so will get together some questions the first just left me shell shocked and my mind just went blank so will definitely make the most of my next appointment

[Otterfield]

Initial diagnosis is indeed frightening and probably more so as you suffered a heart attack. I hope it reassures you a little if I tell you that I was also diagnosed at 39, I am now 58 and doing fine. Initially I was on Anagrelide, then Hydroxycarbamide for 17 years. I moved on to Pegasys last year. Life can be perfectly normal with ET. Yes, different medications have various side effects but they vary for different people and, in my experience, are manageable. Best wishes to you and your family, Jennie

[Peato in reply to Otterfield]

Thanks jennie for the kind words peagsys sounds the best medication on paper I just pray I don’t get any side effects from it

I currently don’t have any side effects from the hydro

In a weird way speaking to yourself is what my head has been looking for someone who is or has been in a similar situation to myself and to see that you can have a normal life and that life doesn’t stop because of this

Thanks again

[Otterfield in reply to Peato]

Hi Peato, I'm so pleased to have been able to offer support. I wish you well with Pegasys - and you may indeed be one of the lucky ones who gets no or few side effects. Keep posting in the forum and let us all know how you are getting on. Jennie.

[Jocko]

Hi Pedro,

I am 57 and been on Peg for 3 years. It's been great - still cycle most days - play golf and feel fit and strong. There have been mild muscle aches at night but a couple of paracetamol deals with that. My count has gone down from 1200 to a steady 170. I stated injecting 45mgs weekly but have switched to 90mgs every other week - same difference less injections and less waste as syringes come in 90mg. If you get on with Peg it'll be a good move. Good luck - hope it goes well.

Jocko

[Peato in reply to Jocko]

Thanks for your message jocko glad to hear you still do a lot of sport as it’s a big part of my life and was one of my fear once I take the medication what would

It mean for me doing sports

If you are down to 170 is there no way you could then just manage with asprin and it would hold the levels or is it not that simple it was one of the questions I was going to ask at my consultation

Thanks again

[Jocko in reply to Peato]

I go by what the consultant advises - so far they have left me as is. To be honest because I have very mild side effects I am happy to continue with the low dose Peg. Hopefully you'll be surprised and taking Peg will be easy. I think you have to suck it and see. Everyone's different so hopefully you'll have no issues and it won't interfere with your life. Don't try and overthink this diagnosis - just go with the flow and enjoy your life.

Best wishes

Jocko

[katiewalsh]

Hi. As always MAZ’s advice is great. In addition to writing out your questions I’ve found it’s helpful to take someone along & give them a copy of your questions. They can take notes & remind you if there questions you left out and maybe new questions based on the information you’re given. My spouse & I do that for each other & I've also taken a friend if my husband isn’t available. I find it difficult to both take notes & listen & respond. But please don’t worry about forgetting something, you can contact them afterwards. You’re doing a good job so far!! Katie

[tracey13]

My husband has post PV MF honestly he was terrified at the thought of taking chemotherapy tablets . He's had no side effects at all. He was on hydroxy for two years .

Now he's on ruxolitanib and again no side effects. These blood cancers can be managed there's lots of various medication out there now and you can live a normal life.

We don't even think about my husband's blood cancer now it was taking over our lives.

He's seen the stem cell transplant team and they said he may never need a transplant . His bloods have been fantastic for the last 18mths.

During lockdown he's had to have emergency surgery to have his gallbladder removed as it ruptured nothing to do with his blood cancer , he's recovered so quickly .

Try not to Google things as it has you worried sick. This site is amazing and the support is absolutely brilliant from people who have the same diagnosis.

My husband has had one bone marrow biopsy he said it wasn't half as bad as what he was expecting. He said it hasn't put him off having another one .

Stay positive

Tracey

[Peato in reply to tracey13]

Thanks Tracey for this positive email

I must admit it kind of has taken over my life but just trying to find things to occupy my mind hoping things will get easier and better I have my second consultation soon so can hopefully get more answers

Not looking forward to the bone marrow biopsy it doesn’t help that I’m terrible with anything hospitals

Thanks again

[tracey13 in reply to Peato]

I can well imagine.

We had to see the stem cell transplant team a year gone January I was absolutely broken at the thought of all this it made me ill. It's all turned out not as bad as we thought and my husband is doing brilliant on ruxolitanib.

He works full time we have a great life still and continue to look forward. He's had PV since he was 40 he's 48 this year and nothing has changed .

This is an amazing site the people really help you through hard times when you are feeling stressed or worried.

Medication has come along way there's lots of research going on and things are constantly improving .

Hopefully one day they may be some cures!🤞

[Stevesmum42]

Welcome Peato.

As you can tell from the responses you have had, the people here are knowledgable, empathetic, and so kind and helpful.

A truly fantastic forum.

Best wishes Sandy

[Jacko30]

My daughter was diagnosed a year ago when she was 17, she’s started Peg and on 90mg every other week.

This all came about after having a blood clot on the brain, looking back she has had a high platelet count since she was 10 years old but it was never picked up.

She has had some side effects like thinning of the hair which is hard for an 18 year old girl but she says it will not stop her living a full life.

I’m proud of her as she is facing this as a life challenge that will not stop her succeeding in life.

[Mamab83]

Hello and welcome! I was diagnosed last year at 36 after a bone marrow biopsy. I’d had high platelets since 35 - or at least that’s when I had my first CBC so it could have been much longer. I’m triple negative and pretty Asymptomatic. My platelets are around 1.3 million but I’m considered low risk since I’ve never had a clot or bleed, my age, and being triple negative - so for now I’m on aspirin only. I have 3 small kids and I was terrified when I first got diagnosed. I was afraid I would die and miss out on their life. It took a while for the initial shock/sadness to settle but I’m great now! Other than vitamins and my aspirin daily I forget about it. I see my hemo every 3 months and live life! If anything it helped remind me life is short and enjoy it! I’m forever grateful it is what it is and not a cancer I picture when I hear the word “cancer”