Essential Thrombocythemia

Hello :wave:

My 24 year old son has just been diagnosed with Essential thrombocythemia (ET) after an incidental finding of IIH . He has been on aspirin to thin his blood but because of the IIH he was started on Interferon injections. We’re disappointed to find out today that after a month on interferon nothing has changed with his platelets actually slightly higher :disappointed: has anyone else been here ? Did platelets eventually drop ?

Also on Acetazolomide for IIH

Thanks :pray:

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Hi @LauraL68 thank you so much for posting, welcome to our forum.
I cannot help with your questions but I will copy your post to the Blood Cancer UK nurses @BloodCancerUK_Nurses
I look forward to hearing more about you all.
How are you coping?
I think being a mum must be so difficult with maternal feelings in the mix as well, and wanting to care for a 24 yr old son who is actually an adult. I feel the same about my 50 yr old son, the feelings do not go away.
Look after and be very kind to yourself and please do keep posting.

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Hi Erica

Thank you for getting in touch ,

Has been torture tbh , two very rare diagnosis and oncologist & neurologist at a loss as to why this has happened, has he just been unlucky ? :disappointed:

He’s been in Interferon for a month but today his platelets are higher than they’ve been at 993 so don’t know what’s next perhaps Hydroxycarbamide ,

We meet on Wednesday so we will see what that brings , yes my baby even at 24 :broken_heart:

Thanks again for getting back to me, have a lovely evening

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Hi @LauraL68 perhaps see what Wednesday brings and we look forward to hearing from you after then.
Yes, a great sentiment and you have a lovely evening too.

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Hello @LauraL68 - sorry you have such a worrying time with your son, I know diagnosis and need for treatment is quite something to deal with you and to be looking in as mum in that situation is not an easy one. It also leaves many questions that need some help with to give reassurance about the condition and the medical assistance that can be given, I think both of you will benefit from that in coming weeks and will then see how your son can get help.
So I have Essential thrombocythemia (ET) too diagnosed 18 years ago in my mid forties - yet was first under haematology with unusual counts in my teenage years but it was the 1970s so testing and diagnostics not so good - so do know it will be of benefit to your son to get a diagnosis in his younger years as this will look after him moving forward. These days more and more are diagnosed in younger years with such specialised testing and like your son for younger ones Pegasys interferon is often the first line of treatment and it is very successful - the big thing to know is that interferon is slow acting and it takes usually quite some months to start taking effect on platelet counts - so it is really early days for your sons treatment and it doesn’t mean at all that the interferon isn’t working for him, for the majority it takes some while before it shows in the counts, the haem consultant will keep an eye on that and sometimes tweaks of dose are made although with Pegasys interferon the usual is a smaller dose in initial months and see how it goes. I should say in my 18 years I had 13 years on the chemotherapy Hydroxycarbamide and in the last five years have been on interferon, I am now able to inject every three weeks after the first years of weekly injections. A good resource of help and support is the charity Myeloproliferative neoplasms (MPN) Voice do try their website and Facebook - particularly the website includes a specific section called YOUNG PEOPLE AND MPNS BLOG tailored to all the patients who are diagnosed at a young age and is very positive and supportive.
I am sure as you both gain more information about MPNs you will find the way forward more clear and your son will soon be gaining much benefit from his treatment. Keep us posted

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Thank you so much for replying to me , it’s good to know interferon takes time to work tbh I thought it was fast acting so that has put my mind to rest , we will see what the consultation brings , thank you so much :blush:

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Sorry to hear about your son. I was diagnosed with trombocitosis in 2017 with very high platelets.
Hydroxycarbamide seems to work very well, unfortunately, it gave me a very dry mouth, and as my profession includes a lot of presenting and interviewing I stipped taking it. I am now on Angrelida.
The best of luck

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Thanks Carol , we are seeing haematologist tomorrow, so will see what that brings , hope you keep well :blush:

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Hello there @LauraL68, welcome to the forum. I’m sure you’d much rather not need to be here at all!

I’m so sorry to read of your son’s diagnoses of IIH and Essential thrombocythemia (ET). Your care for him comes across so well and how it affects your thinking sounds similar to how it affects those of us living with these blood cancers.

I was diagnosed with a similar Myeloproliferative neoplasms (MPN) to Essential thrombocythemia (ET) last year, Polycythaemia vera (PV), and survived a heart attack many years ago, so have an idea of the treatment and health concerns you and your son live with. I’ve taken daily aspirin since the heart attack to thin my blood as it was caused by a blood clot and haven’t had any clotting issues since. Since diagnosis with Polycythaemia vera (PV) I’ve taken daily hydroxyurea (in pill form) to control the blood proliferation as I’m considered at high risk of further clotting despite being a “young survivor”, and have occasional phlebotomy to just remove excess blood (a pint usually every other month) when my haematocrit is above 45 % and I have thicker blood. Folks tend to be prescribed interferon as opposed to hydroxyurea if they’re not at high risk of clotting, so this is a plus in your son’s favour I’d say.

Something I’ve noticed following my monthly complete blood test results is that they’re really unpredictable. So annoying! My platelets are in the normal range and do vary month to month, but it’s likely to be a combination of your son’s platelet count and haematocrit that will be noted by his doctors to see how he’s getting on.

What seems to help overall is reducing stress, which is easier said than done, especially after shocking diagnoses such as these. Stress just wipes out our already tenuous energy levels which can then worsen the cancer-related fatigue most of us live with. Your son might find that despite youth being in his favour that he gets very fatigued. I’ve noticed others on the forum often feel most fatigued after diagnosis and treatment begins as it’s doing its thing to control blood production, mostly in our pelvic bones and occasionally our spleens and even our sternums! Gross to think about but he might get aches in those areas. For me they passed and the fatigue faded somewhat after a couple of months of taking chemotherapy, which suggests it’s doing its job to slow down the proliferation.

So I’d say be heartened by folks like @Jilly20 who’ve survived so well with a similar diagnosis to your son. There are many Myeloproliferative neoplasms (MPN) survivors on the forum who’ve lived with them for many years. In fact, a common refrain from good haematologists seems to be that we will likely die with our MPNs than from them. We can live long relatively normal lives with minimal adjustments. Personally this is very reassuring!

Hopefully the haematology appointment has gone well and your son received clear information. It’s a good idea to take along questions and to have someone with him to make the most of these appointments.

Perhaps you’d like to read more about Essential thrombocythemia (ET) and MPNs, in which case I recommend the Blood Cancer UK research: Essential thrombocythaemia | Blood Cancer UK and What are myeloproliferative neoplasms (MPN)? | Blood Cancer UK

Should it be of interest, I attended a blood cancer conference earlier this year and took lots of notes from fancy haematologist experts relating to MPNs—they’re a bit buried but in the following thread: Northern California Blood Cancer Conference

Keep us posted about how your son gets on.

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Hi Duncan

Thanks for getting in touch,

Sorry to hear also what you’ve been going through, I have heard of Polycythaemia vera (PV) , haematology is such a specialty & almost difficult to understand at times ,

The consultation today was mixed , after a month on Interferon Jonathan’s platelets have actually risen just ever so slightly from 991 to 993 , the haematologist has explained it may take a while to see a drop if it doesn’t happen. He has increased the injections to 135mg per week from 90 , if this doesn’t work we will look at hydroxycarbamide , he did say if it wasn’t for the IIH he would only be on a blood thinner & nothing else

I know only time will tell but how I wish I had a magic wand :disappointed:

Take care :blush:

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Aw you’re welcome, @LauraL68! Thank you for your kind words.

Haematology really is a lot to take in and understand and so very variable. It’s taken me till now to feel more comfortable with it all, and I’m sure there’s plenty more to learn! I dread to think how it can be for people who have uncommunicative doctors. My first haematologist actually got some major stuff wrong, despite my case notes being right there, so I asked to be referred to a different one who happens to be far more thorough and holistic in his care. It’s not just the blood that is affected with these cancers, it’s our whole selves. Encourage your son to always check information he receives. These MPNs are rare and sometimes not well understood by even GPs.

It’s early days for your son’s treatment so try not to let those platelet numbers be too much of a worry. There are clinically proven ways to minimise and even undo the worst of any fatigue that your son might experience, mostly involving gentle exercise like yoga which seems counterintuitive but does really help. Have a look around the forum using key words relating to queries as there are many of us who know what you and your son are going through and can offer tips or just a keen listening ear.

Glad you found the forum, @LauraL68! Your son is lucky to have you looking out for him.

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Thank you Duncan that’s so very kind of you ,

Take care , Laura

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