Thrombocythaemia

Hello
My husband has just been diagnosed with Thrombocythaemia and is very fatigue and has lost interest in general life. We are due to travel to Thailand for a wedding, and he wants to cancel but I’m thinking the change of scenery might be good for him. He has started Hydroxycarbamide capsules and allopurinol. Any advice on this please.

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Hi @Kitts welcome to our forum.
I can only speak from personal experience about fatigue and I reckon that it is a feeling like nothing else.
Your husband is also on a treatment regime.
Perhaps this is something you really need to sit down and honestly talk to your husband about and find how he he is actually feeling at the moment.
If you were to cancel, and it is completely both of your decisions you might need to act quickly because of your insurance rights.
I hope you do not mind me saying so but just another thought, which might be completely out of the question, is that you go on your own.
I attach the Blood Cancer UK details on Essential thrombocythemia (ET)
Essential thrombocythaemia | Blood Cancer UK
The Blood Cancer UK support line is also there for you on 0808 2080 888
It certainly is a difficult dilemma for you both
Please do let us know how you get on and I look forward to hearing more about you both.
Really look after and be kind to yourselves

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Hello Erica

Thank you so much for your reply, my husband is very quiet and has never opened up about anything in past 30 years of marriage, I will carry on talking to him, you are right about fatigue, it’s really hit him. we are told by the haematologist to with a couple of weeks to see if the platelet count goes down and that he may be able to fly. I wouldn’t go without him, if he really does not want to go then we will definitely cancel, thank god we have an annual travel insurance but only got the basic cover so will loose some money but health is more important. I will keep you updated.
Thank you again

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Hi @Kitts my husband has never opened up about anything either.
Yes, you do realise that health is the most important thing in life and I definitely took it for granted for my first half century.
Look after yourselves and yes, please do keep us updated

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Hi Erica sure will, they also did a bone marrow biopsy, we are awaiting results for this. Thank you.

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Hello there @Kitts, welcome to the forum. I’m so sorry to read of your husband’s diagnosis and how it’s affecting him. It’s so lovely that you’re here out for concern for him.

I see @Erica has shared great personal advice and the Blood Cancer UK research about Essential thrombocythemia (ET). In 2023 I was diagnosed with a closely related type of MPN to your husband called Polycythaemia vera (PV) and my treatment also includes daily hydroxyurea, which I’ve taken daily since diagnosis alongside aspirin to thin my blood.

It sounds like your husband is experiencing the fatigue that is very common with taking hydroxyurea and living with Myeloproliferative neoplasms (MPN). Something like 80 % of us with blood cancer will experience fatigue and it can be pretty disabling if my own experience is anything to go by.

Soon after my diagnosis I went through a similar conundrum about whether to travel long-distance and in the end I had to reschedule as I just didn’t have the energy or brain power to think through all the planning. According to my haematologist, hydroxyurea is a mild type of chemotherapy which can take our bodies time to get used to, hence the fatigue and other common symptoms like headaches and foggy thinking.

Another issue with travelling whilst getting used to taking chemotherapy for me was not knowing if I’d find suitable healthcare at my destination and whether I had insurance that covered the potential complexities of becoming ill abroad due to my cancer. Although you already have travel insurance, it might be worth checking that it covers your husband’s new diagnosis and potential risks. There have been a few threads around the forum naming travel insurers who cover Essential thrombocythemia (ET) so maybe have a look. From memory there’s one called Staysure that insures folks diagnosed with blood cancers.

One last point, according to my haematologist again, is that having blood cancer and taking hydroxyurea will affect your husband’s immune system. Being stuck on planes and in stuffy airports around many others might put him at greater risk of viruses going around.

Personally I decided the risk to me travelling internationally wasn’t worth it… yet. Now I feel more comfortable about travelling as I’m more aware of my limits with energy levels and what hitting a wall of fatigue feels like.

Hope this helps a little. Hopefully your husband’s fatigue and zest for life will adapt as his body gets used to treatments. Do please keep us posted about how you both get on.

Hi @Duncan thank you for your advice, it really helps to be on this forum, we will probably cancel for sure and hopefully travel in the future. It’s a shock as he never has been ill, this was only diagnosed during blood tests when he had pneumonia in December.
Still trying to absorb the shocking news, is he safe to work? He works in terminal 2 in duty free, I’ve asked him to try and take early retirement due to risk of infection, fatigue, he’s refusing due to boredom at home.

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You’re most welcome @Kitts, and yes isn’t the forum great? Don’t know what I’d have done without it. I’m sure your loved ones will understand why you might not be able to travel just yet.

My diagnosis came somewhat out of the blue like your husband, although I received a positive JAK2 gene mutation test result first which gave me a horrible clue as to what was ahead. I then had a bone marrow biopsy like your husband to confirm which type of Myeloproliferative neoplasms (MPN) my blood cells most closely matched.

I’d say, from my non-medical point of view, that if your husband hasn’t been seriously ill before then that’s a great big positive. Many of us around the forum with Myeloproliferative neoplasms (MPN) find out we have blood cancer due to clotting events like heart attacks and strokes taking us to hospital.

Only your husband can tell if he’s able to work, but it might be worth reminding him that Essential thrombocythemia (ET) is considered a cancer which means he’ll have legal rights to time off for appointments and his place of work should legally adapt his work to what he can manage physically. Have a look here about money and working with blood cancer: Blood cancer: money and work | Blood Cancer UK

And if your husband and you would prefer to chat with a lovely specialist nurse who can point you towards whichever information you might need, do call them on 0808 2080 888.

Keep us posted @Kitts and maybe encourage your husband to look around Blood Cancer UK or even join the forum himself.

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@Duncan
Thank you so much for all the advice, really is helpful, will definitely call the nurse. We are still awaiting the bone marrow biopsy results, they have at the moment gone by the high platelets count which is 1.5 million :sleepy:. But we are positive this will go down with the medication.
Might ask the travel agent to hold the trip for at least a year or just cancel.
Will definitely ask my husband to join the forum, its the best thing I’ve done. Really helpful.
Thank you again, will keep you posted, hope you are well.

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Hi

I have essential thrombcyemia as well . … yes you do feel tired and fatigued but it does come and go …I was initially on the same medication hydroxcarbamide … this made me feel worse with fatigue and tiredness preservered for a couple of months then changed the medication to Angraglide and aspirin … this has worked better for me tiredness and fatigue has not totally gone away but certainly considerable better and more manageable .

Hope this helps and that you enjoy your holiday .

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HI @Aaron
Thank you, we will also see how the medication of Hydrocarbamide goes as platelets have only minutely gone down. We may cancel the holiday as he’s not keen to go especially with a high platelet count and risk of clots on long haul flight. He has weekly blood tests and follow up in February. So glad to hear new medication is working so well for you. I might suggest this to the consultant. :pray::pray::pray:

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Hi Everyone
We have decided to cancel the holiday but the travel agent is a bit of a pain, it says that full refund in exceptional circumstances due to unforeseen issues but they want a cancellation charge to be applied, but unwilling to tell me how much exactly. Should we not get a full refund due to diagnosis of Essential thrombocythemia (ET). Please advise.

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Hi @Kitts I do not know the answer to your question, you might need to look at your contract terms.
Then if you need to take it further the insurance company might be part of a conciliation scheme.
Other seasoned travellers might know better than me.
The Blood Cancer UK support line might also be of assistance on 0808 2080 888
Please do let us know how you get on and really look after yourselves

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Hi Erica
Thank you for your reply, we have cancelled, just waiting to see what the travel agency say. My husband had bloods done today, the platelets have gone up and potassium is high too, quite worried really, couldn’t meet the haematologist as wasn’t available. :sleepy::sleepy::sleepy:

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Hi @Kitts if your husband is concerned, and has a specialist nurse contact, then perhaps they would answer your concerns and questions,
Take lots of care both of you.

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Hi Erica
My husbands manager has said that he would need to take annual leave for his weekly blood tests. Isn’t he entitled to paid leave for treatment etc as Essential thrombocythemia (ET) is considered as a disability? Please help.
Thank you

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Hi @Kitts very good question, 21 yrs ago I had to take appointments as part of my flexi time.
I will copy your questions to the Blood Cancer UK support services for you. @BloodCancerUK-SupportTeam for you.
Others might have experiences
It will be interesting to hear more