My 76 yr old husband has just been diagnosed with Essential thrombocythemia (ET). He has no symptoms and the diagnosis was made after blood tests for something else. As he does not feel ill this was a shock. He has been on aspirin daily but has been told he should start a daily low dose chemo tablet. I am very concerned about the side effects I have read about particularly fatigue and keeping out of the sun. He has always loved sitting out in our garden and we often go abroad with the family. We also help out looking after our 3 soon to be 4 grandsons who live a 2 hr and 1 hr drive away. I would appreciate any advice .
3 Likes
Dear @Eileen1
Thank you for posting and joining our Forum. I do hope this will be a safe and informative space for both you and your husband.
It sounds like you’ve both had a shock with the diagnosis of Essential thrombocythemia (ET). As your husband has not experienced any side effects this does mean that the disease itself has not had any effect on his general well-being which is good. Essential thrombocythemia (ET) is a lifelong (chronic) condition and people with Essential thrombocythemia (ET) are expected to live a normal lifespan. So the treatment proposed is there to prevent any symptoms of the disease affecting the individual.
We have some webpages here Essential thrombocythaemia | Blood Cancer UK that may be useful and also you order this booklet for free Essential thrombocythaemia (ET) | Blood Cancer UK Shop.
Hydroxycarbamide is a type of drug called an anti-metabolite. It works by interfering with the DNA in cancer cells. DNA is like a set of instructions for the cell, and damaging the DNA stops cancer cells maturing, so they cannot survive for long.
Hydroxycarbamide is a drug you can take as a capsule at home. It’s classed as a type of chemotherapy, so there will be warnings on the drug packaging that may seem alarming if you’re not expecting to see them.
Most people with Essential thrombocythemia (ET) take a very low dose of hydroxycarbamide and have few side effects. If you would some more detailed information on this drug our colleagues at Myeloproliferative neoplasms (MPN) voice have produced this information Hydroxycarbamide – MPN Voice
As you will read, every responds differently to medications but reporting any concerns to the Haematology team will allow this to be managed effectively. The aim of the treatment is allow the patient to have as normal life as possible which could include travel, sitting outside and caring for Grandchildren. There will just have to be a few adaptations and planning, for example sunhats, sunscreen and liaison with the Haematology team about travel. There should be no issue with spending precious time with family.
I do hope this is helpful and if you should need to talk this through, do get in touch: Blood cancer information and support by phone and email | Blood Cancer UK
Best wishes
Gemma
4 Likes
Hello there @Eileen1, welcome to the forum. I’m glad you found it as there are many of us here living well with MPN like the Essential thrombocythemia (ET) your husband was diagnosed with. I’m so sorry he was diagnosed with Essential thrombocythemia (ET), but would say from my non-medical point of view that it’s great that he wasn’t experiencing any symptoms.
In 2023 I was diagnosed with a closely related Myeloproliferative neoplasms (MPN) to your husband’s, Polycythaemia vera (PV), and can empathise with much of what you describe. I also didn’t have any symptoms and the JAK2 gene mutation that led to my diagnosis was found via blood test. It is a big shock and took me time to take in and adapt to, but there can be normal life again.
Sounds like your husband has been offered the same treatment as me, namely aspirin to thin his blood and hydroxyurea to disrupt the gene mutation. Without these I would be at high risk of blood clots, which are our main obstacle with Essential thrombocythemia (ET) and Polycythaemia vera (PV).
I’m not going to pretend that taking hydroxyurea every day has been plain-sailing. It caused me severe fatigue for a few weeks and the fatigue lasted about 3 months. It faded over that time and now I’m back to hiking, socialising, and being able to think more clearly. This is my experience though, and I know others around the forum have different reactions to taking it. It might be worth looking around the forum to see how it could affect your husband.
However, according to my lovely haematologist, hydroxyurea is meant to be a mild form of chemotherapy and is very successful for most people in treating Myeloproliferative neoplasms (MPN). It’s been used for decades as the main treatment for kids with sickle cell disease and they don’t grow up to have higher incidences of other cancers, so that reassures me of its relative efficacy and safety.
Hydroxyurea does make our skin photosensitive though, and very slightly more at risk of developing skin cancers. We can simply wear high SPF sun lotion, sun-protective and/or long-sleeved clothes when out in the sun. After a couple of experiences of my skin feeling sort of fizzy from forgetting to put on sun lotion I’ve not experienced this again, and I happen to live in a sunny place so my precautions must be working!
Having an Myeloproliferative neoplasms (MPN) means our immune systems may be slightly weaker too, so it’s worth bearing in mind that viruses and lurgies might affect us more than if we didn’t have Myeloproliferative neoplasms (MPN). Having thinner blood from treatment means cuts and wounds take longer to heal.
Also, I keep a mask handy for when I’m around others sniffling and coughing in public and other busy places like buses, supermarkets etc. and haven’t caught any viruses since. Keeping up with flu and other vaccinations, including for RSV and COVID-19, has no doubt helped too.
Hope this helps a little to reassure you that your husband can carry on mostly normally with some slight adjustments like dear @GemmaBloodCancerUK said.
I hope the forum comes to be helpful for you @Eileen1 as you support your husband, but I’m very sorry he was diagnosed with Essential thrombocythemia (ET). May I ask how you’re doing? It’s a lot to take in isn’t it?! I really feel for my other half as my suddenly going from healthy to living with blood cancer was a big adaptation. Do lean on loved ones now while you support your husband, and please let us know how you both get on.
3 Likes
Hi @Eileen1 i am so glad that you have found us and @GemmaBloodCancerUK and @Duncan have given you great different responses
I have a different type of blood cancer, I am 75 yrs old and I was diagnosed 21 yrs ago.
You are obviously a very caring wife and I think what is anxiety making is the unknown.
Firstly I think that it is important to say everyone is individual and has differing medical histories. Also everyone can react differently to treatment tailored to them.
However I have learnt to turn negatives to positives like @Duncan and how can I still sit and be out in the sun. It is just high factor sun screen, a fetching hat and long sleeve blouses/shirts.
It is worth it as I have had sun cancer on my head twice over the years.
As for fatigue another advantage of my diagnosis is that it has made me look at what I want to have out of life and with whom. I have also got to know my fatigue and what triggers it.
I have just learnt to say ‘NO’ and how to ask for help and how to accept it
I can tell from your post that family and travel are important to you both so enjoy yourselves and keep communicating together.
There is a lot of information on the Blood Cancer UK website as and when you need it.
Please do keep posting how you are both doing and I look forward to hearing more about you.
Look after and be very kind to yourselves
3 Likes
Thank you all for your positive comments. Maybe going on Google is not the best as there are so many negative comments such as having to flush the loo twice as the medication is so toxic.
I think our main concern is that he does not feel at all unwell apart from aches and pains that come with getting older, and the worry that the medication will make him feel worse rather than better. We were going to see the hematologist in a few days but this may have to be rearranged as we both have coughs and the hospital has asked not to come in if you have one.
4 Likes
Oh @Eileen1 I remember those ‘fake news’, weird and negative theories whizzing around during Covid times.
Google is not my friend I can tell you, when I was first diagnosed it gave me 5-10 yrs life expectancy and I am still here 21 yrs later.
I immediately wrote my will and funeral music!!
I can laugh now, I didn’t at the time.
Let us know what happens about Tuesday and I hope you are both feeling better soon. xx
2 Likes
We had our appointment today and have come away with a more positive attitude to him starting the medication. The doctor tended to play down the cancer link and answered all our questions. My husband eventually realized that although he had no symptoms ,in the end the choice came down to medication or possible thrombosis. He will be starting medication in 2 weeks after my son’s 40th birthday and a concert at the O2 as we were concerned that any possible fatigue would spoil the day. Thank you for all your help.
4 Likes
Hello again @Eileen1, that’s great about the appointment helping you come away feeling more positive. Long may that be the case!
Like your husband I had no symptoms at diagnosis, but realised from reading about other Myeloproliferative neoplasms (MPN) survivors on the forum that this tends to be uncommon. I feel lucky to have found it early before any symptoms developed, and maybe your husband might too.
I think you’re wise to have delayed starting medication until after those lovely plans you’ve got. I tried planning an international trip after my diagnosis and I couldn’t figure out the finer details due to my foggy chemo brain, which was upsetting at the time.
As for your husband’s haematologist playing down the cancer, that’s sadly been my experience too. My first haematologist told me my Polycythaemia vera (PV) wasn’t cancer and that the hydroxyurea he prescribed me wasn’t chemotherapy. He was wrong according to international consensus so I changed to a doctor who is more up to date with treating Myeloproliferative neoplasms (MPN). Your husband may encounter others who minimise his Essential thrombocythemia (ET) or tell him it’s not cancer, but you’ll both know better!
Oh and I hadn’t heard of flushing the loo twice when taking hydroxyurea, that sounds like a waste of water to me! My rubbish first haematologist didn’t tell me about the very slight risk to sexual partners from those of us taking hydroxyurea, so I’m just sharing that in case it’s not been mentioned.
Do let us know how your husband and you get on @Eileen1, now you have more clarity about what he’s living with. Enjoy your special events coming up!
2 Likes
Oh @Eileen1 I am so glad that your husband and you had a positive appointment today and that you have more clarity.
It sounds as if your son’s 40th birthday and a concert at the O2 are going to be brilliant.
Please do let us know how your celebrations go and your husband starting treatment.
Just enjoy yourselves and please do keep posting.
2 Likes
Thank you Duncan and Erica for your kind comments. My haematologist didn’t mention the slight risk to sexual partners but I had read about it in a leaflet. He also didn’t think my husband needed to wear a hat in the sunshine but rather use a high factor sun screen.
One thing I am concerned about is cleaning the loo particularly as most men at times have problems with their aim! I think it has been a big mistake going on Dr Google!
3 Likes
Oh you are most welcome @Eileen1! Glad you noted that hydroxyurea risk too, great minds…
As a bald man I’ve worn hats in the sun for years anyway prior to diagnosis, but I would maybe encourage your husband to wear them too when he’s out and about in the midday sun especially just to be careful. Unfortunately, taking hydroxyurea can slightly increase our risk of developing skin cancers so it’s worth being a little more careful beyond sun lotion.
Ha I know what you mean about us men being messy in the toilet! Maybe he could clean up any of his own near-misses?! I wouldn’t worry about risks to you from being in proximity to your husband and any of his ablutions according to what my haematologist told me.
And yes, avoid Dr Google at all costs! I’m glad you found the forum @Eileen1.
1 Like
Thanks again for your comments. Can anyone recommend a travel insurance company as we are hoping to go away at Easter and October?
3 Likes
Hi @Eileen1 I attach the Blood Cancer UK thread on travel insurance
Travel Insurance and Blood Cancer - Living with and after blood cancer - Blood Cancer UK Online Community Forum
Others might be able to share their experiences for you.
2 Likes
I was feeling more positive about our situation but recently after reading some posts on another forum I am having real worries about the danger of the medication to others . We often go to stay with our children and grandchildren. My daughter has 11 and 8 year old sons and my son has a17month old son and his wife is expecting another baby in April . I am having nightmares about the medication having any adverse effects.
3 Likes
Hello @Eileen1. I can understand your apprehension about your husband starting the Hydroxycarbamide. I realise every patient is going to be unique but if I can reassure you a bit, my mother took the drug for over twenty years without any issues. She eventually died at the age of 92 last year! The Essential thrombocythemia (ET) thankfully didn’t cause her any significant problems either. Try not to be too alarmed by what you read. Even the leaflet that comes with a box of paracetamol these days can be scary. Thinking of you all, Willow x
5 Likes
I hear your concerns @Eileen1 and understand that you don’t want your husband’s treatment to negatively affect anyone around him, which is so thoughtful. Perhaps he’d extend that grace to himself? It’s sometimes hard to put our own health first but he’s as worthy of caring for as your grandkids.
Dear @Willow gives a reassuring example of how hydroxyurea can really help—wow your mum reached 92 with Essential thrombocythemia (ET)?! She was clearly doing something right that I aspire to! I agree about trying not to be too alarmed about the minimal potential risks of these medicines. I really do believe that we’re prescribed what’s best for us at our current stage of wellness and that it should have the fewest side effects.
But you can always speak to your husband’s haematologist and relay your concerns @Eileen1. They might have some facts and figures that make the choice easier. And you can always call the lovely specialist nurses at Blood Cancer UK who will have access to the latest information about living with Essential thrombocythemia (ET) and hydroxyurea, their number is 0808 2080 888.
Do please let us know how you and your husband get on and what he decides.
3 Likes
Hi @Eileen1 the unknown is always scary, and some information out there might be unreliable.
@Willow and @Duncan have given you great responses so all I will do is copy your post to the Blood Cancer UK nurses for you @BloodCancerUK_Nurses
It is always best to be on the safe side and have peace of mind for everyone
3 Likes
Thank you again for all your comments. I’m afraid I’m not really in a good place. The latter part of 2024 was not the best. My beloved older sister died in September barely a year after my older brother which left me feeling rather lost and alone being the only sibling left. My husband has been having tests and scans since June leading to a diagnosis of Monoclonal gammopathy of unknown significance (MGUS) and also he has a cyst on his spinal cord, neither of which are causing any symptoms. Then the haematologist noticed his platelets had been high for the last few years and next thing we know is the diagnosis of Essential thrombocythemia (ET).
My husband never worries. His thoughts are it is what it is and we will deal with it. How ever as he won’t be starting the medication for a few weeks his way of dealing with it is to put his head in the sand and not want to talk about it. I therefore have all these worried going around in my head particularly at night.
2 Likes
Oh @Eileen1 loosing a brother and beloved sister so quickly in a year must be so difficult for you, there is no right or wrong way to grieve, just be kind to yourself.
Then with your husbands diagnosis’ as well in 6 mths, it is a lot to take in.
I also have a husband who is a head in the sand type of guy and won’t talk about things, for me it can make it feel a lonely, isolated place, especially if the other person won’t talk, but there is no right or wrong way of being and dealing with things.
I certainly know about the night being the time my mind takes off, it is like a washing machine and it reminds me of the Mamas and Papas song (and others) Dedicated to the one I love - The darkest hour is just before dawn.
Perhaps just try and take it a day at a time (very easy to say, and difficult to do) that sounds enough to cope with to me.
The Blood Cancer UK support line is there for you on 0808 2080 888
Please do use our forum to say how it really is for you and really look after yourselves and especially you.
2 Likes
Dear @Eileen1,
I am sorry to hear the about the difficult time you are having. Dealing with your husbands recent diagnosis alongside the recent bereavement of your brother and sister is too much to deal with. It is completely understandable that you are feeling this way.
I can see all the wonderful support you have received here, but if it would help you to talk things through @Eileen1, the nursing support team are also here for you on 0808 2080 888. Its so important to look after yourself especially when you are caring for a loved one.
It can be very alarming when you read all the side effects of medications and understandable very frightening. Try to stick to forums and websites that you know and trust. When visiting family, I would recommended always keeping medication out of the reach of children and always store medications in their original containers.
Take care
Fiona ( support services nurse)
5 Likes