Hi my name is Sal I’m 72 and I was diagnosed with Essential Thrombocythaemia ('ET') JAK2 Positive in May26. This was after my bloods at my GP had Platelet Counts over a year in the 700’s up to 737, I was continually at doctors for extreme fatigue that I recognised from Breast Cancer some years ago before diagnosis. Hospital want me to start hydroxcarbamide 500mg up to 1500mg daily, to date I have said no, I am terrified of the major side effects shown on the paperwork you need to sign on the consent form. I can’t seem to get around the chemo effecting all the organs in the body and also its a indefinite drug. I already suffer with Osteo Arthritis that effects my Clavicle, shoulders, hips, knees and feet and that’s hard enough to cope with. Does anyone else recently diagnosed suffer with these fears. I’m finding every day mentally draining. thank you
Hello @Sal
Thank you for taking time to send your post into the forum
I’m so sorry to learn about your diagnosis, my heart goes out to you.
I’m confident there are a number of people with not dissimilar circumstance who may be able to relate to what you are experiencing and how you are feeling about it, and I am sure they will respond to you via this thread
That having been said, thank you for reaching out, and if I may I would like to make you aware that you can get support by calling us for free on [0808 2080 888](tel:0808 2080 888) (Option 1) to speak to one of our Support Service Nurses in confidence.
Our phone lines are open:
- Monday, Wednesday, Thursday, Friday: 10am – 4pm
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Alternatively, call us anytime and leave a message and we’ll get back to you within one working day.
Living with blood cancer such as leukaemia, lymphoma, myeloma or any other type can be challenging, but there are a few things it may be helpful to keep in mind.
- It’s normal to go through lots of emotional ups and downs. However you feel, it’s OK. You’ll probably have good and bad days, and you won’t be the only one who feels like this.
- There are little things you can do to feel better. Recognising and acknowledging your emotions, being kind to yourself, trying mindfulness exercises and staying active can all help. There is also professional help out there if you need it.
- You don’t have to go through this alone. We’re here for you. Join our online community or contact our Support Services Team to talk to one of our nurses. We also have information to help your family and friends.
Do feel free to keep in touch and let us know how you get on
Take good care
Kind regards
Mike
Hello Sal, I’m 71 and was diagnosed with Essential Thrombocythaemia ('ET') JAK2 +MPL in April this year. I had been taking low dose aspirin for a few weeks prior to my diagnosis which helped greatly with symptoms I was getting in my feet, ie intense burning pain. I started taking Hydroxycarbamide at the beginning of May, 500mg per day at first but now add an extra 500mg on Saturday and Sunday. My platelets at their highest were just over 700 and are now around 480. At 3 months on, I haven’t experienced any severe side effects from the medication- I know the list of potential side effects looks very scary but you’re very unlikely to experience all of them. I still have bouts of fatigue, but they were happening anyway as a result of Essential Thrombocythaemia ('ET') long before I started the medication. My skin does feel noticeably drier but that just means I moisturise more. My hair is also quite dry but I haven’t noticed any thinning. Like you, I have osteoarthritis but only in my knee, and I’ve had that now for several years - it’s likely that I will have a knee replacement in the next couple of years. There seems to be a very wide variation in how people react to Hydroxycarbamide and I can only describe my own experience, but I feel happier knowing my platelets are being controlled. I’m happy to answer any questions you might have, and I’m sure others on this forum will also be able to help you come to a decision. Best wishes, Trish
Hi Sal, my name is Kevin, I’ve been taking hydroxycarbamide 500mg since Dec 25 after my Essential Thrombocythaemia ('ET') diagnosis. I’m 70 and reasonably healthy. My platelets were at 1300+ when I was diagnosed and are now 500+. I’m taking 11 tablets per week after starting on 7 per week. January and February were very tiring but thankfully my body has to a great extent overcome the fatigue and brain fog. Maybe I’m one of the luckier ones, I’m learning that others have different experiences.
I still get worried about the future and find it difficult to confide my fears to family. Day to day I’m doing fine and not suffering many side effects.
I’m not sure if any of this helps you (I hope it does) as I’m pretty hopeless at expressing emotions. Stiff upper lip still prevails.
I don’t regret taking the medication but I think there’s a stigma attached to the word Cancer which has led me to feelings of doom and gloom on a number of occasions. You’re definitely not alone with your fears, I hope you can come to terms with your situation and feel more positive.
All the best. Kevin
Hi @Sal, welcome to the Forum, though I’m sorry about the diagnosis that brings you here.
I know that @PatriciaBetsy and @klf1956 have already given you a sense of how differently people experience hydroxycarbamide day to day, and I wanted to share a couple of other potentially-useful things.
We’ve got a page on Essential Thrombocythaemia treatment and side effects that explains a bit more about what the drug does and why it’s often started at a low dose. It might be worth a read alongside what Trish and Kevin have shared. We’ve also got a page on coping with your feelings while waiting to make treatment decisions, alongside the mindfulness and staying-active tips our wonderful Forum Support Volunteer @GenesisDevice already shared.
It’s entirely your decision whether and when to start treatment, but it could help to go back to your haematology team with the specific fears you’ve raised here. They may be able to talk through these fears enough to allay them, or discuss a lower starting dose or other options in a way that feels less frightening. And as Mike said, you can also call our fabulous clincal nurses for advice on this as well.
Please keep us updated with how you’re doing, and take care.
Ceri - Blood Cancer UK Support Services
Hello there @Sal, welcome to the forum. I’m so sorry to read of your diagnosis with the JAK2 gene mutation and Essential Thrombocythaemia ('ET')—and after already experiencing cancer! I’m very glad you found us here. I see you’ve been greeted already and had some great responses from other forum members who also understand these very understandable worries about hydroxyurea.
I happen to share these concerns with you and am learning to accept those risks you mentioned about taking daily hydroxyurea, but for Polycythaemia vera ('PV') which is closely related to Essential Thrombocythaemia ('ET') as you likely know. Easier said than done when we’re told we’ll have a greater risk of developing skin cancer!
Something my haematologist tells me to reassure me about hydroxyurea is that it’s been taken for many decades as the main treatment for sickle cell disease and research shows people who’ve taken it over years still have a minimally raised risk of skin cancer. This is good enough for me!
Like @PatriciaBetsy, I’ve also experienced drier skin and hair since diagnosis. New to me, but I have a whole moisturising and suncare routine every day now including using high SPF sun lotion and wearing hats and sunglasses etc. So far so good after 3 years, and living in a sunny region I can tolerate being outdoors without the horrible prickly dry skin I used to feel after starting treatment.
I’d say that I now feel like the worst-case scenario potential side effects from taking hydroxyurea are less bad for me than the risks of untreated Myeloproliferative neoplasms ('MPN'), namely its dangerous clotting and all sorts of blood flow and energy issues.
You’re right that it’s mentally draining, so well put. Take your time with all this I’d say, and don’t forget the Essential Thrombocythaemia ('ET') itself can be tiring, let alone its treatments, and as we know it’s harder to think stuff through clearly when we’re tired.
I think, like @klf1956 says, any kind of diagnosis like the ones we live with can cause worries about the future. If I may share what my haematologist often reminds me, that we are likely to live into normal old age with Myeloproliferative neoplasms ('MPN') like Essential Thrombocythaemia ('ET') and Polycythaemia vera ('PV'), and are likely to pass away from something else unrelated.
If you’d like to talk through your concerns with the lovely Blood Cancer UK specialist nurses, they can be called free on 0808 2080 888.
Do let us know how you’re getting on @Sal.
Hi Kevin thank you for the reply, and Ihope your doing OK. Wow your levels were high! are any side effects worrying you, or causing problems. In my head I just see CHEMO, MAJOR SIDE EFFECTS. I cant get past this so I think live my life, not live on chemo. My results were 700’s for a year, then 940 but dropped to 870 in July. I have an elder son who is supporting me, and a younger one who doesn’t its so hard Kevin if you are unable to chat to family. Sending you my best wishes Sal
Hi Sal, the only significant side effects I’ve had were when I started taking the Hydroxycarbamide. For a couple of months I was so tired I couldn’t be bothered to do anything much. I’m guessing I’ve managed to get used to the medication as I’m now functioning pretty much as normal. I still have an occasional worry about the future but only for a few hours at a time. The only medication I take is hydroxycarbamide, at the moment I’m taking 11 pills per week. How about you?
Funny thing that I’m taking as a win is that I cut myself shaving, only a nick but I bled. I couldn’t believe it, first time I’d cut myself and bled for a good while. Made me smile anyhow.
Please let me know how you are doing, it does help with feeling I’m not alone.
All the best, Kevin.
Hi Kevin, ah thank you for replying, its good to hear you have got used to the medication and don’t seem to be suffering with much else only tiredness. I can associate with that, I’ve still not started the hydroxycarbamide and my platelets were at 870 at the end of July. I do have on and off tingling in my hands and feet. I’m trying my best to help myself by hydrating with water (I can’t stand it 
) but managing 2 litres a day plus tea, I’ve stopped drinking coffee and probably ate an orchard full of cherries as I read somewhere they can help. Sorry to hear about your shaving disaster. You can always keep in touch Kevin, It’s so good to hear from people all going through similar things, you will never be alone. Sal
Hi Sal, how are you feeling? What are your thoughts on Hydroxycarbamide? It’s a difficult decision for sure. In your first post you mentioned 1500mg per day, that does sound a lot. I take at the moment 11 pills per week (500mg each), that’s got my platelets down to the 500s. I’ve got a blood test on Mon 21st and a doctors phone appointment on Wednesday 23rd. I hope you can get some sound advice on your best course of action regarding medication. Have you tried contacting support@bloodcancer.org.uk , maybe give them a try. Thankfully Essential Thrombocythaemia ('ET') isn’t a killer and coming to terms with it is difficult.
I’m looking forward to hearing from you, best wishes, Kevin
Hi I am sorry to her what you are going through and wish you the very best for your future treatments. Jean
Hi Trish I’m just wondering how you are getting on with the Hydroxycarbamide now? how did you get on in the hot weather, could you go in the sun? How many tablets are you on now during the week? sorry to ask all the questions. I’ve still not started the Hydrox" yet and my last bloods were quite high. Best wishes Sal
Hi Jean ah thank you for your best wishes, not nice is it. How are you getting on. Best wishes Sal
Hi Kevin just wondering how your doing, where are you at with your platelets now? I still haven’t started the treatment, I have bloods this week to see where I am at, last ones were 840. Been getting a few headaches, and after a fall I’ve torn something in my hip, which is so bloomin painful it’s over riding everything else at the moment. Obviously on Asprin restricted to pain meds. Anyway hope all is well with you. Best wishes Sal
Hello @Sal I am sorry to read all you are coping with. Just a quick tip. If you want to reply to another forum user put an @ before their name like I have done here and that will ensure they get the message. Thinking of you and sending best wishes. Willow x
Hi @Sal good to hear from you. Bad news about your fall, hip pain can be excruciating. Hopefully it’s nothing long term.
I spoke to haematologist last week, apparently my platelets are still in the 500’s so I’ve been advised to take 2 extra hydroxycarbamide per week. That’s got me on 13 per week which is ok. Doctor doesn’t need to talk to me again until November which I suppose is a good thing. Overall I’m in pretty good shape, started doing some part time work to get me out and about, never hurts to have a few extra pennies these days. I hope you get your hip sorted and look after yourself. Please keep in touch and let me know how you are.
All the best, Kevin.
Hi Sal, I’ve been on Hydroxycarbamide now for 6 months - l’ve been on 500mg on weekdays and 1000mg at weekends for a large part of that time. At my last blood test my platelets had gone backup again to 520 from 469 - I’d had to come off it for 5 days while I had some dental treatment- that might have explained the rise. It was decided to keep me on the same dose and see what my next blood test in a couple of weeks reveals - I’ll let you know. I’m doing okay generally, no alarming new side effects. So far so good! Hope you’re doing ok - best wishes, Trish
@klf1956 Hi Kevin just wondering how you are doing? Did you start your little part time job. How is everything going on the Meds. Heard my bloods went up last week to 1098. Still not started the Hydroxcarbamide, but Consultant want to see me in the morning, I’m still stressing about taking it. Anyway hope you are doing ok. Sal
@PatriciaBetsy Hi Trish thought I would message to see how you are doing and what side effects you are having. Do you get a sore mouth? I’m stressing my bloods were 1098 last week and I have an appointment tomorrow, as I still haven’t started treatment yet. I do hope everything is going well for you. Best wishes Sal
@Duncan Hi Duncan I thought I would catch up on some messages tonight as I am so stressed. I have continued to refuse the hydroxyurea as I just see myself damaging all my other organs, that are perfectly healthy. I had bloods last week at the GP surgery they came back at 1098 I was shocked. I am so fit and healthy except for a 2cm larum tear in my hip that is so painful. I have no tiredness, tingling in my hands and feet, no bruising, headaches or anything else. The only thing wrong is the Platelets with the JAK2. I’ve been asked to see Consultant at Hospital tomorrow and do not know what to do. Just the thought of swallowing poison is stressing me out so much, I’m a 72 year old who thinks she is 40. Will I even have a better life on hydroxurea, or would I be better leaving it. I know you can’t answer this question and really I just feel the need to write something down. I hope you are doing ok. Best wishes Sal