That sounds good @Taz. Write down any questions before you get there so you cover all your queries. I am sure you will feel reassured. Do call us if you need any further support. Kind regards Gemma
Hello @jojax! I too have ET, and was pretty overwhelmed by it all in September last year when I was first given Hydroxicarbamide 500mg x1 daily. I did not take it until the 1st of January this year, and at my last blood test the platelets had gone from 800 (or more as there had been 8 weeks since the previous blood test before I started), and as of two weeks ago, they are now at 560.
I take the HC straight after food. I tried once on an empty stomach, and had an unwanted reaction, so always after food. I also drink 2 litres of water and home made veg/fruit juices. I don’t count coffees. I think that has been very helpful to flush medication through the liver and kidneys, and I have had little in the way of side effects. I was aware of the body adjusting at the beginning, but have no problems now. I have not yet come to the very best time for taking the medication. I have taken it after lunch, and for convenience reasons I swapped to the even ing meal, but I think I am going to move it to breakfast time. My reason is that in the evening I have already had most of my water allowance, and I am finding I sleep extremely heavily. Too heavily. I think in the morning will allow me to have much of the water allowance in the earlier part of the day, and may make it easier not to have to get up in the night to visit the loo.
Probably too much information. But it was all information I wanted when I started!
After my last phone appt, and after only one post HC blood test, my consultant wanted to increase my dose. He may be right, but I was impressed I had come down to 160 over the upper limit of normal platelets, and said I would not consider doing that until after I had retired from teaching singing, in July. I said I needed to be alert, and would like to know what my next blood tests revealed before I said yes. I am not sure my consultant likes discussing such things, which is a pity. However, he may not have much time! But that won’t stop me from wanting to be part of the process.
Meanwhile I walk as much as I can, which is sometimes 4 miles, sometimes very far from that, and sometimes extremely slow, but it feeds my soul, and no doubt has other health benefits. And I sometimes meet friends for coffee outside, locally. That has lots of benefits, especially on a sunny day.
I do hope all goes really smoothly for you. The medical team (who I was meant to have been put in contact with, but who I had to search out, were extremely helpful allaying my fears of side effects initially. I have not had to be in touch except at the beginning of taking the medication, but they assured me there was help if I suffered any side effects, and to get in touch immediately if needed. They were SO nice and reassuring.
I would make some notes - and ask questions at the time
what dose you will start on,
what do they expect to see,
when will your next blood test/appointment be - I would think it would only be about 4 weeks, if they are starting the dose
what number do you phone, if you think you have problems
make sure you are on the immunosuppressed list, and they know you have to have in for antivirals if you get covid - check the procedure for this with them
…and anything else you can think of
Thank you so much that is really helpful. Starting to feel quite nervous now
I find writing everything down as @heatherthomas says is so helpful for me because I get so anxious and nervous before appointments that as soon as I walk through a medical door my mind goes blank @Taz
Please let us know how you get on and look after yourself
Thank you, I have made some notes. Just hope I don’t get too many side effects and I get more energy again🤞. I certainly will keep in touch via the forum.
I’m not very good with fluids but I do eat a lot of fruit, looks like I will have to keep my water bottle topped up and near me. I also love walking and have 2 lurchers that need plenty of exercise, but recently I’ve been struggling, some days I struggle with my breathing, still try to cover the same distance but have to keep stopping. The dogs love it they get to stay out longer.
Hi @Taz I am also a walker and I find it is a good occupation if you are nosey.
I agree some days are so, so much easier than others.
They laugh at my local rec that I should take other peoples dogs for a walk or attach one those industrial lawn mowers to me. One couple call me the Perimeter Lady.
Your dogs sound lovely and probably nearly as big as you. Be kind to yourself.
Hello @Taz - It is so good you have contact numbers at the hospital and that you have found them helpful. I am so grateful to know they are there for me if and when needed. Walking is a mixed bag for me sometimes…sometimes am unbearably slow, but other times absolutely fine. Sometimes I walk in a straight line, and sometimes I think someone behind would think I was drunk! Then with the fluids there sometimes has to be a pit stop! You will find a way with fluids. I sometimes blend whole fruit of different types, sometimes a couple of dates, sometimes cucumber or celery as well and if I don’t want so much of a water day, will add water to that to bring it up to the amount I need, and drink through the day.
Have fun with your Lurchers! I hope your breathing improves as well. All the very best.
Just got back from the hospital, they’ve started me on 500 mg capsule Hydroxycarbamide 1 per day & Allopurinol to help my kidneys for the first 4 weeks. The staff at my local hospital were all very reassuring and helpful.
Unfortunately got home to find that my son has tested positive for covid . He is now confined to his room, he doesn’t seem to mind this too much.
Hi @Taz yes, confining your son (or mine) in his room would have have been seen as a result, your son having Covid means scary times for you though.
Let us know how you get on on your meds and everything else you have going on.
Look after yourself.
Hello Taz i have just caught up on your posts as I have not been on the forum for a bit - glad you have joined us and getting some help as well as a good department at your local hospital. As a first for your son having Covid, its good to know a few friends of mine had a teenager with Covid in the family who duly confined to their room - and no one else in the home got it so that is nice to know that keeping away from the rest of the family til testing negative is a good process! On to your ET - I am an ET patient myself diagnosed 16 years or so ago - I do understand your feelings as those initial days of both diagnosis and then on to treatment are strange ones as you get your head round what is happening - BUT do know there are many on here and the patients forum for MPN Voice that have been on their treatment for decades and all is going well - I had 13 years on Hydroxy and well remember how I felt when I was about to start it all sorts went through my mind and it was also part of my taking on board my diagnosis - BUT I took it for 13 years happily, yes with a few side effects but nothing to “write home about” - the best advice as given above is to keep your water intake good through the day, even if its having a little bottle with you and taking small sips now and then if you are not a great water drinker - because it makes a big difference and I know I really wished in due course when I found that tip out (no access to forums etc for me in those times initially!!) that I know it from the start. Do know as the Hydroxy settles in and starts to work on your platelet levels that you will be feeling better from the symptoms you mention, high platelet levels impact our well being and energy levels and as they start to come into normal lines (which will take a bit of time) you will feel the impact on how you are feeling - so Hydroxy works on two levels in lowering the platelets and keeping you safe along with the benefits that bring physically of feeling more yourself. All MPNs do have their challenges so some things do have to be dealt with and adapted to, but many patients will tell you they live a good life on Hydroxy treatment. Do know too that doses of it will vary - there is no set right dose for treating ET, it is individual to each patient - some take 3 a day some 3 a week both work for that person, both are right. Your team will try you on a dose and tweak up or down as needed - I was on it 13 years and my dose was tweaked up and down continually throughout as they are for many patients, so never worry if it goes up a bit that is very normal Hydroxy treatment and will be totally individual to you. All the best keep us posted how you get on
Thanks for your message, it’s helping hearing so many positive messages from people. Had my first tablet this morning followed by a long dog walk. Feeling positive now, and looking forward to the return of higher energy levels. My son is enjoying the room service, but not feeling so good today, even though he’s bigger than me these days, still hard not being able to see him or give him a hug when he’s ill.
Oh @Taz not being able to give your son a great big mum hug must be so, so hard.
Please keep posting how you are doing and feeling
Look after yourselves
Welcome . Like you I was diagnosed about two years ago with ET. I have been on Asprin ever since. I get tired some times but on the whole still feeling okay. I get my latest blood results on Wednesday . I’m hoping my platelets have not increased.
I recently found a lump on my back and I am at the doctors tomorrow to get it checked , not sure anyone else with ET has had anything like it? I’m a little worried as it’s by my spine . Fingers crossed it’s a fatty lump.
Hi @Macymae123 please let us know how you get on tomorrow and next Wednesday,
Yes, fingers crossed for you, look after yourself
I hope the lump is nothing serious . I don’t have any experience of lumps related to the ET. My platelets were over 1500, when they started me on Hydroxycarbamide, at the end of last month. By that time I was feeling very fatigued all the time and my breathing felt quite bad, they didn’t want to start me on the Hydroxycarbamide too soon due to my age (apparently at 53 (I was 51when originally diagnosed) I am relatively young ) Off to get my bloods checked today and review my dose. Not gonna lie this medication made me feel pretty rough for a few weeks, just starting to feel a bit more like my old self, so hopefully that means the medication is working and my levels are going down. Hope you continue to feel well, keep us posted
Hi @Taz please let us know how you get on today, look after yourself
Hope you are well. I got some positive news yesterday at my appointment, my levels are dropping so the medication is working so happy. The consultant was lovely and shared her Percy Pig sweets with me. However the appointment didn’t go as planned, I arrived, had my bloods done, then settled down with my book to wait for an hour to see the consultant. When it was nearly time to see the consultant a lovely young man came out to inform us that the Hematology department were running an hour late. Normally this would not be a problem, but as I had a 4 hour drive ahead of me, to visit my daughter I panicked a little as this would mean having to stay awake and alert for longer than usual . Anyway I made it and after good night’s sleep I’m feeling refreshed and ready to spend a lovely sunny day in Chichester with my eldest daughter, whilst my youngest daughter auditions for a place on Triple Threat Musical Theatre course at the University of Chichester . So all in all feeling really positive right now
Oh @Taz the boost that you have had from some good news really comes out of your post.
I think that the biggest compliment that you could have had was your consultant sharing their Percy Pig sweets with you, I bet that they would not have done that with everyone.
Anyone expecting my last Rolo would be sadly disappointed, I can tell you !!!
Oh, the never ending awaiting our appointments, yes, I too always have my Kindle with me and refreshments, I have been caught out too often.
I bet you slept well last night and how lovely to spend today with your daughters.
i wish your daughter good luck today going for a place on the Uni course.
Thanks so much for letting us in on your good news and spoil yourself