Hello Everyone this is my first post but l have been reading posts for the past few months.
I have just had my latest blood test results and even though l am on 1500mg of hydroxycarbamide my platelet count has gone up. I have been on treatment since May 2021
Doctors are talking about different treatments. Has anyone had similar results and is there a reason??? Any help would be good, feeling deflated at the moment.
Hello Everyone this is my first post but l have been reading posts for the past few months.
Hello Maureen welcome to this helpful forum. I am an ET patient, I had 13 years on Hydroxy and the last three years on Pegasys interferon. I know it can be disconcerting when platelet levels rise despite treatment BUT do know that that is actually quite normal, platelet levels will rise and fall in “normal” people and they do with our MPN patients too as that is the norm, so many factors effect platelet counts and we are prone to those as anyone is. I imagine your team will keep a check on you as it’s only if things continue to keep rising over time that they may look at different treatment or raising your HU dose. It’s a difficult part of getting used to a MPN that neither blood counts or the dosage of our treatment tends to stay the same, for the odd patient it does but way the majority have a yo-yo over the years of things going up and down and the dose of treatment being continually tweaked to accommodate it - there’s also no right and wrong, or better or worse element of the amount of dose you are given as it’s such an individual thing, really how your individual bone marrow works and also it will change and alter. Some do well on 3 HU capsules a week some like you need 3 a day - I always did have 3 or 4 capsules a day and the dose was tweaked continually over my 13 years on it, all very normal. See what your next appointment brings and let us know. Do join in as well as MPN Voice as they have quite a few patient forums via Zoom and it can really help to chat to others with ET and realise oh actually what is happening to me is what happens to most. Keep us posted. All the best
It is fairly normal for platelet counts to increase.
I was diagnosed with ET in the early 90’s,
my platelet count started at about 750, and gradually increased to over 1000 in 2016, which is when I started on hydroxycarbamide, as they then also considered me “old” - over 60, they wanted my platelet count down to about 350.
I started on 500mg hydroxycarbamide every other day, and over the last few years, once my platelet count goes up to 400-500, for more than 6 months, they up the dose a bit, I am now on 1000 a day.
Platelet counts do rise for other reasons, so that’s why they leave it a bit, before upping the dose. This time, they are doing a lot more blood tests, rather than just platelets, just to rule out anything else.
Also, some consultants seem to want to religiously keep me under 400, but others aren’t to worried until it’s at 500.
Different things work better for different people, there is no “one size fits all”, the fact that your consultants are looking at alternatives is a good thing, it means they are paying attention, and trying to get the best fit for you
Thank you so much you have put my mind at rest. I never knew the platelet count could rise while l was on the medication. l was lead to believe that it would come down possibly slowly and then it would be a matter of maintaining a level of around 400.
Thank you for your reply. I started at 1405 last March so maybe it just takes longer to come down. In November it was 717 and today it was 905. It’s probably not a lot but it came as a shock to me that it can go up! This is still so new to me. I went from never really going to the doctor/hospital to having regular appointments now.
Thanks again so much for both of the replies. It’s great to know there are people out there going through the same thing.
It can go up for lots of reasons, like just having a cold, so an odd spike is not a worry
At the beginning I had monthly appointments, which went to quarterly, once they thought it was just increasing slowly,
When they started me on hydroxycarbamide, I had monthly appointments, until it settled down, I was then on quarterly, but as they’ve just changed my meds, I’m back to monthly.
I think us “old hands” have just got used to it, and forget what a shock it was to begin with - they didn’t even class it as a cancer when I started, they had no idea what caused it, it was a bit more like black magic then,
I would make a list of anything you want to ask, and take it in with you, and also take notes, it’s surprising what goes out of your head, as soon as you leave the room!
Hi @Maureen31 what a good idea to read posts for a while and then when you feel comfortable post. A great big welcome.
You have found how useful the forum can be by @Jilly20 and @heatherthomas helpful, practical responses.
I always think seeing my blood test results in black and white make them so stark and yes, deflated is a good way of putting it.
It is so true that blood test results fluctuate and I always notice my platelets as they are such a big number.
We are always here for you and so is the Blood Cancer UK support line and I look forward to hearing more about you.
Thanks I will. Today’s appointment was over the phone. I didn’t really get a chance to ask anything.
I have a notebook with all my notes l will definitely bring it with me on my next appointment which will be face to face.
Thanks again I really appreciate it.
Thank you Erica, yes l have found the forum really helpful. Ready people’s stories is a great help. This is such a new thing for me. This time last year l knew nothing about my condition or any other blood cancer.
Thank you again.
Hi @Maureen31. You have been given some great information by other forum members and it has really shown the value of the forum and how sharing experiences is invaluable.
I look forward to you being part of the forum.
Hi @Maureen31 my husband was diagnosed with ET in 2007. He is also taking Hydroxycarbamide and his dose also has to be adjusted at times. We also write out any questions we have for the haematologist prior to his appointment and find this helpful. I hope your next appointment goes well.
I regularly check the forum and l will definitely share what happens next.
The forum has been a great help
Thanks Kirsten l think that’s great advice l always have a note book full of questions. It’s just when it’s a phone appointment that only last 5 minutes and the doctor tells you something you weren’t expecting my mind went blank and the questions l had l couldn’t ask. My next appointment is face to face so my note book will come in with me. Take care.
Welcome to forum . I also have ET . When I was diagnosed it was suggested I should go on Medication but after reading all the side affects I decided to opt for an Asprin a day. Nearly two years on I am still on them. I am on the watch and wait list . My last blood results showed my platelets stable at 640. As others have said everyone is different and has different views. It’s so difficult to know what is best. I’m 70 now but I try to watch what I eat and exercise daily. I do hope all goes well for you . Everyone on the forum is so helpful and has been invaluable to me. You are not alone please keep posting. xx
Thank you Maureen. When I was diagnosed in March 2021, my platelet count was mid 500s. My consultant was quite happy it and I was just seen 2 monthly. However in August, I collapsed due to sodium deficiency and spent 5 days in hospital. Since then, my platelets have doubled and I am now on Hydroxycarbamide for4 days weekly and now they have come down 904. I go for this month’'s results tomorrow. My condition is complicated as I was diagnosed with Myelodysplastic syndrome (MDS)/MPN overlap. I felt shocked when my count went so high, but I don’t feel so alone since i read your post. Also all the people who have been on treatment for years have given me so much hope for the future. I really need a knee replacement, but am really worried about the effect, it will have on my blood. Any one able to advise me about the consequences of the operation? Thank you to all contributors.
Thank you for replying to my post.
It’s great to know that l am not alone.
I should definitely have come on the forum earlier. People have been so helpful and kind xx
I started the other way round l had a knee replacement 2015 then developed a DVT had to inject and then tablets for 6 months. I thought that was the end of it.
Due to having Covid l had lots of tests in January 2021. March 2021 platelet count was 1405. (February 2021 they found a lump on my lung which was removed successfully and it was benign thankfully but before the operation my blood consultant spoke to my surgeon about my condition they were fully aware and explained everything to me )
I am on Hydroxy 3 a day everyday My number was going down slowly but surely. Nov it was 717 it’s now 905. I was really shocked. Next appointment they will discuss different treatments.
The forum has been so helpful. I have found it so reassuring that l am not alone. But l still struggle to come to terms with the fact that this is forever.
If you are able please let me know how you get on It’s good news.
We can get through this together
Take care xxxxx
Hi @Maureen31, I am so glad you have messaged on the Forum and experienced all the brilliant advice and support from our members. Not a huge amount too add but I would advise to keep notes of your questions and don’t worry about asking them. There are other treatments that are available and would use our webpages on ET What is essential thrombocythaemia (ET)? | Blood Cancer UK for reference and MPN voice as @Jilly20 mentioned so you are prepared. Do call the Support Services if you need to talk anything else through Blood cancer information and support by phone and email | Blood Cancer UK. Kind regards Gemma
Thanks Maureen, I feel like I have a new friend. Will let you know tomorrow.