Hi, Im Brenda and new to the forum and was diagnosed with Essential thrombocythemia (ET) in 2020 which was in lockdown. I am JAK2 positive. I was allowed to see the Mcmillan at the hospital but had to go on my own because of Covid restrictions. This was the first I knew it was a blood cancer, so you can imagine how difficult that is to process on your own. However, I was prescribed hydroxycarbamide which has suited me. It took about a year to get the correct dose. I had tingling in my hands, bruises and fatigue. I have managed to stay on the same dose, but the last two blood tests showed an increase in the platelets. Last week I had the hydroxycarbamide increased. The tingling in my hands had returned, so I had an indication that perhaps there was an increase. I do need a knee replacement at some point. Will the platelets need to be at a certain level before this can take place
Hi @26051953 a great big welcome to the forum.
It must have been very difficult for you being diagnosed in lockdown, It sound a very lonely, isolated place to me and it did take a time to process with me.
I have skipped to the end of your post and it would be great if your haematologist and knee replacement surgeon/consultant talked to each other and in my experiences you might have to try and ask for this.
I think that there are other posts about tingling hands here is the link
Does anyone else with ET, on Hydroxycarbamide treatment, have symptoms of Peripheral Neuropathy? - Going through treatment - Blood Cancer UK Online Community Forum
I really look forward to hearing more about you, really look after and be kind to yourself
Hello Brenda, @26051953. I was diagnosed with Essential thrombocythemia (ET), JAK2 positive, in 2021, and began to take Hydroxycarbamide at the begining of 2022. I started off with 1 tablet daily, moving on to 2 extra tablets for the weekends in November 2022 as my platelets were still over the normal range.
They are now within the upper reaches of normal, and have veered between 318 and 388 over the past year.
In 2023 I had breast cancer which had to be treated with a right side mastectomy. I ended up going into theatre twice on the one day because I bled too much. As one of the consultants said, āYour blood clots differently!ā I did tell the consultants about my condition every time I saw them, to make sure they were aware, but I would now, if I needed further surgery, ask to be actually SEEN by the Haematologist Consultant so I could talk it all through. The team operating on me were in touch with the Haematologist during surgery, which was good to know, but I would like to feel I was part of the decision making as well, and feel supported. As an aside, my platelet levels were at their lowest immediately after surgery! But I guess that was a drastic way to lower them. My levels do go up and down. If your platelet levels are above normal there will probably be a risk of clotting so your consultant may like the numbers to be in the normal range. Do ask your consultant all the questions you would like answers to, especially regarding all you can do to prevent clotting post surgery, including keeping hydrated, doing all required post op exercises.
I have had to learn to be more assertive in regard to getting questions answered. @Erica gave me good advice re making a list of all possible questions, and to stand my ground, although she may not have put it so strongly!!
All the best on your journey. I have found this forum very helpful, and I hope you find so as well.
Thank you for the welcome. Your comments have been most helpful
Yes, @Modesigns and @26051953 my GP gave me some advice when I was first diagnosed and told me to take responsibility for my conditions. I always remind all medical departments, dentist, opticians etc.
When I gad multiple teeth out my consultant, GP and dentist all worked together with antibiotics, bleeding etc.
A right side mastectomy is a big thing to go through medically and emotionally @Modesigns
I also had to learn to be āpleasantly assertiveā @26051953 and to write down my fears, questions and practicalities before appointments
Really look after yourselves
If itās helpful and I have found it to be as I donāt like confrontation but this gave me confidence to state my preferences
The NHS has a constitution and section 4 isā¦
- The patient will be at the heart of everything the NHS does
It should support individuals to promote and manage their own health. NHS services must reflect, and should be coordinated around and tailored to, the needs and preferences of patients, their families and their carers. As part of this, the NHS will ensure that in line with the Armed Forces Covenant, those in the armed forces, reservists, their families and veterans are not disadvantaged in accessing health services in the area they reside. Patients, with their families and carers, where appropriate, will be involved in and consulted on all decisions about their care and treatment. The NHS will actively encourage feedback from the public, patients and staff, welcome it and use it to improve its services