Hi, I’m new here. Recently diagnose with ET - -JAK2, and 4 weeks into a low dose of a daily tablet, I haven’t really been told what the plan is apart from take a tablet and have a blood test every 2 weeks for 8 weeks, had my second one this morning. My platelets were 733. I also have Crohns and no spleen so wondered if anyone could enlighten me a to what might happen going forward? When I attended my appointment I felt it was really impersonal and was given a book and some notes about medication and don’t feel like I can ask questions.
Hi @KT1609 a great big welcome and it sounds as if a lot has happened rather quickly to you.
I would be in shock.
It would be very difficult to tell you what will happen in your case as we are all special unique beings with individual medical histories as you have shown with you not having a spleen and having Crohns disease.
However as you have said you are 4 weeks into a low daily dose tablet and having a blood test every say 2 weeks for 8 weeks.
Personally, I am not medically trained, I would say that that is your plan and it a regime called ‘watch and wait’ or ‘active monitoring’ where you are tested every 2 weeks to see how different tests vary and how the treatment regime is working.
Sometimes things might not be explained very clearly.
I have learnt over the years to write down all the questions I want to ask and to sit there until I have asked all my questions and got responses I can understand.
You might want to look at the Blood Cancer UK website.
I attach a couple of links for you: Blood cancer types explained | Blood Cancer UK Watch and wait | Blood Cancer UK
You can also ring the Blood Cancer UK support line if you would like to talk to someone on 0808 2080 888.
The main thing is that you are very kind to yourself, we often say that the emotional side is as bad as the medical side and please keep posting how you get on.
Hi @KT1609 and a big welcome to the forum. I can see @Erica has given some good advice and links to information that may be useful.
I have a different blood cancer but hope others will be able to share their experiences with you.
Always a good idea to write down all of your questions for your next appointment and the helpline is there if you want to talk anything through.
Please keep us updated on how you are doing😊
Hi @KT1609
Welcome to the forum, I hope you find the support and information from others helpful and reassuring.
I am one of the nurses working in the support services team and just wanted to let you know you can call our support line to discuss your diagnosis, treatments, or just talk about how you’re feeling.
Getting a blood cancer diagnosis can big a huge shock and I am sure once you got home with your booklet and tablets the questions then come flooding in! I’m sorry to hear your appointment was impersonal and you felt you couldn’t ask questions. Were you offered any time with a specialist nurse to talk things through? Please do ask for a keyworker/support worker/clinical nurse specialist next time you have an appointment.
Usually when a new diagnosis of ET is given there is a plan for that patient, but sometimes this isn’t verbalised. Do you receive the letters from you appointments that go to your GP, you could ask to be sent these, if you don’t get them.
ET is a chronic disorder that is managed with medication (most commonly Hydroxycarbomide), you will always have ET, currently there is no cure. You’ll be on some type of medication long term. At the moment your 2 weekly blood tests are to find the correct dose of medication, whilst bringing down the platelet count but not affecting the red blood cells and white blood cells too much. So over the next few weeks, you may be asked to take more or fewer tablets per week, depending on your blood counts. Eventually, once your body is used to the drug, your blood counts will settle and you’ll likely stay on that final dose. You won’t always be having fortnightly bloods either, once your blood counts settle, you may only need to have blood tests taken every 3 - 4 months.
As the others has said above, please do write down all the questions you have, and if you tell the Doctor/Haematologist at the start of the appointment you have some questions for them, they should make time to go through these with you.
Please get in touch with our support services team if you feel it would be helpful, 0808 2080 888 we’re always happy to help.
Take care, Heidi.