What happens next?

I was diagnosed with ET and JAK2 positive last Wednesday. Because of headaches, migraines etc I was immediately put on to Hydroxycarbamode 1000mg per day. My platelets are only at 460 ish but the JAK2 confirmed I have ET. They’ve been going up for a couple of years but dr didn’t tell me when I have yearly blood tests. I’m awaiting a bone marrow biopsy ASAP and body ct scan. I’m a half glass full kind of person but feel out of my depth with this. Have read loads about it all but just want tests over to find out if it’s worse than thought so I know what I’m dealing with and what comes next.

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Hi there, just wanted to welcome you to the forum. I have myeloma so can’t answer your questions but I am sure someone will be along to help and advise you. How are you feeling about your situation? It’s good to share your thoughts and feelings and you will find a listening ear in this forum.

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Thank you. I have to admit I wasn’t expecting the diagnosis! I’d read a lot after being told platelets we’re going up but thought I’d probably be monitored. The JAK2 + threw me! I’ve just received a letter with appt for abdomen scan in 9 days time. At least things are moving quickly so I should get results sooner. I’m trying to stay as positive as I can but I’m having a few quiet tears here and there.

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I understand the quiet tears, this is probably the worst time for any patient, but once you have a clear idea of the action plan you will start to feel less anxious and more in control. I have always found the anticipation of events worse than the actuality. I cope with my condition by trying to have a good routine, it stops the mind wandering into places I don’t want it to go. I hope you will keep us updated as your treatment progresses, it’s good to talk :+1:

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Thank you again. My husband does not deal with me being ill very well. He just doesn’t know how to react so although I want to remain normal I also have to acknowledge the illness and likely symptoms. Will add to this as it happens. Good luck with yours too.

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Hi Michelle, yes, a very warm welcome to our community forum. Again I cannot help you with the medical side, but what I have found on this site is we all seem to share the same fears, thoughts and feelings. I can remember the shock and fear when I was diagnosed. I felt I was the only person in the world in my situation, I remember feeling so lonely and isolated as if I was going round in a sort of weird bubble and actually wanting to pull the CLL out of me. My mind was just on overdrive with all my fears, thoughts, feelings, what if’s etc. whizzing around. My husband also does not do feelings or know what to do and sort of retreats back into himself just when I want a hug. I have found a few real friends who support me emotionally and also not try to make it better. I am also far more teary since diagnosis and things get just too much sometimes. Your world has been rocked, take lots of care of yourself and have a few treats and please let us know how you are doing, we are the ones that really understand and are here to support you.

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Hi Michelle, I also have et. I was diagnosed in November last year and like you it was a shock at first and I cried a lot the first week or so as my mind was thinking all sorts. I’m only on aspirin at the moment and blood pressure meds but I have been having a lot of symptoms since xmas . Headaches, lightheadedness , joint muscle and bone pain and really bad fatigue. I see my haematologist next week so will be discussing this with him . I know having this condition is scary at first and it’s a worry to think what the future holds but I have been trying to think positive about it all and just be aware of how I’m feeling day to day. If I feel tired or I’m having a bad day pain wise I go have a lie down and try and rest . I do still worry about things especially since I’ve been having these new symptoms but I know I will see my haematologist every three months to be monitored so hopefully if there’s is any changes it will be picked up quickly. I hope your ok and are feeling a bit calmer about things . Just be kind to yourself and take care and if you want to ask me anything about our condition I will try my best to help :slightly_smiling_face:

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Thank you so much. I saw my GPs nurse today for my normal meds review and told her about my diagnosis. I cried. I felt a twit for breaking down but it just happened. It’s difficult as I live in Essex but have been referred to Kent for haematology so the two NHS Trusts don’t speak to each other. Are you also JAK2 positive? I’m having side effects from the chemo already - I have a mouth ulcer starting and the awful metallic taste. Headaches are coming and going now instead of there all the time. Abdomen scan next week and waiting for a date for bmb. Have you had all these tests?

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It’s not silly to cry at all, I still do occasionally when I’m feeling low . Yes I’m jak2 positive too and my platelets were around 597 last time I had bloods done but I’m due to have more blood taken on Wednesday ahead of my haematologist appointment next week to see how they are now. I’ve never had a bmb done my haemo didn’t think it necessary because she said I could be diagnosed with the jak2 mutation alone and will only do one if things change … I’ve never had a scan either but she feels around my abdomen to see if my spleen or liver is enlarged which it isn’t at the moment so that’s good.

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Sorry your having a hard time on the hu . I hope it settles down soon

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I’m high risk apparently as I’ve recently had 4 migraines in 3 days ( before diagnosis) and was taken to A&E. My GP has been treating them but my haematologist thinks they are related plus I’ve had a constant headache for months. Just had brain mri results today which look clear so no sign of a tia. Good luck to you too x

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Hi Michelle, I can’t offer any medical help I’m afraid, but wanted to welcome you to the forum. The early days of diagnosis are such a huge rush of emotions. I hope you get some comfort from this forum that you are not alone in how you are feeling. I hope you don’t have long to wait for a plan, as Alfie says, I think having an action plan really helps. Please be kind to yourself, however you are feeling is perfectly normal and understandable. Wishing you all the best x

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I’ve also been having lots of headaches lately and lightheadedness and have been very tired . My doctor mentioned it could be migraines I’m having and gave me some medication to take at night which hasn’t really taken the headaches away but has dampened them down slightly at night when I take them. I see my haematologist tomorrow, this is only my second appointment since I was diagnosed so I will be mentioning this when I see him

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We await hearing how your appointment goes and I have learnt it is really worth asking all my fears, questions, related symptoms and conditions, thoughts and feelings, the appointment is my time and we are all unique, complex beings. Take care

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Hi Nicola, just checking in to see how you got on at your review.
Best wishes
Alfie

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Hello Nicola, I am having chemotherapy for NHL, I have had a bone marrow biopsy. I have read other people’s opinions but can only tell you my experience. It took about 5 minutes and they offered me gas and air if I felt pain . The nurse explained that sometimes peoples legs move about so to stop that from happening she would lean on my legs. I lay on the bed on my side whilst it happened. The nurse holding my legs was talking to me the whole time and I think it was a good distraction technique as I didn’t need any gas & air. I explained to my husband that it was similar to having a filling at the dentist; uncomfortable for a moment but overall not as bad as I thought .

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Hello @Michelle,

Thank you so much for sharing your experience with migraines and your A&E visit. I wanted touch base with you about how you’ve been feeling since you last posted and any updates you would like to share?

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I’m now 2 months since diagnosis and I can’t praise Darent Valley Hospital in Kent enough! I’ve had ultrasound abdomen, ct liver, bone marrow biopsy (got it at the 3rd attempt!) and blood tests every 2 weeks with follow up from specialist nurse regarding my levels and whether to take more or less Hydroxycarbamide each day. Our NHS is wonderful! I went for blood test today with one more before I see the Consultant again on 24th April. I’ve done a lot of research on the internet and hoping that my bmb looks good so I’ll just take my tablets for life and more or less carry on as normal. I do have some side effects from the meds but I’ll cope with them! Glass half full is my motto.

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Hi Michelle. I am so pleased that you are getting all the scans and tests you require and that you are pleased with the treatment plan at your hospital. I think the NHS tries to do the best it can most of the time, and am another very grateful person, although I also have had my problems. I hope you continue to enjoy life for a long time to come

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Thank you. This is one club no one wants to join and we can’t leave either :joy:. I was told that this is one of the “good” cancers to have so I’ll take that!

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