And breathe ……… I had blood taken yesterday and this morning I’ve had a message to say my platelets have dropped from over 1000 to 698, so very relieved at that. Plus my haemoglobin has come up to 109, first time it’s been over 100 for years!
So the Momelotinib and Hydroxy are working, I haven’t got any other numbers, unless it’s a face to face appointment it’s impossible to get a full result. It’s like it’s all a secret with the hospital.
Having the bloods repeated next week, when I presume there may be adjustments to the dosage depending what the results are.
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lizzziep
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Great news that you're getting the platelet numbers down, it's a pity you can't get away without having hydroxycarbamide though. My wife hopefully took her last hydroxycarbamide a week ago today, after weaning herself off them once the Jakafi started to take effect. She's been on Jakafi for 7 and a half weeks and reduced her Hydroxycarbamide over the past four weeks. Her platelets are 267 white cells 9.9 hematocrit 0.32 Hgb 101 which is a loss of 5 since last week.Its a shame her Hgb drops but the professor reckons there maybe a trick to play yet, firstly reducing the Jakafi by 5mg a day, next could well be your favourite, epo! Strangely I was asking her renal specialist about her having epo a year ago!
I’m hoping I don’t have to stay on hydroxy, when I was on it for ET I was fine for 3 years then developed horrible painful ulcers on my feet, which didn’t heal until I came off hydroxy. I was ok on Jakafi apart from my anaemia got worse and weight gain. All the drugs have side effects, I’m waiting for one which cures my arthritic knees and makes me look 30 years younger! Well I can dream can’t I? Hope your wife manages without the EPO, although you get used to jabbing yourself.
I hope you had your uric acid monitored whilst on hydroxycarbamide, as hydroxycarbamide can be responsible for an increase in uric acid which in turn can cause gout ulcers! Which don't really heal until the gout is healed, by removing the cause ( hydroxycarbamide). Allopurinol is what my wife was put on to reduce the uric acid. If you are restarting hydroxycarbamide ask for allopurinol too.
My wife has had two ferinject and two units of red cells in the past three weeks.
Haematology constantly denied it was the hydroxy, I eventually saw a dermatologist who said I don’t even need to look it’s the hydroxy, it’s a well known side effect. So I was changed to Anagrelide.
Please be careful with Anagrelide, it's not as safe as it's often made out to be. A good read nejm.org/doi/full/10.1056/N... written by Clare Harrison and points to Anagrelide not being as safe as hydroxycarbamide. It also states it can bring on MF.
As my wife has MF and was on Anagrelide and suffered from massive bleeds, which did reduce as her Anagrelide dose was reduced. But it really took me to point out that it probably was Anagrelide that might be to blame, and nearly six bloody years of only seeing a hematologist. Since seeing a different hematologist and MPN consultant at another hospital she is now free of Anagrelide and hydroxycarbamide.
I was on it for a few years but was changed when I progressed from ET to MF. I had palpitations when I first went on it but they settled down eventually. All the drugs seem to have bad side effects.
Go Lizziep! Excellent first results. Very happy you have success news to share. Agree your hospital test secrecy is outrageous. It should be given to you completely without hesitation. Hoping that happens next week. Have fun celebrating this week!
Ah I’m glad you mentioned which hospital you are under. After my consultation there I was amazed at how I could access every result from the app they have. I found it brilliant after having to threaten and cajole my local haematologist for even the simplest of blood test figures. So I would suggest if they haven’t told you about their (Guys) app then give them a call. Everything is on it and all beautifully categorised. Great to hear the good news.
You are legally entitled to all your test results. If they are not respecting your wishes, contact your hospital PALs who will be more than happy to help you with getting whatever notes you want.
Unfortunately my local hospital doesn’t have a patient portal system! Guys have My Chart which is great, I’m lucky if I get copy of the letters sent to the GP from haematology. On a face to face consultation I take a photo of the doctors computer screen, I used to ask him to print a copy but now he just says his printer isn’t working!
I’m afraid that’s the state of many (although not all) of our NHS hospitals. Many doctors don’t seek to want patients to have the full facts about their illnesses. Others are very cooperative.
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