I emailed my blood test results to Guys earlier today and had a phone call about an hour later, the person I spoke to (Sue) asked a few questions to clarify the situation and said she would discuss it with the team and get back to me.
Less than an hour after that she called back to say she had discussed my results with Professor Harrison, who has now sent an urgent email to my local haematologist recommending starting me on hydroxy to go with the Momelotinib asap! She said Professor Harrison didn’t want me to wait another month (which my local doctor wanted to do) to see whether the results changed as with such high platelet counts there is a danger of a clot or bleeding. If he hasn’t called me tomorrow I have to let them know.
She went through various symptoms to look out for which I really hope I don’t need or get. It is a bit worrying though!
I am so pleased to be in contact with them, I feel they are much more on the ball there than my local team. I think my local doctor will feel as though his nose has been put out of joint - but I don’t care! It’s my life (literally) that I’m dealing with.
It’s thanks to this forum that I first got in touch with them as I wasn’t happy with the treatment/attitude from my local team. So thank you to everyone who encouraged me and gave me the confidence to do so.
Edited: I got a text from my local haematologist to say there was a prescription for hydroxy waiting for me at the hospital pharmacy and that I’d be having weekly blood tests from now on. Don’t know exactly what Professor Harrison put in her email to my doctor but it’s certainly gee’d him up, as we say in these parts! I’ve been for the prescription and started taking them.
Written by
lizzziep
To view profiles and participate in discussions please or .
I'm so impressed by your MPN expert! My wife now has an MPN expert too! Who keeps in touch with phone calls and emails. The haematologists my wife sees have recently changed, partly for the better, as they did refer her to Christie's Manchester, which her previous haematologist wouldn't, unless he did as a parting present. I had asked that my wife could be considered for Momelotinib in the past, as she is often quite anemic. Not realising that Momelotinib doesn't lower platelets, this was only brought to my notice by EPguy within an answer to your last post I think. The haematologists have never said that it acts in that way, neither has the Christie's hospital, but we have a phone call next week, after she has been on Jakafi for 7 weeks. And hopefully will have ceased hydroxycarbamide by then too! Fingers crossed for you and my wife 🤞🤞
Thank you, her platelets are now normal as are white cells! Only a few months ago platelets were bouncing between 1000 and 4 white cells were up to 80 Hgb has been low. Bleeding was common. We think it may have been Anagrelide! Worse and more often on 3 a day not so often on 2 a day, less, but uncontrollable platelets on 1 tablet a day, even with a little extra hydroxycarbamide! Jakafi is making a world of difference.🥳🥳 As is the knowledge that someone who knows more than a haematologist is looking out for her, besides me🥴!
The reason I contacted Guys was because of the massive jump in platelets, I didn’t want to wait a month to see if they came down, it seems I was right to be concerned. We’re ‘trained’ to accept what doctors say because they know more than us, however a lot of us on here have found that isn’t always true.
Good for you girl!! I am in my 70s and just learning not to accept "things" as I did previously. We know how we feel-it is our bodies and we understand them better than anyone else. Big hugs👍🤞☕
Your info from Guys is probably the best data we can see, that Momelotinib not only doesn't maintain PLT count but lets it rise. This is opposite of the results discussed here
where thrombocytopenia was the platelet reaction of concern.
We learn on the Voice more than many Drs can know. With care by Professor Harrison's team you are in good hands and will get the best options possible.
Thank you EPguy for your input, it makes a world of difference, having you and of course Hunter on this site. Thanks again. We are so often told not to look up Medical things on the internet, that I do wonder why and what the GPs are trying to hide. I've only come up with they are trying to hide their own shortcomings, and lack of knowledge.
I thoroughly encourage looking everything up so you can have an informed discussion. The doctor advises and the patient decides.
Recommending my new book by Dr Robert Lufkin MD called, “Lies I taught in medical School”
It’s a nice accessible précis of the work of countless others trying to bring honesty and integrity back to medicine, the Dr/ Patient relationship and what people can do themselves to improve their own health.
Worth a read if you are beginning on this journey.
Your self-advocacy is being rewarded with the higher quality care that you deserve. You are setting the example of how to effectively manage your own care.
Wishing you all the best and success with the next stage of care.
bravo lizziep- great going!This is such a great forum ; I’m learning a lot but most of all to stand up for myself if I’m confused or need answers. As you say it’s my life and I’m doing my darnedest to keep on making it worthwhile.
Hi lizzziep, , Great outcome! I currently have an issue thrown up by my blood results on an unrelated matter but nobody either GP surgery or Haematology is investigating. This is despite both informing me about it and quizzing me as to how I'm feeling etc like I should be keeling over and it reinforces the fact that if needs be one has to be proactive in taking responsibility in moving ones healthcare forward by whatever means.
In my case I made an appointment with my GP rather than wait until December for my next Haematology appointment which should of been in March 25 but because of this issue it was brought forward.
I 'suggested' to him if he agreed it might be a good idea to get some tests done well in advance of my December appointment so there something to work with. So within two weeks I've had an Ultrasound on my abdomen and further very specific blood tests which will rule things in or out. Of course if you do this you need to be prepared that it might be something you'd rather not know.
So well done you for being proactive by involving Guys and getting a speedy resolution.
that’s wonderful, it’s great you have access (even indirect) to Clair Harrison she is one of the best and yes most local haems listen to her advice, I have direct experience of her influence. I hope Hydroxy keeps the platelets at a level CH is comfortable with 🤞👍
Hi Lizzziep, Good luck with the HU. I have been on HU now for more than a year with absolutely no side-effects. I think the reason for weekly checks (- in my case it was how it worked) - they need to "balance" the HU dose with blood results. They "played around" with doses (weekly) until they were happy with blood result. They then increased times between testing - I am now steady with platelets of 270 and blood test every three months! Hope it helps.
I’ve been on hydroxy previously, before my ET turned to MF, I was on it for about 3 years then developed a reaction to it and got ulcers on my feet, so was changed to Anagrelide. It controlled my platelets well. Hopefully it will combine well with the Momelotinib.
It took me 3 years into my diagnosis of PV to finally realize I needed a MPN specialist and not to feel "guilty" about finding one. My local hematologist is good yet he sees many types of blood cancers and is not able to concentrate on MPNs. Now, when I visit him he jokingly refers to my MPN specialist as the "quarterback" in decisions regarding my treatment. Glad that you followed through in reaching out to them. You deserve the best care, as do all of us affected with these rare diseases! Take care!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
MPN experts invaluable.
