I’ve had the call from Guys I should have had 2 weeks ago. Apparently there was “miscommunication”, I did email Professor Harrison to see what was happening.
The doctor I spoke to was very nice and explained that the trial is for people on Rux but suffering from anaemia. Also said changing to Momolitinib was a possibility.
Attached is a photo of the letter sent to my GP after the conversation, I’m presuming it was sent to my haematologist as well as it starts with his name but is not addressed to the hospital - I will check though.
I started the Rux a week ago.
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lizzziep
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We are wishing you luck with your treatment, I just heard that Momelotinib hasn't been licensed by NICE, by my wife's consultant, and if she was seen by Guy's they wouldn't put her on a trial using Momelotinib as she hasn't a spleen anymore. So looks likely she will be offered injectable interferon at her appointment tomorrow.
Yes I know what you mean, seeing my local Heam tomorrow for next choice meds.I havent heard anything yet on my second opinion from Guys , so will be asking her to chase this .Glad to hear your doing well, have a great Christmas
Hi, just a question, was your local haematologist able to do the referral directly, mine has refused due to "hospital policy" and advised that I go to my GP for a referral/second opinion? Seems madness to be going back and forth like this, I have an appointment with the haematologist in January and think this should be coming from him! Thanks.
He did say he’d sent a letter, but they never received it. He was unwilling to send another! So I asked my GP, he was more than willing and did it immediately, via email.
See how your counts go with Rux. If the anemia continues to be a significant factor then a switch to Ojjaara (Momelotinib) may be implicated. It is now being approved somewhat more routinely, at least here in the USA, and is helpful with anemia.
Rux, imo, is generally not efficacious with persistent anemia presenting or worsening. The good news: you can stop Rux one day and start taking Ojjaara the next with no downtime. Also, Rux is usually dosed for twice daily; if taking Ojjaara at 200mg it’s dosed for once daily.
Obviously, you’ll want to have another discussion with your consultant and seek counsel but do watch your labs carefully and advocate for yourself if need be, of course. Best of luck.
Thank you. I usually ask for a copy of the results if it’s a face to face appointment but can’t get a copy if it’s a telephone appointment! Don’t know why, even I can do a screenshot and email it! However the doctor from Guys will now be getting a copy of my results and she said she will review them to see if I need a change of drug.
It’s good to hear you are feeling better after the consult, you should be able to get a copy of your results after a telephone consult, I suspect your GP will automatically get a copy , they could print and give to you or post, I am sure you are legally entitled to a copy, maybe time to select the persistent gear again 😀
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Low saturation with PV and Jakavi 20
Finally had BMB. Now diagnosed with MF, should I go on a trial and other questions!
Called back to consultation 
Finally got Ruxolinitib
Update after guys app
