Had a call from Guys

[lizzziep]

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.

[hunter5582]

It sounds like the appointment went well. Glad to hear that you persisted in getting your needs addressed. Wishing you all the best moving forward.

[jointpain]

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.

[Spanelmad]

So how are you feeling now?

[lizzziep]

A lot happier. The doctor was very nice and explained things very well, which seems to be a problem for my local haematologist!

[Spanelmad]

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

..

[lizzziep in reply to Spanelmad]

They don’t seem to receive letters! I finally got my second opinion by asking GP to email, he did so Friday afternoon, Guys emailed me Monday morning!

[Spanelmad in reply to lizzziep]

Thanks for the heads up😁

[Spanelmad in reply to lizzziep]

Hi LizzziepProblem solved no referral done apparently 'they ' needed to see me face to face first!

Referral now going through today as they now know I want to have joint care

[Tyce500 in reply to Spanelmad]

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.

[lizzziep in reply to Tyce500]

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.

[Spanelmad in reply to Tyce500]

Hospital is doing the referral now (see above) but GP has said he was happy to do it if there was no joy.

[Tyce500 in reply to Spanelmad]

Excellent, thank you!

[lizzziep in reply to Spanelmad]

Good!

[mhos61]

Glad to hear you’re getting the right care now. And a huge well done for advocating so well to make this happen. X

[lizzziep in reply to mhos61]

Thank you, I’d never have done so without this site!

[rcan_sMF]

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.

[lizzziep in reply to rcan_sMF]

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.

[ainslie in reply to lizzziep]

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 😀