Please read the house rules and keep this community safe for yourself and others.
Jakavi
I would be really grateful to hear from anyone who has experienced the use of jakavi. My son has terminal lung gvhd and only 18% lung function left. He's just start a last hope clinical trial. I'm beginning to hear success stories with jakavi but the NHS won't fund it anymore, it was just over covid that they would. I need to gather as much information about this drug as possible to campaign to get this funded. Its awful to hear that there could be a drug on the market that could save lukes life and we can't access it. He is only 19!
Comments
Hi there.
I'm sorry to hear about your sons situation which does sound desperate. I haven't heard of Jakavi before so I did a quick google. It sounds like Jakavi is maybe a brand name (?) and its main ingredient is Ruxolitinib Phosphate. I have certainly heard of Ruxolitinib and there are several patients here on the forum who have experience of being treated with it. I'm not sure if that's the same thing or a variant of what your son is being treated with.
Hopefully one of the Anthony Nolan team will pick up on this thread and may be able to give you better guidance than I can but it may be worth searching the threads for Ruxolitinib as that has certainly appeared on the forum before.
I really hope the trial he is starting is succesful and that he can recover.
Regards,
Steve
Hi Su0906,
I'm Rachel, Lead Nurse for Anthony Nolan.
Jakavi or Jakafi (Ruxolitinib) was given rapid approval by NICE at the commencement of the COVID pandemic for use in patients with steroid refractory GvHD. This approval has now ceased and we are working with NHS partners to establish if or when it will be available for use in the the stem cell transplant patient group again but at present we don't have any confirmed time lines.
If you'd like to talk to someone on our helpline please do call us Monday-Friday 9-5 on 0303 303 0303.
Best wishes
Rachel
I also have lung gvhd. But with the Jakafi, i noted mostly positive changes in my skin and 'mobility'. Not sure about my lungs... they come and go. I'm so sorry for your son but don't give up...
I'm very sorry to hear about your son and the frustration must be overwhelming about jakavi. I take it myself but live in Europe. Just a bit of info, I'm lactose intolerant so take lactase with it. A simple enzyme that helps my body digest the jakavi which has lactose in it.
I send you strength and love.
I've had my lungs drained manually with a needle.
Hi. I hope you get success with getting ruxolitinib funded by nhs. I have scleradoma of the skin as a symptom of gvhd. My team recommended that it would help and as they applied for it were told it was withdrawn by nhs. To me from all posts I read especially the Facebook gvhd posts from uk and is it looks like the drug has lots of success from gvhd pint of view. It is surprising the drug has been approved for gvhd in us and Europe just not approved in uk for gvhd.
Ruxolitnib is jakavi. Same thing. It has
Jakavi Has a lot of lactose in it so with my gvhd I take lactase with it to support absorption.
Update - my beautiful son, aged 20, died on the 3rd August 2023 from type 2 respiratory failure due to lung gvhd. We are heart broken.
Hi Su0906,
I am so sorry to hear of your son's death. I am sending you my deepest condolences.
If and when the time feels right, we have some support we can offer you including our Telephone Emotional Support Service. You can email us at patientinfo@anthonynolan.org or call 0303 303 0303 and choose option 3. There is no time frame when it comes to you using these services, don't feel the need to rush yourself.
In the meantime I hope you are supported by your family and loved ones during this most difficult time.
With sympathy
Liam
Hello Su0906,
So very sorry to hear you lost your beautiful boy.
Deepest sympathy to you.
Love
Helen
If there are any pare to that have suffered a loss post bmt, ideally lung gvhd but not exclusive I'd love to.connect.
Hi Su0906,
You'd probably have more luck finding some support if you set up a new thread with appropriate title. Potential support won't read this link.
Night night
Helen
Thanks Helen