Ruxolitinib - patient & family/carer questionnaires

[Mazcd]

We need your help and feedback to support an application to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib (Jakavi) to patients living in Scotland

Ruxolitinib (Jakavi) as a treatment for disease related splenomegaly (enlarged spleen) or symptoms in adults with primary myelofibrosis, or myelofibrosis secondary to polycythaemia vera or essential thrombocythaemia has significantly improved the lives of patients affected by myelofibrosis and in many cases this improvement is dramatic with long lasting tangible benefits. There is now increasing evidence that Ruxolitinib therapy also prolongs survival in this difficult disease where we have previously had very limited options.

Ruxolitinib is currently available to patients in England, via the NHS, if they are enrolled on the MAJIC trial or via the Cancer Drug Fund. Scotland, N Ireland and Wales follow a different route for prescribing Ruxolitinib.

MPN Voice, with the help of Dr Mira Farquharson and Prof Claire Harrison, are co-ordinating a submission on behalf of MPN patients to the Scottish Medicines Consortium (SMC) for the prescribing of Ruxolitinib to patients living in Scotland. If you are taking Ruxolitinib the team would like you to complete a questionnaire to gather information on the effects/changes that taking Ruxolitinib has made to you in your day to day life. We would also like your family members/carers to complete a questionnaire which will provide information for the submission on the changes they have seen since you started taking Ruxolitinib and the affect this has had on them.

Please use the links below to download the questionnaires, all completed questionnaires must be returned by 18th July 2014, you can email them to [e-mail] or by post to the address on the top of the questionnaire. If you are unable to download or print the questionnaires we can email or post copies to you, email us at [e-mail] and please include your full postal address if you require a copy to be posted to you.

We would like to thank you for your participation in this survey.

Patient questionnaire - mpdvoice.org.uk/wp-content/...

Family/carer questionnaire - mpdvoice.org.uk/wp-content/...

[Twinkly]

My answers are in the post today ( Friday) , I downloaded the forms ,filled in the answers then put them in the post ,, maz , I hope this drug becomes available to those who want to try it on the NHS . I'm so lucky it suits me so well .my results in clinic have been excellent ,for the past months ,I think it surprises my team at times ,I'm no spring chicken ,but I am free range and organic ,thro and thro ......

[bernie62]

Hi maz,

its a while since i have been on our site, I have been realy un well. It started when my spleen grew to 22ctm, my Heamo was going to take me of Ruxo. As it seemed not to be working any more, they arranged for me to have a new b,m biop, But as we all know this all takes time, as was waiting i started with bad head aches, they got so bad i had to go to Hospital.

I showed them the leaflet you get with my Ruxo. Near the end of the leaflet, the warnings,

it clearly says these tablets can cause shingles, but because there was no rash they give me some painkillers, and sent me home. two days later i had to go back. I was rushed in and it was comfirmed i had shingles. The pain was so bad, I was in for four days. I could not eat the food,the sight and smell of it just made me sick. so i came home. after being checked by the doctors, I had an appointment aweek later to see my Heamo, my sleen had gone down a bit.

so the put the b,m,biop, dates back,to see how it goes, till my next appointment. he put me down to go to the pain clinic for my shingles, has the pain is still very bad,this was four weeks ago and I am still waiting, and the pain goes on.

Bernie62.

[Mazcd Partner MPNVoice in reply to bernie62]

Hi Bernie, oh my goodness, I am so sorry to hear that you have been so unwell, what a horrible time you have been having, I do know that shingles can be very painful so you have my every sympathy, I hope that they can sort something out for you at the pain clinic. Also sorry to hear about your spleen growing, let me know how you get on. You will have to get back onto the doctor about the appointment for the pain clinic, get them to chase it up for you. Best wishes, Maz. x x

[bernie62 in reply to Mazcd]

Thank you Maz. will my post go out to all, on our site, i would like it to.

[Mazcd Partner MPNVoice in reply to bernie62]

Hi Bernie, yes it will. Maz

[bernie62 in reply to Mazcd]

Thank you.xx