Not posted for ages but have been told verbally that Gary has been accepted for Dasatanib at Manchester. Just waiting to see Dr. Lucas again to start the new drugs. Thought I'd let you know as I read that some people had been refused this drug. Garys CML has shown some resistance to Glivec. He started on 400mg 3 years ago and reached CCR withing 6 months but then the counts started to rise. Just over 12 months ago he increased to 600mg but even still, the levels had not dropped 'significantly' although they were dropping.
Hope that this new one gets some better results. Will keep you posted....
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DASATANIB
Hello Rachel
This is indeed good news that Gary has been accepted for Dasatinib. There is a procedure in place for those who are refused Dasatinib and the patients need to make themselves known to CML Support so that they can be helped. Consultants cannot tell us anything about their patients as per patient confidentiality. If you speak to anyone who is having trouble then please direct them to CML Support.
I wish Gary well on his new journey with Dasatinb and hope that this PCR will shoot down.
Do keep us posted and hope you and Gary will join us in Edinburgh on 23rd November at the CML Support social get together. Please let me know so I can add you both to the list.
With very best wishes
Elizabeth
We've just come from Bolton, our local hospital, where we told the haematologist that in 2 weeks, Gary would be transferred to Manchester for treatment with Dasatanib. We explained that eventually, he would be transferred back to Bolton when he had been carefully monitored. We found out today that there is no funding for this drug in Bolton as it is a new generation drug and that we would have to apply to the Bolton PCT for the funding. Our haematologist is going to start the ball rolling but at least we have got onto the 'ladder'. It seems crazy to me! By going to Manchester, we are saving Bolton the costs of 600mg Glivec per day yet when we need to come back to Bolton, they won't be able to fund the treatment. I will keep you all posted as I do enjoy a challenge and look forward to arguing our case with Bolton PCT! RACHEL
Rachel good luck with this.
As Elizabeth says, CML Support can help with an established procedure to support your consultant in trying to get funding if Gary gives permission (patient confidentiality). Could I suggest you Email Elizabeth and Sandy direct about that?
You could also look at the Template Letters to PCTs and your MP that you will find in the box on the right under "May 25". You can adapt them to suit your own circumstances and then send them off if you want to. You will see that the one to the PCT already refers to a situation like Gary's (but 800mg of Glivec, not 600mg, and you can easily change the draft yourself). If you would like to send letters like those but you would like some input from (I drafted the template letters), just let me know by Email and I will be delighted to help as much as I can: david@davidcornes.freeserve.co.uk
Also have a look at Sandy's post below under the heading "NICE News to share" - although Dasatinib approval by NICE is nowhere near certain, the first step in that journey may be happening soon. Let's hope so and then the post code lottery with Dasatinib can be stopped.
David
Hi Rachel,
We are both so pleased that Gary has managed to get Dasatinib which hopefully you will see Gary's PCR improving.
You have been in our thoughts very oftern are you back online at home would love to email again as it has been ages since we spoke. I presume you still have the same email address when you email from your mum's.
Steven is doing well he has just come out of hospital after an operation but will tell you when we speak.
Glad that Gary had been accepted for Dasatinib but this postcode lottery is such an awful thing when people are unwell they need the drugs don't these people who are at the PCT & the NHS pushing their pens round their desks. Steven has written to our MP your turn now Rachel!! The more letters & nagging the better.
Hope you & Gary are coming to Edinburgh it would be lovely to see you.
Sorry to communicate through the forum but if you are back online post here & I wil email you privately at home have an email ready to go to you.
Lots of Love to you both & Jack
Love
Carol & Steven
XXXXX
if you are experiencing problems in getting access to Dasatinib (Sprycel) please email me directly on sandr1ne@aol.com
i will be able to give you some contact information that will help your consultant deal with your PCT.
as David suggests in his post above, it will do no harm for you to write to your MP and i suggest you also contact your local newspaper.
we have managed to get a response from NICE regarding the drug appraisal process and their plans to consider both Dasatinib and Nilotinib (Tasigna) for NICE appraisal. see my post below as David has indicated.
this is a highly political process and we are determined to see it through.
please contact me.
best wishes,
Sandy
THANK YOU FOR YOUR EMAIL REGARDING FUNDING FOR DASATANIB. WE ARE NOT DUE TO SEE THE HAEMO. IN BOLTON UNTIL DECEMBER AS GARYS TREATMENT WILL BE OVERSEEN IN MANCHESTER FOR THE NEAR FUTURE. WHEN WE GO TO BOLTON IN DECEMBER, WE WILL ASK HOW OUR GUY IS GETTING ON WITH BOLTONS PCT REGARDING THE FUNDING OF DASATANIB. I WILL LET YOU KNOW THE OUTCOME OF THIS CONVERSATION ONCE WE'VE HAD IT. THANKS AGAIN FOR YOUR SUPPORT, I'M SURE WE WILL BE IN TOUCH... RACHEL