Hello, I hope someone can help me or give the benefit of your advice, My Wife sadly passed away on 20th November last year. She had been diagnosed with Stage 4 Metastatic Secondary Breast Cancer in 2015 which had spread to both kidneys and her right lung. Progression had been gradual but slow so it was a real shock that she suffered a rapid decline in health which led to her death. We actually had a scheduled appointment with her Oncologist on 4th November to discuss further treatment options. Her Oncologist had proposed the use of Palpociclib in conjunction with Fulverstrant but his IFR application for the Palpo had been refused on the grounds of previous "exposure" to Everolimus. Has anyone else had a similar experience ? For the benefit of those who follow I am seeking to challenge what I see as a cruel and illogical decision making process. Many Thanks.
Hi Fortune8,
I'm so sorry to hear of the passing of your wife. I cannot begin to understand how painful this must be for you, or how angry you must feel.
The sad fact is that the NHS is underfunded, and many cancer drugs are expensive, and/or don't work very well in some circumstances.
I found a few publications that may help you to understand the decision that was taken. They show that it probably wouldn't have helped:
https://pubmed.ncbi.nlm.nih.gov/29778787/
https://pubmed.ncbi.nlm.nih.gov/29247442/
With the list price of 21 tablets of Palbociclib being £2950, NHS managers (sadly) have to make decisions based on cost vs. reward. I think in this case they decided that approving the drugs simply wouldn't have helped your wife.
I hope this information is at least helpful for you as a starting point.
My condolences,
Andy
Hello Andy thank you for taking the time to reply. This is quite a complex matter. My Wife's treatment with Everolimus was actually having positive results even though she was only taking it for a relatively short period. it was the side effects that she found difficult to cope with (which we were convinced were caused by the Exemestane not the Everolimus). Her oncologist had identified the Palbo/Fulverstrant combo as an alternative for which he expected positive benefits but his IFR funding application was declined. We were exploring the possibility of NHS top-up funding when sadly events overtook us, Even at full cost we were fortunate in being able to fund this treatment for several years (without selling the house).The IFR application did not get past the pre-screening panel and I think that their decision was flawed which is why I am still pursuing this with them - obviously this cannot benefit my late wife but it may help others in the future. Thanks again.
Kind Regards
Nev
Hi Nev,
I think you're absolutely right in continuing to pursue the issue.
If they were happy to continue prescribing everolimus, which is also an expensive drug, I can't see why they'd refuse a switch to palbociclib given its similar price point. Especially as the oncologist believed there would be clinical benefit.
Best of luck, and my condolences again,
Andy
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