Finished 3rd line chemo on Aug 15th with good response. At app with oncologist in Sept was suggested I would be suitable for parp inhibitor ruca parib and would decide next appoint. Saw oncol gist last Fri to be informed the drug needed applying for within 8 weeks of receiving last chemo and unfortunately it was now 9 weeks so he said he really Didn,t think I could have the drug. Devasted, it's so unfair I had no control when I had appointment. .
He said even if I didn,t get the drug this time round. It could be applied for after next reoccurence and another line of chem. ANy advice will be great.
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dryden1
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I am afraid this smacks of incompetence to me and I feel you would be well within your rights to insist that your Consultant makes a exceptional circumstance application to the Cancer Drug Fund. When I did some research a little while ago the message was very much that the Consultants are very much the decision makers when deciding who got the drugs. I was told that approval for funding was very much down to how the Consultant completed the application rather than the CDF policing the process.
I would also seriously consider making a formal complaint about what has happened. As you say you had no control over when your next appointment was and it needs investigating why the system has failed you. You may be able to get support with this via the Citizen Advice Bureau. I would also contact the Ovacome Helpline as they may have been involved in similar cases.
Love Juliax
PS I do know that this all very easy for me to say but is a whole different matter to actually do when you are not feeling brilliant. Please do whatever seems right to you and feel free to ignore bossy old me.
I'm so sad and angry for you!! Surely your Oncologist was incompetent to not realise you were going to miss the deadline. Then to talk about having it after your next recurrence and Chemo........ doesn't actually fill you with confidence. I can only sympathise and agree with the suggestions others have made.
Hope you manage to sort something out. Love, Solange 😊
Can totally understand why you are feeling devastated. This definitely sounds like his error. I agree with the other advice and if it were me I’d be making an urgent complaint and ringing Ovacome to get some advice.
Feel so angry that he suggested you'd get it after your next recurrence as if that makes it all ok ! Does he have any idea about what it’s like going through treatment and living with this disease.
Makes me want to scream for you!
Please make a fuss, you deserve to have the best treatment protocol after everything you’ve been through.
That’s awful and it’s incompetent. I’m throwing everything I can at it and following the How to Starve Cancer book by Jane McLelland. I rattle with the protocol suggested but feel well . My onc and GP are relatively open minded (within their restrictions) and you can take it on top of any medicines it seems. The stem cells are starved and die off. And there are a lot of medics on her Facebook page taking it seriously . Many of the supplements and cheap off label drugs are in trials as anticarcinogenic even though their original purpose was for cholesterol, diabetes and headaches! Wishing you the very best,
My old consultant would have filled in the form and put in last weeks date! FFS! This is not a game. Complain...threaten to go to the media...contact your MP! We are all with you because this could be any one of us.... I am furious for you xx
I feel exactly the same as the other ladies on your behalf - it’s totally unacceptable!! Please make a fuss. Get a friend or partner to be your advocate with/for you.
This is totally disgusting your consultant is very incompetent, my consultant completed paperwork after my last chemo the only thing she couldn’t tell me was if it would be Rucaparib or Niraparib at the time. Please put a complaint into PALS.
I’m in the US and don’t know how complaints work but you need to pursue this ASAP. It could make a huge difference to get the PARP now. I hope you can.
This kind of laid back approach really makes me angry. IF some doctors become overbooked or overwhelmed by the amount of patients they have...they should say so and refer you elsewhere. We have a disease where TIME is the enemy. See if you can call the pharma company directly. My last chemo was June 2018 and I didn't go on Nirapib until October. The insurance company approved it which means that the pharma manufacturer says it ok.
It's better to start the treatment late than not at all. PUSH them!
I can't help thinking it's rather disingenuous of him to suggest you could apply after the next round of chemo as he cannot guarantee that you would still have a good response to platinum chemo and so you would be ineligible.
It may be worth asking why the eight-week deadline is there. It may just be because of the statistics the Clinical Drugs Fund is collecting in order to determine cost effectiveness before offering the drug through the NHS and they need everyone participating through the CDF to be more or less on a level playing field for clearer data. In which case I do think your team must pursue this further for you. Although it may be because there is evidence that the Rucaparib doesn't work as a maintenance drug if more than eight weeks have elapsed so it may not be a good idea to have side effects for something that isn't going to work.
I think you are owed some answers. Does Niraparib have the same eight week criteria?
To all you wonderful women who took the time to reply to my post I cannot Thank you enough,for you support empathy and advice. I cannot tell you how supported I have felt. So after telephone conversations and emails to the consultant, I thought I would ring the Ovacome help line and they have been truely,truely magnificent contacting the Chief Medical Officer and the drug company. As far as I can gather the CMOfficer or drug company got in touch with the pharmacy at the hospital where I have been treated, with the result that I got a phone call from the hospital this morning to say I would be starting a parp inhibitor Niraparib a week on Monday. Isn,t that superb.
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