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cdjr
Posts: 10
Joined: Apr 2013

Hi - I have previously posted about my brother, we are in the UK and his sutent appears to have stopped working (had done very well on it  for a year).  We are seeing his consultant on Wednesday to discuss next steps, and it would appear this is likely to be enverolimus.  He had radical surgery, removal of kidney and massive tumour,  under one year later nodules appeared on his lungs, these were greatly reduced and under control with sutent but now needs an alternative drug to try and do the same job.  At the moment contained in the lungs with no spread.

I have had really helpful and supportive input on this site from people re enverolimus, I guess my comment would be - I dont know what I dont know about what is out there.  Here in the UK the treatment available stops with sutent.  with our health system if sutent stops working, that is it! - our equivalent of your FDA has decided the other options are just too expensive.  However, we are fortunate to have private health insurance and he can gain acces to next line treatment.

If money were no object (which of course it is, but let's pretend for a second), is there any evidence of a drug or combination of drugs we should be pushing for, or does enverolimus seem like the best next step?

Want to go armed with lots of questions for the consultant on Wednesday and you guys in the US on this forum really seem to know your onions! (British saying!!)

Thanks

 

CJ

 

 

 

Texas_wedge's picture
Texas_wedge
Posts: 2807
Joined: Nov 2011

Whereabouts in the UK are you?  Can you not get Votrient? Everolimus is a standard second-line choice but some experts believe that if someone has done well on a VEGF drug they would be better trying another VEGF drug than switch to an mTOR one - a question that may be worth raising?

It has to be worth finding out if your Brother might qualify for HD IL2 treatment under Prof. Robert Hawkins at The Christie Hospital in Manchester.

You should also ask about clinical trials such as the one with Everolimus v nivolumab at The Royal Marsden in London - if there's any chance of his getting a go at nivolumab I would take it like a shot.

More generally, don't get too despondent - the other day, in The House, the PM made a particular mention of the Cancer Drugs Fund (in a wrangle about the successes of the parties with the NHS and a comparison of the Coalition with Labour control of NHS in Wales) so perhaps the news on that front won't be as bad as was feared south of The Border?

I gather there's a bit of a post-code lottery in the south of the UK. The best informed person is Rose Woodward who, with Julia Black, set up and maintains the KCSN (Kidney Cancer Support Network).  Rose lives in Cornwall and is a mine of information.

 

cdjr
Posts: 10
Joined: Apr 2013

Hi,

 

thank you so much for your response, I cannot tell you how helpful that advice is.  Just knowing the names of these drugs enables me to reserch them and for us to have an informed discussion with his consultant next week. My brother is based in London and is under the care of Simon Chowdhury, who is a highly regarded kidney cancer specialist in the UK. he is incredibly approachable and unlike many doctors is very happy to have debates and discussions about possible treatment options.  He is happy to do this via email, so with your incredibly helpful reply I can set about asking him about all of these options so he can have considered these before we arrive for the appointment on Wednesday.

 

Your general point about the post code lottery is correct, although NICE has refused to approve these drugs to be available as a routine second line drug, as I understand it, each local health area has the discretion to decide to fund these treatments.  So, as you say, if you live in one area of London you would be able to obtain it but if you live in the next street and happen to come under a different health authority you might not. 

Unfortunately our father is also undergoing combined chemo and radiotherapy treatment for bladder cancer at the moment and he is being treated at the Royal Marsden so I have got to know them very well, I will ask them about the trial you mention.

 

once again, thank you so much for taking the time to respond, as I said in my post - I dont know what I dont know so wouldnt know what questions to ask the consultant - I do now! thank you, I will post how we get on next week.

 

Best wishes

 

CJ

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