Anyone With Rccchromophobe On Sutent

Anyone know that they have been diagnosed with Chromophobe RCC (a sub type) and are currently on Sutent?  Or have been on other Multi-kinase inhibitors (MKI)

 We are in Canada and have just been turned down to access Sutent for Chromophobe subtype as most documented trial results are for the subtype clear cell, the most common.

Any info would be great.

Thanks,

Emma's Mom

Emma's Mom

I believe that Chromophobe is the same as Papillary RCC. Which my husband is diagnosed with.  His Dr. said that sutent had not been tested on this type of RCC so but him on Torisel. He has only had  3 doses so far ,so no tests yet to see if working.

I think I read somewhere there is a clinical trial to see if sutent will work on papillary RCC

Lesley

Hi Lesley,

Thanks for responding, I would like to hear how your husbands results unfold and all the best to both of you through this challenging time.

The latest research shows Chromophobe is not the same subtype as Papillary RCC.  Unfrotunately, what seems to happen in most of the research and trials Clear cell, which is the most prodominant subtype, is tested most and then generally the other less predominant subtypes get grouped together.  It also seems that earlier research identifies the two as the same, however, the most recent research now separates them.  You almost need to have a medical background to wade through all the information and try and digest it, so I am concentrating on the newest research publications.

Being an advocate for someone with Rcc is never easy.

All the best,

Emma's Mom

On 10/6/2007 Emma's Mom wrote:

Hi Lesley,

Thanks for responding, I would like to hear how your husbands results unfold and all the best to both of you through this challenging time.

The latest research shows Chromophobe is not the same subtype as Papillary RCC.  Unfrotunately, what seems to happen in most of the research and trials Clear cell, which is the most prodominant subtype, is tested most and then generally the other less predominant subtypes get grouped together.  It also seems that earlier research identifies the two as the same, however, the most recent research now separates them.  You almost need to have a medical background to wade through all the information and try and digest it, so I am concentrating on the newest research publications.

Being an advocate for someone with Rcc is never easy.

All the best,

Emma's Mom

There was a study at the ASCO May 2007 conference by Dr. Plantade.  The data suggested sutent works the same way in chromophobe as it does in clear cell, but that it does not work in papillary.  It was a small cohort, but there was some response nevertheless.

You can read it at www.asco.org