papillary renal kidney cancer

I am 36 years old and have just been diagnosed with papillary renal cancer.  They have told me there are no ongoing trials for this type of cell. I have had my kidney removed and it has spread to my lungs and bones. Can anyone help, does anyone have any information on any trials or any other medication which could help me.

Please help

Lynda

On 12/16/2008 please help urgent wrote:

I am 36 years old and have just been diagnosed with papillary renal cancer.  They have told me there are no ongoing trials for this type of cell. I have had my kidney removed and it has spread to my lungs and bones. Can anyone help, does anyone have any information on any trials or any other medication which could help me.

Please help

 

Lynda

Hi Lynda,

Sorry to hear about this diagnosis. You asked about trials. One of the most promising is a Phase 2 trial of GSK1363089 (Glaxo-Smith-Kline) that is specifically for papillary patients who have not had other treatments except surgery. The reference to this is:

 http://bethesdatrials.cancer.gov/clinical-research/search_de

An article on early results is fourn in ASCO at:

http://gucancers.asco.org/ASCO/Abstracts+&+Virtual+Meeting/Abstracts?&vmview=abst_detail_view&confID=55&abstractID=36179

There is also another message board that specifically addresses kidney cancer, papillary form. If you are interested, you can contact me directly.

Carl

Papillary Type 1, T2N2M0 (Stage 4)

Radical Nephrectomy November 2004 at Duke Medical

On 12/16/2008 please help urgent wrote:

I am 36 years old and have just been diagnosed with papillary renal cancer.  They have told me there are no ongoing trials for this type of cell. I have had my kidney removed and it has spread to my lungs and bones. Can anyone help, does anyone have any information on any trials or any other medication which could help me.

Please help

 

Lynda

Lynda,

The Clinical Trial is being run out of Bethesda but there are other locations if they would be more convenient to your location. I live in NY and am trying to get in the trial at NJ Cancer Institute. Here is a more direct reference to the results of the study thus far.

http://www.exelixis.com/downloads/XL880-201.pdf

And here is the description for the trial along with its locations:

http://clinicaltrials.gov/ct2/show/NCT00726323

Carl

Hi Carl

I Live in England, my consultant has now come back to me with a drug. We will just have to wait and see.

Hope you get yours.

Lynda

Lynda,  that is simply not true.  I am in a clinical trial for Papillary RCC at NIH/NCI in Bethesda (there are trials throughout the country).  The trial is called  XL 880  (now GSK 1363089).  Phase 2.   After 8 weeks I had 50% overall reduction of disease and am still stable after 16 weeks.  

Go to clinicaltrial.gov for more information.   Also, please visit  Acor.org and sign on to the Papillary Kidney Cancer Lisa and also KindeyOnC where you will be in touch with others who have Papillary RCC.  Be sure and read the archives for more information about Papillary RCC.  You will find more information and my story on the Papillary List. 

Debbie S.

Carl, I  saw Lynda's post but as I was unfamilar with this message board I did not see your reply until after I sent her my message.   Thanks for providing her with the links as I have not figure out how to do this....still learning.

best,

debbie s.

I live in England. What is your drug called.  Thay have started me on Tinisul but success rate is not good.

Lynda

On 1/17/2009 please help urgent wrote:

I live in England. What is your drug called.  Thay have started me on Tinisul but success rate is not good.

 

Lynda

Hi Lynda,

The GSK1363089 trial uses that name for the drug while it is on trial. When it is approved, they generally change the name. The drug you are on sounds like Torisel, is that it?

I looked up trial locations for the GSK drug but they are only in the United States, none in UK.

Carl

On 12/16/2008 please help urgent wrote:

I am 36 years old and have just been diagnosed with papillary renal cancer.  They have told me there are no ongoing trials for this type of cell. I have had my kidney removed and it has spread to my lungs and bones. Can anyone help, does anyone have any information on any trials or any other medication which could help me.

Please help

 

Lynda

Linda:

 U have not posted in some time, how are you doing?