Attention all Aussies! What's next when Sutent stops working?

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Attention all Aussies! What's next when Sutent stops working?

by Nettty on Wed Nov 14, 2012 10:25 AM

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Hi All, I'm looking for advice from any Aussies. Sutent has stopped working for my hubby, and we would like to know what drugs you used next. We seem to have such a limited supply compared to our American friends. We are really desperate! He has mets to bone after kidney removal a year ago. Thank you!!

RE: Attention all Aussies! What's next when Sutent stops working?

by PiperPilot on Wed Nov 14, 2012 07:08 PM

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On Nov 14, 2012 10:25 AM Nettty wrote:

Hi All, I'm looking for advice from any Aussies. Sutent has stopped working for my hubby, and we would like to know what drugs you used next. We seem to have such a limited supply compared to our American friends. We are really desperate! He has mets to bone after kidney removal a year ago. Thank you!!

Is he taking either Xgeva (Denosunab) or Zometa (Zoledronic Acid)?  Make sure he is doing at least that.  Essential.

RE: Attention all Aussies! What's next when Sutent stops working?

by Bdsnyder on Thu Nov 15, 2012 02:00 AM

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First of all I am not Australian…. However, there is an Australian company called Bionomics (Web Link; http://www.bionomics.com.au/index.php ) that is conducting clinical trials of a new promising drug called BNC105 or BNC105P. BNC105 is a vascular disrupting agent that shuts down the blood supply to solid tumors. You might want to consider trying to get into this clinical trial. For additional information search the internet for web and news articles. Clinical trials are being held in the following locations in Australia. I hope this helps - BDS. Australia, Queensland Gallipoli Medical Research Foundation: Greenslopes Private Hospital Recruiting Greenslopes, Queensland, Australia, 4120 Contact: Keith Horwood, M.B., B.S. +61 7 3324 0433 Australia, South Australia Ashford Cancer Centre Recruiting Kurralta Park, South Australia, Australia, 5037 Contact: Francis Parnis, M.B., B.S. +61 8 8292 2220 Australia, Tasmania Gallipoli Medical Research Foundation: Launceston General Hospital Recruiting Launceston, Tasmania, Australia, 7250 Contact: Wolfgang Heller, M.D. +61 3 6348 7111

RE: Attention all Aussies! What's next when Sutent stops working?

by YvonneLim on Thu Nov 15, 2012 10:01 AM

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Hi Bdsnyder,

what are the side effects of BNC105P? is it a oral drug? Sutent seemed to stop working for my mom too.. any advice on Votrient?

Yvonne

RE: Attention all Aussies! What's next when Sutent stops working?

by Bdsnyder on Thu Nov 15, 2012 02:57 PM

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As far as side effects BNC105 I am not a medical expert so I really do not have the right to give ANY medical opinion. However, from the YouTube interview videos that I have seen with the CEO of Bionomics - Deborah Rathjen and varies internet articles the drug has less side effects than previous target therapies drugs. BNC105 is an infusion drug and is not a pill. BNC105 has a locking mechanism that once inside the tumor it bocks blood flow to that tumor and the tumor shrinks and dies. I have seen a photograph of a lab mouse with a large tumor that over a 90 day time span the tumor disappears. As I stated before, I have seen interviews with the CEO of Bionomics and she seems very excited about this drug. The company has just filed for a US patent and phase I/II clinical trials are beginning.

 I have been on Votrient/Pazopnib since July 28, 2012. I have had minimal side sides but that’s me. My side effect include White hair (No big deal - It was heading in that direction anyway), change of taste and diarrhea (Not Fun). Since July I have fanatically been going to the gym. I started out slow and build from there. I now workout three to four times a week. My workout includes running three miles on a treadmill. Swimming laps for thirdly minutes and lifting weights (About Hour and a half workout). I believe the exercise controls the fatigue associated with Votrient and may aid in its effectiveness on the drug (My opinion). I just completed my first scans and all but two my tumors have shrunk significantly the two that did not are stable. My doctor told me “Whatever you are doing keep on doing it”. I am a realist I know Votrient is not going to cure me. I am in this for the long haul.       

RE: Attention all Aussies! What's next when Sutent stops working?

by YvonneLim on Fri Nov 16, 2012 08:32 AM

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Thanks for your sharing Bdsnyder.. it is very encouraging to learn abt how you manage.. thanks..

yvonne

RE: Attention all Aussies! What's next when Sutent stops working?

by Nettty on Sun Nov 18, 2012 11:23 AM

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Thank you all for your responses. I will look into any trials I can find. Our oncologist wants to put my hubby onto 75mg Sutent and Zometa! I have no idea how he will go! Fingers crossed! Netty

RE: Attention all Aussies! What's next when Sutent stops working?

by Amarr on Sun Nov 18, 2012 04:32 PM

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Hey, good attitude will help you more than medicines. Try changing your diet to an all plant based diet, take supplements, pray, try some yoga and meditation. All the above seem to help shrink rumors or even make them disappear. My husband was on Votrient with the same side effects you mentioned, but he took it for only 60 days. His dr at MD Anderson (the best in the world) recommended to take it for a limited time. From their experience rumors' shrinkage is significant in the first 60 days and after that nothing major happens. Their concern was that after stopping it the tumor may grow even larger when its receptors

RE: Attention all Aussies! What's next when Sutent stops working?

by Amarr on Sun Nov 18, 2012 04:33 PM

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Good luck! Pls let me know how you are doing. Love and peace!

RE: Attention all Aussies! What's next when Sutent stops working?

by Walking_Jim on Sun Nov 18, 2012 11:46 PM

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Netty

Be careful of Zometa.  I was on it about 4 years ago and then again about 2 years ago, for bone mets.  Both times it was stopped due to ostenecrosis (sp) of the jaw.  Each time the gum tissue and a small amount of jaw bone died, at the site of previous dental work, and fell off.  Jaw eventually healed and is fine today.  My bone mets did not grow.

There is a newer better drug for bone mets called Xgeva.  I have been on it for about 1 and 1/2 years.  Am gradually increasing the time between injections as there is no long term data.  No growth in bone mets.  My understanding is that Xgeva is better for the remaining kidney.

I have been on Sutent since April 2007.  I do not know anyone who has been on 75 mg.  Please keep us informed on symptoms and results.

Good luck

Jim

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