Torisel side effects

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Torisel side effects

by Jeffs_girl on Fri Apr 03, 2009 12:00 AM

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My husband started Torisel 5 weeks ago and is suffering from multiple side effects.  The most severe is an extreme increase of his creatnine and severe low potassium.  The doctors stopped torisel because he was heading for kidney failure.  When they checked his kidney function it came back low.  Is this reversible once the administration of torisel has stopped?  Does the nausea, fatigue and salty taste go away?  I know it does when the use of sutent is stopped but I am not familiar with torisel.

Please help if you can.

Thank you,

Sandy

RE: Torisel side effects

by on_a_mission on Sat Apr 04, 2009 12:00 AM

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My dad has been on Torisel since Nov.. His biggest complaints have been the bad taste in his mouth which causes him to lose his appetite and the constant needle pricks. Recently he has been dealing with the same issues of potassium and creatnine levels. They have him working with a nutritionalist and both seem to be leveling off again. His kidney function test seem to be improving again. He just heard that Torisel has just been approved in a pill format. Anyone heard that yet?

RE: Torisel side effects

by Jeffs_girl on Sat Apr 04, 2009 12:00 AM

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On 4/4/2009 on a mission wrote:

My dad has been on Torisel since Nov.. His biggest complaints have been the bad taste in his mouth which causes him to lose his appetite and the constant needle pricks. Recently he has been dealing with the same issues of potassium and creatnine levels. They have him working with a nutritionalist and both seem to be leveling off again. His kidney function test seem to be improving again. He just heard that Torisel has just been approved in a pill format. Anyone heard that yet?

I havn't hear about the pill form of torisel but it would be nice for those that can use it.  The doctors took him off of the torisel because he only has the one kidney.  He was admitted to the hospital today because everything is bottoming out and at dangerous levels.  His potassium, sodium and electrolites are at a critical stage.  He has been extremely sick for the past few days and so weak he could barely get in the truck to go to the hospital.  They started IV fluid and giving him potasium right away.  They gave him something for nausea and pain.  He is feeling better tonight.  He has been fighting this beast for 2 years now and it keeps getting larger.  We were just told yesterday that there is nothing else they can do for him.  We will now face what comes our way and pray.

Good luck to your dad and god be with all of you.

 Sandi

RE: Torisel side effects

by Steve_of_Washington on Mon Apr 06, 2009 12:00 AM

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On 4/4/2009 on a mission wrote:

My dad has been on Torisel since Nov.. His biggest complaints have been the bad taste in his mouth which causes him to lose his appetite and the constant needle pricks. Recently he has been dealing with the same issues of potassium and creatnine levels. They have him working with a nutritionalist and both seem to be leveling off again. His kidney function test seem to be improving again. He just heard that Torisel has just been approved in a pill format. Anyone heard that yet?

 

I think the drug your are talking about is Everolius (I may have misspelled it) it has not been approved yet but is expected to be approved in late 2009.  The article I read about it called it Torisel generation two.

I have been on Torisel since October 2009.  I have all of the listed side effects.  An oral surgeon has worked on the bad taste in my mouth.  He put me on Niacin and some other drugs and it has helped both the mouth sores and moderated the bad taste.

My doctors at the University of Washington's Seattle Cancer Care Alliance and my local doctors (I live 90 miles north of Seattle in Bellingham) have been very proactive on the side effects and their treatment has helped.

I pray your father will find cumfort in his walk with cancer.  I have been fighting RCC for 7 years.  I have had 7 surgeries to remove tumors.

Has your father tried the other drugs that are available?

RE: Torisel side effects

by Heather26 on Wed Apr 08, 2009 12:00 AM

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On 4/6/2009 Steve of Washington wrote:

 

On 4/4/2009 on a mission wrote:

My dad has been on Torisel since Nov.. His biggest complaints have been the bad taste in his mouth which causes him to lose his appetite and the constant needle pricks. Recently he has been dealing with the same issues of potassium and creatnine levels. They have him working with a nutritionalist and both seem to be leveling off again. His kidney function test seem to be improving again. He just heard that Torisel has just been approved in a pill format. Anyone heard that yet?

 

I think the drug your are talking about is Everolius (I may have misspelled it) it has not been approved yet but is expected to be approved in late 2009.  The article I read about it called it Torisel generation two.

I have been on Torisel since October 2009.  I have all of the listed side effects.  An oral surgeon has worked on the bad taste in my mouth.  He put me on Niacin and some other drugs and it has helped both the mouth sores and moderated the bad taste.

My doctors at the University of Washington's Seattle Cancer Care Alliance and my local doctors (I live 90 miles north of Seattle in Bellingham) have been very proactive on the side effects and their treatment has helped.

I pray your father will find cumfort in his walk with cancer.  I have been fighting RCC for 7 years.  I have had 7 surgeries to remove tumors.

Has your father tried the other drugs that are available?


 

My father just started torisel 3 weeks ago today.  he has had two infusions and will be having his third today.  My father was diagnosed with Sarcomitiod RCC in may of 2008 he is 55.  He had his right kidney removed half of his left lung and now has METs in his right lung and his brain.  The only thing i can see is that he has some rashes and he complains about not being able to taste anything he eats. His face is puffy but i think that is from the staroids they put him on for his brain METs.  I am going to let them know about your complications so we can be on top of it. My father also has a nutritionist as well.  God bless everyone and keep fighting, we live in a time of hope and they are coming out with new drugs all the time. I dont know if my father is a canidate for the new drug that just came out "Afinitor" because of the sarcomitiod feature. But i hope he is and he will have another option when it comes to it.

RE: Torisel side effects

by OceanSurf on Thu Apr 09, 2009 12:00 AM

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Everolimus was approved by the FDA on March 30, 2009.   It will be marketed in the US under the name "Afinitor"

 http://www.fda.gov/bbs/topics/NEWS/2009/NEW01980.html

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