Brother On Sutent

Has anyone heard of being on the clinical trial with Sutent but never going off of it?  I have researched on the internet and only seen where people are for example on it for 4 weeks and then off for 2 weeks.  I just found out that my brother will never go off of it.  I am very concerned.  I was getting excited that his 2 weeks off would be here next week only to find out that is not the case.  How can his side affects ever get a break?  Please let me know if you are aware of this or please send me any info you may have.  Thank you.

 

Pam in Dallas

Pam,

 Clinical trials are designed to search for improved outcomes by either utilizing a new drug, or using an old drug in a different dose regimen, or perhaps in some different combination with other medications.  It sounds like your brother is in such a trial designed to see if taking Sutent every day is more effective at controlling renal cell cancer than the current on and off regimen.

 I am on Nexavar in combination with an investigational drug.  The pairing certainly has undesirable side-effects, but I have decided that the side-effects are tolerable enough to fight thru with hopes of achieving a better outcome than my disease stage (IV) normally experiences.  I live with a chronically altered voice (quite significant) and hand-foot reaction with variable amounts of fatigue.  Your brother may need to make such a choice at some point as well, depending on his tolerance of the side effects.

 Good luck to your brother!

Thank you for your reply.  My brother had a kidney removed about 10 years ago. He now has lung cancer, pancreas cancer and a mass in his buttox.

 I too have renal cell.I had my l/kidney removed in 2002. The cancer has since moved to both my lungs and to my brain. I had the brain tumor removed in 2005. I still have lung cancer and have been on Sutent for  1 1/2 years. I started with 50 mg. but because the side effects were so rough my Oncologist reduced it to 37.5 mg.Most of the side effects have gone away and my lungs have shown much improvement. The tumors are shrinking. The most pain I suffer now is from my feet swelling. I hope your brother is well and improving.

 

On 10/12/2007 Praz_2_him wrote:

 I too have renal cell.I had my l/kidney removed in 2002. The cancer has since moved to both my lungs and to my brain. I had the brain tumor removed in 2005. I still have lung cancer and have been on Sutent for  1 1/2 years. I started with 50 mg. but because the side effects were so rough my Oncologist reduced it to 37.5 mg.Most of the side effects have gone away and my lungs have shown much improvement. The tumors are shrinking. The most pain I suffer now is from my feet swelling. I hope your brother is well and improving.

Thank you so much for your message.  My brother's feet are really bothering him. The peeling has stopped but the pain is terrible.  He is losing more weight also.  He says he is not weak, but I can tell he is more weak than normal.

From MTAJ; I was on sutent for a few cycles,but it proved worthless for me,nexavar worked for 10 mo's till it quit on me,then tried tarceva and avistin together for a few months,it also failed,am now on nothing but pain meds,while waiting for appts for surgery on my spine met...tell you the truth, I don't know if it was worth all the suffering, with the end result being, "I still have RCC stage 4". theres really nothing out there for a cure yet and I am hoping for something new to come along that offers that...Right now I feel real good,out and about doing what I want without all those nasty side effects I had with all those expensive drugs.The only thing that scares me now,is being in a wheel chair for the rest of my time if my spine fractures...anyway I hope it works for you and the side effects are not too bad,take care...Mel from Nevada