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Torisel Treatment

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Subject: Torisel treatment
Date: 02/28/2008
My husband had his left kidney removed in August 2005 with no mets.  Six months later, in February 2006 it was found in a rib and the left sacrum area and left iliac crest.  These areas were radiated and he started on Nexavar.  He reduced his Nexavar to 1/2 dose two months ago due to neuropathy of the feet, legs, and hip area.  His PET/CT scan two days ago shows mets to the right lung and two new spots on the spinal column.  He is debating on Sutent or Torisel.  I think the Torisel would be better since he has already been on oral chemo.  Anyone else been on Nexavar and now on Torisel?  What is your experience on it?
Subject: RE: Torisel treatment
Date: 03/06/2008

My husband (60 years old) has RCC that also spread to his spine, rib, hip, lungs.  He was diagnosed 3 1/2 years ago and has had the kidney removed, spine surgery and hip replacement.  He has been on most of the newer treatments, including nexavar.  They all seemed to work for a while.  They took him off of the nexavar after about 9 months when he developed congestive heart failure.  They did not want to try the sutent because it is very similar to nexavar.  He went into home hospice at that point.  The heart meds seemed to control the chf and he improved enough to come out of hospice and go on the torisel when it was approved last July.  It seemed to be working.  He was doing OK on it - not much side effects.  The first CT showed a little shrinkage in the lung mets and the last one showed it to be stable.  Since January the doc has him on a  break from the torisel treatment.  He has an oncology appt next week and probably will get scans again so see where he is at.

He also has major problems with neuropathy that started with the nexavar but has gotten much worse in the last 3 months.  He cannot even lay down because his feet throb when he puts them up off the floor.  He sleeps on the couch with his feet on the floor.  He ended up with gangrene in the tip of one toe because he had such poor circulation in his legs.  I don't know what has caused the blockage in his arteries.  The doctors always love to blame all of his problems on the fact that he smoked.  May be true but seems like an easy answer for them.  I wonder if it was caused by the meds or the radiation he received in the pelvic area and back.  Docs say "maybe" when I ask that question.  Anyway, they finally did some circulation tests and last week he had an angioplasty to open the artery in his groin area.  It seems to have helped a bit. They said there was also blockage in the artery going through his thigh that was too long to open with a stent.  They just did more ultrasounds this week so I am hoping we will hear soon if there is something more they can do.

Subject: RE: Torisel treatment
Date: 03/06/2008

 

On 3/6/2008 chrislol wrote:

My husband (60 years old) has RCC that also spread to his spine, rib, hip, lungs.  He was diagnosed 3 1/2 years ago and has had the kidney removed, spine surgery and hip replacement.  He has been on most of the newer treatments, including nexavar.  They all seemed to work for a while.  They took him off of the nexavar after about 9 months when he developed congestive heart failure.  They did not want to try the sutent because it is very similar to nexavar.  He went into home hospice at that point.  The heart meds seemed to control the chf and he improved enough to come out of hospice and go on the torisel when it was approved last July.  It seemed to be working.  He was doing OK on it - not much side effects.  The first CT showed a little shrinkage in the lung mets and the last one showed it to be stable.  Since January the doc has him on a  break from the torisel treatment.  He has an oncology appt next week and probably will get scans again so see where he is at.

He also has major problems with neuropathy that started with the nexavar but has gotten much worse in the last 3 months.  He cannot even lay down because his feet throb when he puts them up off the floor.  He sleeps on the couch with his feet on the floor.  He ended up with gangrene in the tip of one toe because he had such poor circulation in his legs.  I don't know what has caused the blockage in his arteries.  The doctors always love to blame all of his problems on the fact that he smoked.  May be true but seems like an easy answer for them.  I wonder if it was caused by the meds or the radiation he received in the pelvic area and back.  Docs say "maybe" when I ask that question.  Anyway, they finally did some circulation tests and last week he had an angioplasty to open the artery in his groin area.  It seems to have helped a bit. They said there was also blockage in the artery going through his thigh that was too long to open with a stent.  They just did more ultrasounds this week so I am hoping we will hear soon if there is something more they can do.


Thank you for your information.  My husband is getting his port put in tomorrow and will start his treatments on Tuesday.  We are hopeful that he will respond favorably to the Torisel as he was on Nexavar two years.  His neuropathy is manageble with Neurotin right now.  We just keep praying and looking to new treatments.  A Dr at IU Med Center in Indianapolis is doing research on RCC and has found that stem cell transplant is a possibility.  My husband has 6 siblings, so finding a match would be possible.  We still have options.  Hope your husband is doing better.  Will keep0 you in our prayers.

Subject: RE: Torisel treatment
Date: 03/06/2008

What dose is he taking on the Neurontin?  Doug is also taking that.  Was taking 900mg but cut back to 600 because it made him so drowsy.  It does seem to help the pain, but not completely.  But considering the blockage it probably couldn't be expected to.

Subject: RE: Torisel treatment
Date: 03/06/2008

 

On 3/6/2008 chrislol wrote:

What dose is he taking on the Neurontin?  Doug is also taking that.  Was taking 900mg but cut back to 600 because it made him so drowsy.  It does seem to help the pain, but not completely.  But considering the blockage it probably couldn't be expected to.


 

Subject: RE: Torisel treatment
Date: 03/06/2008

 

On 3/6/2008 jennypot wrote:

 

On 3/6/2008 chrislol wrote:

What dose is he taking on the Neurontin?  Doug is also taking that.  Was taking 900mg but cut back to 600 because it made him so drowsy.  It does seem to help the pain, but not completely.  But considering the blockage it probably couldn't be expected to.


Larry is taking the maximum dose of 1200mg three times daily.  He is also on Norvasc 10mg for blood pressure that went up while on Nexavar.  RCC is not easy to treat, but I feel we are fortunate to have new meds being approved almost yearly.


 

Subject: RE: Torisel treatment
Date: 04/10/2008

Has your husband been rescanned yet?  How are things going?  My husband has had 5 Torisel treatments and will be scanned again in three weeks.  We pray the treatments are shrinking the lesions or possibly gone altogether.  Keep your spirits up, I think about you often.

Jenny

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