Torisel

Hi,

I'm glad to hear about the sister and husband who have done well since initial bad reactions to Torisel. As a preventative to allergic reactions and rashes that Torisel can cause Benadryl drip is used first. Except I was driving home "under the influence" so I refused the Bennie the last two infusions and did much better.  No grogginess over the weekend as before.

But   the edema (water retention) is so bad after one month that I can't get into any shoes. Diuretics by the handful haven't helped yet and all my muscles and joints hurt. Any suggestions?

For those who had bad side effects with Nexavar I learned how to deal with the hand/foot blisters. I lanced and drained them and bandaged them with burn or antibiotic ointments and walking was easy after that. But after 8 months Nexavar quit working. So there goes my new found energy and independence.  

My cancer was discovered by accident in 2004 after it had about two years to grow. Now I have numerous tiny tumors covering my lungs and a few large ones. I've done Avastin, Interferon, Sutent and Nexavar. I'm 57 and work a 40 hour week and try to spend time with my grandkids. I won't let this win. If I can help in any way let me know.  

Sharon

My husband is on Torisel and also has the water retention in his feet and ankles and the muscle pain in his calves.  He just started on a water pill in hopes that it will go away so I am disappointed to hear it didn't work for you.  He is taking a break from treatment for 2-3 months so we'll see if it gets better.

Keep up your great attitude on beating it! 

My mom is on Sutent and the doctor feels is becoming immune to it and wants to switch to Torisel. Would you say the side effects with Torisel are worse or better?  Since it appears she has to have a treatment every week I am concerned that she won't get a break.  She enjoys the two weeks off when off the Sutent but it is easier on you then taking the pill every day?

 Thanks for your help.

On 1/21/2008 TanyaM wrote:

My mom is on Sutent and the doctor feels is becoming immune to it and wants to switch to Torisel. Would you say the side effects with Torisel are worse or better?  Since it appears she has to have a treatment every week I am concerned that she won't get a break.  She enjoys the two weeks off when off the Sutent but it is easier on you then taking the pill every day?

 Thanks for your help.

  

The only side effect to Sutent and nexavar were the hand/foot syndrome blisters which I learned to deal with. Torisel side effects never go away. There is always, at least for me, a sense of swelling, dizziness, and joint/muscle pain. The water pills are helping to a degree but not entirely. I use a walker to allow me to walk further with less pain and more stability. I tell people the walker makes me a weeble. I may wobble but I don't fall down.

Please discuss her blood sugar, blood pressure and triglyceride status with her doctor. All of these are impacted. My blood pressure has returned to normal, blood sugar is still about 90 points over normal and triglycerides are double normal levels. They were all normal before I began.

Labs are also weekly, not just the infusion. That is getting old for some of us now.  

Thank you for the response we are going to talk to the doc tomorrow about getting started.  She has been having labs for over a year every week even on just the Sutent.  They watch her pretty close.  I guess it is this or nothing because the Sutent won't work anymore.  I am sorry to hear that the side affects are always because the break was nice with the pills.   

TonyaM,

         I hope the Torisel works for your mom. Turns out it didn't work for me and after 4 years my oncologist says there is nothing else on the market to try so now we let Mother Nature take its course. 

I just read about one call emserolimus (sp?) that showed good results in trial.  It is not FDA approved yet but you should ask your doctor about it.  It is in pill form which is always nice.  Let us know if you find out anything about it.

My husband was on Torisel and it seemed to be working.  He is not taking anything right now because he has other problems that they are trying to clear up before restarting it.

 Thanks and hang in there.

Chris