torisel

Hi!

My father is stage IV kidney clear cell carcinoma. He had his kidney removed in january 2007 and from april 2008 we know that his cancer sent mets to the lung, bones liver and brain. He was on Sutent 50 mg until oct 2009, now he's on Nexavar but we want to try Torisel 25mg because we were told it's better than Nexavar since he was first on Sutent.

He's feeling weak, lost his appetite and last month we found out that he had water on his right lung. The doctor had to take it out, about 6 liters and he performed a small operation and he put talc in his lung after removing all the water. But after a month the water was back and last friday he had to take out another 2.5 liters.

I was wondering if anyone has had the same experience or if torisel makes the difference. Our oncologist said that first his lung has to be water clean and after that comes Torisel.

This drug is given once a week, I.V. but i read that the pacient could feel bad and weak, so please, if anyone can answer this questions, because i want to know what to expect.

Thank you and God bless all!

My mom is on her 3rd round of Torisel and so far she feels pretty good.  Days 1-2 are the hardest cause she is so tired after the treatment.  I know there are people on here that have been on the medication a long time with great success!  Good luck to you and your father!

My husband Dave was near death when diagnosed with stage IV clear cell RCC in June 2008.  He was so weak and ill that he couldn't have his nephrectomy at that time because they didn't think he'd survive the surgery.  He was immediately placed on Torisel 25 mg IV once a week, and it literally saved his life.  He had been coughing almost constantly due to the horrible lung mets (he had more than 30 tumors in his lungs) and lymph node mets in the chest.  After just 3 weeks on Torisel the cough had completely gone away, and Dave looked and felt much better.  I have no doubt that he would not have lived more than a few weeks if not for the Torisel.

He was on Torisel for 8 months, and during that time he was able to have his nephrectomy.  It stopped working after 8 months, and Dave is now on Sutent.  While on Torisel, Dave did have some very unpleasant side effects.  The worst was mouth sores.  He developed actual holes in his mouth and tongue, and the pain in his mouth was horrible.  He often couldn't eat at all and basically lived on health shakes I made for him.  He also had fatigue, and he just felt rotten while on Torisel.  He became anemic and needed a shot to help his body make more blood.

That being said, he will be the first to tell you that the Torisel treatment was worth it, even with the side effects.  It saved his life.  He wouldn't be here now if not for the Torisel.  And now here we are...a year and a half later...just celebrated another Thanksgiving and Christmas. 

I wish you and your father the best.  I hope he can get the fluid in his lung taken care of so he can try the torisel. 

Nancy

My husband has been on torisel for one year this week.  His main side effects have been sores and a rash on his body and he is weak and tired.  But he wasn't even that tired during the first 6 months - our lives were relatively normal.  But now he has heart issues and I feel that is mainly where his weakness is coming from.   Like Nancy, torisel saved his life.  After having one kindney removed and the cancer having spread - it was his last hope.  It kept the cancer in place - no movement.  We felt very fortunate that it worked so well and that he wasn't sick during treatment.  He only had minor mouth sores - kept in check with oral rince, and the body sores with prescription cream.  So be very optimistic!  Torisel works!  Good luck with your treatment!

Janler

Thank you all for your kind words and for sharing with us your experiences!

I do hope that Torisel will work for my father too, we've tried pretty much all that we could so far, so I think that this is kind of his last chance!

We are from Romania and Torisel just got here. The day after tomorrow we will get the first two ampoules and hope that we can start on thursday, but he's felling so weak... Hope God will let us try this drug and will let my father live for a wile longer!

Wish you all the best and God bless you!

Michaela

Michaela, you and your father are in my prayers.  I hope the Torisel works for him.  Isn't cancer a horrible thing? 

Best wishes,

Nancy

Thank you for beeing so kind!

Cancer IS a horrible thing! And all the pain along with it!

We only have hope left, hope that maibe, some day, people will be able to live with cancer as well as with a flu. Hope that maibe the cure will be found and we all will be saved!

God bless you!

Hi!

I was wondering if any of those who used Torisel had any difficulties breathing?

I red that Torisel might give difficulties breathing and since my father already has this difficulties, I wanted to know from others their experiences!

Thank you and best wishes!

Michaela

Hi Michaela,

I have been on Torisel for 6 months and have not had any difficulty with breathing.  The only side effects I have are fatigue, rash, dryness of skin, and nosebleeds...my first scan showed 15% reduction so it seems to be working for me.  Hope that all is well...Bernadette

My mother is on her 6th treatment and the only side effects she has is dry mouth, mouth sores, and fatigue on the day after she gets treatment.  Bernadette, I am glad that the Torisel is working for you.  We are hoping it is working for my mom also, scan is next week!