Torisel

H everyone,  can anyone on Torisel help me out?

How it's given, how long, etc. Don't need to see the side effects. If I see them again I wikk have nothing done...  lol   I am to go on this drug soon and know nothing about it. Was on Sutent and Nexavar... I have RCC.

My husband has had 5 Torisel treatments, was on Nexavar for 2 years.  He has finally began putting on weight (got down to 137#, is now 162#), his neuropathy is better, he has more strength, and overall says he feels better.  He's still tired, but his hemoglobin was below 10 this week and will start on Aranesp (?) next week (sub-q injection given every 3 weeks).  He will be rescanned in about 3 weeks to see if the Torisel is doing its job.  Hope this info is helpful.

Jenny

 

On 4/9/2008 batjat wrote:

H everyone,  can anyone on Torisel help me out?

How it's given, how long, etc. Don't need to see the side effects. If I see them again I wikk have nothing done...  lol   I am to go on this drug soon and know nothing about it. Was on Sutent and Nexavar... I have RCC.

 

I have had 25 treatments of Tooroisel, IV infusion weekly. Recent scans showed tumors were stabilized. This was an improvement ovewr Nexavar and Sutant, both havaeing serious blood side effects. SInce Torisel is a new drug duration of the treatment is unclear. We are making hisitory.

So are you saying that your side effects are not as bad on Torisel as they were with Sutent. My husband starts on Torisel today and I'm really nervous about the side effects.

Kim

That is correct. TOrisel has given me taste alteration, so nothing tastes good, but otherwise I carry on.  Suten and Nexavar were terrible attacking my white and red blood cells. Torisel is administered with Benadryl to lessen the impact of the infusion and plenty of Saline Solution.

 

But each person is different.

 

Good lulck.

 

Ron 

Thanks for your reply.

Can you tell me how many treatments with Torisel before getting a CT scan?

My husband was on Nexivar but had severe side effects. After about 3 weeks a CT scan showed new growth.  He has now been on Torisel for 6 weeks.  I was wondering how long they usually wait to do a CT scan to check effectiveness? 

My hubby was to be scanned after his 6th Torisel treatment...so 6 weeks. Ask your doc, push for it,

I have good reason to be afraid of torisil, it really screwed all my mucis membrain tissues,including a hole between the nostils, its all differant up there now,nose runs with the slightest hint of cold or hot, I infused avistine weekly along with it,so it could be a combo problem, also there was a good reason to stop it,IT DID NOT WORK, just had my L4 vert removed along with a couple of pounds of cancer tissue, but the pain went away with it,(post- surgery),from the pressure it was putting on the horse-hair nerves, I mean it was moving fast,even after the chemo and maxed out radaition treatment, I do not know how long the surgery will give me, but it sure wiped out the pain I had there and will at least keep me on my feet for as long as it lasts, that scared me more the  dieing, it was very close to falling apart with my body hitting the ground very fast if it did...am stage 4 RCC for 2.7 years now post radical-nepthnomy, so I consider myself very lucky to still be here !!!

This past Thursday, I just had my 5th Torisel treatment.
Last time they had to stick me 4 times before they found a vein. So next Thursday the 15th. I am having a port put in and then I am going for my Chemo. treatment right after it is installed. All the side effects that I did have are gone. The blisters in the mouth, I used Colgates Orabase for Canker and mouth sores. (CVS) and Benadryl for the blisters and itching on my feet. 
Another side effect that has turned up, I have not read about, but wonder if anyone else has experienced it. I have nodules turning up on my scalp.
They feel like small bumps all over. Good thing I still have my hair, which covers the bumps. (I just hope they don't spread to my face, or I might end up on the Science Fiction  Channel as one of those bumpy face monsters.
Has anyone had this side effect, or can it be something worse?
I did have a C Scan taken this morning of my abdomen/ pelvis/ chest and head. But will not know the results for a few days yet.
It is a Stage 4 Kidney Cancer that I have. 
That's it for now, and I hope all you mothers out there have a wonderful Mother's  Day. And know that all that are connected to this Cancer Compass forum as a patient or care giver for a loved one with this
insidious disease, you are all in my prayers. God Bless You.... oldmom