Anyone On Trorisel?

Just wondering if there is anyone on this particular site who might be presently receiving Torisel treatments.  My husband has just completed #7 and it would be good to compare side effects such as rash, leg pains, etc with another.

 Gloria

On 9/26/2007 gabbygail wrote:

Just wondering if there is anyone on this particular site who might be presently receiving Torisel treatments.  My husband has just completed #7 and it would be good to compare side effects such as rash, leg pains, etc with another.

 Gloria

my wife has completed 8 treatments. she wason sutent but was pulled off once she got a met in one of her vertabrae.

anyway she has had no appetite for the last three weeks and I mean NO appetite, she refuses to eat and anything excpet spoonfuls of very balnd food. as a resulther blood levels,hemoglobin and iron are real low. she also got a blood clot and is now getting lovenox shots every day. because of the swelling from the clot or the lymphs she has a severley swollen arm.

today she started lymphadema therapy which requires her to have her entire arm taped up all the time and for the next two weeks she has to go to therapy  every day. she alos experiences severe tiredness.

but she had a scan yesterday and the cancer has not spread, it did not shrink but at least it did notprogressfornow.  

I am starting Trorisel next week and wanted to know about side effects also. My doctors are talking about doing a second lobectomy if this does not work

IL2, Nexavar, Sutent have all not worked so I am just praying that this will finally give us good news.  What are the side effects...is there hand foot syndrome associated with this drug?  If anyone has had experience with it please share it with me.

Thanks in advance

Chris

Marion, AR.

Torisel is so very new, that it is only through forums such as these, that we can learn what others are experiencing with regards to side effects and what possible cures for such effects there might be.

My husband has difficulty tasting food, but is determined to keep eating despite this, for fear that he would lose his appetite all together and become more ill.  He finds milkshakes work sometimes, flavoured chips for snacks, rhubarb pies or anything that might usually have a tart taste.  You've got to try to keep your appetite going no matter what.  He also has a rash and lots of leg and arm pains in the muscles.  At first the dr did think it might be a clot forming, but nothing appeard on the ultrasound.  He goes tomorrow for his CT scan and will get his report on Monday, as to whether the Torisel is working for him after 7 treatments.

Keep positive everyone and don't give up...you can do it!

Gloria

On 9/27/2007 Westmemphis wrote:

I am starting Trorisel next week and wanted to know about side effects also. My doctors are talking about doing a second lobectomy if this does not work

IL2, Nexavar, Sutent have all not worked so I am just praying that this will finally give us good news.  What are the side effects...is there hand foot syndrome associated with this drug?  If anyone has had experience with it please share it with me.

Thanks in advance

Chris

Marion, AR.

Hi Chris

I have had 2 treatments with Torisel. My main side effect is sores in the mouth and decreased appetite. The other has been low platelet count which cancelled my 3rd treatment.

I have not heard of foot and hand syndrome with this drug.

Torisel was the first drug I have been but on as I have papillary RCC and the others have not been tested or been ineffective for my type of RCC.

Leo

I thought I would quit lurking and share a little bit in this thread.  My mother who is now 84 years old is on Torisel and has almost completed two months of weekly treatments. She had to skip one week because her white cell count was a little too low.

She has been on Sutent and Nexavar in the past, lost lots of weight and was sick mostly because of the treatments.  Digestive problems, "rash" like symptoms, loss of appetite, no energy, joint pain in legs and feet, loss of hair, loss of taste.  You could almost go down the list of possible side effects and she had them.

As I said, she has now been on Torisel for about two months now, has lots of energy, been eating good enjoying food and even gained a few pounds, goes shopping and out to eat with friends, driving herself around some again, and much better quality of life on this treatment. Looks forward to many activities that she was too tired to participate in on the other treatments. She is usually a little tired the day after treatment, and takes and afternoon nap that day.  Much different than other treatments when she was sleeping most afternoons away.

The quality of life on Torisel has been so much better than on the other two meds before this.  It is working?  We don't really know yet, she will be sent for a CT scan in the next week or two, but we hope that it is working as she can tolerate the medicine so much better than the Sutent or Nexavar, I was almost afraid that she would become too weak to fight the disease on those drugs and they would kill her before the cancer did. 

On 9/26/2007 gabbygail wrote:

Just wondering if there is anyone on this particular site who might be presently receiving Torisel treatments.  My husband has just completed #7 and it would be good to compare side effects such as rash, leg pains, etc with another.

 Gloria

Hi gabbygail!  My mother is on toricel and has been for about a month.  She gets it once a week and the first few treatments she felt good but now is starting to have nausea and she says her legs seem to be weaker then before.  She is falling more because she says her legs feel numb and very shaky.  She has no rashes but is extremely tired all the time.  I  wanted to ask you has your oncologist done follow up MRI to see if the toricel is shrinking the tumors?