I have never heard of this drug beofre and let me apologise for been so nosey but i would like to thank you all aswell because for the majority of you votrient has worked and i am going to tell my husband this i dont think the hair thing or pain will bother him to much as he already spends most days in bed due to the tumor behind his knee so any quality of life and the chance of his tumors reducing would be a bonus... my hubby is only 27 :(
Oh Shiela I'm so sorry. As far as I'm concerned, there's no such thing as "nosey" here. We're all in this together and asking questions and obtaining as much information as possible is a good thing. My husband hasn't tried the Votrient yet, but I'm sure it will prescribed following his surgery (which is Wednesday 2/20). I will share his experiences with the group as well, when I have something to report. Has surgery or chemo/radiation been recommended for your husband??
(Jeanne)
my husband is on chemo and he has also had 8 tumors removed to date so i cant understand why he has never ben offered these tablets which makes me wonder are they even available in ireland? i am so thankful for this site it is given me something to hope for when i read peoples stories who have been living with ss for so long
My brother, Chris Davey, tried Votrient for 50 days; side effects not too bad but just went off it because it was not working. He is now headed to UCLA to check out a trial drug. I believe it's called "inno-206" with Dr. Andrew Hendifar. Chris has lung metastasis as well as other areas. Also tried Gemzar.
Thank you "Davey"!! Please keep us posted...
DaveySurvives said:
My brother, Chris Davey, tried Votrient for 50 days; side effects not too bad but just went off it because it was not working. He is now headed to UCLA to check out a trial drug. I believe it's called "inno-206" with Dr. Andrew Hendifar. Chris has lung metastasis as well as other areas. Also tried Gemzar.
my husband is on gemzar at the moment he went to the hospital this morning to have his chemo but because of the pain that the tumor in the back of his knee is causing him they thought it was best not to give it to him he did ask the nurse about votrient and she thinks it will be a good idea to mention it to his oncologist when he speaks to him on tuesday, i feel very frustrated that they are happy to hold of on his chemo today :(...
however davey i get great relief reading your story as my husband also has tumors in his lungs that were only diagnosed on the 4th september 2012
My husband is taking votrient for his cancer which has progressed quite aggressively, but he is fighting the cancer as hard as he can. He started taking votrient I belive in october 2012. He has had surgery, chemo twice, radiation and now he is on votrient. His hair turned white, his eyelashes and eyebrows. He takes it at night which makes it so difficult for him to sleep, but he would rather take it at night rather than during the day because he feels terrible on it. His chemo pill has not shown any of the serious organ failure which is common with votrient. He has lost weight. He is still going to need radiation. However, many people use terminal alot to describe his condition and to not seek treatment, which is frustrating. I am sorry to those with cancer and their spouses, family, and friends. I know how hard this is. He is starting to feel the nausea a lot more and his breathing is weak. Any suggestions for other treatments?
Evan, there are not too many options as far as conventional treatment. The conventional chemos are ifosfamide, doxorubicin, votrient, gemzar and taxotere. In some countries, yondelis is already approved also. If you want to look beyond that, you need to get into clinical trials. You can check what is available here:
In the search, you would either type "solid tumor", "soft tissue sarcoma", "sarcoma" or "synovial sarcoma". They have an advance search where you can pick the country or state.