Hey everyone,
Colin started on Votrient a month ago and seems to be doing okay on it although we have no idea if it is working...
For those of you who are on/have been or is caring for someone on Votrient can you please give me some feedback on this drug.
I would appreciate all comments.
Thank you all.
Hey Irish Sheila! My husband Dan started Votrient about one month ago. We, too, have no idea if its working yet. 1st CT scan not until next week, I think. Dan started at 400 mg and was increased to 600 mg a few weeks later. Unfortunately, his blood pressure elevated significantly and as the result, he was reduced back to 400 mg. Blood pressure has since been stabilized (taking bp meds for that as well now) but he is also experiencing other side effects (i.e., diarrhea, fatique, bad taste in his mouth). He's having blood work done today to check his liver enzyme levels etc....and I'm not sure if they are going to try to increase him back up to 600 mg's. Will be happy to keep you posted if interested....good luck. xoxox Jeanne
Hi Jeanne
Thanks for posting it would seem that both our hubbys are on the treatment the same length of time, colins BP has been fine we bought a monitor and are keeping a close eye on it. Colin is also on 800mg he was doing great at first but in the last 3 weeks the weight has started to fall off him and for the last 5 days he has had bad cramps and diarrhea i know this may sound bad but it is good to see that he isnt the only one that has it and this is a side effect although not a nice one he is also very tired but hasnt had to many complaints with his taste buds, his hair however is getting very light in color. he is due for a check up in the morning for bloods and to organize a CT and i am also going to mention the diarrhea as i am concerned enough about his weight he is 6ft 2 and is now down to 80kg. Has your husband been on many other chemos before this one?
Yes..Dan was first diagnosed with SS in June of 2011. At that time, he had surgery to remove a tumor on his back (close to his lungs). That surgery was followed by intensive intravenous chemo (A.I.M....an "ifosfamide cocktail) and many weeks of radiation to the surgical sight. We cruised for just under a year before we learned that his cancer had metastasized to his lungs. So clearly, the original chemo "didn't work". Dan had another surgery this past February to remove one of the lesions on his lungs. Unfortunately they couldn't get it due to excessive scar tissue. So now...Votrient with our fingers crossed. xoxo
my hubby has 3 in his lungs he has had 8 tumors removed to date it all began in march 2010 they wont go near his lungs here in ireland which i think i crazy.. well at the moment it would seem that both of us are in the same boat with our husbands and the votrient i really hope it works on both of them
Well Shiela...its nice to have someone to talk to about all of this. People mean well, but often want to tell me stories of their friends and relatives who have battled cancer (all forms of cancer). And while I remain appreciative and courteous, what I'm actually thinking is..."you don't get it...this is synovial sarcoma....its different". I am very happy to have friends here who truly understand. Best of luck to you and your husband. Please keep in touch. xo Jeanne
hi jeanne, i no what you mean about people trying to be nice but you are right they dont get it.
Colin was at the hospital today his BP, urine and bloods were all fine so they are leaving him on the 800mg dose. he was speaking to his consultants reg and she said that they wont thin of doing a scan on him for at least another month because the votrient is a slow working chemo and if the scan was done to soon and it showed that there is no change there could be a risk of taking him off it before giving it a chance to work, he has to goo in to the hospital in 2 weeks to get an xray but because he had been getting chest pains over the past couple of days they told him to go in sooner if they come back or persist. they also gave him imodium for the diarrhea but tbh it didnt do him much good today as he still has it so we will see what the next few days brings.. much love steph x
Jaclyn has been on votrient since December 2012. Her scan in Feb. showed shrinkage, will have another scan and know the results May 21st. Praying for more shrinkage. She has had a lot of side effects, but most are being controlled with meds. Her main complaint is nausea and back and legs pain. The primary tumor is in her lower spine. The doctor says the pain can be a good thing, meaning the tumor is shrinking. I hope Colin does well and the votrient helps. You might want to look up JimK on here he is very encouraging and has been on votrient for a while. Best of luck..Lynda
hey Lynda, than you so much for the add and for your comment, it is reassuring to read some positive feedback on this treatment, colin is suffering bad with nausea he had a real bad day yesterday, he takes motilium for the nausea but that causes diarrhea and then he takes immodium for that which causes nausea so it is a very vicious cycle. he to is complaining alot lately about pains in his legs and chest which is where the 6 tumors are divided between but after reading your comment i am hoping that this is due to the votrient shrinking the tumors if this is the case it would be nothing short of the best news ever. I wish Jaclyn the very et of luck for the 21st may i hope you get great news x