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Clinical Trial Thoughts


#1

Hi Everyone,

Dan found out on Friday that the Votrient isn't working for him anymore...well we don't think it is at least...our Dana Farber doctor wants to see the scans to be sure...he said sometimes there is an appearance of slight growth when really it is the tumor changing it's make up (??)...more information to follow I guess. The drug has been good to him and we hate that it may have stopped working only 6 months into it.

Our doctor sent us this information on a trial that might be appropriate for Dan. Has anyone heard of it?

http://www.clinicaltrials.gov/ct2/show/NCT01574716?term=NCT01574716&rank=1

He said there are other options as well...but surgery doesn't seem to be one. Dan's tumor is in his left lung. It appears that it has grown up and against his pericardium/heart but it is not currently impacting his heart function. VERY different from this summer when he had two horrible hospitalizations because of an enormous amount of fluid surrounding his heart. He's recovered so well from that and is even back at work several hours a week. It is devastating that we need to go back to the drawing board now.

I'm looking forward to hearing your thoughts/experiences.

Thank you,

Katie


#2

Katie I am so sorry to hear the votrient is no longer working although I find it hard to believe that this information was given to you both before the scans were looked at it doesn’t seem proper practice but hey that’s just my opinion, votrient didn’t work on my hubby at all the only chemo that ever had any effect was the first lot of ifos that he had, hopefully dan will be accepted to the trial and it will work for him, I don’t envy what you are going through I have as they say been there done that and explored every avenue I could just to keep Colin with me for just a little longer but it wasn’t to be, although he is no longer with me I like to come on here to check in I are both in my prayers and hopefully the doctors will find something that kills the tumors in dan xxx


#3

Thanks Sheila, your experiences are so helpful although I am so sorry that you had to go through them.
I should have made it clearer that Dan did get his results from his doctor here in Hartford, but our doctor at Dana Farber (a sarcoma specialist) wants to see them before making recommendations because he is actually the one running the show. He said that sometimes radiologists don’t understand the complexities of the rare sarcoma.


#4

Trish's daughter and Ziasper's niece were on this trial at one point and did not respond. Check the following discussions

http://www.synovialsarcomasurvivors.org/forum/topics/morab-004-tem-1

http://www.synovialsarcomasurvivors.org/forum/topics/next-chemo-options?commentId=6300991%3AComment%3A27528

Since they apparently do not test whether the tumor is positive for endosialin, it could be that theirs were not and that's why they didn't respond?


#5

Sorry to hear that votrient stopped working for you. It stopped for me also after some good results for several months. Then, at that time I got on the following trial: http://www.clinicaltrials.gov/ct2/show/NCT01543763

It reactivated votrient for me for a few more months, but eventually I wasn't able to continue the trial due to complications.


#6

Adam0, what treatment are you on now?


#7

Gem/Tax, about 6 weeks in. Lot's of edema, pain, and I'm noticing my energy levels getting lower. Hoping something better comes along soon. But still fighting!!!