Hi everyone! James' nodules have remained stable for 3 months. However, he has surpassed his lifetime dose of Doxy and Ifos. In order to avoid the November 2011 disaster when his lungs were invaded with metastasis (4 weeks after being taken off on Votrient after it had stopped working), he has been started on AFINITOR (everolimus). Anyone out there with experience using this drug?
How long was he on Votrient? Has he just started Afinitor and is it a pill dosage also?
Is he taking everolimus alone? There is a clinical trial with the combination everolimus + imatinib (gleevec) for synovial sarcoma patients at MSKCC:
http://clinicaltrials.gov/ct2/show/NCT01281865
Laura's boyfriend is on it and somebody else also mentioned it but I don't remember who...
My Doctor at MSKCC is involved with this trial and seems encouraged by it. She didn't give me specifics, but mentioned there are patients who have been stable for over a year.
James is taking the Everolimus as monotherapy orally. He has been on it now for a week. He looks amazing and says he feels amazing! He has some nausea in the morning but feels better after he vomits once. His hair is growing back! I hope this drug gives some long lasting results! Prayers for my boy and everyone who is battling this monster.
So far do good on the Afinitor!! James is working a bit and looks wonderful!!! Keep working scientists of the world!
Ellen said:
James is taking the Everolimus as monotherapy orally. He has been on it now for a week. He looks amazing and says he feels amazing! He has some nausea in the morning but feels better after he vomits once. His hair is growing back! I hope this drug gives some long lasting results! Prayers for my boy and everyone who is battling this monster.
Wonderful news Ellen!
Ellen said:
So far do good on the Afinitor!! James is working a bit and looks wonderful!!! Keep working scientists of the world!
Ellen said:James is taking the Everolimus as monotherapy orally. He has been on it now for a week. He looks amazing and says he feels amazing! He has some nausea in the morning but feels better after he vomits once. His hair is growing back! I hope this drug gives some long lasting results! Prayers for my boy and everyone who is battling this monster.
Well, the Everolimus ( Afinitor) did not work. We are now going to Bethesda, MD in a few weeks to try a clinical trial NYESO-1 Antigen therapy. Praying for everyone. Wish us luck.
I also been told I’ve max out on Doxy and it does seem to have pretty clear and direct impact on your heart plus other nasty side effects. I am pleased to be off it.
My theoretical ceiling on IFOS has been increased and I am on another high dose round of 6 cycles. My oncologist who is normally very conservative is quite boyant on the positive impact it may have. Ask your doctor why the limit on INFOS
Ellen~I'm so sorry to hear that about the Afinitor. Best wishes as James heads to Bethesda. Thinking of you and James.
Thanks Katie. I hope you and your family have a great summer. Be well.
I was under the impression that ifos didn't really have a limit unless it started seriously affecting your health in other ways, most notably issues w/ the urinary tract. I had briefly discussed this w/ my oncologist recently b/c I've been on ifos for a long time. Just curious as to what the reasoning was behind stopping? I know that doxy has a limit b/c I reached that fairly quickly last year.
Best of luck w/ the clinical trial!!
Ellen said:
Well, the Everolimus ( Afinitor) did not work. We are now going to Bethesda, MD in a few weeks to try a clinical trial NYESO-1 Antigen therapy. Praying for everyone. Wish us luck.
Good luck Ellen!
Thanks Elodie!
There is no limit on Ifos. However, he has had over his limit of Dox and has had 11 rounds of Ifos. Clearly, it is not working.
Thanks for the info! Best wishes on the newest drug!