My run with Votrient has ended after 8 months. My tumors have progressed in my lungs. Visiting Sloan for trials and wonder if anyone is aware of any trails (other than the NYESO trail)? I don’t qualify for that trail. Kinda scary when your doc says he’s out of options for you. Thanks!
Recently I made a list for Kelly that you can find here:
http://forum.synovialsarcomasurvivors.org/forum/topics/clinical-trials-1
You can add the following that came out last week:
I want to say a bunch of bad words…. My son is in the same spot! I called Mayo Clinic, UCLA, hospital in The Netherlands and waiting on a response from Dana Farber. I also contact the National Organization for Rare Disease to see if they can help. If i know anything, I will post it here!
Thank you Elodie- I printed these off so I can have for my appt at Sloan. Very helpful and many I wasn’t aware of. Dutch - I wish you luck!! I may be looking into MD Anderson depending on how my Sloan appt goes. I will also post here. Good luck to you and your son/family. It’s hard to deal with but im just taking it one day at a time.
Aperez stay strong!! Let us know if you have any information that is helpful, we will do the same!
My oncologist was talking about this trial last week:
Phase 3 Study to Treat Patients With Soft Tissue Sarcomas
The purpose of this study is to determine the efficacy and safety of aldoxorubicin in subjects with metastatic, locally advanced, or unresectable soft tissue sarcomas.
https://clinicaltrials.gov/ct2/show/NCT02049905?term=aldoxorubicin&rank=8
My daughter was also on Votrient(pazaponib) and was going to start a trial for tribectatin or Yondelis in Philadelphia at fox Chase cancer center. They have it at other places too. She passed away in August after fighting for 6 years at the age of 19. I hope this might work for you.
Sean, does that mean the trial is not on hold anymore? They had put it on hold in November to review inclusion/exclusion criteria...
Sean Smith said:
My oncologist was talking about this trial last week:
Phase 3 Study to Treat Patients With Soft Tissue Sarcomas
The purpose of this study is to determine the efficacy and safety of aldoxorubicin in subjects with metastatic, locally advanced, or unresectable soft tissue sarcomas.
https://clinicaltrials.gov/ct2/show/NCT02049905?term=aldoxorubicin&...
Thanks Sean for the info. Sashamipin - so sorry hear about your daughter. 6 yrs is a long time, she was a fighter. I send positive thoughts and vibes your way. I was diagnosed Oct 2012. I’m hopeful there is something out there for me. Seems like there are a few trails. I will update the discussion when I know more. I appreciate your help.
I assume so. Dr. Chmielowski is the principal investigator at UCLA for the trial, so I'd hope he'd know that.
We were just discussing what my next step would be if my next CT scans shows tumor growth, so we didn't go too deep on the issue. My last scan,after completing the NY-ES01 trial, showed a 50% reduction. I get scanned again on Wednesday.
Elodie Espesset said:
Sean, does that mean the trial is not on hold anymore? They had put it on hold in November to review inclusion/exclusion criteria...
Sean Smith said:My oncologist was talking about this trial last week:
Phase 3 Study to Treat Patients With Soft Tissue Sarcomas
The purpose of this study is to determine the efficacy and safety of aldoxorubicin in subjects with metastatic, locally advanced, or unresectable soft tissue sarcomas.
https://clinicaltrials.gov/ct2/show/NCT02049905?term=aldoxorubicin&...
Congrats on reduction and keep us posted. Best of luck with everything.
My daughter was on Votrient but only got 2 months out of that so glad to hear you got more time using that drug. She did go on to Trabectedin and that gave here 10 months allowing her to graduate high school and start college. Trabectedin has worked a long time for some folks so that might be an option for you. We then tried Gemcitabine and Docetaxel but did not have any success. She is now on high dose ifosfamide and just finished here second two week cycle. She is two weeks on and two weeks off. We just had scans and the tumors have shrunk. We are starting the third round this Tuesday. This may be an option for you. We are also awaiting the start of the MK-3475 drug at CHOP and will consider that then. Also, looking into the drug EZH2 inhibitor EPZ-6438(E7438). My daughter did not qualify for the NYESO trial at the NIH/CHOP. We visited Dana Farber to talk about Aldox trial but my understanding is that it is still on hold. All the best. Trish
Here is another trial:
https://www.clinicaltrials.gov/ct2/show/NCT02267083
This is a drug similar to doxorubicin but without the cardiotoxicity. Here is some information from the manufacturer:
http://www.gempharmaceuticals.com/gpx-150-for-cancer.shtml
Phase 1 trial results:
http://www.gempharmaceuticals.com/pdf/gem-asco-abstract-2013.pdf
Thanks Elodie!
I went to Moffitt and they have a trial that I'm eligible for. It's this trial below. Has anyone heard of this or have tried it?
https://clinicaltrials.gov/ct2/show/NCT02261220?term=d4190c00010&rank=1
I'm bummed it's a phase 1 but I know every trial has to be a phase 1. Feeling optimistic because it's an immunotherapy and not traditional toxic chemo.
How was your experience with Votrient? Side effects? Would you recommend it?
Hi Kelly - I do recommend Votrient because it have me 8 months of life. It shrunk my tumors and I had some side effects but they were tolerable. The side effects were fatigue, cough, body hair turned comp white, dry mouth & loss of appetite. Those were the most common for me. From what I’ve read & based on experience, Votrient does work stabilizing and shrinking but not long-term. Hope this helps.
I did it for 5 months. My hair turned white, but I didn't have much left anyway. Gemzar and Taxotere took it away and it never came back.
Other than the hair color I didn't really notice any side effects. Sometimes a little bit of fatigue.
Unfortunately my tumor kept growing while on it.
Here is a study that took a look at these compounds:
http://www.ncbi.nlm.nih.gov/pubmed/24917416
I know of one person with ss who was on one of these anti-pdl1 drugs (not sure which one) but this lady also was on the NY-ESO-1 trial at NIH prior to that so she had the modified T-cell at the time of the trial. The trial worked out well for her for a while with no evidence of disease at some point but last time I heard from her, the disease had come back and she also had some breathing issues which may be related to late side effects of her past treatments (not sure which one but she did have SBRT to her lungs between the NY-ESO-1 trial and the anti-pdl1 trial).
Definitely something worth trying in my opinion...
Aperez said:
Thanks Elodie!
I went to Moffitt and they have a trial that I'm eligible for. It's this trial below. Has anyone heard of this or have tried it?
https://clinicaltrials.gov/ct2/show/NCT02261220?term=d4190c00010&am...
I'm bummed it's a phase 1 but I know every trial has to be a phase 1. Feeling optimistic because it's an immunotherapy and not traditional toxic chemo.
There's been many discussions about votrient (also called pazopanib) on this site that you can find here:
http://forum.synovialsarcomasurvivors.org/forum/topic/search?q=votrient
One side effect that is often mentioned besides the ones above is high blood pressure. One typical recommendation is to take votrient in the evening instead of morning. Also many people had to decrease the recommended dose but still were getting benefits with a reduced dose.
Kelly said:
How was your experience with Votrient? Side effects? Would you recommend it?
Thank you so much, this is great information and for my exact agents used. I really appreciate that. That is actually one of my biggest concerns that I will have problems breathing. My tumors are in my lungs now and I have fluid and inflammation in my lungs from a recent pnemonia and my last dose of radiation. I have an appt to cover the trial tomorrow and I'm going to ask more detailed about the breathing risks. I wonder what agent or why that happens?? Thanks again!
Elodie Espesset said:
Here is a study that took a look at these compounds:
http://www.ncbi.nlm.nih.gov/pubmed/24917416
I know of one person with ss who was on one of these anti-pdl1 drugs (not sure which one) but this lady also was on the NY-ESO-1 trial at NIH prior to that so she had the modified T-cell at the time of the trial. The trial worked out well for her for a while with no evidence of disease at some point but last time I heard from her, the disease had come back and she also had some breathing issues which may be related to late side effects of her past treatments (not sure which one but she did have SBRT to her lungs between the NY-ESO-1 trial and the anti-pdl1 trial).
Definitely something worth trying in my opinion...
Aperez said:Thanks Elodie!
I went to Moffitt and they have a trial that I'm eligible for. It's this trial below. Has anyone heard of this or have tried it?
https://clinicaltrials.gov/ct2/show/NCT02261220?term=d4190c00010&am...
I'm bummed it's a phase 1 but I know every trial has to be a phase 1. Feeling optimistic because it's an immunotherapy and not traditional toxic chemo.