We just found out today that Votrient has stopped working for our daughter only after about 4 months of being on the drug. We have an appointment next week to discuss next options. They are leaning toward Trabectedin. Anyone having success with Trabectedin? Any side effects? Other more promising options? Thank you....
Trabectedin is also called yondelis or ET-743. There are members who tried it and hopefully they will reply but if not, you can check the discussions panel. There's been discussions on the subject in the past. I believe the drug is not yet approved for sarcoma. Would be this part of a clinical trial or given on a compassionate basis?
Somebody mentioned recently having success with the following trial:
H Elodie - thanks for your feedback. I believe the Trabectedin would be provided on compassionate basis. I will know more Wednesday. As for TH-302, I asked the doctor about this before and they said she has already had alot of doxorubicin. I will be asking them about this again on Wednesday. Thank you for your feedback.
Elodie Espesset said:
Trabectedin is also called yondelis or ET-743. There are members who tried it and hopefully they will reply but if not, you can check the discussions panel. There's been discussions on the subject in the past. I believe the drug is not yet approved for sarcoma. Would be this part of a clinical trial or given on a compassionate basis?
Somebody mentioned recently having success with the following trial:
Thank you for this feedback. How was your husband able to just get TH-302? is it because he was in the trial before? do you know how to get just that for someone who has not been in the trial? Thank you
Townclerk said:
My husband is in that trial. He was on both drug but used up all of his allotment of doxorubicin. He remains on the trial drug th-302. He has been on that alone since September and the tumors in his lungs are still shrinking and some as so small they can no longer measure them. He can stay on this drug as long as it keeps working. Side effects are few. He looks and feels great and he is working full time. He just has to travel 1 1/2 hours to get it because it is still in the trial phase so Milwaukee is where he has to go. It has been very promising for us. Prayers for you.
Hi Trish,
Are you in the USA? I'm in the UK and we can have 5 lots of Trabectedin on our NHS but if it is working the drug company will let us carry on taking it. I will be starting it in the next few weeks and my oncologist says there good results. I know someone who is on it and the only side effect she has had so far is fatigue.
I do hope you get sorted and your daughter can have the trabectedin, hoping all goes well for your daughter.
Karen xxx
Kazzy - thank you for your feedback. We are in the US. I hope Trabectedin is successfull for you. My daughter is 17 and she is concerned she will lose her hair. I hope that does not occur with this drug. Glad to hear the only side effect of the person you know on it is only fatigue. Take care. Trish
Kazzy said:
Hi Trish,
Are you in the USA? I'm in the UK and we can have 5 lots of Trabectedin on our NHS but if it is working the drug company will let us carry on taking it. I will be starting it in the next few weeks and my oncologist says there good results. I know someone who is on it and the only side effect she has had so far is fatigue.
I do hope you get sorted and your daughter can have the trabectedin, hoping all goes well for your daughter.
Karen xxx
Hi Trish,
Your daughter will not lose her hair. She might get indigestion as one of the side effects. I was on Yondelis for more than 2 years. If you have any other questions, please let me know.
Gavin
Trish said:
Kazzy - thank you for your feedback. We are in the US. I hope Trabectedin is successfull for you. My daughter is 17 and she is concerned she will lose her hair. I hope that does not occur with this drug. Glad to hear the only side effect of the person you know on it is only fatigue. Take care. Trish
Kazzy said:Hi Trish,
Are you in the USA? I'm in the UK and we can have 5 lots of Trabectedin on our NHS but if it is working the drug company will let us carry on taking it. I will be starting it in the next few weeks and my oncologist says there good results. I know someone who is on it and the only side effect she has had so far is fatigue.
I do hope you get sorted and your daughter can have the trabectedin, hoping all goes well for your daughter.
Karen xxx
Hi Trish,
I understand why your daughter is worried about losing her hair, I would have been the same at 17. My oncologist told me that it can cause the hair to thin but not always. I think it is better to be aware of the facts just in case and then at least your daughter has prepared herself for this. Hopefully she will still have a lovely full head of hair.
Best wishes
Karen xxx
Gavin said:
Hi Trish,
Your daughter will not lose her hair. She might get indigestion as one of the side effects. I was on Yondelis for more than 2 years. If you have any other questions, please let me know.
Gavin
Trish said:Kazzy - thank you for your feedback. We are in the US. I hope Trabectedin is successfull for you. My daughter is 17 and she is concerned she will lose her hair. I hope that does not occur with this drug. Glad to hear the only side effect of the person you know on it is only fatigue. Take care. Trish
Kazzy said:Hi Trish,
Are you in the USA? I'm in the UK and we can have 5 lots of Trabectedin on our NHS but if it is working the drug company will let us carry on taking it. I will be starting it in the next few weeks and my oncologist says there good results. I know someone who is on it and the only side effect she has had so far is fatigue.
I do hope you get sorted and your daughter can have the trabectedin, hoping all goes well for your daughter.
Karen xxx
Here is a new report of a person who achieved complete remission with trabectedin when surgery was not an option anymore:
http://www.ncbi.nlm.nih.gov/pubmed/24638587
I had never heard of such a good lasting response before...
What good news. Thanks for finding this, Elodie!
Wow, fantastic news, sometimes hearing positive news can make such a difference.
Elodie - thanks for the report. It provides hope. Katie is tentatively scheduled to start Trabectedin next Friday. Praying for great results. All the best to you.
Wishing you lots of success Trish, hope Katie is doing ok. Xxx
I just came off the Votrient and went back to Trabectedin. I have great success on this drug. I did 64 rounds before one tumor became resistant. I came off and went on darcarbazine...failed, then I was placed on high dose Ifex (7 mnths)...stabilized! Then switched to Votrient for a year (failed...affected heart) Now I'm back on Trabectedin. Second round had a tumor to shrink! Pretty tough, but it's working!
Keep Hope Alive!
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imaFighter91 - so glad to hear this drug is working for you again. Katie had her first treatment last Friday, doing good today. Praying it is working. Are you still being treated by Dr. Sant Chawla? All the best. Trish
for my mother first 3 cycles had positive results. However, after 3 cycles she had 6 weeks delay (instead of 3 weeks) and yondelis stopped working due to delay..
I know this discussion is a year old, but I just came across this:
INTERPRETATION:
Trabectedin significantly reduced the risk of disease progression and death in patients with advanced translocation-related sarcoma after standard chemotherapy such as doxorubicin, and should be considered as a new therapeutic treatment option for this patient population.
I took this from http://www.ncbi.nlm.nih.gov/pubmed/25795406 Trabectedin monotherapy after standard chemotherapy versus best supportive care in patients with advanced, translocation-related sarcoma: a randomised, open-label, phase 2 study.
Sounds promising.
-Sheryl