Is anyone on long term use of Yondelis? I am currently on my 14th Yondelis treatment to treat synovial sarcoma in the pelvis? I am being treated at Dr. Chawla's. Treatment is usually every 3 or 4 weeks. Is anyone in the similar situation?
Thanks,
Gavin
I know of one lady who had 64 treatments of yondelis (5 1/2 years) before it stopped working. She is not a member here but she is a member of the Sarcoma Alliance and if you sign up to the Sarcoma Alliance, you could see her post here:
http://sa.sarcomaalliance.org/viewtopic.php?f=8&t=1540
She was also treated by Dr. Chawla...
My husband did it for 5 months? It stopped working for him. He also went to Dr. Chawla...I wonder if we say you there? Interesting? Hope it goes well for you!! Dont you think that office is NUTS! It's just busy busy busy and crazy there...lol
Dora
I just celebrated my 20th year, but sad to say it is back. 5 small tumors in the lymph nodes. I met with my oncologist today and have two suggested treatments - Yondelis or Pazopanib. The way it was explained to me was:
1. if Yondelis works it could stop and/or reduce the size of the nodules. At this point it is not DFA approved and experimental and I meet the criteria for testing.
2. Yondelis could be removed from the market and i should consider trying it prior to Prozonib which is FDA approved and will always be available.
3. Prozonib can only halt the progression of the disease and is only 20% effective.
If you could shed any light on your experiences it would be great! What side effects have you experienced? Can you still work on the treatments? etc???
Jim
My husband went through two rounds of yolondis/trabectidin without success unfortunately. Have you seen tumor shrinkage after 14 rounds? The side effects were not too bad compared to doxi/ifosTrabectidin combo which did not work either. Right now he is participating in a t-cell immunotherapy trial which is phase 1, and he is patient 1. We are very hopeful but won’t know results for several weeks. If the trial does not work, prozonib is next on the list I think.
Best to you and I so hope the yolondis does it’s job! This evil must be stopped!
Yondelis was very mild on my hubby as in side effects. One one problem he had was his liver levels would go up. He was in the ER a few times for pain there. He didnt lose his hair or anything like that. He was super sleepy the first few days but was fine after. Good Luck!!!!
jimK said:
I just celebrated my 20th year, but sad to say it is back. 5 small tumors in the lymph nodes. I met with my oncologist today and have two suggested treatments - Yondelis or Pazopanib. The way it was explained to me was:
1. if Yondelis works it could stop and/or reduce the size of the nodules. At this point it is not DFA approved and experimental and I meet the criteria for testing.
2. Yondelis could be removed from the market and i should consider trying it prior to Prozonib which is FDA approved and will always be available.
3. Prozonib can only halt the progression of the disease and is only 20% effective.
If you could shed any light on your experiences it would be great! What side effects have you experienced? Can you still work on the treatments? etc???
Jim
Hi Dora,
We might have crossed path at Dr. Chawla. Is your husband still treating there? Yes, that office is busy and "NUTS". I am going for another round of Yondelis treatment today.
Gavin
Dora Oquendo said:
My husband did it for 5 months? It stopped working for him. He also went to Dr. Chawla...I wonder if we say you there? Interesting? Hope it goes well for you!! Dont you think that office is NUTS! It's just busy busy busy and crazy there...lol
Dora
Hi Jim,
My main side effect from Yondelist is indigestion or bloating feeling. Your whole body muscles also aches or feel tired. The toxicity of the drugs mostly affects your liver. I take a lot of supplements to fight against the toxicity of the drugs. The side effect usually lasted about a week. Yondelis usually stop and/or reduced the size of the tumor when it works. It did not shrink my tumor but kept it at bay. You could use Yondelis as long as you want until it does not work on the tumor. There is no hair loss.
Gavin
Dora Oquendo said:
Yondelis was very mild on my hubby as in side effects. One one problem he had was his liver levels would go up. He was in the ER a few times for pain there. He didnt lose his hair or anything like that. He was super sleepy the first few days but was fine after. Good Luck!!!!
jimK said:I just celebrated my 20th year, but sad to say it is back. 5 small tumors in the lymph nodes. I met with my oncologist today and have two suggested treatments - Yondelis or Pazopanib. The way it was explained to me was:
1. if Yondelis works it could stop and/or reduce the size of the nodules. At this point it is not DFA approved and experimental and I meet the criteria for testing.
2. Yondelis could be removed from the market and i should consider trying it prior to Prozonib which is FDA approved and will always be available.
3. Prozonib can only halt the progression of the disease and is only 20% effective.
If you could shed any light on your experiences it would be great! What side effects have you experienced? Can you still work on the treatments? etc???
Jim
Thanks, my tumor did not shrink but Yondelis has been keeping it at bay. Best of luck to your husband too. Let us know how your husband is progressing.
Traceyb said:
My husband went through two rounds of yolondis/trabectidin without success unfortunately. Have you seen tumor shrinkage after 14 rounds? The side effects were not too bad compared to doxi/ifosTrabectidin combo which did not work either. Right now he is participating in a t-cell immunotherapy trial which is phase 1, and he is patient 1. We are very hopeful but won't know results for several weeks. If the trial does not work, prozonib is next on the list I think.
Best to you and I so hope the yolondis does it's job! This evil must be stopped!
Thanks.
Elodie Espesset said:
I know of one lady who had 64 treatments of yondelis (5 1/2 years) before it stopped working. She is not a member here but she is a member of the Sarcoma Alliance and if you sign up to the Sarcoma Alliance, you could see her post here:
http://sa.sarcomaalliance.org/viewtopic.php?f=8&t=1540
She was also treated by Dr. Chawla...
Thank you both for your insights. It is greatly appreciated. I guess all do some more research tonight to determine which way to go. Friday's my appointment with my pulmonologist and Monday with my new oncologist that has the ability to treat me with Yondelis. If I find anything interesting in my research I'll share in a post.
Thanks again,
Jim
Gavin said:
Hi Jim,
My main side effect from Yondelist is indigestion or bloating feeling. Your whole body muscles also aches or feel tired. The toxicity of the drugs mostly affects your liver. I take a lot of supplements to fight against the toxicity of the drugs. The side effect usually lasted about a week. Yondelis usually stop and/or reduced the size of the tumor when it works. It did not shrink my tumor but kept it at bay. You could use Yondelis as long as you want until it does not work on the tumor. There is no hair loss.
Gavin
Dora Oquendo said:Yondelis was very mild on my hubby as in side effects. One one problem he had was his liver levels would go up. He was in the ER a few times for pain there. He didnt lose his hair or anything like that. He was super sleepy the first few days but was fine after. Good Luck!!!!
jimK said:I just celebrated my 20th year, but sad to say it is back. 5 small tumors in the lymph nodes. I met with my oncologist today and have two suggested treatments - Yondelis or Pazopanib. The way it was explained to me was:
1. if Yondelis works it could stop and/or reduce the size of the nodules. At this point it is not DFA approved and experimental and I meet the criteria for testing.
2. Yondelis could be removed from the market and i should consider trying it prior to Prozonib which is FDA approved and will always be available.
3. Prozonib can only halt the progression of the disease and is only 20% effective.
If you could shed any light on your experiences it would be great! What side effects have you experienced? Can you still work on the treatments? etc???
Jim
Please tell Dr. Hendifar and Wyane and Vicki we said hello, my hubby's name is Paul Oquendo.