I have already exhausted lifetime dose of Doxorubicin and Ifosfamide and IInd line of chemo with Gemcitabine and Docetxle didn't work now I have been advised therapy with Trabectadin.
If anybody has similar type of experience, kindly share the same with me.
Member imaFighter91 had 5 years stable disease with yondelis:
http://forum.synovialsarcomasurvivors.org/profile/imaFighter91?xg_source=profiles_memberList
Try yo contact her directly as she may not see this discussion. She has the most experience with this drug.
It doesn't work for everybody. But it's worth the try...
How are you doing on the Trabectadin? I was on it for almost 5 years (64 cycles) before it stopped working on one of my tumors, but for the most part I had a great response. It was tough in the beginning, but as my body got use to it, it was pretty much an easy regimen for me. I experienced very little side effects, with the exception of fatigue. It only lasted for 4 days and I was able to have some normalcy. Low white and red blood counts were a problem in the beginning. I never had to have any transfusions like I did with the doxorubicin, Gemzar/taxotere combination. Hope you're having a good response.
I have been given two cycles of Trabectadin. Side effects are there but reduces after 3-4 days. Blood counts
were within limits after one cycle. After 20 days of IInd cycle CT of chest will be done to evaluate respose of
the tumor.
imaFighter91 said:
How are you doing on the Trabectadin? I was on it for almost 5 years (64 cycles) before it stopped working on one of my tumors, but for the most part I had a great response. It was tough in the beginning, but as my body got use to it, it was pretty much an easy regimen for me. I experienced very little side effects, with the exception of fatigue. It only lasted for 4 days and I was able to have some normalcy. Low white and red blood counts were a problem in the beginning. I never had to have any transfusions like I did with the doxorubicin, Gemzar/taxotere combination. Hope you're having a good response.
I am on Yondelis for 19 (17 months) cycles and still doing it. It is keeping my tumor at bay. Every two cycles, you do a ct scan to check on your progress. Side effects for me are abdominal bloating and fatigue for 4 days. You do not lose your hair. If you have questions, please let me know.
Thanks
Gavin said:
I am on Yondelis for 19 (17 months) cycles and still doing it. It is keeping my tumor at bay. Every two cycles, you do a ct scan to check on your progress. Side effects for me are abdominal bloating and fatigue for 4 days. You do not lose your hair. If you have questions, please let me know.
I have completed Three cycles with Yondelis.Response to my disease after two cycles has been stable. My side effects are increasing with every cycle as dose is also being increased gradually to the prescribed limit. Side effects include feeling lethargic, most of the food doesn't taste good, worst part is that all of these are lasting for almost two weeks. My WBC and Platelets have also gone down after Third cycle.
Gavin said:
I am on Yondelis for 19 (17 months) cycles and still doing it. It is keeping my tumor at bay. Every two cycles, you do a ct scan to check on your progress. Side effects for me are abdominal bloating and fatigue for 4 days. You do not lose your hair. If you have questions, please let me know.
I have completed Three cycles with Yondelis.Response to my disease after two cycles has been stable. My side effects are increasing with every cycle as dose is also being increased gradually to the prescribed limit. Side effects include feeling lethargic, most of the food doesn't taste good, worst part is that all of these are lasting for almost two weeks. My WBC and Platelets have also gone down after Third cycle.
vkr said:
I have been given two cycles of Trabectadin. Side effects are there but reduces after 3-4 days. Blood counts
were within limits after one cycle. After 20 days of IInd cycle CT of chest will be done to evaluate respose of
the tumor.
imaFighter91 said:How are you doing on the Trabectadin? I was on it for almost 5 years (64 cycles) before it stopped working on one of my tumors, but for the most part I had a great response. It was tough in the beginning, but as my body got use to it, it was pretty much an easy regimen for me. I experienced very little side effects, with the exception of fatigue. It only lasted for 4 days and I was able to have some normalcy. Low white and red blood counts were a problem in the beginning. I never had to have any transfusions like I did with the doxorubicin, Gemzar/taxotere combination. Hope you're having a good response.
The side effects did last for two weeks when I first started. It gets better later. I switched from chemo every three weeks to every five weeks because my WBC and platelets were not recovering.
At times during my treatment, I had to extend my cycles, but for the most part I would get a neupogen shot if my white blood counts were low and then get the treatment the very next day. Out of the 64 cycles, I rarely had a problem with platelets. I probably had low platelets about three times during those cycles. Do your research on foods that help increase your white blood counts. I try to help battle this disease with nutrition and supplements. But, you must do your research first. You don't decrease the effectiveness of the drug. Stay positive and be well!
Neupogen is being given to me after every cycle but this time my platelets are low while WBC is likely to recover
within time for next chemo. As far as I understand Yondelis was approved in 2010 only and still is in Phase III
trials in US. When did you start your treatment with Yondelis, was it part of some trial?
imaFighter91 said:
At times during my treatment, I had to extend my cycles, but for the most part I would get a neupogen shot if my white blood counts were low and then get the treatment the very next day. Out of the 64 cycles, I rarely had a problem with platelets. I probably had low platelets about three times during those cycles. Do your research on foods that help increase your white blood counts. I try to help battle this disease with nutrition and supplements. But, you must do your research first. You don't decrease the effectiveness of the drug. Stay positive and be well!
Where to you live? Yes, we are still in trial here in the US...not sure why...where I was getting treatment, it seemed to be helping a lot of people. Maybe the US is a more strict in terms of their approvals. I started in a Phase III trial in 2005 and that ended for me in 2010, as one of my tumors became non-responsive. I did very well. I don't understand why they are not giving you Neulasta instead of Neupogen. Neulasta lasts longer than neupogen. You might want to inquire about that. When my body got use to the treatment I had very few incidents of low platelets. You might try nutrition as a means for boosting the immune system. There is so much information on the internet that is helpful in this area. Keep strong.
Gina
I live in India and Yondelis is being given as treatment and not as a trial. I am being given Neulastim not Neupogen which I mentioned by mistake. How are you doing since 2010 after stopping treatment with Yodelis?
Wow, India is very progressive. I'm actually on a different regimen now. I was on Ifosamide and now I'm on Votrient which is a chemo pill. It's easy, but not sure how it's working. Will know that on Monday, as I will go for a CT scan. This seems to be an on-going journey for me. So, now, I've decided it's time to get more aggressive with the nutrition and supplemental vitamin approach. I have made lifestyle changes, but have not been very aggressive about it before. Now is the time to take on a new approach. I'm getting pretty exhausted with the standard treatment and I'm getting very limited in terms of options. Hope the trabectadine works well for you.
Best of luck for your CT
imaFighter91 said:
Wow, India is very progressive. I'm actually on a different regimen now. I was on Ifosamide and now I'm on Votrient which is a chemo pill. It's easy, but not sure how it's working. Will know that on Monday, as I will go for a CT scan. This seems to be an on-going journey for me. So, now, I've decided it's time to get more aggressive with the nutrition and supplemental vitamin approach. I have made lifestyle changes, but have not been very aggressive about it before. Now is the time to take on a new approach. I'm getting pretty exhausted with the standard treatment and I'm getting very limited in terms of options. Hope the trabectadine works well for you.
My husband used votrient for 3 months and didn't do anything but lower his WBC count again. I hope it works for you. Best of luck.
The Connective Tissue Oncology Society met in Prague last week. A European study looked at the response of patients with SS to trabectedin.The results are listed on the session 2 posters (poster#107):
A subset of patients were responding with a progression free survival of 7 months.
My fourth cycle with Yondelis was postponed by a week because of low platelets and also dose was reduced. In such cases which option is better (i) Reduce the dose and try to keep cycle as close to three weeks as possible Or (ii) Increase the gap and try to keep dose as close to max prescribed as possible.
imaFighter91 said:
Where to you live? Yes, we are still in trial here in the US...not sure why...where I was getting treatment, it seemed to be helping a lot of people. Maybe the US is a more strict in terms of their approvals. I started in a Phase III trial in 2005 and that ended for me in 2010, as one of my tumors became non-responsive. I did very well. I don't understand why they are not giving you Neulasta instead of Neupogen. Neulasta lasts longer than neupogen. You might want to inquire about that. When my body got use to the treatment I had very few incidents of low platelets. You might try nutrition as a means for boosting the immune system. There is so much information on the internet that is helpful in this area. Keep strong.
Gina
My fourth cycle with Yondelis was postponed by a week because of low platelets and also dose was reduced. In such cases which option is better (i) Reduce the dose and try to keep cycle as close to three weeks as possible Or (ii) Increase the gap and try to keep dose as close to max prescribed as possible
Gavin said:
I am on Yondelis for 19 (17 months) cycles and still doing it. It is keeping my tumor at bay. Every two cycles, you do a ct scan to check on your progress. Side effects for me are abdominal bloating and fatigue for 4 days. You do not lose your hair. If you have questions, please let me know.