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GEMCITABINE and DACARBAZINE. Could you share your experience?


#1

Hello,

My mother was diagnosed SS on Dec 2011. She has a tumor in her leg, which goes around blood-vessel, bone and nerve. Firstly, she had Doxorubicin and Ifosfamide treatment, after that radiation. The treatment helped for 4 month. However, on November 2012 new tumor appeared next to the old tumor size 7x8x7. We got Votrient for 2 months, however, the doctor stopped, because the tumor continued to grow. After that, we got 3 cycles of high dose of Ifosfamide. However, the tumor continued to grow and after 3 cycles the treatment was canceled. Now we are waiting for the treatment already 3 weeks until the medicine will be approved. Doctor says we have two options.

opptions:

1. GEMCITABINE and DACARBAZINE combination

or

2. Yondelis (Trabectedin)

Could you share your experience about these treatments?


#2

The combination gemcitabine and dacarbazine is kind of new. You can find results from the phase II trial here:

http://www.ncbi.nlm.nih.gov/pubmed/21606430

The abstract doesn't give results by subtypes though. My guess is this combination is interesting for leiomyosarcoma but not so much for synovial sarcoma because there is currently a trial using this drug for leiomyosarcoma while using high dose ifosfamide for synovial sarcoma:

http://clinicaltrials.gov/ct2/show/NCT01710176

Yondelis is a better bet in my opinion.


#3

I was Trabectedin for 5 years. It was tough at first, but the side effects got better as time went on. I experienced nausea and fatigue for a few days, low blood counts and once I had a low platelet count, but the medication (Compazine) helped the nausea, and I was given Neupogen for the low blood counts and the fatigue subsided after about 4 days. The regimen was perfect for me. Every 21 days, I received a 24-hr infusion, but after 3 years let me extend my treatment to once a month. It worked very well. I had mixed results, but for the most part it calcified some of my tumors, which was good. I had a good quality of life on this regimen.

I also have experience with gemcitabine (Gemzar) and Darcarbazine, but not in that combination. I had the regimen Gemzar/Taxotere and it did stop the growing and spreading of my tumors, but then I was taken off after two cycles and entered the Yondelis trial. The Gemzar/Taxotere regimen wasn't too bad. I remember experiencing dry mouth and some fatigue.

I was also on Darcarbazine and I received this for 4 days a month. I had no side effects with this drug...it was pretty easy. Since my tumor growth seem to be pretty stable, the Dr. decided to switch me to Votrient and so far, I'm doing well after making some dosage adjustments. This is a pretty tough regimen, but I'm hanging with it. June will mark my 22 years of survival with SS. So, we can survive in spite of our diagnosis!

Hope this helps and I hope your mom is able to find a regimen that will work for her.

Keep Hope Alive!


#4

Elodie, Thank you for sharing! The information is useful and helpful!

The high dose of IFO didn't work for us. We applied for Yondelis, but it takes ages to get the approval and we are still not sure if we get it or not. The doctor says we cannot wait, because its been 4-5 weeks with no treatment. Until its not clear, doctor wants to try gem and dac combination.

I hope Yondelis will be approved for us and we will be able to wait until this trail will come up with the results.



Elodie Espesset said:

The combination gemcitabine and dacarbazine is kind of new. You can find results from the phase II trial here:

http://www.ncbi.nlm.nih.gov/pubmed/21606430

The abstract doesn't give results by subtypes though. My guess is this combination is interesting for leiomyosarcoma but not so much for synovial sarcoma because there is currently a trial using this drug for leiomyosarcoma while using high dose ifosfamide for synovial sarcoma:

http://clinicaltrials.gov/ct2/show/NCT01710176

Yondelis is a better bet in my opinion.


#5

imaFighter91, thank you for sharing your experience!

Wow, Im impressed. Stories like yours give me more energy to fight and stay strong. I hope the effect will be same for us, the only one thing i pray for is to stop it.

I worry a bit, because Votrient and later high dose of IFO did not stop the tumor. I hope the rest medicine will be able to keep the tumor stable.

How big is your tumor? Did you have any chemo or treatment that did not work for your?


imaFighter91 said:

I was Trabectedin for 5 years. It was tough at first, but the side effects got better as time went on. I experienced nausea and fatigue for a few days, low blood counts and once I had a low platelet count, but the medication (Compazine) helped the nausea, and I was given Neupogen for the low blood counts and the fatigue subsided after about 4 days. The regimen was perfect for me. Every 21 days, I received a 24-hr infusion, but after 3 years let me extend my treatment to once a month. It worked very well. I had mixed results, but for the most part it calcified some of my tumors, which was good. I had a good quality of life on this regimen.

I also have experience with gemcitabine (Gemzar) and Darcarbazine, but not in that combination. I had the regimen Gemzar/Taxotere and it did stop the growing and spreading of my tumors, but then I was taken off after two cycles and entered the Yondelis trial. The Gemzar/Taxotere regimen wasn't too bad. I remember experiencing dry mouth and some fatigue.

I was also on Darcarbazine and I received this for 4 days a month. I had no side effects with this drug...it was pretty easy. Since my tumor growth seem to be pretty stable, the Dr. decided to switch me to Votrient and so far, I'm doing well after making some dosage adjustments. This is a pretty tough regimen, but I'm hanging with it. June will mark my 22 years of survival with SS. So, we can survive in spite of our diagnosis!

Hope this helps and I hope your mom is able to find a regimen that will work for her.

Keep Hope Alive!


#6


Elodie Espesset said:

The combination gemcitabine and dacarbazine is kind of new. You can find results from the phase II trial here:

http://www.ncbi.nlm.nih.gov/pubmed/21606430

The abstract doesn't give results by subtypes though. My guess is this combination is interesting for leiomyosarcoma but not so much for synovial sarcoma because there is currently a trial using this drug for leiomyosarcoma while using high dose ifosfamide for synovial sarcoma:

http://clinicaltrials.gov/ct2/show/NCT01710176

Yondelis is a better bet in my opinion.


#7

This information may help anybody who is trying to get on a Yondelis trial. The only site that I know of that is accepting patients is at the medical university of South Carolina in Charleston. Dr. Andrew Kraft is the investigator and yondelis is available for compassionate use for synovial sarcoma. Monica Przybylek is the first contact. Her number is 843-■■■■■■■■. Monica got my son on Dr. Kraft’s schedule within a week and he started chemo 7 days later. Hope this information helps.


#8

Hello,

I have a léïomyosarcome with mets in both lungs. Treatments are not exactly the same as for SS, but I had first Doxorubicin, after the "big" surgery, and when mets appeared, I had Gemcitabine alone. Combination with Dacarbazine was in trial (2008) in France and not approuved yet. Now it is. Gemcitabine cleaned my lungs in 3 months, but unfortunately I have a deficience in some protein, cytidine deaminase, so I could not metabolizate it correctly, and had awful neutropenias and aplasies.

We stopped the treatment. Mets reappeared. I had Yondelis, but only 4 sessions, for the same problem, not enough to have a good result.

I feeled nearly OK with gemzar, but very very tired with yondelis. I heard that dacarbazine has hard side effects (nauseas), but I know that the combination has good effects on tumors.

I cannot tell you wich one is better for you because our sarcomas are a bit different. If I could go on with gemzar, I would have done it !

Sorry not to be able to help you much more... Wish you good luck.

Anna


#9

My son was on for a few months and it did not do much for him. I have read good things about Yondelis, however, it is not approved for use in the USA to date. It sounds to me that the surgeons did not get clear margins.

Perhaps more surgery is warrented to gain clear margins. The surgeon may suggest this, he/she may even suggest amputation. Has your Mom had an MRI of the site? Of her lungs? There are more drugs out there so don't give up the fight! New drugs are found every day, new clinical trials are started often. Scientists are working every day. My thoughts are with you and your Mom.


#10

Deborah crabtree thank you for sharing!

Hope this information will help:)

Deborah crabtree said:

This information may help anybody who is trying to get on a Yondelis trial. The only site that I know of that is accepting patients is at the medical university of South Carolina in Charleston. Dr. Andrew Kraft is the investigator and yondelis is available for compassionate use for synovial sarcoma. Monica Przybylek is the first contact. Her number is 843-■■■■■■■■. Monica got my son on Dr. Kraft's schedule within a week and he started chemo 7 days later. Hope this information helps.

#11

Thank you, annastomose!

I will try to find more information about Gemzar and its effect on SS.

annastomose said:

Hello,

I have a léïomyosarcome with mets in both lungs. Treatments are not exactly the same as for SS, but I had first Doxorubicin, after the "big" surgery, and when mets appeared, I had Gemcitabine alone. Combination with Dacarbazine was in trial (2008) in France and not approuved yet. Now it is. Gemcitabine cleaned my lungs in 3 months, but unfortunately I have a deficience in some protein, cytidine deaminase, so I could not metabolizate it correctly, and had awful neutropenias and aplasies.

We stopped the treatment. Mets reappeared. I had Yondelis, but only 4 sessions, for the same problem, not enough to have a good result.

I feeled nearly OK with gemzar, but very very tired with yondelis. I heard that dacarbazine has hard side effects (nauseas), but I know that the combination has good effects on tumors.

I cannot tell you wich one is better for you because our sarcomas are a bit different. If I could go on with gemzar, I would have done it !

Sorry not to be able to help you much more... Wish you good luck.

Anna


#12

Ellen, thank you.

True, new drugs are found every day. because we are running out of opptions..

She has her mets in bones and few small begginings in lungs...

Ellen said:

My son was on for a few months and it did not do much for him. I have read good things about Yondelis, however, it is not approved for use in the USA to date. It sounds to me that the surgeons did not get clear margins.

Perhaps more surgery is warrented to gain clear margins. The surgeon may suggest this, he/she may even suggest amputation. Has your Mom had an MRI of the site? Of her lungs? There are more drugs out there so don't give up the fight! New drugs are found every day, new clinical trials are started often. Scientists are working every day. My thoughts are with you and your Mom.