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Gemcitabine and Taxotere for Synovial Sarcoma


#1

After many month of having response to Ifosfamide, the drug is no longer working. So now I'm looking for another treatment. My Doctor recommends trying Gemcitabine and Taxotere. I haven't seen much supporting evidence that this is the best drug for Synovial Sarcoma though. From what I have read uterine leiomyosarcoma seems to respond very well, but little is documented about how other histologies respond.

Does anyone have any experience with these drugs? Does it seem like a reasonable next option? I have also tried doxil and ET-743, and neither of those drugs worked. Even though doxil didn't work, I thought maybe adriamycin would be a natural next choice of drugs to try.


#2

Indeed the combo Gemcitabine and taxotere doesn't sound like a great alternative. The best you can expect is probably a few months stability. Doxil is adriamycin in a formulation that targets the skin preferentially. So indeed if doxil didn't work, I guess it doesn't mean adriamycin would not work . But there is a lifetime limit when taking this drug. Have you thought about second opinions? I recommend Dr Rosen at NYU in New York (ph# 212 731 5758). Did you ever check if you were eligible for the NIH vaccine trial?

http://clinicalstudies.info.nih.gov/cgi/detail.cgi?A_2011-C-0113.html


#3

Thank you Elodie!

I'm going to New York to get a second opinion at Sloane Kettering this Friday. Unfortunately I have the wrong HLA blood type for the NIH vaccine trial . So unless the study expands to other HLA blood types this one won't be an option.

Other options are presented to me are to send a tumor sample to Target Now to have a molecular fingerprint of he tumor and possibly find an appropriate drug, and I am trying to take Palifosfomide through compassionate use. I know that it is a stabilized form of the active ingredient in IFOS, but have heard of patients that don't respond to IFOS having response to Palifosfomide. I get the impression that patients get a much higher dose of the active ingredient, then when it is activated in the body through IFOS. Votrient looks like it could be promising as well.

Are there any treatments that have worked, or are still working for you?

Thank you again for your response. I am feeling pretty disheartened by my options at the moment.


#4

Do you know what was the dose of ifosfamide you received? The response does depend on the dose and also on the number of days it is given. Not every oncologists follow the same protocol when giving ifosfamide. May be some patients are responding to palifosfamide and not ifosfamide because of the dose difference?

The only treatments I've had are cisplatin, doxorubicin and high dose ifosfamide. My lung tumors have been very slow growing and so far we took care of them mainly with surgery.

Votrient does look like an interesting option but what is scary to me is what might happen the day you have to stop it. I am afraid the tumor cells are just moving around in the body while waiting for the conditions for growth to be better... May be alternating the drugs would be good.


#5

2500 mg/m2 per day for 3 days. I guess this is a bit more than standard, but does not constitute high does ifosfomide. 2500, is what was recommended by Sloane Kettering but my local Doctor was going to start me at 2000. I guess Palifosfomide is a stabilized form of the active metabolite in IFOS (a formulation of isophosphoramide mustard with tris). So, I imagine that I would get almost as much of the active drug by taking Palifosfomide, as I would high dose ifosfomide.

I would like to look into surgery as well, but because of a previous upper left lobe lobectomy most surgeons don't see further surgery as reasonable. I have been looking into possibly doing ablation as an alternative. Thanks again for your helpful response.


#6

Indeed the amount you got is not too much. The last time I had high dose ifosfamide, it was a total of 28.9gm given in a continuous infusion over a 9 day period... Palifosfamide would be a good alternative. Are you not eligible for the trial? About surgery, I am not surprised they don't want to operate since you already lost one lobe. By the way, how is your breathing without it? How big is the tumor to remove?


#7

I'm not eligible for the phase 3 trail because of the chemo that I have already done. I worry that the process of taking this through compassionate use might be a long one. The company is willing to do it, but I am unsure of how long the FDA approval process will take.

My breathing is not so bad... I certainly get winded a lot more easily and am not able to be as active as I once was. I actually have several tumors in my right lung. The one that concerns me is one that is against the pleura in the lower lung and is about 3cm now. I would almost imagine them needing to remove my lower right lobe, and I'm guessing that would leave me with too little lung volume. I would prefer ablation, but am a little fearful about that as well. I haven't really heard of many Synovial patients doing RFA.


#8

I also don't know of anybody with synovial sarcoma who had RFA. Somebody has to be first... I did hear from an older gentleman with MFH who had RFA a few times and was pretty happy about it. By the way, did you read about the immunotherapy trial in France?

http://www.clinicaltrials.gov/ct2/show/NCT01469975

The trial should have already started but apparently they are late. There may be a problem with insurance as foreigners have to show their insurance covers treatments in Europe (although the trial itself is free).


#9

Yes, on this site initially. It looks very promising. It might be difficult for me and my family to relocate to France for a year or so though. At the very least I should see if I would be able to do the study with the health insurance that we have. I'm hoping it is so successful that it goes into stage II trail soon, and is being offered hear.