Hello. I am new to the group, as far as a member, but I have been following the discussions for some time. I was diagnosed with synovial sarcoma in my thigh in June of 2014, after 4 months of a misdiagnosis (that's a long story!). I went through AIM chemo from July-August of that year, with surgery in October. The tumor had invaded my femoral vein and I have a very wide excision, but my leg was spared.The tumor was completely viable--so chemo did not have any impact. I have some limitations with that leg, but it is manageable. I had been scanned every 3 months, and on my 6 month (post op) scans, a few new nodules were found in both lungs. My oncologist at that time felt the only option for me would be clinical trials, and encouraged me to look for a larger sarcoma center (I had previously done that when I was first diagnosed). So off I went and found an wonderful oncologist at another facility, where there is a large volume of sarcoma patients. She advised me to wait and see and I was monitored every 2 months with scans. This went on for 6 months, meanwhile, the nodules would grow fairly slowly, but then there would be more. By November of 2015, the thoracic surgeon reviewed my scans and advised to try another round of chemo ( Gemcitabine and docetaxel) and review the scans after 6 rounds. After the chemo, the nodules continued to grow and multiply. At that point (in March of this year), it appeared that there were 7-8 nodules in the left lung and 5-6 in the right. Surgery was done to remove the nodules, and he removed 15 nodules out of my left lung (all viable synovial sarcomas) and 13 out of my right lung.
The dilemma now is whether or not to start a growth inhibitor such as Votrient. My onocologist was very discouraged that I had so many tumors and that they were all positive. She felt that they will come back in a matter of months. Her group felt that because I am considered to be "no evidence of disease," that putting me on Votrient is not recommended at this time. So I'm supposed to wait unitl they come back so I can have measurable disease? I dont' want to do that! I felt that I've been "waiting" all along with negative outcomes! It seems that if they come back while I am on Votrient, then we'll know it's not working! I also asked if surgery would be performed again if they come back, and her response was no, that an embolization/ablation would be performed.
Just looking to see what others have encountered of have any experience with this. I am being treated at a well respected Sarcoma Center in NYC. Thank you
There is no published data on maintenance therapy with votrient for patients with no evidence of disease, as far as I know. Besides not knowing if there is any potential benefit from taking votrient at this point, you may experience a decrease in quality of life with this drug. My oncologist, also in NYC, offered me votrient as maintenance therapy but I declined because I'd rather enjoy a treatment-free life for as long as I can. If you really want to try votrient, I can give you his references.
Were your tumors tested to see if they expressed NY-ESO-1?
Hi, I’ll give you my thoughts on this case as my oncologist stated the same thing regarding being NED. I made it nearly 30 months before SS metastasize to my left lung. At first there were only 4 nodules and they were removed last April. The nodules were all small less than 20mm. After the surgery the oncologist said we will wait and watch and no further treatment is necessary. Well that was on 4/1/15, fast forward 5 weeks and I was having tremendous pain around the lower left lung. I had another CT and 5.5cm tumor was found on my diaphragm. I completed 3 rounds of high dose Ifos before having another surgery. I also had a pleurodesis to seal the lung as it kept filling with blood. After this second VATS the surgeon stated the tumor looked necrotic, but had morphed into my diaphragm and he couldn’t remove it all. By now it’s October of 2015 and my oncologist said we can try to zap that area with radiation or wait and watch. I went and met with a radiation oncologist at MD Anderson and was told that radiation would be a no go as my entire left lung including the lining as well as the diaphragm would need radiation. The radiation oncologist stated I would not benefit from this and it would put me in more pain than I was already in from inflammation. Before I left MD Anderson I was told to strongly consider starting Votrient even though I was technically considered NED. I took this information to my local oncologist and was told we should wait and watch and not to start Votrient due to the harsh side effects and the fact that there’s no measurable disease. Fast forward 2.5 months to January of this year and scans show 2 tumors around 1.5cm. I started Doxil and completed two rounds before being scanned again. Next scan was 6 weeks later and showed 4 tumors all between 2-4.5cm I stopped Doxil and started Votrient. I took 600mg of Votrient daily for 6 weeks before getting a new scan. I was unable to take 800mg of Votrient due to extreme fatigue and muscle weakness. I’m an athlete so I live to ride my bike not to be stuck on a couch. The latest scan as of 4/22/16 showed the tumors are still growing while on Votrient. I now have 5 tumors with the two largest nearing 6cm. I should note my tumors are in the pleura of the lung which makes it quite painful especially when I’m cycling. So now I’m trying 400mg of Votrient and 1mg of Sirolimus to see if this will stop the growth. I’m also going to Northwestern tomorrow to meet with the chief thoracic surgeon regarding a pneumonectomy of the left lung. Obviously this is the last thing I want as I need my lungs for cycling, but at the same time, I’m tired of being in pain everyday. Sorry to compose this long message, but I often ask myself, what would my situation be like had a listened to MD Anderson and started the Votrient back before things got out of control? I wish you the best of luck with your decision.
I was diagnosed with SS on my upper right thigh and it was also in casing my main vein so the first thing that was done was a majorly operation they had to remove my main vein as well as tumor. Then i was advised to do 30 cycles if radiotherapy then 6 cycles of chemo therapy every 21 days I will go in for 1 cycle and that included 2 medicines doxorubicin and ifosfamide 2 know chemotherapy medicines I would have 3 bags of each medicine on a single cycle.
Hope that was useful and hope you guys get well soon. Hoping one day someone will manage to find a cure for all cancer patients.
Did you try yondelis allready? I would first try that instead of votrient. And if there is nothing on the scans… I wouldn’t take anything. Enjoy life treatment free as long as you can, is my advice. Votrient did do permanent damage to my body…
I was diagnosed in the ER following an automobile accident in August of 2014 when they took chest x-rays to rule out internal injuries. I have several lesions in my lungs they said. What a crazy day.
My name is Trent. I’m 35 and I have a beautiful wife and 4 children. Although that day turned our lives upside down it was a blessing in disguise because I was not having symptoms that I felt were doctor worthy. I thought I just needed a massage or an adjustment. I have one big tumor in my right lung that protrudes from the back of the 2nd and 3rd ribs and into the lining of the lung. This is the only thing that hurts me. All the other tumors are small and metastasized into both lungs all in the lining. I have no breathing problems or other clinical evidence of cancer. It is really weird.
While recovering in the hospital from post accident surgery to repair my left arm I was immediately approached by my now local oncologist. He referred us to MD Anderson and it was recommended we start Ifos famine immediately. 6 cycles of that with scans and follow up with MDA every 6 weeks. That slowed the growth down and we were supposed to start votrient then but MDA suggested 6 cycles of Adriamycin. We went for it. All 12 cycles were in patient about 6 days each and let me tell you that sucked for everyone. Those treatments stopped the growth to “no significant change”. I then took 2 months off from all medicine. 6 weeks after starting oral Votrient my scans showed a reduction in all tumors size except maybe 1 or 2. Yay! First good news in a while. I take 400mg twice daily. I can reduce the dose if I am having tough days. My side effects consist of GI upset, loss of appetite, irritability, fatigue, and slight depression. All these are usually managed with medicine including cannabis. I have down days but nothing as bad as when I was on IV chemo.
Be your own advocate. Especially with medical staff. They have lots of other patients they deal with every day not just you and your family. They are human still that aren’t perfect. You have just you to take care of, medically, and you have to take care of you. Speak up and Ask lots of questions until you understand so well you could teach it to someone else. Don’t worry about their response or hurried attitude.
I hope this is helpful. Thank you for letting me share. May God bless you all.
Thank you for your insight. I would love to review the references, if you would not mind providing them to me. I will ask about NY-ESO-!, but will ask. I know my tumor did not meet criteria for the vaccine trial. Thanks again.
Elodie Espesset said:
There is no published data on maintenance therapy with votrient for patients with no evidence of disease, as far as I know. Besides not knowing if there is any potential benefit from taking votrient at this point, you may experience a decrease in quality of life with this drug. My oncologist, also in NYC, offered me votrient as maintenance therapy but I declined because I'd rather enjoy a treatment-free life for as long as I can. If you really want to try votrient, I can give you his references.
Were your tumors tested to see if they expressed NY-ESO-1?
Thank you so much for your story and experience. I feel like I've been "behind the 8 ball" since this whole nightmare started, and want to be proactive. I was hoping that surgery would have improved my prognosis, and I feel like I should be doing something, or taking something, to try to kill any cells floating around trying to multiply in my lungs again, otherwise what was the purpose or reason for having the surgery in the first place? Thanks again.
Nschaper87 said:
Hi, I'll give you my thoughts on this case as my oncologist stated the same thing regarding being NED. I made it nearly 30 months before SS metastasize to my left lung. At first there were only 4 nodules and they were removed last April. The nodules were all small less than 20mm. After the surgery the oncologist said we will wait and watch and no further treatment is necessary. Well that was on 4/1/15, fast forward 5 weeks and I was having tremendous pain around the lower left lung. I had another CT and 5.5cm tumor was found on my diaphragm. I completed 3 rounds of high dose Ifos before having another surgery. I also had a pleurodesis to seal the lung as it kept filling with blood. After this second VATS the surgeon stated the tumor looked necrotic, but had morphed into my diaphragm and he couldn't remove it all. By now it's October of 2015 and my oncologist said we can try to zap that area with radiation or wait and watch. I went and met with a radiation oncologist at MD Anderson and was told that radiation would be a no go as my entire left lung including the lining as well as the diaphragm would need radiation. The radiation oncologist stated I would not benefit from this and it would put me in more pain than I was already in from inflammation. Before I left MD Anderson I was told to strongly consider starting Votrient even though I was technically considered NED. I took this information to my local oncologist and was told we should wait and watch and not to start Votrient due to the harsh side effects and the fact that there's no measurable disease. Fast forward 2.5 months to January of this year and scans show 2 tumors around 1.5cm. I started Doxil and completed two rounds before being scanned again. Next scan was 6 weeks later and showed 4 tumors all between 2-4.5cm I stopped Doxil and started Votrient. I took 600mg of Votrient daily for 6 weeks before getting a new scan. I was unable to take 800mg of Votrient due to extreme fatigue and muscle weakness. I'm an athlete so I live to ride my bike not to be stuck on a couch. The latest scan as of 4/22/16 showed the tumors are still growing while on Votrient. I now have 5 tumors with the two largest nearing 6cm. I should note my tumors are in the pleura of the lung which makes it quite painful especially when I'm cycling. So now I'm trying 400mg of Votrient and 1mg of Sirolimus to see if this will stop the growth. I'm also going to Northwestern tomorrow to meet with the chief thoracic surgeon regarding a pneumonectomy of the left lung. Obviously this is the last thing I want as I need my lungs for cycling, but at the same time, I'm tired of being in pain everyday. Sorry to compose this long message, but I often ask myself, what would my situation be like had a listened to MD Anderson and started the Votrient back before things got out of control? I wish you the best of luck with your decision.
Thank you so much for sharing your story and it is so hard to second guess ourselves. I did not want to have preop radiation prior to removing the primary tumor, and the big guns (chemo) did nothing to shrink or kill any part of the tumor. I had post op radiation, but wondered if preop radiation would have been the way to go.....now with mets 6 months after the original surgery......Good luck to you as well.
Nschaper87 said:
Hi, I'll give you my thoughts on this case as my oncologist stated the same thing regarding being NED. I made it nearly 30 months before SS metastasize to my left lung. At first there were only 4 nodules and they were removed last April. The nodules were all small less than 20mm. After the surgery the oncologist said we will wait and watch and no further treatment is necessary. Well that was on 4/1/15, fast forward 5 weeks and I was having tremendous pain around the lower left lung. I had another CT and 5.5cm tumor was found on my diaphragm. I completed 3 rounds of high dose Ifos before having another surgery. I also had a pleurodesis to seal the lung as it kept filling with blood. After this second VATS the surgeon stated the tumor looked necrotic, but had morphed into my diaphragm and he couldn't remove it all. By now it's October of 2015 and my oncologist said we can try to zap that area with radiation or wait and watch. I went and met with a radiation oncologist at MD Anderson and was told that radiation would be a no go as my entire left lung including the lining as well as the diaphragm would need radiation. The radiation oncologist stated I would not benefit from this and it would put me in more pain than I was already in from inflammation. Before I left MD Anderson I was told to strongly consider starting Votrient even though I was technically considered NED. I took this information to my local oncologist and was told we should wait and watch and not to start Votrient due to the harsh side effects and the fact that there's no measurable disease. Fast forward 2.5 months to January of this year and scans show 2 tumors around 1.5cm. I started Doxil and completed two rounds before being scanned again. Next scan was 6 weeks later and showed 4 tumors all between 2-4.5cm I stopped Doxil and started Votrient. I took 600mg of Votrient daily for 6 weeks before getting a new scan. I was unable to take 800mg of Votrient due to extreme fatigue and muscle weakness. I'm an athlete so I live to ride my bike not to be stuck on a couch. The latest scan as of 4/22/16 showed the tumors are still growing while on Votrient. I now have 5 tumors with the two largest nearing 6cm. I should note my tumors are in the pleura of the lung which makes it quite painful especially when I'm cycling. So now I'm trying 400mg of Votrient and 1mg of Sirolimus to see if this will stop the growth. I'm also going to Northwestern tomorrow to meet with the chief thoracic surgeon regarding a pneumonectomy of the left lung. Obviously this is the last thing I want as I need my lungs for cycling, but at the same time, I'm tired of being in pain everyday. Sorry to compose this long message, but I often ask myself, what would my situation be like had a listened to MD Anderson and started the Votrient back before things got out of control? I wish you the best of luck with your decision.
Thank you and I have never had pain and thought I had a blood clot in my leg initially back in 2014. Thank you for sharing your story and I am glad you are having a response to Votrient. I remember all too well being on Adriamycin and Ifosfamide--it was hell. I appreciate your input and may God bless us all. I am married with two teenage sons. I am doing my best to keep up with their many activities! Thanks again.
Trent Gibson said:
I was diagnosed in the ER following an automobile accident in August of 2014 when they took chest x-rays to rule out internal injuries. I have several lesions in my lungs they said. What a crazy day. My name is Trent. I'm 35 and I have a beautiful wife and 4 children. Although that day turned our lives upside down it was a blessing in disguise because I was not having symptoms that I felt were doctor worthy. I thought I just needed a massage or an adjustment. I have one big tumor in my right lung that protrudes from the back of the 2nd and 3rd ribs and into the lining of the lung. This is the only thing that hurts me. All the other tumors are small and metastasized into both lungs all in the lining. I have no breathing problems or other clinical evidence of cancer. It is really weird. While recovering in the hospital from post accident surgery to repair my left arm I was immediately approached by my now local oncologist. He referred us to MD Anderson and it was recommended we start Ifos famine immediately. 6 cycles of that with scans and follow up with MDA every 6 weeks. That slowed the growth down and we were supposed to start votrient then but MDA suggested 6 cycles of Adriamycin. We went for it. All 12 cycles were in patient about 6 days each and let me tell you that sucked for everyone. Those treatments stopped the growth to "no significant change". I then took 2 months off from all medicine. 6 weeks after starting oral Votrient my scans showed a reduction in all tumors size except maybe 1 or 2. Yay! First good news in a while. I take 400mg twice daily. I can reduce the dose if I am having tough days. My side effects consist of GI upset, loss of appetite, irritability, fatigue, and slight depression. All these are usually managed with medicine including cannabis. I have down days but nothing as bad as when I was on IV chemo. Be your own advocate. Especially with medical staff. They have lots of other patients they deal with every day not just you and your family. They are human still that aren't perfect. You have just you to take care of, medically, and you have to take care of you. Speak up and Ask lots of questions until you understand so well you could teach it to someone else. Don't worry about their response or hurried attitude. I hope this is helpful. Thank you for letting me share. May God bless you all.
I was diagnosed with SS in last Nov by MD Anderson and they they recommended me to have 6 cycle of chemo, after second cycle of chemo, scan showed dissolving the tumor in my left lung to some extent and continued Doxu-ifex for another 2 cycles which showed only slow response, so I decided to have Pnuemonectomy and had surgery on April 7 2016 and still recovering from surgery as little pain n numb is there in left side of chest
I asked my oncologist to use some votrient as preventive measure but he did not suggest and and he told me Ifex+ Doxu would not be used again as it was not working for me. and planning to take next CT scan end of june n see, and I look forward to seeing success of Immunotherapy for SS and I have no intention to have radation on chest wall area as recommended by Surgeon as pathlogy report was negative for plura, diaphram, and limp nodes
No, I have not tried either one yet. I have read your story and I hope there is another treatment option for you. I pray something comes along that will kill those tumors....
Kaiowas said:
Did you try yondelis allready? I would first try that instead of votrient. And if there is nothing on the scans... I wouldn't take anything. Enjoy life treatment free as long as you can, is my advice. Votrient did do permanent damage to my body...
Dr. Gerald Rosen at NYU Langone Medical Center. Phone number is 212 731 5758
Jtrevmil said:
Thank you for your insight. I would love to review the references, if you would not mind providing them to me. I will ask about NY-ESO-!, but will ask. I know my tumor did not meet criteria for the vaccine trial. Thanks again.
Elodie Espesset said:
There is no published data on maintenance therapy with votrient for patients with no evidence of disease, as far as I know. Besides not knowing if there is any potential benefit from taking votrient at this point, you may experience a decrease in quality of life with this drug. My oncologist, also in NYC, offered me votrient as maintenance therapy but I declined because I'd rather enjoy a treatment-free life for as long as I can. If you really want to try votrient, I can give you his references.
Were your tumors tested to see if they expressed NY-ESO-1?