My primary started growing again at the end of November and I started Votrient at that time. By early Feb everything had progressed substantially again so we switched to Doxil annd tried 2 rounds of that. I just had a CT scan today and everythig has progressed again. My abdominal masses are 14 x 11 cm and 7 x 8 cm with numerous other peritoneal disease. I ned to try something else now I suppose. or should I concentrate on pallative care? My Anna will be quite upset if I don't try some alternative therapy as she is not much of a proponent of conventional medicine. Has anyone had any success at all with alternatives in regards to this synovial sarcoma? I am going to try some marajuana but do not believe that there is anything curative about it. She wants me to go to one of those Mexican infusion clinics and I am not sold on it at all. Please share....and Thanks
My daughter started Votrient last November and it appeared to start to work by January but by February the tumors were getting bigger just like you. My daughter is currently on Trabectedin (Yondelis). Just did one cycle and will do another cycle next Friday. Will not know how it is working for another three weeks but other folks on this site have had some success with it so it might be something to discuss with your oncologist. If this does not work we might try the Aldoxorobicin trial in Santa Monica but it is randomized...something you might also want to discuss. Also just started discussing these clinical trials below with our oncologist and there is always the high dose ifosfamide which is administered differently based on the location which you can also discuss. All the best. Trish
1. NCT02054806 - Study of MK-3475 in Participants With Advanced Solid Tumors (MK-3475-028/KEYNOTE-28)
2. NCT01394016 - A first-in-human phase I study of the CDK4/6 inhibitor, LY2835219, for patients with advanced cancer.
3. NCT01302405 - A phase I first-in-human study of PRI-724 in patients with advanced solid tumors.
4. This one just completed. - NCT00871559 - A Multiple-Ascending-Dose Study of the Safety and Tolerability of REGN421(SAR153192) in Patients With Advanced Solid Malignancies.
The Sarcoma Foundation of America is inviting a famous surgeon for abdominal procedures at their conference in New York on May 4th. I am wondering if this could be somebody worth meeting in your situation:
I am curently on high dose Ifosamide and Epirubicin. But, on the side I am taking Graviola (soursop) tea which apparently is very good. I don't if it is working but it is worth trying. I will get another CT Scan in 3 weeks and will share the results. If you do the Graviola tea, please get the approval from your oncologist first.
This off label combination drug treatment has stopped my synovial sarcoma from growing for the last 2 months and counting: www.neoplas.org. I have also been trying medical marijuana which helps me feel better, though the real medicinal use is in the oil which is expensive and hard to get: phoenixtears.ca.
Hi Johnboy Esq - the neoplas site is interesting. Can you please share what two drugs they have you taking? All the best. Trish
Johnboy Esq said:
This off label combination drug treatment has stopped my synovial sarcoma from growing for the last 2 months and counting: www.neoplas.org. I have also been trying medical marijuana which helps me feel better, though the real medicinal use is in the oil which is expensive and hard to get: phoenixtears.ca.
Hi Michael I am so sorry to hear that your sarcomas have progressed as such a fast rate. As a widow I no and understand where your partner is coming from watching a man you love go through the effects of progression is a nightmare because there is nothing you can do about it. I was the same with Colin I begged him to do everything but in the end I begged him not to because I wanted him to enjoy whatever time he had left with myself and the kids and not be sick from chemo. The Pallitive care team were amazing. But hey… There could be hope for you they could find something that works? Have they offered more chemo to you?
It’s like this you no ur body and what it’s able to tolerate so u need to do what’s right by you not what’s right by everyone else, I said the same thing to my husband. If your able for more chemo go for it if not then u will be well looked after by Pallitive care. Either way I wish u all the very best xx
Thanks....it means alot to me that you shared. I will be trying to come up with a plan that works for everyone these next couple days, just don't want my loved ones to think I have given up because their hope is what really makes me want to live.
I cannot imagine your loss.....I always have felt so fortunate to be the one....not sure how I would handle my love or my sons being ill.
Thank-you! that sounds very interesting and i read about the Lovastatin and low dose interferon Alfa-2b...I wish you well. I am not sure about traveling back east but am glad you shared and that it may be an option.
Johnboy Esq said:
This off label combination drug treatment has stopped my synovial sarcoma from growing for the last 2 months and counting: www.neoplas.org. I have also been trying medical marijuana which helps me feel better, though the real medicinal use is in the oil which is expensive and hard to get: phoenixtears.ca.
Glad you mentioned the Graviola as I have been reading a little about it. I may just try it after my appt today
Danie said:
I am curently on high dose Ifosamide and Epirubicin. But, on the side I am taking Graviola (soursop) tea which apparently is very good. I don't if it is working but it is worth trying. I will get another CT Scan in 3 weeks and will share the results. If you do the Graviola tea, please get the approval from your oncologist first.
Thank-you for the info....always much appreciated;)
Elodie Espesset said:
The Sarcoma Foundation of America is inviting a famous surgeon for abdominal procedures at their conference in New York on May 4th. I am wondering if this could be somebody worth meeting in your situation:
Thanks Trish and I sure hope good for you and your daughter. I am going to inquire today about these trials whil i visit my doctor.
Trish said:
My daughter started Votrient last November and it appeared to start to work by January but by February the tumors were getting bigger just like you. My daughter is currently on Trabectedin (Yondelis). Just did one cycle and will do another cycle next Friday. Will not know how it is working for another three weeks but other folks on this site have had some success with it so it might be something to discuss with your oncologist. If this does not work we might try the Aldoxorobicin trial in Santa Monica but it is randomized...something you might also want to discuss. Also just started discussing these clinical trials below with our oncologist and there is always the high dose ifosfamide which is administered differently based on the location which you can also discuss. All the best. Trish
1. NCT02054806 - Study of MK-3475 in Participants With Advanced Solid Tumors (MK-3475-028/KEYNOTE-28)
2. NCT01394016 - A first-in-human phase I study of the CDK4/6 inhibitor, LY2835219, for patients with advanced cancer.
3. NCT01302405 - A phase I first-in-human study of PRI-724 in patients with advanced solid tumors.
4. This one just completed. - NCT00871559 - A Multiple-Ascending-Dose Study of the Safety and Tolerability of REGN421(SAR153192) in Patients With Advanced Solid Malignancies.
I appreciate all the input. My doctors recommended high dose Ifos or Navelbine with Gemcitibine. After reading on these and their risk/rewards.....I have opted to try Vitamion B-17 with Astragalus, Boswellia and Milk thistle. Maybe I will be able to share a success story....with the chemo proposed the best I could hope seems to be a short extension filled with fevers and nausia.
Your have made a very brave decision to opt out of chemo I no that must have been hard for you but you will be better for it, I wish you all the best with your decision and I look forward to reading your success story
Your body is more powerful than anyone will admit to you.
Michael Stangel said:
I appreciate all the input. My doctors recommended high dose Ifos or Navelbine with Gemcitibine. After reading on these and their risk/rewards…I have opted to try Vitamion B-17 with Astragalus, Boswellia and Milk thistle. Maybe I will be able to share a success story…with the chemo proposed the best I could hope seems to be a short extension filled with fevers and nausia.
I attended the SFA sarcoma conference yesterday so I saw Dr. Kato's presentation. He explained that usually tumors in the abdomen are considered inoperable by conventional surgery if they involve major blood vessels. Is this your case? He explained the reason was that removing those blood vessels would kill the healthy organs they supply. Transplantation is not used in cancer for 2 reasons. The first one is that patients are given medications to suppress the immune system after a transplant which could be bad for a cancer patient and the second reason is the supply of organs is limited. So instead of using conventional surgery or transplantation, he does something like an "autotransplantation". He removes the organs supplied by the blood vessels involved in the tumor and put then in a special bath (similar to what would be used for a transplantation I am guessing), then removed the tumor with the part of blood vessels involved, then reconstruct the blood vessels with a synthetic material, then put back the healthy organs. I don't know if he is the only surgeon using this technique. He is certainly the first. His first patient who was an old lady lived 4 or 5 years past the surgery. She eventually passed away from brain metastases. He operated on a young girl in 2009 and she is still in remission. I think this is an option worth looking into...
Wow, that surgery seems really extreme! My question is, if they understand that it would be bad to suppress the immune system of a cancer patient, why would they give a patient chemo (which only works when the immune system is suppressed)? This makes me very sad.
Indeed conventional chemo is like throwing a nuclear bomb on a big city to kill the few terrorists who live there. It's non specific and will attack any cell that divides fast, including the immune cells who have short life span and renew often. The good news is that in most cases, once you complete chemo, the immune system will go back to its normal self. The bad news is that in most cases, synovial sarcoma will also go back to its normal self :-( There is a push now for more targeted therapy. The problem is that the cancer cells population is so diverse, it's unlikely a single therapy could kill all cancer cells without any collateral damage. It's more likely that each targeted therapy will only kill a few specific cancer cells and thus will only help a few people. That means pharmaceutical companies aren't going to make easy money on targeted therapy.
Regarding the immune system, keep in mind that not all parts of the immune system are enemy to cancer cells. There is some evidence that parts of the immune system are actually protecting cancer cells. Researchers are still trying to understand the details.
