So I have successfully been screened and accepted into the Trivalent Ganglioside Vaccine With Immunological Adjuvant or Immunological Adjuvant Alone in Metastatic Sarcoma Patients Who Are Rendered Disease Free. Actually, I have already received the first 2 vaccinations. The reported side effects are low,30% experience flu like symptoms 2-3 days after receiving the shot, and luckily I have not gotten any of those symptoms, and hopefully I am in the 50% that gets the vaccine. It is a double blind trial, so I think it will be a number of years before anybody can reveal to me if I have been getting the vaccine or not. It is also open to all soft tissue sarcomas. Hopefully my Synovial Sarcoma, if there is any left in me, responds to these immune system changes in me.
I personally couldn’t pass this up, after listening to my doctors, and understanding that right now my other option would be to receive no treatment and monitor my chest/abdomen/pelvis with CT scans.
I still feel better than I have in years, even before my lung surgery. I am essentially recovered from that as well, just a little soreness when I stretch.
Also one other I feel I should mention is my continued acupuncture treatments that I have been receiving for over a year. Primarily, they helped me with the overwhelming nerve pain associated with the nerve graft I received to my tibial nerve. Acupuncture was my only source of pain relief for months post surgery, and has been an invaluable compliment to all the other modern medicine treatments I have been receiving. I would highly recommend it to anyone considering it. I can’t imagine where I would be without it in my recovery. From anxiety to pain relief it has been a huge help.
If anyone else is in this trial, I would be interested to hear if they have experienced anything more than I have with side effects or even better, success in helping prevent more metastasis.
Hi Dan, This is very good news. I hope and pray that this will be very successful.Let's think positive .By the way, where did you get this clinical trial? I have synovial sarcoma in my left knee and had a left knee megaprosthesis replacement with left
gastronemius muscle flap done.Unfortunately I have it on mo both lungs, received Ifos and Adriamycin chemo and VATS surgery on my lungs but after 2 months nodules came back on my left knee and lungs, now I am getting radiation daily for my leg and Gemzar and Taxol chemo.
Ellen said:
Hi Dan and Family. This is such a new discovery. We think of you often and keep you in our prayers.
My oncologist at Dana Farber Cancer Institute suggested it as my best treatment option for me at this time. The trial as far as I know is administered at Memorial Sloan Kettering, and Dana Farber. I am the second at DFCI, and From what I know about the 23rd in the trial. Is your treatment a clinical trial, or treatment? Just from understanding how I feel now, I kind of feel like my nodules were established before my chemo/radiation treatment. I felt better after my knee surgery, but not as well as I do now after my lung surgery. My nerve pain has been under better control lately too, which helps alot too. I hope your chemo works for you. I have a 4 week break from traveling to Boston for treatments, looking forward to no hospitals or traveling. Will you need surgery after your current chemo treatments? Thanks for sharing your story.
Remy Macan said:
Hi Dan, This is very good news. I hope and pray that this will be very successful.Let's think positive .By the way, where did you get this clinical trial? I have synovial sarcoma in my left knee and had a left knee megaprosthesis replacement with left
gastronemius muscle flap done.Unfortunately I have it on mo both lungs, received Ifos and Adriamycin chemo and VATS surgery on my lungs but after 2 months nodules came back on my left knee and lungs, now I am getting radiation daily for my leg and Gemzar and Taxol chemo.
Ellen said:
Hi Dan and Family. This is such a new discovery. We think of you often and keep you in our prayers.
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
This sounds so positive…we are located in australia. Are you able to send me some contact information about this treatment?? My husband has synovial sarcoma and it is now in his lungs… is.the treatment you are on adaptive immunotherapy??? Hope to hear from you soon
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
I have heard of that clinical trial that you are in, and it sounds promising. My trial is a bit different and is open to any sarcoma. The vaccine is designed to train the immune system to attack cells with specific sugar markers, of which sarcoma cells also have. It is paired wtih an immune system booster which I don't know much about other than it improves the effects of your immune system. My other option offered to me at this time was to wait and get scanned every 3 months. The side effects are low, and all I have experienced has been pain at the injection site. It helps me get back to my job and family, which is great. It is great to hear Nik is improving, hopefully that continues for you. I get scanned the 2nd week in June for the first time since I started the trial, hopefully I don't have any more nodules in my lungs.
Best of luck!
Dan
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
As far as I know my trial is not adaptive immunotherapy. I believe that trial is open at the National Institution of Health in Bethesda MD, just outside of Washington, D.C. If you go to this link on www.clinicaltrials.gov that will send you to the trial I am in, and if you search synovial sarcoma on that site, you will find the other trial at NIH. Kelli who replied before you did today has a son Nik in that trial. I quailfied for my trial post lung surgery with a scan that showed no evidence of disease, I think a person needs to have disease present in their body to qualify for the adaptive immunotherapy. I recieve my treatment through Dana Farber Cancer Instutite in Boston, Massachusetts. The research for this trial is based in New York City at Sloan Kettering Memorial, and Dana Farber is an administering site. I can ask my oncologist if there are any foreign administering sites for this or other trials based in the states. I hope you and your husband find treatment that works for you in Austrialia. Do you have the clinical trials there?
Best of Luck,
Dan
Alicia McFarlane said:
This sounds so positive........we are located in australia. Are you able to send me some contact information about this treatment?? My husband has synovial sarcoma and it is now in his lungs.. is.the treatment you are on adaptive immunotherapy???? Hope to hear from you soon
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
As far as I know my trial is not adaptive immunotherapy. I believe that trial is open at the National Institution of Health in Bethesda MD, just outside of Washington, D.C. If you go to this link on www.clinicaltrials.gov that will send you to the trial I am in, and if you search synovial sarcoma on that site, you will find the other trial at NIH. Kelli who replied before you did today has a son Nik in that trial. I quailfied for my trial post lung surgery with a scan that showed no evidence of disease, I think a person needs to have disease present in their body to qualify for the adaptive immunotherapy. I recieve my treatment through Dana Farber Cancer Instutite in Boston, Massachusetts. The research for this trial is based in New York City at Sloan Kettering Memorial, and Dana Farber is an administering site. I can ask my oncologist if there are any foreign administering sites for this or other trials based in the states. I hope you and your husband find treatment that works for you in Austrialia. Do you have the clinical trials there?
Best of Luck,
Dan
Alicia McFarlane said:
This sounds so positive........we are located in australia. Are you able to send me some contact information about this treatment?? My husband has synovial sarcoma and it is now in his lungs.. is.the treatment you are on adaptive immunotherapy???? Hope to hear from you soon
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
Is this the same trial that requires you to HLA + ?
Daniel J. Thibault said:
Alicia,
As far as I know my trial is not adaptive immunotherapy. I believe that trial is open at the National Institution of Health in Bethesda MD, just outside of Washington, D.C. If you go to this link on www.clinicaltrials.gov that will send you to the trial I am in, and if you search synovial sarcoma on that site, you will find the other trial at NIH. Kelli who replied before you did today has a son Nik in that trial. I quailfied for my trial post lung surgery with a scan that showed no evidence of disease, I think a person needs to have disease present in their body to qualify for the adaptive immunotherapy. I recieve my treatment through Dana Farber Cancer Instutite in Boston, Massachusetts. The research for this trial is based in New York City at Sloan Kettering Memorial, and Dana Farber is an administering site. I can ask my oncologist if there are any foreign administering sites for this or other trials based in the states. I hope you and your husband find treatment that works for you in Austrialia. Do you have the clinical trials there?
Best of Luck,
Dan
Alicia McFarlane said:
This sounds so positive........we are located in australia. Are you able to send me some contact information about this treatment?? My husband has synovial sarcoma and it is now in his lungs.. is.the treatment you are on adaptive immunotherapy???? Hope to hear from you soon
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
This sounds so positive........we are located in australia. Are you able to send me some contact information about this treatment?? My husband has synovial sarcoma and it is now in his lungs.. is.the treatment you are on adaptive immunotherapy???? Hope to hear from you soon
Nikolas Ritschel said:
Hi Dan,
I am so glad to hear your good news! My son, Nik is recieving Immunology Treatments at the National Institutes of Health, National Cancer Institute in Bethseda, MD. I am not sure what the difference is, but it is not a blind trial. They removed his tumors (right and left lung) and made a vaccine out of them. There are 6 treatments. First they harvest his white blood cells and put them with a professisional T-Cell that teaches his cells to recongize and fight cancer. Every 2 weeks, they pump his immune system up with IL-7 and then they give him 6 shots of the vacinne. On some treatments they give him back his educated T-Cells. Does this sound like what you are doing? I had never heard anything about NIH, but it is the largest research hospital in the world. There are people from all over the world here for treatment of rare diseases like synovial. It is government funded and all of the treatments are free.. including the airfare to get here. Nik is on treatment 3 and the side effects sound very similar. He was scanned today and his lungs look better than they did a month ago.
For anyone considering/researching this trial, my experience so far has been good. I was re-staged at week 16 (consisting of bloodwork and a CT of the chest/abdomen/pelvis), and received an evaluation of No Evidenced of Disease, and got another shot. I get re-staged again at week 28 (September 1). My side effects continue to be low, pain and swelling at the site, feeling crummy for a couple days after. At this point with this being a double blind trial, the the tangible benefits are more peace of mind that I am doing something over nothing, and playing a small part in advancing research for potential treatment for synovial sarcoma. I mapped out when I would be able to have my treatment revealed, and depending on publishing and whatnot it turns out to be 2017-2018. I can't wait to write that letter.
I have been having a great summer with my family, been able to get back to work full time, and figured out how to get back to things I love doing. I got a brace for my leg, and I am enjoying riding my bicycle again, and I have figured out how to get back to generally successful surfing. Modified yoga and continued acupuncture treatments help my anxiety, stress, and nerve pain. Things are great now, and I have learned to enjoy what I have in the moment.
Dan... My name is Natalie Krohn. I am a 13 year survivor of Leiomyosarcoma and have had 17 mets to date. I have been on the trial since March thinking all was good with the world. A CT revealed two small areas which I was set up for surgery to remove two days later. When the surgeon requested another CT right before surgery, they found six mets. My surgeon was able to remove three of these areas.
A PET scan I had two weeks later which revealed well over 14 areas of mets. I have an appointment to see Dr. Suzanne George at Dana Farber in a few weeks. At this point, I am trying to do a little investigative work. Is it possible the vaccine triggered some of these areas to grow - were they overlooked by the Iowa City staff - are they inflammatory processes which will ultimately be OK?? I'm just full of questions and short on answers... any information I can retrieve from others on the trial will be of great help to me and my treatment. God Bless!
This is Dan's wife, Katie..but our home computer has him signed in (and I'm pretty sure if I log him out he may not remember his password...)so I think it will post as Dan...
Anyway, I am so sorry to hear that you have had more mets associated with your sarcoma diagnosis. It is such a roller coaster. The fact that you have been dealing with this for 13 years must be so frustrating, yet I feel encouraged that your doctor's have been able to stay ahead of it for so long. Every time Dan has a procedure it makes me feel hopeful that it has bought us more time while the experts are finding a cure.
Anyway, Dan is also treated at Dana Farber and is on the clinical trial you've mentioned. So far, he has had no new growth since being on the trial. I'm not sure what that means, but I hope it means that it is doing something to prevent the cells from getting together. The nodule he had removed last week was one that was on the scan last February when he began the trial, but it was so, so small they couldn't officially determine that it was mets. Gradually over the last 10 months it has been the only nodule that has grown....so they decided to take it out. It was just a little over a centimeter. The trial allows for him to have a surgery like this and if his scans remain clear then he will be able to rejoin at the point where he stopped. He was at week 40.
So, to answer your questions, I cannot imagine that the researchers would continue to proceed with a trial that increases the rate that tumors grow. Right? I would think that would be unethical. But who knows. We've been told that sometimes the sarcoma will lay dormant and then suddenly go crazy in the lungs. So it could be independent of the trial. I do know that they mentioned that they were not going to give Dan another CT scan until about a month after his surgery to give things in his lungs time to "settle down" from the surgery. Perhaps you were scanned too soon?
I have heard very good things about Suzanne George. I believe you will be in good hands at Dana Farber. Dan is treated there as well. Dan has also been told that there are different chemo options and ways to try to control the growth of the tumors, again buying more time. Our oncologist is also very mindful about quality of life and quantity of life. This is something I have held tight to. Of course, I want to grow old with my husband, however I want to make sure the quality of his life is good too. Right now we choose the trial because Dan would go bananas if we did "watchful waiting' and it does not make sense to do chemotherapy again right now. We are trying to be aggressive when tumors appear in the lungs, and have been told that the best way to get them is to go in and get them out when there are one or two.
I am curious to hear more about what you learn when you meet with Dr. George. I hope you find the answers you are looking for. If we can be helpful in anyway don't hesitate to contact us.
Thank you so much for your reply. It sounds like Dan is doing well on the trial, and I am so thankful for that. I had started the trial back in May and after this last metastases, I'm out of the trial. I had never been told about the possibility of having the scan too soon after surgery. It does make sense with the trauma involved in surgery and recovery. I'm praying that these areas will go down on their own. My CT scans throughout the hear were clean, and then suddenly this PET scan pops up all these crazy lesions.
I'll try to keep in touch with Dan. Who knows, maybe we'll be at Dana Farber on the same day in the future! In the meantime, I'm counting down the days to Boston!
God Bless-
Natalie
Daniel J. Thibault said:
Hi Natalie,
This is Dan's wife, Katie..but our home computer has him signed in (and I'm pretty sure if I log him out he may not remember his password...)so I think it will post as Dan...
Anyway, I am so sorry to hear that you have had more mets associated with your sarcoma diagnosis. It is such a roller coaster. The fact that you have been dealing with this for 13 years must be so frustrating, yet I feel encouraged that your doctor's have been able to stay ahead of it for so long. Every time Dan has a procedure it makes me feel hopeful that it has bought us more time while the experts are finding a cure.
Anyway, Dan is also treated at Dana Farber and is on the clinical trial you've mentioned. So far, he has had no new growth since being on the trial. I'm not sure what that means, but I hope it means that it is doing something to prevent the cells from getting together. The nodule he had removed last week was one that was on the scan last February when he began the trial, but it was so, so small they couldn't officially determine that it was mets. Gradually over the last 10 months it has been the only nodule that has grown....so they decided to take it out. It was just a little over a centimeter. The trial allows for him to have a surgery like this and if his scans remain clear then he will be able to rejoin at the point where he stopped. He was at week 40.
So, to answer your questions, I cannot imagine that the researchers would continue to proceed with a trial that increases the rate that tumors grow. Right? I would think that would be unethical. But who knows. We've been told that sometimes the sarcoma will lay dormant and then suddenly go crazy in the lungs. So it could be independent of the trial. I do know that they mentioned that they were not going to give Dan another CT scan until about a month after his surgery to give things in his lungs time to "settle down" from the surgery. Perhaps you were scanned too soon?
I have heard very good things about Suzanne George. I believe you will be in good hands at Dana Farber. Dan is treated there as well. Dan has also been told that there are different chemo options and ways to try to control the growth of the tumors, again buying more time. Our oncologist is also very mindful about quality of life and quantity of life. This is something I have held tight to. Of course, I want to grow old with my husband, however I want to make sure the quality of his life is good too. Right now we choose the trial because Dan would go bananas if we did "watchful waiting' and it does not make sense to do chemotherapy again right now. We are trying to be aggressive when tumors appear in the lungs, and have been told that the best way to get them is to go in and get them out when there are one or two.
I am curious to hear more about what you learn when you meet with Dr. George. I hope you find the answers you are looking for. If we can be helpful in anyway don't hesitate to contact us.
Thank you so much for your reply. It sounds like Dan is doing well on the trial, and I am so thankful for that. I had started the trial back in May and after this last metastases, I'm out of the trial. I had never been told about the possibility of having the scan too soon after surgery. It does make sense with the trauma involved in surgery and recovery. I'm praying that these areas will go down on their own. My CT scans throughout the hear were clean, and then suddenly this PET scan pops up all these crazy lesions.
I'll try to keep in touch with Dan. Who knows, maybe we'll be at Dana Farber on the same day in the future! In the meantime, I'm counting down the days to Boston!
God Bless-
Natalie
Daniel J. Thibault said:
Hi Natalie,
This is Dan's wife, Katie..but our home computer has him signed in (and I'm pretty sure if I log him out he may not remember his password...)so I think it will post as Dan...
Anyway, I am so sorry to hear that you have had more mets associated with your sarcoma diagnosis. It is such a roller coaster. The fact that you have been dealing with this for 13 years must be so frustrating, yet I feel encouraged that your doctor's have been able to stay ahead of it for so long. Every time Dan has a procedure it makes me feel hopeful that it has bought us more time while the experts are finding a cure.
Anyway, Dan is also treated at Dana Farber and is on the clinical trial you've mentioned. So far, he has had no new growth since being on the trial. I'm not sure what that means, but I hope it means that it is doing something to prevent the cells from getting together. The nodule he had removed last week was one that was on the scan last February when he began the trial, but it was so, so small they couldn't officially determine that it was mets. Gradually over the last 10 months it has been the only nodule that has grown....so they decided to take it out. It was just a little over a centimeter. The trial allows for him to have a surgery like this and if his scans remain clear then he will be able to rejoin at the point where he stopped. He was at week 40.
So, to answer your questions, I cannot imagine that the researchers would continue to proceed with a trial that increases the rate that tumors grow. Right? I would think that would be unethical. But who knows. We've been told that sometimes the sarcoma will lay dormant and then suddenly go crazy in the lungs. So it could be independent of the trial. I do know that they mentioned that they were not going to give Dan another CT scan until about a month after his surgery to give things in his lungs time to "settle down" from the surgery. Perhaps you were scanned too soon?
I have heard very good things about Suzanne George. I believe you will be in good hands at Dana Farber. Dan is treated there as well. Dan has also been told that there are different chemo options and ways to try to control the growth of the tumors, again buying more time. Our oncologist is also very mindful about quality of life and quantity of life. This is something I have held tight to. Of course, I want to grow old with my husband, however I want to make sure the quality of his life is good too. Right now we choose the trial because Dan would go bananas if we did "watchful waiting' and it does not make sense to do chemotherapy again right now. We are trying to be aggressive when tumors appear in the lungs, and have been told that the best way to get them is to go in and get them out when there are one or two.
I am curious to hear more about what you learn when you meet with Dr. George. I hope you find the answers you are looking for. If we can be helpful in anyway don't hesitate to contact us.
I wanted to share my non-profit logo with you. If you have the time, just Google my name "Natalie Krohn" or Together We Will Win to see what I've been up to. I'm desperately trying to bring more attention to all the rest of us fighting the battle!
