Hi,
Have anyone tried Immune-based Therapies or do you have any feedback regarding this new therapy? This therapy is being performed at University of Washington by Dr. Seth Pollack.
Thanks,
Gavin
Gavin, My son is set to go to Bethezda, MD for Adoptive Immunotherapy in early June. If he stays well, he will begin his therapy. I will let you know how it goes. This is the newest in synovial sarcoma trials and shows great promise.
Hi Gavin
I have SS too. A friend of mine who lives near Seattle is in the process of preparing to go on that trial with Dr. Pollack. Supposedly there are fewer than 10 people that have done this therapy? If she begins the treatment I will gladly post her side effects and experiences with it! Meanwhile if you learn anything about it please post, I may have to do this one or the one in Bethesda, MD. I have been on Yondelis for 16 rounds but a couple tumors doubled in size so I’m waiting to see what they are gonna do with me. My docs are at Sloan Kettering and Fox Chase Cancer Ctr.
Jennifer
I know of a lady who had success with the trial in Bethesda when she first joined. After about 2 years though, her tumors started to grow back. She just joined an anti-PD-L1 trial which I believe is the following one:
http://www.clinicaltrials.gov/ct2/show/NCT01375842
The thought is PD-L1 may be responsible for her tumors escaping her engineered T-cells...
More information about PD-L1:
You must mean this trial? http://www.clinicaltrials.gov/ct2/show/NCT01477021
If so, I tried to get on it and Seth was my Dr, but he indicated my HLA typing wasn't correct for the trial...
My husband was the first to participate in Seth’s trial about a year ago. We documented everything on our blog and if you are interested I can send you the link. Not sure if any of the protocol had changed, but basically, as far as side effects go, the chemo piece is chemo, the shots are not fun and made my husband feel flu like but once everything wad done he felt okay. At first we had very encouraging results seeing a response in deceased tumor size however, that changed very quickly and his tumors grew again.
I truly believe this is the treatment of the future and I hope my husband’s participation as the first makes a difference. I wish you the best of luck and any information or support I can provide to you locally here in Washington, please don’t hesitate to ask. Please send my best to Seth and the team at UW. I am sure they will all remember my husband, Ed. Finally, please update on progress. As mentioned, I think this treatment is going to be a key to helping sarcoma patients, and I’d enjoy seeing positive progress, which I am confident you will have!
Best,
Tracey
Hi Tracey,
Please send me the link. I am still on Yondelis. I am just preparing myself for my next treatments if Yondelis does not work.
Thanks,
Gavin
Traceyb said:
My husband was the first to participate in Seth's trial about a year ago. We documented everything on our blog and if you are interested I can send you the link. Not sure if any of the protocol had changed, but basically, as far as side effects go, the chemo piece is chemo, the shots are not fun and made my husband feel flu like but once everything wad done he felt okay. At first we had very encouraging results seeing a response in deceased tumor size however, that changed very quickly and his tumors grew again.
I truly believe this is the treatment of the future and I hope my husband's participation as the first makes a difference. I wish you the best of luck and any information or support I can provide to you locally here in Washington, please don't hesitate to ask. Please send my best to Seth and the team at UW. I am sure they will all remember my husband, Ed. Finally, please update on progress. As mentioned, I think this treatment is going to be a key to helping sarcoma patients, and I'd enjoy seeing positive progress, which I am confident you will have!
Best,
Tracey
I send an email to Dr. Pollack to make sure this is the right one. I just took a bloodtest to see I have the right HLA tying.
Adam0 said:
You must mean this trial? http://www.clinicaltrials.gov/ct2/show/NCT01477021
If so, I tried to get on it and Seth was my Dr, but he indicated my HLA typing wasn't correct for the trial...
Yes, I just confirmed that this is the clinical trial. Thanks.
Gavin said:
I send an email to Dr. Pollack to make sure this is the right one. I just took a bloodtest to see I have the right HLA tying.
Adam0 said:You must mean this trial? http://www.clinicaltrials.gov/ct2/show/NCT01477021
If so, I tried to get on it and Seth was my Dr, but he indicated my HLA typing wasn't correct for the trial...
Our blog can be found at www.blackburn-us.com where we documented the t-cell immunotherapy trial, as well as the experience with Yolondis (sp). Anyone is welcome to view it and learn from our journey.
Tracey
Gavin said:
Hi Tracey,
Please send me the link. I am still on Yondelis. I am just preparing myself for my next treatments if Yondelis does not work.
Thanks,
Gavin
Traceyb said:My husband was the first to participate in Seth's trial about a year ago. We documented everything on our blog and if you are interested I can send you the link. Not sure if any of the protocol had changed, but basically, as far as side effects go, the chemo piece is chemo, the shots are not fun and made my husband feel flu like but once everything wad done he felt okay. At first we had very encouraging results seeing a response in deceased tumor size however, that changed very quickly and his tumors grew again.
I truly believe this is the treatment of the future and I hope my husband's participation as the first makes a difference. I wish you the best of luck and any information or support I can provide to you locally here in Washington, please don't hesitate to ask. Please send my best to Seth and the team at UW. I am sure they will all remember my husband, Ed. Finally, please update on progress. As mentioned, I think this treatment is going to be a key to helping sarcoma patients, and I'd enjoy seeing positive progress, which I am confident you will have!
Best,
Tracey
Thanks Ellen. Please keep me posted.
Ellen said:
Gavin, My son is set to go to Bethezda, MD for Adoptive Immunotherapy in early June. If he stays well, he will begin his therapy. I will let you know how it goes. This is the newest in synovial sarcoma trials and shows great promise.
GavinI haven't written in a while as James has been on a sarcoma rollercoaster.
First, we went to Bethesda, MD for the NY-ESO-1 immunotherapy study after he was weaned from chemo for 3 weeks. He had extensive lab work and studies done, met with several research nurses, a social worker, a fellow and several doctors. We were told that he would come back in a week (if he met the criteria) and his T cells would be cloned and grown. This process would take 4 more weeks (in which you had to be chemo-free for on top of the already 43 weeks chemo free). James was already starting to bleed in his lungs at that point. They stated that they would call back in 4 days to determine if they were going to accept him. Unfortunately, James was not accepted due to his history of bleeding (he is on his third pulmonary bleed). The study initially gives you an enormous dose of chemo (not to shrink the tumors, but to wipe out your immune system), which depletes your white blood cells as well as your platelets (which you need for clotting). It was decided that the trial was too dangerous for James in relation to his pulmonary bleeds. James was devastated.
We returned to Fletcher Allan Hospital in Burlington, Vermont where he was coiled in 10 separate areas for bleeding. He did not stop bleeding bright red blood for a week and lost 12 pounds. He continues to cough up old dark blood left over from the great pool of blood that accumulated in his left lower lobe.
Second, His Dr. has placed him on a clinical trial with ALISERTIB (MLN8237). It is a pill form Aurora A Kinase inhibitor. It has shown promise.
If this does not work, it is back to Doxirubicin. My heart is heavy for him as well as all members and people afflicted with this demon. I pray for all of you every night. I am so sorry for what you go through every day.,
Ellen - as I read this I am without words. My thoughts and prayers are with you and your family. This demon is vile.
Traceyb
Thank you Tracey.
Sara, you may want to contact SSHubby privately:
http://forum.synovialsarcomasurvivors.org/profile/SSHubby?xg_source=profiles_memberList
His wife was on the Bestheda's trial.
You'd have to call the trial coordinator to find out if it's available for non US citizen. The other limitation is the HLA type. Your brother would have to be HLA-A2.
Tracey - Thank you for posting your blog - it will be helpful to many encountering this journey as well. My husband was diagnosed with SS last June with a mass in the lung lining that has since grown to over 10cm. He was given the AIM treatment for 4 cycles, which did nothing but make him sick and had no effect on the tumor.
Ellen - my husband tried to get accepted for the NY-ESO-1 immunotherapy study as well, but did not qualify for the typing. There was another study for cabozantinib at NIH that he qualified for and stayed on the trial for 4 months until he developed stroke symptoms and had to be removed from the study. There were no other options at that time so he was put on Votrient until a few weeks ago when he had internal bleeding as well. He stayed in ICU for over a few weeks and was still coughing up some left over blood upon his discharge.
Gavin - My husband is awaiting acceptance (if he qualifies with the proper protein type) for a new immunotherapy trial that was recommended by his oncologist for a Phase 1 Study of MPDL3280A - If he does not qualify for this he will also be placed on Doxirubicin.
At his most recent scan the tumor grew and is pressing on his liver, there were a few further nodules on the chest wall, and areas of growth around the aorta.
Prayers to all going through this and I am thankful for this site to share with others.
Cathy
Hi,
I have done immune-based therapy two separate times. I was a part of a study at NCI at NIH. For my particular study, I had to have a certain receptor on the tumor.
I had a really positive result the first time I had the therapy, and all the disease in my lungs appeared to be gone. The second time (one full year later), my cells did not respond as well and get rid of as much miliary disease. This immuno- therapy does involve a dose of chemo and can be a challenge on your system. Plus, the treatment is intensive and I had to remain in the area, and stay in the hospital for a long time.
If you have more questions, I can try to answer them or direct you to someone who can.
-Elizabeth
Hi Gavin! I've been through the trial at Bethesda MD. Happy to say that after 3 months my tumors are still shrinking. 40% reduction to date.
I started a blog on here: http://forum.synovialsarcomasurvivors.org/profiles/blogs/has-anyone-been-through-the-genetically-modified-t-cell-trial?id=6300991%3ABlogPost%3A36492&page=1#comments
My intention was to record what I was going through as it happened. I simply got too weak during the treatment to do so. I did however added the happy ending. Let me know if you have any questions.
My husband was supposed to begin an immunotherapy trial (Pembrolizumab) at the Washington Cancer Institute. However, we were told that his lung nodules were not large enough to biopsy. So his doctor sent his records back to NIH. We are waiting to hear from them now.
Hi Kelli
Did they indicate what size they need to be? I have been wondering how they biopsy the nodules
I wish you luck at NIH
Thanks!