Has anyone gone to Bethesda Md to check out the clinicial trial? Did you see any improvement s in your tumors? What side affects occurred? Please respond if you have gone! MD Anderson has now told me they can’t do anything else for me. I have had below knee amputation, 5 rounds of Doxy and ifosfamide, then the last 1 1/2 years on Votrient. Now they claim nothing else to try.
Any suggestions? Has anyone taken another chemo that worked?
Wanda C
My hubby is in the process of going up there for a trial. I cant think ok the name it's something like NYeso? Not sure the exact. He was on the chemo pill but it totally didnt work they totally grew way bigger. Just waiting on all the paperwork to head up there. Are you going up there as well?
Dora, yes I pan to this month, not sure what it’s all about? But going to check into it!
I heard that Sloan Kettering had a clinical trial with everolimus and gleevec (imatinib) I don't know if it's of any help. I do wish you the best of luck
Is this the trial?
http://bethesdatrials.cancer.gov/clinical-research/search_detail.aspx?ProtocolID=NCI-11-C-0113
Yep that sounds like it Elodie! This is what Paul is headed to next. He was doing the chemo pill but the tumors really grew bigger. Right now all he does is cough and cough and blood comes up in his saliva or blood tissue comes up. He doesn't sleep much, if he talks a lot he starts coughing. He is really having such a hard time right now. I feel so bad for him.
Dora, I'm so sorry to hear about what your husband is going through. I have been fighting this disease for about the same amount of time he has, and feel like our situations are kind of similar. I also cough a lot, and am not sure if it is radiation related or if the mets have grown more. Is Votrient the chemo pill your husband was taking? I'm currently taking that pill and getting the first Scan results since starting the drug tomorrow. If this drug does not take, maybe I will look into the bethesda trial.
Dora Oquendo said:
Yep that sounds like it Elodie! This is what Paul is headed to next. He was doing the chemo pill but the tumors really grew bigger. Right now all he does is cough and cough and blood comes up in his saliva or blood tissue comes up. He doesn't sleep much, if he talks a lot he starts coughing. He is really having such a hard time right now. I feel so bad for him.
Wanda,
If you're willing to travel, there is Dr. Sant Chawla in Santa Monica, CA who gets a lot of clinical trials for sarcomas. I was told in 2005 there was nothing else available, but he had something for me and I remained in that clinical trial for 5 years with no additional tumors and I'm still traveling from the San Francisco area to LA and have been on a variety of treatments. When something fails, he always has some else for me to try. He may have something for you..it doesn't hurt to inquire. The clinical trial coordinator is Vicky Chua, so ask for her. The number is 310-■■■■■■■■. Good luck! I think the next best choice would be Sloan Kettering Memorial in NY.
My son, James, was set to go to Bethesda, MD for the genetic immunization for NYESO-1. He had to be totally off of all chemo for two weeks before going to bethesda. When you get to Bethesda the perform the aphoresis to gather your cells for treatment. It takes 6-8 weeks to clone your cells and while you are waiting for your cloned cells, you cannot be on any chemo. Then you would return to Bethesda and stay in the hospital for 2-3 weeks while reciving treatments. Unfortuneately, James only made it without chemo for 10 days and he crashed. He ended up in the emergency room coughing up blood and shortness of breath. He had to have a round of Doxyrubicin to hopefully control the monster. We will find out what is next in three weeks. Obviously, Bethesda is out. Good luck to you.
Oh gosh how scary. Paul is getting ready to head up there in Sept for the same trial. He is at the point of coughing and blood. I hope and pray for you family that they find somthing for him.
I think the Bethesda trial is similar to the T-cell immunotherapy trial my husband participated in here in Seattle at the Seattle Cancer Care Alliance. The trial here is similar in nature, but less toxic -- chemo was less time, IL2 was less as was the interfuron. But the process does take time. My husband did the lukaphresis procedure before he started any of the traditional treatments as we knew he showed the market (NYESO) and the trial would be an option at some point. Prior to the trial we did doxi/ifos, Trabectadin, and then had to do radiation on the largest tumor in his lung as it was pressing upon his esophagus. There is a ton more to the story of what he has gone through, however, for the t-cell treatment itself, we saw mixed results. The tumor that had been radiated has show considerable shrinkage, and some of the smaller mets in the lungs have shrunk. Many of the others however have either stayed the same or have grown slightly in size. The doctors are trying to figure out why the treatment didn't respond as it was supposed to ( this is a clinical trial, and my husband was patient 1 on this particular study) and they are also trying to figure out why the radiated tumor responded so well. We will be discussing the next treatment which could include a t-cell booster coupled with radiation, but we are not sure yet. If we don't see a good result, then we'll probably go to votrient. I believe our doctor at SCCA, Seth Pollack, has openings for the trial and I would happy to ask if he is looking for others to participate. Let me know. And if you'd like to know more about our "journey" over the past year, please visit our blog at www.blackburn-us.com.
Thats like Paul his tumor is pressing against his lung and just making him cough with blood. It miserable for him. He was able to get around with his crutches but now we wheel him around in the house cause it's too much, he starts coughing trying to get around himself.
Traceyb said:thesda trial is similar to the T-cell immunotherapy trial my husband participated in here in Seattle at the Seattle Cancer Care Alliance. The trial here is similar in nature, but less toxic -- chemo was less time, IL2 was less as was the interfuron. But the process does take time. My husband did the lukaphresis procedure before he started any of the traditional treatments as we knew he showed the market (NYESO) and the trial would be an option at some point. Prior to the trial we did doxi/ifos, Trabectadin, and then had to do radiation on the largest tumor in his lung as it was pressing upon his esophagus. There is a ton more to the story of what he has gone through, however, for the t-cell treatment itself, we saw mixed results. The tumor that had been radiated has show considerable shrinkage, and some of the smaller mets in the lungs have shrunk. Many of the others however have either stayed the same or have grown slightly in size. The doctors are trying to figure out why the treatment didn't respond as it was supposed to ( this is a clinical trial, and my husband was patient 1 on this particular study) and they are also trying to figure out why the radiated tumor responded so well. We will be discussing the next treatment which could include a t-cell booster coupled with radiation, but we are not sure yet. If we don't see a good result, then we'll probably go to votrient. I believe our doctor at SCCA, Seth Pollack, has openings for the trial and I would happy to ask if he is looking for others to participate. Let me know. And if you'd like to know more about our "journey" over the past year, please visit our blog at www.blackburn-us.com.
Tracey, the response of the radiated tumor to the trial is interesting. Recently, a trial in Florida showed that combining radiation with immunotherapy was a promising approach:
This is great to see, Elodie! Thank you so much for sharing as always. I’ll ask our doctor about this at our next appointment. Dora, please keep me posted on your husband’s progress. Thoughts are with you both!
Did you look into Yondelis?