Was told today by my radiation oncologist that my best option right now is to see if I am eligible for the immunotherapy clinical trial.
I am looking for treatment either in NY or Boston if possible as I live in CT.
I previously had surgery to remove 1 nodule, and I had SBRT (cyberknife) for treatment on 5 nodules. The SBRT did destroy the nodules, The problem is that I have 2 new nodules that developed in the last three months. I have had a total of 8 nodules since my diagnosis in Dec 2011. Was told today that they could do SBRT again, but because of the likely hood that more nodules will develop and one can only have just so much radiation before side effects appear, they dont think its something I should consider because of side effects.They dont believe I am a candidate for surgery.
The radiation oncologist basically told me that while I'm feeling well,to do things that I've always wanted to do, say things to people that I've always wanted to say.He said we dont know how long anyone has to live but the best part of SS is that it is very slow-growing.
To say the least, I was quite upset during my discussion with the oncologist.
So, my questions are: Has anyone tried the immunotherapy for SS in lungs? If so, was it successful?
Are there any trials in NY or Boston also I am willing to travel.
I understand that not everyone is eligible for the trial need to meet the criteria, have to have the right protein.
Has anyone has any successful chemo besides the typical chem for SS which I had in Feb 2012.
I have done chemo & radiation twice. I’m not a candidate for it but would have opted for it over chemo if I was. If you’re looking into care in NY, Sloan is your best option. I currently am taking Votrient for there nodules in my lungs. I’ve had shrinking tumors and one disappeared since I’ve started taking them. Good luck with everything
There have been several discussions about this in this forum in the past so you might want to do a search on those for a lot of details that have been shared. My husband participated in the immunotherapy trial with Dr. Seth Pollack at the University of Washington. I also just attended a lecture about this trial and others that are coming. You might want to check the UW website or Seattle Cancer Care Alliance who is their partner. There is usually a list of trial information and details.
I'm currently in the trial at NIH. I'm patient #3. I believe they will extend the trial to a total of 10 individuals. I've experiences a 40% reduction in tumor size within 90 days. 50+% reduction in volume. More than willing to discuss if you would like.
The tumor needs to express NY-ESO-1. You will need to provide samples of the tumor. The hospital had slides from my past 3 surgeries and tested them prior to me contacting NIH. They also did the blood work to determine that I was HLA-A2 positive. This helps in discussing the options with the intake nurse when you call about the trial.. You'll still need to send the tumor slides as they want to perform the tests. They will also redo the blood work. I know it seems overwhelming - but stay positive. When you contact NIH, remember it's the government and you may have to call more than once. But they are really great people. NIH will pay for all travel and will arrange your flights, plus provide a small stipend towards your hotel.
Let me know if you have any more questions.
Jim
jsinder said:
What is the name of the trial? Did you have to have a certain gene to get into the study?
I had known my cancer had come back and met with my oncologist to discuss my options with him and the hospital I was being treated at. Votrient had worked for 22 months and my body was beginning to get used to it and the cancer was coming back slowly. He raised my dosage. At that time I began talking about clinical trails. He briefly showed me what to look for in the trials and told me to narrow it down to about 30 and he would meet with me to discuss the pros and cons of each.
I scheduled an appointment with my oncologist. He scheduled it for the end of the day and spent about an hour discussing the trials with me. I went home and discussed the options with my wife. I than called my oncologist and told him which I wanted to try.I got my blood tests and he tested my tumor.
Once I knew that I had qualified for 3 different immunotherapy trials I began calling the contacts within the clinical infomation on the site I gave you.
Your doctors can assist with finding and locating clinical trails, but you will need to make the calls for the trials. You are essentially looking to leave the care of your current doctor for another. The people recruiting patients for the trials understand this and are extremely nice and helpful.
Let me know if you need anything. I would call about the trail to see if they will take you at age 60. You never go - go for it.
Jim
mary said:
Thank you everyone for the info.
I checked the trials online and unfortunately the age limit is 55 and I am 60. Dont know if they make any exceptions,does anyone know?
I need to keep looking at options. Maybe votrient might be an option for me? I did email my oncologist asking if he knew of a trial.
I had known my cancer had come back and met with my oncologist to discuss my options with him and the hospital I was being treated at. Votrient had worked for 22 months and my body was beginning to get used to it and the cancer was coming back slowly. He raised my dosage. At that time I began talking about clinical trails. He briefly showed me what to look for in the trials and told me to narrow it down to about 30 and he would meet with me to discuss the pros and cons of each.
I scheduled an appointment with my oncologist. He scheduled it for the end of the day and spent about an hour discussing the trials with me. I went home and discussed the options with my wife. I than called my oncologist and told him which I wanted to try.I got my blood tests and he tested my tumor.
Once I knew that I had qualified for 3 different immunotherapy trials I began calling the contacts within the clinical infomation on the site I gave you.
Your doctors can assist with finding and locating clinical trails, but you will need to make the calls for the trials. You are essentially looking to leave the care of your current doctor for another. The people recruiting patients for the trials understand this and are extremely nice and helpful.
Let me know if you need anything. I would call about the trail to see if they will take you at age 60. You never go - go for it.
Jim
mary said:
Thank you everyone for the info.
I checked the trials online and unfortunately the age limit is 55 and I am 60. Dont know if they make any exceptions,does anyone know?
I need to keep looking at options. Maybe votrient might be an option for me? I did email my oncologist asking if he knew of a trial.
mary said:Thank you so much Jim, we have to keep fighting this battle.Did you have side effects from the votrient?Good idea about calling the trial to see if they'll accept me,will the age be a factor.As you said, you never know.
jimK said:
I had known my cancer had come back and met with my oncologist to discuss my options with him and the hospital I was being treated at. Votrient had worked for 22 months and my body was beginning to get used to it and the cancer was coming back slowly. He raised my dosage. At that time I began talking about clinical trails. He briefly showed me what to look for in the trials and told me to narrow it down to about 30 and he would meet with me to discuss the pros and cons of each.
I scheduled an appointment with my oncologist. He scheduled it for the end of the day and spent about an hour discussing the trials with me. I went home and discussed the options with my wife. I than called my oncologist and told him which I wanted to try.I got my blood tests and he tested my tumor.
Once I knew that I had qualified for 3 different immunotherapy trials I began calling the contacts within the clinical infomation on the site I gave you.
Your doctors can assist with finding and locating clinical trails, but you will need to make the calls for the trials. You are essentially looking to leave the care of your current doctor for another. The people recruiting patients for the trials understand this and are extremely nice and helpful.
Let me know if you need anything. I would call about the trail to see if they will take you at age 60. You never go - go for it.
Jim
mary said:
Thank you everyone for the info.
I checked the trials online and unfortunately the age limit is 55 and I am 60. Dont know if they make any exceptions,does anyone know?
I need to keep looking at options. Maybe votrient might be an option for me? I did email my oncologist asking if he knew of a trial.
I had several side effects in the beginning with Votrient. They all evened out over time. These included fatigue, weakness and runs to the bathroom. I ended up in the emergency room with kidney pain. I was reduced from 800mgs to 400mg and brought back up to 800mgs over the next few weeks. I stayed at 800mgs without much to do except the bathroom issue.I was put on Tincture of Opium to control my bathroom issues. My lymph nodes shrank to the point of being normal and my dosage was reduced to 600mgs which I was on for about a year when it started coming back. I was bumped back up to 800mgs but that did not stop the growth which is when I started looking at trials.
mary said:
mary said:Thank you so much Jim, we have to keep fighting this battle.Did you have side effects from the votrient?Good idea about calling the trial to see if they'll accept me,will the age be a factor.As you said, you never know.
jimK said:
I had known my cancer had come back and met with my oncologist to discuss my options with him and the hospital I was being treated at. Votrient had worked for 22 months and my body was beginning to get used to it and the cancer was coming back slowly. He raised my dosage. At that time I began talking about clinical trails. He briefly showed me what to look for in the trials and told me to narrow it down to about 30 and he would meet with me to discuss the pros and cons of each.
I scheduled an appointment with my oncologist. He scheduled it for the end of the day and spent about an hour discussing the trials with me. I went home and discussed the options with my wife. I than called my oncologist and told him which I wanted to try.I got my blood tests and he tested my tumor.
Once I knew that I had qualified for 3 different immunotherapy trials I began calling the contacts within the clinical infomation on the site I gave you.
Your doctors can assist with finding and locating clinical trails, but you will need to make the calls for the trials. You are essentially looking to leave the care of your current doctor for another. The people recruiting patients for the trials understand this and are extremely nice and helpful.
Let me know if you need anything. I would call about the trail to see if they will take you at age 60. You never go - go for it.
Jim
mary said:
Thank you everyone for the info.
I checked the trials online and unfortunately the age limit is 55 and I am 60. Dont know if they make any exceptions,does anyone know?
I need to keep looking at options. Maybe votrient might be an option for me? I did email my oncologist asking if he knew of a trial.