› Forums › General Melanoma Community › Starting PD-1 trial at SCRI
- This topic has 24 replies, 6 voices, and was last updated 11 years, 1 month ago by
Tina D.
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- April 14, 2014 at 3:31 am
Hello to anyone that is interested,
I am Starting a PD-1 trial on April 28th at Sarah Cannon in Nashville. It will be a much longer commute than I'm used to bc I am from Atlanta and have been basically able to walk to Emory to see my doctors for the past 2.5 years. A bit nervous about the stress that comes along with that . But eager to start the trial. I've got a pretty debilitating cough from the 2 tumors in my lung. I'm just hoping this version of PD-1 called AMP-514 works as well as Merck's. They have been doing the study at lower doses so far and I will be joining for the highest dose of the study, so I guess that's a good thing.
The only treatments I've done so far have been braf (first zel and then the mek/braf combo) until it stopped working last month. So This will be my first dive into immunotherapy treatment. And I'm nervous! I want it to work so badly! I'm getting married in August!
I guess I don't know what I'm posting about in terms of questions, other than if anyone has experienced this AMP-514. Maybe some encouraging words or advice for this 27 year old new commuting immunotherapy patient. I know many of you have a lot of experience and are very seasoned at dealing with these things. I'm trying to decide if I should try to hang onto my job throughout this trial etc
oh also, does anyone have advice for what to take along with codeine cough syrup so I can sleep? It does wonders for my cough, but keeps me up all night.
thanks for reading.
- Replies
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- April 14, 2014 at 4:01 pm
It sounds like you are doing strong and living life good. As you probably know AMP-514 is by Astra Zeneca subsidiary company MedImmune. Although they aren't first or even 2nd to PD-1 like BMS or Merck maybe they have learned from them and it will be the bestest PD-1 ever 🙂
I'm going from St. Louis to see a Dr Shia at Sarah Cannon in Nashville this Thursday.
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- April 14, 2014 at 10:44 pm
Thanks for the encouraging words! I hope your trip to Nashville is fruitful. My doctor there is Infante. They are very helpful at Sarah Cannon.
Good luck to you!
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- April 14, 2014 at 10:44 pm
Thanks for the encouraging words! I hope your trip to Nashville is fruitful. My doctor there is Infante. They are very helpful at Sarah Cannon.
Good luck to you!
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- April 14, 2014 at 10:44 pm
Thanks for the encouraging words! I hope your trip to Nashville is fruitful. My doctor there is Infante. They are very helpful at Sarah Cannon.
Good luck to you!
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- April 14, 2014 at 4:01 pm
It sounds like you are doing strong and living life good. As you probably know AMP-514 is by Astra Zeneca subsidiary company MedImmune. Although they aren't first or even 2nd to PD-1 like BMS or Merck maybe they have learned from them and it will be the bestest PD-1 ever 🙂
I'm going from St. Louis to see a Dr Shia at Sarah Cannon in Nashville this Thursday.
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- April 14, 2014 at 4:01 pm
It sounds like you are doing strong and living life good. As you probably know AMP-514 is by Astra Zeneca subsidiary company MedImmune. Although they aren't first or even 2nd to PD-1 like BMS or Merck maybe they have learned from them and it will be the bestest PD-1 ever 🙂
I'm going from St. Louis to see a Dr Shia at Sarah Cannon in Nashville this Thursday.
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- April 14, 2014 at 10:28 pm
Hi Hannah,
Congratulations on getting into the trial. I reached out to Sarah Cannon today to see if the trial is still open for my dad. How long did it take for you to get in and begin treatment? We haven't begun any treatments yet, and Yervoy is the only option here in Memphis as he's BRAF -.
My dad also has mets in his lungs, but his cough is not severe. Unfortunately I can't lend any advice on what to take.
The PD1 trial sounds very encouraging. I wish you the best with your treatment – and with your upcoming wedding. Congratulations! Stay strong and positive 🙂
Laura
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- April 14, 2014 at 10:28 pm
Hi Hannah,
Congratulations on getting into the trial. I reached out to Sarah Cannon today to see if the trial is still open for my dad. How long did it take for you to get in and begin treatment? We haven't begun any treatments yet, and Yervoy is the only option here in Memphis as he's BRAF -.
My dad also has mets in his lungs, but his cough is not severe. Unfortunately I can't lend any advice on what to take.
The PD1 trial sounds very encouraging. I wish you the best with your treatment – and with your upcoming wedding. Congratulations! Stay strong and positive 🙂
Laura
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- April 14, 2014 at 10:42 pm
Hi Laura,
I heard about this trial a while ago, but at the time it wasn't open for a few months and I was still responding to BRAF meds. Once I stopped responding I thought my only option was ipi or IL-2. I could have started either of those right away, but didn't feel great about it. We then reached out to SCRI again and they reminded us that this trial was available in about a month. I was willing to wait. They got me signed up for it immediately and even got my start date pushed up a little. I start it two weeks from today.
they are very helpful. I hope they can help you and your dad as well.
Thanks and good luck!
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- April 14, 2014 at 10:42 pm
Hi Laura,
I heard about this trial a while ago, but at the time it wasn't open for a few months and I was still responding to BRAF meds. Once I stopped responding I thought my only option was ipi or IL-2. I could have started either of those right away, but didn't feel great about it. We then reached out to SCRI again and they reminded us that this trial was available in about a month. I was willing to wait. They got me signed up for it immediately and even got my start date pushed up a little. I start it two weeks from today.
they are very helpful. I hope they can help you and your dad as well.
Thanks and good luck!
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- April 14, 2014 at 11:08 pm
That's great to hear that they are so supportive. I hope to hear back in the next day or two if it's open to him. We just received the BRAF results Friday, and had our follow up appt today. The doc was ready to start him on Yervoy this morning, but I wanted to see if this trial was still open. There was a similar trial at Vandy, but I found out today that it is closed, so SCRI is our best bet at this point. If we can't get in now, I'm hoping the Yervoy will buy us some time until it's FDA approved.
Please keep us posted on how you are doing. All the best!
Laura
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- April 14, 2014 at 11:08 pm
That's great to hear that they are so supportive. I hope to hear back in the next day or two if it's open to him. We just received the BRAF results Friday, and had our follow up appt today. The doc was ready to start him on Yervoy this morning, but I wanted to see if this trial was still open. There was a similar trial at Vandy, but I found out today that it is closed, so SCRI is our best bet at this point. If we can't get in now, I'm hoping the Yervoy will buy us some time until it's FDA approved.
Please keep us posted on how you are doing. All the best!
Laura
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- April 14, 2014 at 11:08 pm
That's great to hear that they are so supportive. I hope to hear back in the next day or two if it's open to him. We just received the BRAF results Friday, and had our follow up appt today. The doc was ready to start him on Yervoy this morning, but I wanted to see if this trial was still open. There was a similar trial at Vandy, but I found out today that it is closed, so SCRI is our best bet at this point. If we can't get in now, I'm hoping the Yervoy will buy us some time until it's FDA approved.
Please keep us posted on how you are doing. All the best!
Laura
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- April 14, 2014 at 10:42 pm
Hi Laura,
I heard about this trial a while ago, but at the time it wasn't open for a few months and I was still responding to BRAF meds. Once I stopped responding I thought my only option was ipi or IL-2. I could have started either of those right away, but didn't feel great about it. We then reached out to SCRI again and they reminded us that this trial was available in about a month. I was willing to wait. They got me signed up for it immediately and even got my start date pushed up a little. I start it two weeks from today.
they are very helpful. I hope they can help you and your dad as well.
Thanks and good luck!
-
- April 14, 2014 at 10:28 pm
Hi Hannah,
Congratulations on getting into the trial. I reached out to Sarah Cannon today to see if the trial is still open for my dad. How long did it take for you to get in and begin treatment? We haven't begun any treatments yet, and Yervoy is the only option here in Memphis as he's BRAF -.
My dad also has mets in his lungs, but his cough is not severe. Unfortunately I can't lend any advice on what to take.
The PD1 trial sounds very encouraging. I wish you the best with your treatment – and with your upcoming wedding. Congratulations! Stay strong and positive 🙂
Laura
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- April 15, 2014 at 1:45 am
Goodluck Hannah!
I hope the amplimmune anti-PD1 stands up as well as the Merck and BMS products. I've been encouraging folks to look into this trial, when some were saying there were no more anti-PD1 trials available. Sarah Cannon is a great place. They just had nothing available when I needed it in 2010. I traveled from Chattanooga (thru Atlanta) to Tampa for the past 3 years for the Nivolumab (BMS anti-PD1) and remain NED. The travel, and trial, can be hard, but doable…my story is on my blog if you're interested. I wish you the best! C
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- April 15, 2014 at 1:45 am
Goodluck Hannah!
I hope the amplimmune anti-PD1 stands up as well as the Merck and BMS products. I've been encouraging folks to look into this trial, when some were saying there were no more anti-PD1 trials available. Sarah Cannon is a great place. They just had nothing available when I needed it in 2010. I traveled from Chattanooga (thru Atlanta) to Tampa for the past 3 years for the Nivolumab (BMS anti-PD1) and remain NED. The travel, and trial, can be hard, but doable…my story is on my blog if you're interested. I wish you the best! C
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- April 15, 2014 at 1:45 am
Goodluck Hannah!
I hope the amplimmune anti-PD1 stands up as well as the Merck and BMS products. I've been encouraging folks to look into this trial, when some were saying there were no more anti-PD1 trials available. Sarah Cannon is a great place. They just had nothing available when I needed it in 2010. I traveled from Chattanooga (thru Atlanta) to Tampa for the past 3 years for the Nivolumab (BMS anti-PD1) and remain NED. The travel, and trial, can be hard, but doable…my story is on my blog if you're interested. I wish you the best! C
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- April 15, 2014 at 12:49 pm
Good luck with the trial – I have read up on this one as well and it sounds promising. Commuting a long distance for treatment would be tough and I am fortunate not to be in that boat yet. If you can hang onto your job during the trial, I would highly recommend it. For me, I have a demanding job but it helps distract me from this awful disease. Good luck and keep us posted.
Kevin
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- April 15, 2014 at 12:49 pm
Good luck with the trial – I have read up on this one as well and it sounds promising. Commuting a long distance for treatment would be tough and I am fortunate not to be in that boat yet. If you can hang onto your job during the trial, I would highly recommend it. For me, I have a demanding job but it helps distract me from this awful disease. Good luck and keep us posted.
Kevin
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- April 15, 2014 at 12:49 pm
Good luck with the trial – I have read up on this one as well and it sounds promising. Commuting a long distance for treatment would be tough and I am fortunate not to be in that boat yet. If you can hang onto your job during the trial, I would highly recommend it. For me, I have a demanding job but it helps distract me from this awful disease. Good luck and keep us posted.
Kevin
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- April 19, 2014 at 2:21 pm
Hi there, I am glad you have this opportunity to get into a PD1 trial!! I am in the Merck trial at Vanderbilt in Nashville. I will be there the 28-30th ( because I have my treatment on the 28th and an endocrinology appt on the 30th and have abt an 8 hour round trip). So, if you would be interested in meeting up, we could possibly do that. Feel free to send me an email if you would like, and feel free to ask any questions I may be able to answer.
Tina
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- April 19, 2014 at 2:21 pm
Hi there, I am glad you have this opportunity to get into a PD1 trial!! I am in the Merck trial at Vanderbilt in Nashville. I will be there the 28-30th ( because I have my treatment on the 28th and an endocrinology appt on the 30th and have abt an 8 hour round trip). So, if you would be interested in meeting up, we could possibly do that. Feel free to send me an email if you would like, and feel free to ask any questions I may be able to answer.
Tina
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- April 19, 2014 at 2:21 pm
Hi there, I am glad you have this opportunity to get into a PD1 trial!! I am in the Merck trial at Vanderbilt in Nashville. I will be there the 28-30th ( because I have my treatment on the 28th and an endocrinology appt on the 30th and have abt an 8 hour round trip). So, if you would be interested in meeting up, we could possibly do that. Feel free to send me an email if you would like, and feel free to ask any questions I may be able to answer.
Tina
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