› Forums › General Melanoma Community › Denied PD1 trial in St Louis, appt in Nashville on the 8th
- This topic has 51 replies, 7 voices, and was last updated 10 years, 9 months ago by
Tina D.
- Post
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- June 27, 2013 at 2:23 pm
Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi.
Sorry to be so long in posting. My mel specialist ( in St Louis) consulted with a surgeon who said that getting a biposy was not something he felt was feasable with my tumors being so deep, and my long surgical history. This was difficult news to recieve! But, thank you to a dear friend who was able to think quickly and clearly ( thank you, Amy!) I now have an appt in Nashville to discuss the Pd1 trial there. One thing that poses a possible denial is my prednisone dosage after the autoimmune response to ipi. I am still on 5 mg prednisone, and that is not a problem, but they have to decide if the dosages, and tapering, fit in with the strict trial guidelines. I have not been able to be on here much due to ongoing set-backs from my husband's back surgery, but will try to post after my visit to TN. Still feeling wonderful and am SO thankful to be here to celebrate our youngest child's 14th birthday today! She was 2 years old when I was first diagnosed with both breast cancer and melanoma within 6 weeks of each other. Yes…I am very blessed to still be here and be able to kiss her sweet cheek this morning and wish her a happy birthday 🙂
Tina
- Replies
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- June 28, 2013 at 12:10 am
Hi Tina,
That's awesome that you might get into the trial at Vanderbilt. We are going down to Nashville on the 11th. The anti PD1 trial that Scott is trying to get into does have a chemo arm, so we just pray he could get the anti-pd 1 .
This all depends on if Scott's brain scan comes back clear on the 8th of July.
You & your family are our thoughts/prayers.
Lisa
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- June 28, 2013 at 12:10 am
Hi Tina,
That's awesome that you might get into the trial at Vanderbilt. We are going down to Nashville on the 11th. The anti PD1 trial that Scott is trying to get into does have a chemo arm, so we just pray he could get the anti-pd 1 .
This all depends on if Scott's brain scan comes back clear on the 8th of July.
You & your family are our thoughts/prayers.
Lisa
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- June 28, 2013 at 12:10 am
Hi Tina,
That's awesome that you might get into the trial at Vanderbilt. We are going down to Nashville on the 11th. The anti PD1 trial that Scott is trying to get into does have a chemo arm, so we just pray he could get the anti-pd 1 .
This all depends on if Scott's brain scan comes back clear on the 8th of July.
You & your family are our thoughts/prayers.
Lisa
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- June 28, 2013 at 1:57 am
Tina praying that you get so many more blessings.Keep us posted with your battle to get in a trial.Sorry that you also have to deal with husbands health issues on top of everthing else. Beat the Beast. Al
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- June 28, 2013 at 1:57 am
Tina praying that you get so many more blessings.Keep us posted with your battle to get in a trial.Sorry that you also have to deal with husbands health issues on top of everthing else. Beat the Beast. Al
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- June 28, 2013 at 1:57 am
Tina praying that you get so many more blessings.Keep us posted with your battle to get in a trial.Sorry that you also have to deal with husbands health issues on top of everthing else. Beat the Beast. Al
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- June 28, 2013 at 1:03 pm
Can’t wait to meet you in person!!
Amy -
- June 28, 2013 at 1:03 pm
Can’t wait to meet you in person!!
Amy -
- June 28, 2013 at 1:03 pm
Can’t wait to meet you in person!!
Amy -
- June 29, 2013 at 12:52 am
Hi Tina. I am Becky from Jackson ,Ms. I have stageIV melanoma. I have just returned from MD Anderson where I am starting the Anti-Pd 1 trial. I got my first treatment yesterday I feel so fortunate to have been accepted.There have been so many great success stories I have had a great experience there.Best of luck to you.Any questions, feel free to ask.
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- June 29, 2013 at 12:52 am
Hi Tina. I am Becky from Jackson ,Ms. I have stageIV melanoma. I have just returned from MD Anderson where I am starting the Anti-Pd 1 trial. I got my first treatment yesterday I feel so fortunate to have been accepted.There have been so many great success stories I have had a great experience there.Best of luck to you.Any questions, feel free to ask.
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- June 29, 2013 at 12:52 am
Hi Tina. I am Becky from Jackson ,Ms. I have stageIV melanoma. I have just returned from MD Anderson where I am starting the Anti-Pd 1 trial. I got my first treatment yesterday I feel so fortunate to have been accepted.There have been so many great success stories I have had a great experience there.Best of luck to you.Any questions, feel free to ask.
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- June 28, 2013 at 12:32 pm
Lisa, Is it Vanderbilt you are going to on the 11th? Which Dr are you seeing? I will be seeing Dr Sostern on the 8th. It will be a little more of a hike for you than for us, but still not too bad & certainly worth it! If it is the Merk PD1, there is a cross-over after 2 rounds, I believe. So, if he were to be randomized into the chemo arm, he could cross over to the PD1 after two rounds of chemo if he was not responding to the chemo. Hopefully he will get the PD1 from the start, though… he has sure had a very very rough road. If I remember your last post, he was feeling quite a bit better. How is he doing?
We will be up in your neck of the woods today at St Vincent for my husband's appointment.
Praying for you both today,
Tina
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- June 28, 2013 at 12:32 pm
Lisa, Is it Vanderbilt you are going to on the 11th? Which Dr are you seeing? I will be seeing Dr Sostern on the 8th. It will be a little more of a hike for you than for us, but still not too bad & certainly worth it! If it is the Merk PD1, there is a cross-over after 2 rounds, I believe. So, if he were to be randomized into the chemo arm, he could cross over to the PD1 after two rounds of chemo if he was not responding to the chemo. Hopefully he will get the PD1 from the start, though… he has sure had a very very rough road. If I remember your last post, he was feeling quite a bit better. How is he doing?
We will be up in your neck of the woods today at St Vincent for my husband's appointment.
Praying for you both today,
Tina
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- June 28, 2013 at 12:32 pm
Lisa, Is it Vanderbilt you are going to on the 11th? Which Dr are you seeing? I will be seeing Dr Sostern on the 8th. It will be a little more of a hike for you than for us, but still not too bad & certainly worth it! If it is the Merk PD1, there is a cross-over after 2 rounds, I believe. So, if he were to be randomized into the chemo arm, he could cross over to the PD1 after two rounds of chemo if he was not responding to the chemo. Hopefully he will get the PD1 from the start, though… he has sure had a very very rough road. If I remember your last post, he was feeling quite a bit better. How is he doing?
We will be up in your neck of the woods today at St Vincent for my husband's appointment.
Praying for you both today,
Tina
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- June 28, 2013 at 12:40 pm
Thank you, Karen,
My husband is still having a tough time of it, we see his surgeon again today. Hopefully soon he will be on the upswing!
Yes, milestones are always amazing and remind me how incredibly blessed I am to be here with my family still! We do cherish the days!!
I have been following your updates, and am glad you have a plan, though I know it is intimidating to you. It must help greatly to talk with others on here who have already had the gamma knife and done well with it and gotten good results!
Tina
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- June 28, 2013 at 12:40 pm
Thank you, Karen,
My husband is still having a tough time of it, we see his surgeon again today. Hopefully soon he will be on the upswing!
Yes, milestones are always amazing and remind me how incredibly blessed I am to be here with my family still! We do cherish the days!!
I have been following your updates, and am glad you have a plan, though I know it is intimidating to you. It must help greatly to talk with others on here who have already had the gamma knife and done well with it and gotten good results!
Tina
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- June 28, 2013 at 12:40 pm
Thank you, Karen,
My husband is still having a tough time of it, we see his surgeon again today. Hopefully soon he will be on the upswing!
Yes, milestones are always amazing and remind me how incredibly blessed I am to be here with my family still! We do cherish the days!!
I have been following your updates, and am glad you have a plan, though I know it is intimidating to you. It must help greatly to talk with others on here who have already had the gamma knife and done well with it and gotten good results!
Tina
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- June 29, 2013 at 2:11 am
Becky. I’m in Meridian and really need to contact someone who has been to Anderson! How can I reach you? I’m scared out off wits. My brother has OculR Melanoma and has an appointment next week at Anderson. Can I talk to you? -
- June 29, 2013 at 2:11 am
Becky. I’m in Meridian and really need to contact someone who has been to Anderson! How can I reach you? I’m scared out off wits. My brother has OculR Melanoma and has an appointment next week at Anderson. Can I talk to you? -
- June 29, 2013 at 2:11 am
Becky. I’m in Meridian and really need to contact someone who has been to Anderson! How can I reach you? I’m scared out off wits. My brother has OculR Melanoma and has an appointment next week at Anderson. Can I talk to you? -
- June 29, 2013 at 12:52 pm
Thank you, Becky… yes, it is a very hopeful sounding treatment. What a great day in the development of new treatments for this disease that had no options for so long. Are there 3 arms in your trial? I may have questions as I go along…
Thank you!
Tina
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- June 29, 2013 at 12:52 pm
Thank you, Becky… yes, it is a very hopeful sounding treatment. What a great day in the development of new treatments for this disease that had no options for so long. Are there 3 arms in your trial? I may have questions as I go along…
Thank you!
Tina
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- June 29, 2013 at 12:52 pm
Thank you, Becky… yes, it is a very hopeful sounding treatment. What a great day in the development of new treatments for this disease that had no options for so long. Are there 3 arms in your trial? I may have questions as I go along…
Thank you!
Tina
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- June 29, 2013 at 12:11 pm
Hi Tina,
Just saw that you were at St. Vincents yesterday, tell me again if you are ever there. We go to St. V's too. That's where Scott sees the radiation oncologist.
We see Dr. Puzanov in Nashville, it's him and Sosman. We have never met Sosman, but I hear they are both great. We really like Vanderbilt, lucky to have the option.
Scott is trying to get into the same trial that you are. We don't know how long you have to do the chemo for if you end up getting that. I do know that it's a 28 day washout period, so that would be tough.
Scott is OK, but overall declining in health. He is stopping work next week. He has 10 mets on his back, a few on his chest, 3 on his neck, blah, blah, blah, endless. This stuff is vicious. He is down to about 164 and he's 6 ft, 1. I don't think there is much time if he doesn't get the anti-pd1.
Hope your husband's visit went well and that you are hanging in there as best you can. Please let me know how it goes or if you have any tips after your visit. We will be there just a few days later. I think she told me on the phone that you have to wait a week or so to find out if you get the anti-pd1 or the Chemo. Did you hear that too?
Take care, Lisa
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- June 29, 2013 at 12:11 pm
Hi Tina,
Just saw that you were at St. Vincents yesterday, tell me again if you are ever there. We go to St. V's too. That's where Scott sees the radiation oncologist.
We see Dr. Puzanov in Nashville, it's him and Sosman. We have never met Sosman, but I hear they are both great. We really like Vanderbilt, lucky to have the option.
Scott is trying to get into the same trial that you are. We don't know how long you have to do the chemo for if you end up getting that. I do know that it's a 28 day washout period, so that would be tough.
Scott is OK, but overall declining in health. He is stopping work next week. He has 10 mets on his back, a few on his chest, 3 on his neck, blah, blah, blah, endless. This stuff is vicious. He is down to about 164 and he's 6 ft, 1. I don't think there is much time if he doesn't get the anti-pd1.
Hope your husband's visit went well and that you are hanging in there as best you can. Please let me know how it goes or if you have any tips after your visit. We will be there just a few days later. I think she told me on the phone that you have to wait a week or so to find out if you get the anti-pd1 or the Chemo. Did you hear that too?
Take care, Lisa
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- June 29, 2013 at 12:11 pm
Hi Tina,
Just saw that you were at St. Vincents yesterday, tell me again if you are ever there. We go to St. V's too. That's where Scott sees the radiation oncologist.
We see Dr. Puzanov in Nashville, it's him and Sosman. We have never met Sosman, but I hear they are both great. We really like Vanderbilt, lucky to have the option.
Scott is trying to get into the same trial that you are. We don't know how long you have to do the chemo for if you end up getting that. I do know that it's a 28 day washout period, so that would be tough.
Scott is OK, but overall declining in health. He is stopping work next week. He has 10 mets on his back, a few on his chest, 3 on his neck, blah, blah, blah, endless. This stuff is vicious. He is down to about 164 and he's 6 ft, 1. I don't think there is much time if he doesn't get the anti-pd1.
Hope your husband's visit went well and that you are hanging in there as best you can. Please let me know how it goes or if you have any tips after your visit. We will be there just a few days later. I think she told me on the phone that you have to wait a week or so to find out if you get the anti-pd1 or the Chemo. Did you hear that too?
Take care, Lisa
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- June 29, 2013 at 12:45 pm
Lisa, chances are that our paths came very close to crossing over the past 5 weeks if you have been there in that time. Mark has been IN St V more than he has been home. We were in the ortho and spine center. I do hope we are not there much anymore, but will probably have a follow up appt or 2. How often does Scott have to go there? It would bee nice to get to meet up if you both were up to it. Possibly our paths will cross in Nashville as time goes on….
Have you already met Dr Puzanov? I will be seeing Dr Sosman, but the 8th is my first appt there. I do not know how long everything takes after that. I am praying that Scott gets into the MERCK PD1 arm, I know he needs it so badly. There is also a BMS PD1 trial in St Louis, but there is no crossover… that is the trial that needed fresh biopsy. The waiting has to be brutal for you both with him feeling poorly. I have no symptoms as of now, and nothing visible to remind me of what is growing, so that makes a huge difference, I am sure. I do know it is growing, but as of yet, if I am having discomfort from it, I am mistaking it for back aches from time to time. After sleeping so many nights on hospital family beds, I have reason for some back ache,lol.
I am sorry he has had to stop working for the time being, and I am sure that has been a difficult and discouraging happening for you both. Disability is very quick to act in metastatic mel, if you have not already checked into that. I was sad to hear he is feeling poorly, it had sounded so hopeful that he was responding to the ipi. People can have responses at least up to one year after taking it, so he can YET have a response.
Praying for the best for you and for rapid entrance into the trial! We will have to keep up with each other, because it sounds inevitable our paths will cross sometime soon.
Praying for good and hopeful news for you.. and soon. Praying for strength and encouragement for you both,
Tina
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- June 29, 2013 at 12:45 pm
Lisa, chances are that our paths came very close to crossing over the past 5 weeks if you have been there in that time. Mark has been IN St V more than he has been home. We were in the ortho and spine center. I do hope we are not there much anymore, but will probably have a follow up appt or 2. How often does Scott have to go there? It would bee nice to get to meet up if you both were up to it. Possibly our paths will cross in Nashville as time goes on….
Have you already met Dr Puzanov? I will be seeing Dr Sosman, but the 8th is my first appt there. I do not know how long everything takes after that. I am praying that Scott gets into the MERCK PD1 arm, I know he needs it so badly. There is also a BMS PD1 trial in St Louis, but there is no crossover… that is the trial that needed fresh biopsy. The waiting has to be brutal for you both with him feeling poorly. I have no symptoms as of now, and nothing visible to remind me of what is growing, so that makes a huge difference, I am sure. I do know it is growing, but as of yet, if I am having discomfort from it, I am mistaking it for back aches from time to time. After sleeping so many nights on hospital family beds, I have reason for some back ache,lol.
I am sorry he has had to stop working for the time being, and I am sure that has been a difficult and discouraging happening for you both. Disability is very quick to act in metastatic mel, if you have not already checked into that. I was sad to hear he is feeling poorly, it had sounded so hopeful that he was responding to the ipi. People can have responses at least up to one year after taking it, so he can YET have a response.
Praying for the best for you and for rapid entrance into the trial! We will have to keep up with each other, because it sounds inevitable our paths will cross sometime soon.
Praying for good and hopeful news for you.. and soon. Praying for strength and encouragement for you both,
Tina
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- June 29, 2013 at 12:45 pm
Lisa, chances are that our paths came very close to crossing over the past 5 weeks if you have been there in that time. Mark has been IN St V more than he has been home. We were in the ortho and spine center. I do hope we are not there much anymore, but will probably have a follow up appt or 2. How often does Scott have to go there? It would bee nice to get to meet up if you both were up to it. Possibly our paths will cross in Nashville as time goes on….
Have you already met Dr Puzanov? I will be seeing Dr Sosman, but the 8th is my first appt there. I do not know how long everything takes after that. I am praying that Scott gets into the MERCK PD1 arm, I know he needs it so badly. There is also a BMS PD1 trial in St Louis, but there is no crossover… that is the trial that needed fresh biopsy. The waiting has to be brutal for you both with him feeling poorly. I have no symptoms as of now, and nothing visible to remind me of what is growing, so that makes a huge difference, I am sure. I do know it is growing, but as of yet, if I am having discomfort from it, I am mistaking it for back aches from time to time. After sleeping so many nights on hospital family beds, I have reason for some back ache,lol.
I am sorry he has had to stop working for the time being, and I am sure that has been a difficult and discouraging happening for you both. Disability is very quick to act in metastatic mel, if you have not already checked into that. I was sad to hear he is feeling poorly, it had sounded so hopeful that he was responding to the ipi. People can have responses at least up to one year after taking it, so he can YET have a response.
Praying for the best for you and for rapid entrance into the trial! We will have to keep up with each other, because it sounds inevitable our paths will cross sometime soon.
Praying for good and hopeful news for you.. and soon. Praying for strength and encouragement for you both,
Tina
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- June 30, 2013 at 5:29 pm
Hi Tina,
Sorry you have had to be a St V's so much. I'm sure it's extremely difficult with 2 people fighting health issues. Just like you guys we don't want to be back at St. V's either. Scott goes in for the brain scan on the 8th. Hopefully it's perfect and we never go back.
Will be thinking of you, and your Vandy visit on the 8th too. If you are in Indy you should let me know anytime. I'd meet you for lunch or coffee.
We have seen Dr. Puzanov twice already. I think the doctors are both great. Sosman has his name listed by all the trials though, so maybe we will see him next time.
What was the BMS trial about in St. Louis? Do you have any more info on that one? If it's a tumor that they need, then he has plenty to offer. If you know the number then I'll look it up. He needs anti PD-1 ASAP.
You are such a positive person. I'm sure it helps you in fighting this beast.
Stay in touch, Lisa
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- June 30, 2013 at 5:29 pm
Hi Tina,
Sorry you have had to be a St V's so much. I'm sure it's extremely difficult with 2 people fighting health issues. Just like you guys we don't want to be back at St. V's either. Scott goes in for the brain scan on the 8th. Hopefully it's perfect and we never go back.
Will be thinking of you, and your Vandy visit on the 8th too. If you are in Indy you should let me know anytime. I'd meet you for lunch or coffee.
We have seen Dr. Puzanov twice already. I think the doctors are both great. Sosman has his name listed by all the trials though, so maybe we will see him next time.
What was the BMS trial about in St. Louis? Do you have any more info on that one? If it's a tumor that they need, then he has plenty to offer. If you know the number then I'll look it up. He needs anti PD-1 ASAP.
You are such a positive person. I'm sure it helps you in fighting this beast.
Stay in touch, Lisa
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- June 30, 2013 at 5:29 pm
Hi Tina,
Sorry you have had to be a St V's so much. I'm sure it's extremely difficult with 2 people fighting health issues. Just like you guys we don't want to be back at St. V's either. Scott goes in for the brain scan on the 8th. Hopefully it's perfect and we never go back.
Will be thinking of you, and your Vandy visit on the 8th too. If you are in Indy you should let me know anytime. I'd meet you for lunch or coffee.
We have seen Dr. Puzanov twice already. I think the doctors are both great. Sosman has his name listed by all the trials though, so maybe we will see him next time.
What was the BMS trial about in St. Louis? Do you have any more info on that one? If it's a tumor that they need, then he has plenty to offer. If you know the number then I'll look it up. He needs anti PD-1 ASAP.
You are such a positive person. I'm sure it helps you in fighting this beast.
Stay in touch, Lisa
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- June 30, 2013 at 8:19 pm
Lisa… sending you an email with contact info for St Louis. The trial is similar to Merck, except no crossover if you get randomized to the chemo arm. I think it is otherwise the same… never got far enough to know all the details, though. I will find my paperwork, and get as much to you as I can. We both really like Dr Linette in St Louis… you would find him to be very kind and brilliant. I would love to meet up with you on one of my trips up there. I no longer go to IU Med for anything, but, anticipate a couple more appts for Mark at St V's
Tina
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- June 30, 2013 at 8:19 pm
Lisa… sending you an email with contact info for St Louis. The trial is similar to Merck, except no crossover if you get randomized to the chemo arm. I think it is otherwise the same… never got far enough to know all the details, though. I will find my paperwork, and get as much to you as I can. We both really like Dr Linette in St Louis… you would find him to be very kind and brilliant. I would love to meet up with you on one of my trips up there. I no longer go to IU Med for anything, but, anticipate a couple more appts for Mark at St V's
Tina
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- June 30, 2013 at 8:19 pm
Lisa… sending you an email with contact info for St Louis. The trial is similar to Merck, except no crossover if you get randomized to the chemo arm. I think it is otherwise the same… never got far enough to know all the details, though. I will find my paperwork, and get as much to you as I can. We both really like Dr Linette in St Louis… you would find him to be very kind and brilliant. I would love to meet up with you on one of my trips up there. I no longer go to IU Med for anything, but, anticipate a couple more appts for Mark at St V's
Tina
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