› Forums › General Melanoma Community › no trial
- This topic has 42 replies, 8 voices, and was last updated 10 years, 7 months ago by
jamieth29.
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- July 16, 2015 at 10:23 pm
Just leaving from moffitt. Things are really not going my way. So since i had a extra nodal extension in the path report from node dissection and have not had radiation they are not letting me in the trial. It would take 4 weeks for radiation treatment and another 4 weeks after treatment to get in. Two other people are in line for the spot and they obviously cant hold it for me. In another kick in the ass the checkmate 238 trial will exclude me also because radiation is the standard of care for a path report like mine and that trial does not allow any radiation. Not once have i had a doctor tell me this was going to be a factor. My home doctor actually told me he wouldn’t do radiation unless we didn’t have a choice. It doesn’t work very well and will most certainly give me lymphedema. Dr abdul said well the drugs will be available if you progress to stage 4…then i just about lost it in the exam room. Why the hell did she think i was there. I told her the whole point of me coming across the country was to find a treatment that may stop this before i progress. I feel like i got kicked in the chest. Also threw 800.00 out the window also. But who cares about that just icing on the cake…Totally crushed right now and not sure what my next move is.
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- July 17, 2015 at 12:56 am
Jamie, sorry to hear. When I was diagnosed Stage IV, I aggressively pursued TIL at NIH. I was initially accepted, but when I went back for surgery, they sent me home (too much progression). That ride home was the longest ride of my life (and whether I would survive was very much in question). I suspect that you're having a similar soul crushing experience. You'll get past it. You're aggressive and diligent and obviously intelligent. You'll figure out a good solution in time, though it may not happen today or tomorrow. Good luck.
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- July 17, 2015 at 1:40 am
Mat,
Thanks for the words…soul crushing experience is a good way to put it. Seems like everything I have done so far has just led to a closed door. I feel like a bomb waiting to go off and I’m not sure if the fuse is lit already. Funny thing is I did tell Dr Luke in Chicago that i had a extra nodal extension in the path report. I also told him I have had no treatments yet. He did say he would review my records but said I sounded like a good candidate for the 238 trial. The same trial moffitt said I wouldn’t meet requirements for. Crazy how it worked out that I needed radiation to get in combo trial and couldn’t have it for the 238 trial….but because i never got it I’m also ineligible for 238. WOW that is stupid. Just wish i could get direction. tomorrow is another day and I guess I’ll start the grind again. Right now just looking forward to getting home to my daughter and two boys. -
- July 17, 2015 at 1:40 am
Mat,
Thanks for the words…soul crushing experience is a good way to put it. Seems like everything I have done so far has just led to a closed door. I feel like a bomb waiting to go off and I’m not sure if the fuse is lit already. Funny thing is I did tell Dr Luke in Chicago that i had a extra nodal extension in the path report. I also told him I have had no treatments yet. He did say he would review my records but said I sounded like a good candidate for the 238 trial. The same trial moffitt said I wouldn’t meet requirements for. Crazy how it worked out that I needed radiation to get in combo trial and couldn’t have it for the 238 trial….but because i never got it I’m also ineligible for 238. WOW that is stupid. Just wish i could get direction. tomorrow is another day and I guess I’ll start the grind again. Right now just looking forward to getting home to my daughter and two boys. -
- July 17, 2015 at 1:40 am
Mat,
Thanks for the words…soul crushing experience is a good way to put it. Seems like everything I have done so far has just led to a closed door. I feel like a bomb waiting to go off and I’m not sure if the fuse is lit already. Funny thing is I did tell Dr Luke in Chicago that i had a extra nodal extension in the path report. I also told him I have had no treatments yet. He did say he would review my records but said I sounded like a good candidate for the 238 trial. The same trial moffitt said I wouldn’t meet requirements for. Crazy how it worked out that I needed radiation to get in combo trial and couldn’t have it for the 238 trial….but because i never got it I’m also ineligible for 238. WOW that is stupid. Just wish i could get direction. tomorrow is another day and I guess I’ll start the grind again. Right now just looking forward to getting home to my daughter and two boys.
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- July 17, 2015 at 12:56 am
Jamie, sorry to hear. When I was diagnosed Stage IV, I aggressively pursued TIL at NIH. I was initially accepted, but when I went back for surgery, they sent me home (too much progression). That ride home was the longest ride of my life (and whether I would survive was very much in question). I suspect that you're having a similar soul crushing experience. You'll get past it. You're aggressive and diligent and obviously intelligent. You'll figure out a good solution in time, though it may not happen today or tomorrow. Good luck.
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- July 17, 2015 at 12:56 am
Jamie, sorry to hear. When I was diagnosed Stage IV, I aggressively pursued TIL at NIH. I was initially accepted, but when I went back for surgery, they sent me home (too much progression). That ride home was the longest ride of my life (and whether I would survive was very much in question). I suspect that you're having a similar soul crushing experience. You'll get past it. You're aggressive and diligent and obviously intelligent. You'll figure out a good solution in time, though it may not happen today or tomorrow. Good luck.
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- July 17, 2015 at 1:30 am
Dang. That sucks man. But like my mom says when stuff happens to me it just wasn't meant to be right now. Keep searching for the path you want to take. Never give up. Never surrender. Mat reminds me of NIH. I've been trying to get to NIH since last November. My walking went bad so I fought through that. My spine couldn't handle the turbulence of a flight so I got cement there. I felt crummy but I fought and got better. I've worked with the nurse every week for 2 months. Finally in a few weeks I might finally get there. Wouldn't surprise me in the least they turn me away. At least I know I've tried and I've got plan b and c ready to start. Just gotta pick ourselves up from our boot straps and keep chugging along. Good luck.
Artie
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- July 17, 2015 at 12:18 pm
Jamie, I had what was over a year of rejections and failures. Then I went into a TIL like trial at NIH. That failed too but then I entered an Extended Access Program for Keytruda at Georgetown and had an immediate response. It's a tough road but continue to lean on us!
All the best…
Terrie
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- July 17, 2015 at 12:18 pm
Jamie, I had what was over a year of rejections and failures. Then I went into a TIL like trial at NIH. That failed too but then I entered an Extended Access Program for Keytruda at Georgetown and had an immediate response. It's a tough road but continue to lean on us!
All the best…
Terrie
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- July 17, 2015 at 12:18 pm
Jamie, I had what was over a year of rejections and failures. Then I went into a TIL like trial at NIH. That failed too but then I entered an Extended Access Program for Keytruda at Georgetown and had an immediate response. It's a tough road but continue to lean on us!
All the best…
Terrie
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- July 17, 2015 at 1:30 am
Dang. That sucks man. But like my mom says when stuff happens to me it just wasn't meant to be right now. Keep searching for the path you want to take. Never give up. Never surrender. Mat reminds me of NIH. I've been trying to get to NIH since last November. My walking went bad so I fought through that. My spine couldn't handle the turbulence of a flight so I got cement there. I felt crummy but I fought and got better. I've worked with the nurse every week for 2 months. Finally in a few weeks I might finally get there. Wouldn't surprise me in the least they turn me away. At least I know I've tried and I've got plan b and c ready to start. Just gotta pick ourselves up from our boot straps and keep chugging along. Good luck.
Artie
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- July 17, 2015 at 1:30 am
Dang. That sucks man. But like my mom says when stuff happens to me it just wasn't meant to be right now. Keep searching for the path you want to take. Never give up. Never surrender. Mat reminds me of NIH. I've been trying to get to NIH since last November. My walking went bad so I fought through that. My spine couldn't handle the turbulence of a flight so I got cement there. I felt crummy but I fought and got better. I've worked with the nurse every week for 2 months. Finally in a few weeks I might finally get there. Wouldn't surprise me in the least they turn me away. At least I know I've tried and I've got plan b and c ready to start. Just gotta pick ourselves up from our boot straps and keep chugging along. Good luck.
Artie
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- July 17, 2015 at 6:08 pm
Hi Jamie, I was thinking about other options for you to explore. I have been following Dr. Omid Hamid of the Angles Clinic on twitter ( @omidHamidMD ) and he posted acouple of videos in the last few weeks. On July 1 he posted a video on youtube about Immuno-Oncoloy, Immune Therapy,Pd-1 in Melanoma. It is very informative and he talks about new trials that are coming out including in the adjuvant setting. He might be the right person to get some new ideas from. I hope that this might get you started again with some new options. Wishing you the best!!!! Ed
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- July 17, 2015 at 9:00 pm
Hi Jamie & Ed!
Dr. Hamid is one of my fiance's oncologists. He's our go to guy for melanoma treatment! He is AMAZING. I highly recommend him. He has been one of the few doctors who as looked at Dave's case and has given us hope and reassurance that Dave can beat his disease. Dr. Hamid is the one who pushed for Dave to be treated with Keytruda as a first round treatment. He's also been wonderful working with our insurance and other doctors – Dave is covered by Kaiser, so we pay out of pocket to see Dr. Hamid. He really, truly cares about his patients. There are also a TON of clinical trials going on through the Angeles Clinic. Good luck – you'll find the right treatment for you (and Dr. Hamid is a great resource to steer you in the right direction!).
Best wishes,
Katie
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- July 17, 2015 at 9:00 pm
Hi Jamie & Ed!
Dr. Hamid is one of my fiance's oncologists. He's our go to guy for melanoma treatment! He is AMAZING. I highly recommend him. He has been one of the few doctors who as looked at Dave's case and has given us hope and reassurance that Dave can beat his disease. Dr. Hamid is the one who pushed for Dave to be treated with Keytruda as a first round treatment. He's also been wonderful working with our insurance and other doctors – Dave is covered by Kaiser, so we pay out of pocket to see Dr. Hamid. He really, truly cares about his patients. There are also a TON of clinical trials going on through the Angeles Clinic. Good luck – you'll find the right treatment for you (and Dr. Hamid is a great resource to steer you in the right direction!).
Best wishes,
Katie
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- July 17, 2015 at 9:00 pm
Hi Jamie & Ed!
Dr. Hamid is one of my fiance's oncologists. He's our go to guy for melanoma treatment! He is AMAZING. I highly recommend him. He has been one of the few doctors who as looked at Dave's case and has given us hope and reassurance that Dave can beat his disease. Dr. Hamid is the one who pushed for Dave to be treated with Keytruda as a first round treatment. He's also been wonderful working with our insurance and other doctors – Dave is covered by Kaiser, so we pay out of pocket to see Dr. Hamid. He really, truly cares about his patients. There are also a TON of clinical trials going on through the Angeles Clinic. Good luck – you'll find the right treatment for you (and Dr. Hamid is a great resource to steer you in the right direction!).
Best wishes,
Katie
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- July 17, 2015 at 10:18 pm
Dr Abdul called me back from moffitt and after talking to Dr weber told me she was wrong about requiring radiation for the ipi/nivo combo trial. He told her it was NOT required. He also told her I AM eligible for the checkmate 238 trial. I am so pissed at the misinformation this doctor spewed from her mouth. I then said I want the trial paper work for the ipi/nivo combo trial. She then tells me about 2 other people that Dr weber gave the trial paper work to already and informs me they are ahead of me…if they want the spot it is theirs. Before I went down there I specifically asked if I would be offered the spot and was told yes by Allison the trial nurse. I’m so pissed over this it isnt even funny. I did call Allison back and asked her why this went down like it did…her response was that the trial was technically closed and when I had called nobody had expressed any intrest in the trial for 2 months so she thought I had a very good chance of getting in. Dr weber although had seen 2 patients this week that he gave the paper work to and because they had appointments before me the spot was there’s. Wow what drama… met with a radiologist today who said I would benefit from radiation. Although he agreed that systemic disease was my number 1 threat and thought I should address that first if radiation kept me out of a trial. I have a appt with Dr Luke Tuesday and I’m just going to ask him strait out what to do. 1- radiation at home and wait for a different trial… 2 the 238 trial…3 radiation and possibly ipi at home. So iguess right now what it all comes down to is of the 50% chance i have at getting nivo in the 238 trial is worth it. Otherwise if a draw ipi at the trial… I could of got that at home with radiation. Crazy crazy last 2 days. -
- July 18, 2015 at 12:02 am
Jamie,
Sorry for all your gut punches you've been getting lately. It really is crappy how some of it has gone down. If I was in your shoes I'd also be fighting hard for a ipi-nivo combo. Having said that I think your back up option is a great option also. If you do end up going that route I know the travel seems daunting but over time it just becomes part of the routine. I've been traveling 12 hours round trip every two weeks for nearly two years now and I can't believe how fast the time has gone by.
Brian
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- July 18, 2015 at 12:02 am
Jamie,
Sorry for all your gut punches you've been getting lately. It really is crappy how some of it has gone down. If I was in your shoes I'd also be fighting hard for a ipi-nivo combo. Having said that I think your back up option is a great option also. If you do end up going that route I know the travel seems daunting but over time it just becomes part of the routine. I've been traveling 12 hours round trip every two weeks for nearly two years now and I can't believe how fast the time has gone by.
Brian
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- July 18, 2015 at 12:02 am
Jamie,
Sorry for all your gut punches you've been getting lately. It really is crappy how some of it has gone down. If I was in your shoes I'd also be fighting hard for a ipi-nivo combo. Having said that I think your back up option is a great option also. If you do end up going that route I know the travel seems daunting but over time it just becomes part of the routine. I've been traveling 12 hours round trip every two weeks for nearly two years now and I can't believe how fast the time has gone by.
Brian
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- July 20, 2015 at 6:50 am
Gee talk about the TRIALS of getting to a TRIAL! Sorry, bad pun I know. I am so angry on your behalf. All that sloppy communication causing you undue stress and trouble. I don't have any real practical suggestions, just wanted to wish you luck and fingers crossed you get on track with the right trial soon.
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- July 20, 2015 at 6:50 am
Gee talk about the TRIALS of getting to a TRIAL! Sorry, bad pun I know. I am so angry on your behalf. All that sloppy communication causing you undue stress and trouble. I don't have any real practical suggestions, just wanted to wish you luck and fingers crossed you get on track with the right trial soon.
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- July 20, 2015 at 6:50 am
Gee talk about the TRIALS of getting to a TRIAL! Sorry, bad pun I know. I am so angry on your behalf. All that sloppy communication causing you undue stress and trouble. I don't have any real practical suggestions, just wanted to wish you luck and fingers crossed you get on track with the right trial soon.
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- July 17, 2015 at 10:18 pm
Dr Abdul called me back from moffitt and after talking to Dr weber told me she was wrong about requiring radiation for the ipi/nivo combo trial. He told her it was NOT required. He also told her I AM eligible for the checkmate 238 trial. I am so pissed at the misinformation this doctor spewed from her mouth. I then said I want the trial paper work for the ipi/nivo combo trial. She then tells me about 2 other people that Dr weber gave the trial paper work to already and informs me they are ahead of me…if they want the spot it is theirs. Before I went down there I specifically asked if I would be offered the spot and was told yes by Allison the trial nurse. I’m so pissed over this it isnt even funny. I did call Allison back and asked her why this went down like it did…her response was that the trial was technically closed and when I had called nobody had expressed any intrest in the trial for 2 months so she thought I had a very good chance of getting in. Dr weber although had seen 2 patients this week that he gave the paper work to and because they had appointments before me the spot was there’s. Wow what drama… met with a radiologist today who said I would benefit from radiation. Although he agreed that systemic disease was my number 1 threat and thought I should address that first if radiation kept me out of a trial. I have a appt with Dr Luke Tuesday and I’m just going to ask him strait out what to do. 1- radiation at home and wait for a different trial… 2 the 238 trial…3 radiation and possibly ipi at home. So iguess right now what it all comes down to is of the 50% chance i have at getting nivo in the 238 trial is worth it. Otherwise if a draw ipi at the trial… I could of got that at home with radiation. Crazy crazy last 2 days. -
- July 17, 2015 at 10:18 pm
Dr Abdul called me back from moffitt and after talking to Dr weber told me she was wrong about requiring radiation for the ipi/nivo combo trial. He told her it was NOT required. He also told her I AM eligible for the checkmate 238 trial. I am so pissed at the misinformation this doctor spewed from her mouth. I then said I want the trial paper work for the ipi/nivo combo trial. She then tells me about 2 other people that Dr weber gave the trial paper work to already and informs me they are ahead of me…if they want the spot it is theirs. Before I went down there I specifically asked if I would be offered the spot and was told yes by Allison the trial nurse. I’m so pissed over this it isnt even funny. I did call Allison back and asked her why this went down like it did…her response was that the trial was technically closed and when I had called nobody had expressed any intrest in the trial for 2 months so she thought I had a very good chance of getting in. Dr weber although had seen 2 patients this week that he gave the paper work to and because they had appointments before me the spot was there’s. Wow what drama… met with a radiologist today who said I would benefit from radiation. Although he agreed that systemic disease was my number 1 threat and thought I should address that first if radiation kept me out of a trial. I have a appt with Dr Luke Tuesday and I’m just going to ask him strait out what to do. 1- radiation at home and wait for a different trial… 2 the 238 trial…3 radiation and possibly ipi at home. So iguess right now what it all comes down to is of the 50% chance i have at getting nivo in the 238 trial is worth it. Otherwise if a draw ipi at the trial… I could of got that at home with radiation. Crazy crazy last 2 days.
-
- July 17, 2015 at 6:08 pm
Hi Jamie, I was thinking about other options for you to explore. I have been following Dr. Omid Hamid of the Angles Clinic on twitter ( @omidHamidMD ) and he posted acouple of videos in the last few weeks. On July 1 he posted a video on youtube about Immuno-Oncoloy, Immune Therapy,Pd-1 in Melanoma. It is very informative and he talks about new trials that are coming out including in the adjuvant setting. He might be the right person to get some new ideas from. I hope that this might get you started again with some new options. Wishing you the best!!!! Ed
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- July 17, 2015 at 6:08 pm
Hi Jamie, I was thinking about other options for you to explore. I have been following Dr. Omid Hamid of the Angles Clinic on twitter ( @omidHamidMD ) and he posted acouple of videos in the last few weeks. On July 1 he posted a video on youtube about Immuno-Oncoloy, Immune Therapy,Pd-1 in Melanoma. It is very informative and he talks about new trials that are coming out including in the adjuvant setting. He might be the right person to get some new ideas from. I hope that this might get you started again with some new options. Wishing you the best!!!! Ed
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