› Forums › General Melanoma Community › What a difference a scan can make
- This topic has 48 replies, 14 voices, and was last updated 7 years, 8 months ago by
WithinMySkin.
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- August 4, 2016 at 9:11 pm
Last week I was in efforts to return to my pre-melanoma flying career and purchase a house. That all changed Tuesday when I got the result back from my latest scan. After two years of stability and one year off treatment it looks as if my melanoma is on the move again. To say this sucks doesn't do it justice. I'm still having a hard time believing it.
Meeting with Dr. Weber tomorrow to discuss options. The obvious choice is to restart nivo and hope it picks up right where it left off. Burning the midnight oil on Trialsl. I might have some challenges with some of the various trial prerequisites. Fortuntely right now I only have two small nodes grouped together so having a biopsy and a marker tumor may be difficult if that's a requirement. If anyone has any idea on trials let me know. I really like the sound of Josh's trial but again not sure if I would qualify.
Sorry to be a Debbie Downer. I know anytime there's news like this we all feel a little more vulnerable. At first I was a pretty down but I'm starting to get the fighting spirit back. I'll let you know what Dr. Weber says tomorrow.
Brian
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- August 4, 2016 at 11:05 pm
Hang in there Buddy! I truly feel your pain. We never quit.
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- August 4, 2016 at 11:05 pm
Hang in there Buddy! I truly feel your pain. We never quit.
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- August 4, 2016 at 11:05 pm
Hang in there Buddy! I truly feel your pain. We never quit.
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- August 5, 2016 at 12:56 am
Oh man I'm sorry!!! I hate this @$&#%% so much!!! I know that feeling Brian, I went long time and then bam May 4th…big and multiple spots. I'm so pissed and overcome by emotion right now, so talk about being a Debbie Downer…they need to figure out quickly why this isn't durable for so many. I was already so damn miserable and now hearing this about you. I'm sorry…just so aggravated. It also frustrates me because with previous treatments you're probably excluded from many trials…just like me. They can have data for pre-treated as well as treatment naive. For my trial you need the following…
HLA-A201 Positive Blood
Mart 1+ Tumor Stain/Expression
That gets you into leukaphresis. From there they said they've been successful separating out the antigen specific CD 8+ cells and growing them. After that screening and infusion date. Obviously a bit more involved but that's nuts & bolts.
I can send any info you need…let me know. Sorry you're dealing with this! Hang in there!
Josh
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- August 5, 2016 at 12:56 am
Oh man I'm sorry!!! I hate this @$&#%% so much!!! I know that feeling Brian, I went long time and then bam May 4th…big and multiple spots. I'm so pissed and overcome by emotion right now, so talk about being a Debbie Downer…they need to figure out quickly why this isn't durable for so many. I was already so damn miserable and now hearing this about you. I'm sorry…just so aggravated. It also frustrates me because with previous treatments you're probably excluded from many trials…just like me. They can have data for pre-treated as well as treatment naive. For my trial you need the following…
HLA-A201 Positive Blood
Mart 1+ Tumor Stain/Expression
That gets you into leukaphresis. From there they said they've been successful separating out the antigen specific CD 8+ cells and growing them. After that screening and infusion date. Obviously a bit more involved but that's nuts & bolts.
I can send any info you need…let me know. Sorry you're dealing with this! Hang in there!
Josh
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- August 5, 2016 at 12:56 am
Oh man I'm sorry!!! I hate this @$&#%% so much!!! I know that feeling Brian, I went long time and then bam May 4th…big and multiple spots. I'm so pissed and overcome by emotion right now, so talk about being a Debbie Downer…they need to figure out quickly why this isn't durable for so many. I was already so damn miserable and now hearing this about you. I'm sorry…just so aggravated. It also frustrates me because with previous treatments you're probably excluded from many trials…just like me. They can have data for pre-treated as well as treatment naive. For my trial you need the following…
HLA-A201 Positive Blood
Mart 1+ Tumor Stain/Expression
That gets you into leukaphresis. From there they said they've been successful separating out the antigen specific CD 8+ cells and growing them. After that screening and infusion date. Obviously a bit more involved but that's nuts & bolts.
I can send any info you need…let me know. Sorry you're dealing with this! Hang in there!
Josh
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- August 5, 2016 at 2:52 am
So sorry, Brian. I know progression is not at all what you were expecting!!! So very, very sorry. Your post title is very apt for the world in which we live. Just today I got good news that one of my peep's had a scan that was surprisingly good with a stable lesion rather than a progressing one…and another had developed a brain met after years of NED. Now your news. But, despite my sadness for your result, I am glad that you shared. I am glad you are seeing Weber. If any body can find a trial/treatment to fit your situation…it is he. Just a few weeks ago a couple I have been working with were very jaded to find that 4 of the 5 melanoma specialists they had seen recommended only trials that their institutions were running and didn't really have any additional info or a desire to speak about other treatment options. However, Weber recommended what he thought was best and it was NOT at his facility! Yet, he knew all about it and gave good reasons as to why he thought it appropriate. I am sure that knowledge will work for you tomorrow. Unfortunately…our path is filled with worry and tears at least as often as it is with joy. But, those of us who make up this board are here….everyday… NO. Matter. WHAT!!!! Keep us posted. love, c
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- August 5, 2016 at 2:52 am
So sorry, Brian. I know progression is not at all what you were expecting!!! So very, very sorry. Your post title is very apt for the world in which we live. Just today I got good news that one of my peep's had a scan that was surprisingly good with a stable lesion rather than a progressing one…and another had developed a brain met after years of NED. Now your news. But, despite my sadness for your result, I am glad that you shared. I am glad you are seeing Weber. If any body can find a trial/treatment to fit your situation…it is he. Just a few weeks ago a couple I have been working with were very jaded to find that 4 of the 5 melanoma specialists they had seen recommended only trials that their institutions were running and didn't really have any additional info or a desire to speak about other treatment options. However, Weber recommended what he thought was best and it was NOT at his facility! Yet, he knew all about it and gave good reasons as to why he thought it appropriate. I am sure that knowledge will work for you tomorrow. Unfortunately…our path is filled with worry and tears at least as often as it is with joy. But, those of us who make up this board are here….everyday… NO. Matter. WHAT!!!! Keep us posted. love, c
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- August 5, 2016 at 2:52 am
So sorry, Brian. I know progression is not at all what you were expecting!!! So very, very sorry. Your post title is very apt for the world in which we live. Just today I got good news that one of my peep's had a scan that was surprisingly good with a stable lesion rather than a progressing one…and another had developed a brain met after years of NED. Now your news. But, despite my sadness for your result, I am glad that you shared. I am glad you are seeing Weber. If any body can find a trial/treatment to fit your situation…it is he. Just a few weeks ago a couple I have been working with were very jaded to find that 4 of the 5 melanoma specialists they had seen recommended only trials that their institutions were running and didn't really have any additional info or a desire to speak about other treatment options. However, Weber recommended what he thought was best and it was NOT at his facility! Yet, he knew all about it and gave good reasons as to why he thought it appropriate. I am sure that knowledge will work for you tomorrow. Unfortunately…our path is filled with worry and tears at least as often as it is with joy. But, those of us who make up this board are here….everyday… NO. Matter. WHAT!!!! Keep us posted. love, c
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- August 5, 2016 at 5:45 pm
Hey Debbie…er, Brian,
No worries about sharing the setback. You have been a voice of reason, and extraordinary help to many on this board and while the news is a _ _ _ _ _ _ _ drag, following various people on this board through the ups and downs is incredibly helpful. We are confident you are in good hands with Weber and will find a way to tackle the beast again. Keep your eye on your long term goals because you will get there. Fly high, we are with you, and know you'll be here, contributing much more along the way.
Gary
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- August 5, 2016 at 5:45 pm
Hey Debbie…er, Brian,
No worries about sharing the setback. You have been a voice of reason, and extraordinary help to many on this board and while the news is a _ _ _ _ _ _ _ drag, following various people on this board through the ups and downs is incredibly helpful. We are confident you are in good hands with Weber and will find a way to tackle the beast again. Keep your eye on your long term goals because you will get there. Fly high, we are with you, and know you'll be here, contributing much more along the way.
Gary
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- August 5, 2016 at 5:45 pm
Hey Debbie…er, Brian,
No worries about sharing the setback. You have been a voice of reason, and extraordinary help to many on this board and while the news is a _ _ _ _ _ _ _ drag, following various people on this board through the ups and downs is incredibly helpful. We are confident you are in good hands with Weber and will find a way to tackle the beast again. Keep your eye on your long term goals because you will get there. Fly high, we are with you, and know you'll be here, contributing much more along the way.
Gary
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- August 5, 2016 at 7:38 pm
Oh Brian, so sorry for this disappointment and frustration. Hope you're feeling more hopeful after your meeting today.
Gwen
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- August 5, 2016 at 7:38 pm
Oh Brian, so sorry for this disappointment and frustration. Hope you're feeling more hopeful after your meeting today.
Gwen
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- August 5, 2016 at 7:38 pm
Oh Brian, so sorry for this disappointment and frustration. Hope you're feeling more hopeful after your meeting today.
Gwen
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- August 6, 2016 at 4:59 am
Brian, I am so very sorry to hear of your setback. I do hope nivo or a similar immunotherapy – or perhaps the combo? – will squash your mel and put it in its place!
Please do keep us posted on Dr. Weber's recommendations, and know we are all here for you as your "cut man" when your need to get back in the ring to fight this beast.
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- August 6, 2016 at 4:59 am
Brian, I am so very sorry to hear of your setback. I do hope nivo or a similar immunotherapy – or perhaps the combo? – will squash your mel and put it in its place!
Please do keep us posted on Dr. Weber's recommendations, and know we are all here for you as your "cut man" when your need to get back in the ring to fight this beast.
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- August 6, 2016 at 4:59 am
Brian, I am so very sorry to hear of your setback. I do hope nivo or a similar immunotherapy – or perhaps the combo? – will squash your mel and put it in its place!
Please do keep us posted on Dr. Weber's recommendations, and know we are all here for you as your "cut man" when your need to get back in the ring to fight this beast.
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- August 6, 2016 at 6:18 pm
Thanks for all the kind words and support everyone. It was a good appointment with Dr. Weber. I wish I would have recorded it because anyone who's met with Dr. Weber knows he can sometimes go a mile a minute and it's hard to take everything in.
The promising part of the meeting is Dr. Weber is not quite ready to call these new nodes melanoma. The frustrating aspect of that is due to what Dr. Weber called a "shoddy" Petscan report we really don't know where we are right now. There was no SUV designation on the PET report for the nodes with uptake. Dr. Weber says my immune system was on overdrive for two years and he's thinks this could still be some type of immune system phenomenon. The pessimist in me believes that it probably had a high SUV since the radiologist suggested it was likely melanoma. Of course my oncologist was not in the office Friday to answer the SUV question so I have to wait until Monday. Dr. Weber gave me his number to call him when I have the answer. His basic thinking was if the SUV is low do nothing and rescan, low to medium stick a needle in it to see what we have, medium to high start treating.
We talked about a few options.
1) Surgery: most aggressive but downside is it would potentially render me with no active disease so the only follow up treatment would probably be an adjuvant vaccine trial.
2) Ipi/Nivo combo: another aggressive plan but due to my non response in the past to Ipi and the tough side effect experienced it may not be the best option.
3) Nivo: Based on his experience and what he's hearing Dr. Weber thinks for those that were anti-pd1 responders who recur after stopping treatment the response rate the second time around will be about 80%. His thought on the nivo treatment was to treat for a certain time frame and then resect anything remaining.
4) I had a list of about 6 trials (Josh's included) I was considering and wanted to run them by him but due to the length of the appointment and the fact at this point we don't know where we are without the SUV answer I didn't get to them. I did ask him about trial options and he perked up about a trial they are doing there. It is NCT02253992 which is a combination of nivo and Urelumab. It's being offered in several locations but unfortunately the closet is about 7 hours from me. Not out of the question but tough nonetheless.
He talked briefly about the success rate of the IPI/Nivo trials. None of the data is published yet but his gut feeling is those who are complete responders will probably have about a 95% long term durability and those that are partial responders like myself will be around 70%.
That's all for now. I'll let you all know what the SUV is. So much fun waiting for these kind of answers!!!
Brian
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- August 6, 2016 at 6:18 pm
Thanks for all the kind words and support everyone. It was a good appointment with Dr. Weber. I wish I would have recorded it because anyone who's met with Dr. Weber knows he can sometimes go a mile a minute and it's hard to take everything in.
The promising part of the meeting is Dr. Weber is not quite ready to call these new nodes melanoma. The frustrating aspect of that is due to what Dr. Weber called a "shoddy" Petscan report we really don't know where we are right now. There was no SUV designation on the PET report for the nodes with uptake. Dr. Weber says my immune system was on overdrive for two years and he's thinks this could still be some type of immune system phenomenon. The pessimist in me believes that it probably had a high SUV since the radiologist suggested it was likely melanoma. Of course my oncologist was not in the office Friday to answer the SUV question so I have to wait until Monday. Dr. Weber gave me his number to call him when I have the answer. His basic thinking was if the SUV is low do nothing and rescan, low to medium stick a needle in it to see what we have, medium to high start treating.
We talked about a few options.
1) Surgery: most aggressive but downside is it would potentially render me with no active disease so the only follow up treatment would probably be an adjuvant vaccine trial.
2) Ipi/Nivo combo: another aggressive plan but due to my non response in the past to Ipi and the tough side effect experienced it may not be the best option.
3) Nivo: Based on his experience and what he's hearing Dr. Weber thinks for those that were anti-pd1 responders who recur after stopping treatment the response rate the second time around will be about 80%. His thought on the nivo treatment was to treat for a certain time frame and then resect anything remaining.
4) I had a list of about 6 trials (Josh's included) I was considering and wanted to run them by him but due to the length of the appointment and the fact at this point we don't know where we are without the SUV answer I didn't get to them. I did ask him about trial options and he perked up about a trial they are doing there. It is NCT02253992 which is a combination of nivo and Urelumab. It's being offered in several locations but unfortunately the closet is about 7 hours from me. Not out of the question but tough nonetheless.
He talked briefly about the success rate of the IPI/Nivo trials. None of the data is published yet but his gut feeling is those who are complete responders will probably have about a 95% long term durability and those that are partial responders like myself will be around 70%.
That's all for now. I'll let you all know what the SUV is. So much fun waiting for these kind of answers!!!
Brian
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- August 6, 2016 at 6:18 pm
Thanks for all the kind words and support everyone. It was a good appointment with Dr. Weber. I wish I would have recorded it because anyone who's met with Dr. Weber knows he can sometimes go a mile a minute and it's hard to take everything in.
The promising part of the meeting is Dr. Weber is not quite ready to call these new nodes melanoma. The frustrating aspect of that is due to what Dr. Weber called a "shoddy" Petscan report we really don't know where we are right now. There was no SUV designation on the PET report for the nodes with uptake. Dr. Weber says my immune system was on overdrive for two years and he's thinks this could still be some type of immune system phenomenon. The pessimist in me believes that it probably had a high SUV since the radiologist suggested it was likely melanoma. Of course my oncologist was not in the office Friday to answer the SUV question so I have to wait until Monday. Dr. Weber gave me his number to call him when I have the answer. His basic thinking was if the SUV is low do nothing and rescan, low to medium stick a needle in it to see what we have, medium to high start treating.
We talked about a few options.
1) Surgery: most aggressive but downside is it would potentially render me with no active disease so the only follow up treatment would probably be an adjuvant vaccine trial.
2) Ipi/Nivo combo: another aggressive plan but due to my non response in the past to Ipi and the tough side effect experienced it may not be the best option.
3) Nivo: Based on his experience and what he's hearing Dr. Weber thinks for those that were anti-pd1 responders who recur after stopping treatment the response rate the second time around will be about 80%. His thought on the nivo treatment was to treat for a certain time frame and then resect anything remaining.
4) I had a list of about 6 trials (Josh's included) I was considering and wanted to run them by him but due to the length of the appointment and the fact at this point we don't know where we are without the SUV answer I didn't get to them. I did ask him about trial options and he perked up about a trial they are doing there. It is NCT02253992 which is a combination of nivo and Urelumab. It's being offered in several locations but unfortunately the closet is about 7 hours from me. Not out of the question but tough nonetheless.
He talked briefly about the success rate of the IPI/Nivo trials. None of the data is published yet but his gut feeling is those who are complete responders will probably have about a 95% long term durability and those that are partial responders like myself will be around 70%.
That's all for now. I'll let you all know what the SUV is. So much fun waiting for these kind of answers!!!
Brian
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- August 6, 2016 at 7:39 pm
Hey Brian,
So glad you got to see Weber. I can just hear his grousing about the radiology report. Been there…heard that!!! But, hopefully, his first possibilty sounds reasonable and will be proven out!!! An immune system mis-fire sounds good to me!!!! Should that not be the case….there seem to be some good options in your aresnal. Sorry for the hurry up and wait situation. Hang in there. Celeste
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- August 6, 2016 at 7:39 pm
Hey Brian,
So glad you got to see Weber. I can just hear his grousing about the radiology report. Been there…heard that!!! But, hopefully, his first possibilty sounds reasonable and will be proven out!!! An immune system mis-fire sounds good to me!!!! Should that not be the case….there seem to be some good options in your aresnal. Sorry for the hurry up and wait situation. Hang in there. Celeste
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- August 6, 2016 at 7:39 pm
Hey Brian,
So glad you got to see Weber. I can just hear his grousing about the radiology report. Been there…heard that!!! But, hopefully, his first possibilty sounds reasonable and will be proven out!!! An immune system mis-fire sounds good to me!!!! Should that not be the case….there seem to be some good options in your aresnal. Sorry for the hurry up and wait situation. Hang in there. Celeste
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- August 6, 2016 at 7:42 pm
Hi Brian, I wish every one could have the same kind of experienced Oncologist like Dr.Weber. I hope the issue lies with the scan and how it was read!!!! I had one about 6months into treatments where the ct-scan report was talking about a change in the size of my Liver tumor. Since I have never had a liver tumor my Oncologist picked up on the error from the radiology dept. The idea of having a recording device at these appointments makes sense, especially for new melanoma patients. Keep the chin up and let us know what happens!!!!Ed
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- August 6, 2016 at 7:42 pm
Hi Brian, I wish every one could have the same kind of experienced Oncologist like Dr.Weber. I hope the issue lies with the scan and how it was read!!!! I had one about 6months into treatments where the ct-scan report was talking about a change in the size of my Liver tumor. Since I have never had a liver tumor my Oncologist picked up on the error from the radiology dept. The idea of having a recording device at these appointments makes sense, especially for new melanoma patients. Keep the chin up and let us know what happens!!!!Ed
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- August 6, 2016 at 7:42 pm
Hi Brian, I wish every one could have the same kind of experienced Oncologist like Dr.Weber. I hope the issue lies with the scan and how it was read!!!! I had one about 6months into treatments where the ct-scan report was talking about a change in the size of my Liver tumor. Since I have never had a liver tumor my Oncologist picked up on the error from the radiology dept. The idea of having a recording device at these appointments makes sense, especially for new melanoma patients. Keep the chin up and let us know what happens!!!!Ed
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- August 7, 2016 at 2:26 pm
Brian, just wanted to say thank you for sharing your story, and in such detail. Any information on what Dr Weber says will help many on the board with their decisions.Your point about IPI is mine exactly. If you had a severe reaction to IPI and were not a responder, does it do ANY good to go with the nivo/ippi combo? Could your reaction to ipi be different the second time around?
Keep us updated on your situation and keeping fingers crossed for the best possible outcome!
Annie
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- August 7, 2016 at 2:26 pm
Brian, just wanted to say thank you for sharing your story, and in such detail. Any information on what Dr Weber says will help many on the board with their decisions.Your point about IPI is mine exactly. If you had a severe reaction to IPI and were not a responder, does it do ANY good to go with the nivo/ippi combo? Could your reaction to ipi be different the second time around?
Keep us updated on your situation and keeping fingers crossed for the best possible outcome!
Annie
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- August 7, 2016 at 2:26 pm
Brian, just wanted to say thank you for sharing your story, and in such detail. Any information on what Dr Weber says will help many on the board with their decisions.Your point about IPI is mine exactly. If you had a severe reaction to IPI and were not a responder, does it do ANY good to go with the nivo/ippi combo? Could your reaction to ipi be different the second time around?
Keep us updated on your situation and keeping fingers crossed for the best possible outcome!
Annie
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- August 8, 2016 at 12:29 pm
Brian- So happy to read your recap on the meeting with Weber…..We are all of course hoping he is correct and that the Pet scan and udpated SUV info will tell a different story.
Sorry you have to endure the waiting and wondering though. Please keep us posted with your next steps.
Glad you were able to see him and get another perspective…
Keeping my fingers crossed for you!!!!!
Best,
jenny
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- August 8, 2016 at 12:29 pm
Brian- So happy to read your recap on the meeting with Weber…..We are all of course hoping he is correct and that the Pet scan and udpated SUV info will tell a different story.
Sorry you have to endure the waiting and wondering though. Please keep us posted with your next steps.
Glad you were able to see him and get another perspective…
Keeping my fingers crossed for you!!!!!
Best,
jenny
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- August 8, 2016 at 12:29 pm
Brian- So happy to read your recap on the meeting with Weber…..We are all of course hoping he is correct and that the Pet scan and udpated SUV info will tell a different story.
Sorry you have to endure the waiting and wondering though. Please keep us posted with your next steps.
Glad you were able to see him and get another perspective…
Keeping my fingers crossed for you!!!!!
Best,
jenny
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- August 11, 2016 at 11:52 am
I’m so sorry to hear this, Brian!! You’ve had such a hard road to travel, and I’m sure you just want to get off the rollercoaster. It sounds like you had a very productive appointment with Dr. Weber with lots of options, though. Those response numbers sound great to second time Pd-1! Hoping your wait isn’t long to hear the final word on the uptake. Waiting is such a b!tch. Keep us updated! -
- August 11, 2016 at 11:52 am
I’m so sorry to hear this, Brian!! You’ve had such a hard road to travel, and I’m sure you just want to get off the rollercoaster. It sounds like you had a very productive appointment with Dr. Weber with lots of options, though. Those response numbers sound great to second time Pd-1! Hoping your wait isn’t long to hear the final word on the uptake. Waiting is such a b!tch. Keep us updated! -
- August 11, 2016 at 11:52 am
I’m so sorry to hear this, Brian!! You’ve had such a hard road to travel, and I’m sure you just want to get off the rollercoaster. It sounds like you had a very productive appointment with Dr. Weber with lots of options, though. Those response numbers sound great to second time Pd-1! Hoping your wait isn’t long to hear the final word on the uptake. Waiting is such a b!tch. Keep us updated!
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