› Forums › General Melanoma Community › My latest scan
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mrsaxde.
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- January 8, 2016 at 12:16 am
Well, I saw the doctor today after my latest CT scan a week ago. The news wasn't quite what I had hoped, but it wasn't bad at all. There have been no changes since September. Several small spots in my right lung are still the same size, as are the spots on my skin that are near the primary site. There is nothing new anywhere. I would have liked to hear that everything had shrunk some more, like it had in September, but I can deal with this.
A couple of things that maybe some of you can help me with….
1) I recall seeing someone's post on here saying that their oncologist believes that the "sweet spot" for Keytruda to kick in is somewhere around infusion #10. Does anyone know if that's accurate? Tomorrow will be #9 for me.
2) What's the possibility, given that nothing has grown, that what is still showing up on this scan is actually necrotic tissue that my body has not flushed away? Does anybody have any knowledge of, or experience with that possibility?
I'm actually doing well. Feel good, spirits good. My oncologist still thinks that Keytruda might help me beat this, given my overall tumor burden is very low.
-Bill
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- January 8, 2016 at 12:53 am
Hey Bill,
Good news. Can you do pet/ct on next scan to see if the disease is metabolically active? Also what about if you either surgically remove one of the skin lesions or biopsy a accessible tumor?-
- January 8, 2016 at 3:26 am
I'll have to try and remember to ask my doctor about doing a PET in the near future. She told me recently that my insurance won't pay for more than one per year, and my last one was last February. Don't you just love how our doctors are hamstrung by what the insurance companies will let them do? :-/
And yes, the last time I went to Johns Hopkins for a consult with Dr. Sharfman, he told me that at some point, if the skin lesions were the only thing I had going on, it would make sense to go ahead and have them removed. My surgeon said that they're not very deep, and she could take them out pretty easily. So if the next scan indicates no change, I'm going to approach my oncologist with that idea.
Thanks for the suggestions!
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- January 8, 2016 at 3:26 am
I'll have to try and remember to ask my doctor about doing a PET in the near future. She told me recently that my insurance won't pay for more than one per year, and my last one was last February. Don't you just love how our doctors are hamstrung by what the insurance companies will let them do? :-/
And yes, the last time I went to Johns Hopkins for a consult with Dr. Sharfman, he told me that at some point, if the skin lesions were the only thing I had going on, it would make sense to go ahead and have them removed. My surgeon said that they're not very deep, and she could take them out pretty easily. So if the next scan indicates no change, I'm going to approach my oncologist with that idea.
Thanks for the suggestions!
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- January 8, 2016 at 3:26 am
I'll have to try and remember to ask my doctor about doing a PET in the near future. She told me recently that my insurance won't pay for more than one per year, and my last one was last February. Don't you just love how our doctors are hamstrung by what the insurance companies will let them do? :-/
And yes, the last time I went to Johns Hopkins for a consult with Dr. Sharfman, he told me that at some point, if the skin lesions were the only thing I had going on, it would make sense to go ahead and have them removed. My surgeon said that they're not very deep, and she could take them out pretty easily. So if the next scan indicates no change, I'm going to approach my oncologist with that idea.
Thanks for the suggestions!
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- January 8, 2016 at 1:39 am
Hi Bill,
You sound very similar to me. The good news to that is I just had Keytruda #13 and received my most recent scan results (NED! yay!), but that was after 2 scans (CT/Bone) which did show things. To that end, I agree with the above that you could ask for a PET/CT to look for metabolic activity. I'd defer to the doc, but it's possible. It could have been for me, there's no way of knowing.
As to your questions
1) I dont think there's a sweet spot and I think that there are clearly groups of people who respond ASAP and lagards. With stability, there's probably no reason to stop Keytruda, so I would hang in there. Also, the non-shrinking might be shrinking + inflamation.
2) Entirely possible, but a scan is required. I don't think anyone could know.
You should be in good spirits! If you feel good, I think you're doing well. Good luck and Godspeed.
-Justin
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- January 8, 2016 at 1:39 am
Hi Bill,
You sound very similar to me. The good news to that is I just had Keytruda #13 and received my most recent scan results (NED! yay!), but that was after 2 scans (CT/Bone) which did show things. To that end, I agree with the above that you could ask for a PET/CT to look for metabolic activity. I'd defer to the doc, but it's possible. It could have been for me, there's no way of knowing.
As to your questions
1) I dont think there's a sweet spot and I think that there are clearly groups of people who respond ASAP and lagards. With stability, there's probably no reason to stop Keytruda, so I would hang in there. Also, the non-shrinking might be shrinking + inflamation.
2) Entirely possible, but a scan is required. I don't think anyone could know.
You should be in good spirits! If you feel good, I think you're doing well. Good luck and Godspeed.
-Justin
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- January 8, 2016 at 1:39 am
Hi Bill,
You sound very similar to me. The good news to that is I just had Keytruda #13 and received my most recent scan results (NED! yay!), but that was after 2 scans (CT/Bone) which did show things. To that end, I agree with the above that you could ask for a PET/CT to look for metabolic activity. I'd defer to the doc, but it's possible. It could have been for me, there's no way of knowing.
As to your questions
1) I dont think there's a sweet spot and I think that there are clearly groups of people who respond ASAP and lagards. With stability, there's probably no reason to stop Keytruda, so I would hang in there. Also, the non-shrinking might be shrinking + inflamation.
2) Entirely possible, but a scan is required. I don't think anyone could know.
You should be in good spirits! If you feel good, I think you're doing well. Good luck and Godspeed.
-Justin
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- January 8, 2016 at 3:32 am
Thanks Justin.
Yeah, I'm doing fine. My spirits have been good throughout, even last winter when Yervoy made me sick for about a month. I have never believed that this was going to be the end of me, even though before I started Yervoy things seemed to be progressing pretty quickly…I had surgery to remove several lumps near the original excision a year ago last September, and almost immediately afterwards new things showed up on my skin, along with small spots in one lung. But Yervoy slowed things down, and now Keytruda seems to be stopping them completely.
Like I told Jamie, I might be able to get a PET for my next scan. Apparently my insurance won't pay for more than one of them a year. I will be asking about it.
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- January 8, 2016 at 3:32 am
Thanks Justin.
Yeah, I'm doing fine. My spirits have been good throughout, even last winter when Yervoy made me sick for about a month. I have never believed that this was going to be the end of me, even though before I started Yervoy things seemed to be progressing pretty quickly…I had surgery to remove several lumps near the original excision a year ago last September, and almost immediately afterwards new things showed up on my skin, along with small spots in one lung. But Yervoy slowed things down, and now Keytruda seems to be stopping them completely.
Like I told Jamie, I might be able to get a PET for my next scan. Apparently my insurance won't pay for more than one of them a year. I will be asking about it.
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- January 8, 2016 at 3:32 am
Thanks Justin.
Yeah, I'm doing fine. My spirits have been good throughout, even last winter when Yervoy made me sick for about a month. I have never believed that this was going to be the end of me, even though before I started Yervoy things seemed to be progressing pretty quickly…I had surgery to remove several lumps near the original excision a year ago last September, and almost immediately afterwards new things showed up on my skin, along with small spots in one lung. But Yervoy slowed things down, and now Keytruda seems to be stopping them completely.
Like I told Jamie, I might be able to get a PET for my next scan. Apparently my insurance won't pay for more than one of them a year. I will be asking about it.
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- January 8, 2016 at 3:44 am
Hey Bill,
This could actually be good news. I did the Yervoy/Opdivo trial followed by Yervoy. My first set of scans showed 90-95% tumor reduction and my second scan was stable. Then I had a PET and was declared NED.
"Stable" was always my goal. I'd read so much about folks who did immunotherapy 5-12 years ago and are still around, even with active mets.
So….perhaps you'll get good news like I was lucky to receive. Or maybe stable will work for you.
Best of luck!
Ashley
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- January 8, 2016 at 3:44 am
Hey Bill,
This could actually be good news. I did the Yervoy/Opdivo trial followed by Yervoy. My first set of scans showed 90-95% tumor reduction and my second scan was stable. Then I had a PET and was declared NED.
"Stable" was always my goal. I'd read so much about folks who did immunotherapy 5-12 years ago and are still around, even with active mets.
So….perhaps you'll get good news like I was lucky to receive. Or maybe stable will work for you.
Best of luck!
Ashley
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- January 8, 2016 at 3:44 am
Hey Bill,
This could actually be good news. I did the Yervoy/Opdivo trial followed by Yervoy. My first set of scans showed 90-95% tumor reduction and my second scan was stable. Then I had a PET and was declared NED.
"Stable" was always my goal. I'd read so much about folks who did immunotherapy 5-12 years ago and are still around, even with active mets.
So….perhaps you'll get good news like I was lucky to receive. Or maybe stable will work for you.
Best of luck!
Ashley
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- January 8, 2016 at 3:57 am
Thanks Ashley! I'll take stable, although I have to admit that I'd like to get to NED. I have a private pilot's license, and the FAA takes away your medical certificate for just about any kind of cancer. I love to fly and I'd really like to do it again, and I'm not sure I'll be able to unless I can show the FAA that I'm disease free. (There's a bill in congress right now that will do away with the medical exam requirement for pilots who fly for fun, like I do. But I don't know if that will help me, as the FAA turned down my last application, and I may have to prove to them that I'm disease free before I can fly without needing a medical.)
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- January 8, 2016 at 3:57 am
Thanks Ashley! I'll take stable, although I have to admit that I'd like to get to NED. I have a private pilot's license, and the FAA takes away your medical certificate for just about any kind of cancer. I love to fly and I'd really like to do it again, and I'm not sure I'll be able to unless I can show the FAA that I'm disease free. (There's a bill in congress right now that will do away with the medical exam requirement for pilots who fly for fun, like I do. But I don't know if that will help me, as the FAA turned down my last application, and I may have to prove to them that I'm disease free before I can fly without needing a medical.)
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- January 8, 2016 at 3:57 am
Thanks Ashley! I'll take stable, although I have to admit that I'd like to get to NED. I have a private pilot's license, and the FAA takes away your medical certificate for just about any kind of cancer. I love to fly and I'd really like to do it again, and I'm not sure I'll be able to unless I can show the FAA that I'm disease free. (There's a bill in congress right now that will do away with the medical exam requirement for pilots who fly for fun, like I do. But I don't know if that will help me, as the FAA turned down my last application, and I may have to prove to them that I'm disease free before I can fly without needing a medical.)
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- January 9, 2016 at 5:34 pm
Bill,
I'm in the same boat except I fly for fun and food. I was flying commercially when I progressed to stage IV. It wasn't too difficult getting my medical back after my stage III dx but this is going to be a little trickier since I'm also stable like you. Even if I was NED they still might be reluctant to give me my medical back without a couple more years of observation. If we had 10 years of data showing guys like you and me stay stable it would be much easier but unfortunately that data doesn't exist. Getting my FAA medical back is one of my 2016 projects. It's the one thing that melanoma has taken from me that I haven't gotten back yet.
Brian
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- January 9, 2016 at 5:34 pm
Bill,
I'm in the same boat except I fly for fun and food. I was flying commercially when I progressed to stage IV. It wasn't too difficult getting my medical back after my stage III dx but this is going to be a little trickier since I'm also stable like you. Even if I was NED they still might be reluctant to give me my medical back without a couple more years of observation. If we had 10 years of data showing guys like you and me stay stable it would be much easier but unfortunately that data doesn't exist. Getting my FAA medical back is one of my 2016 projects. It's the one thing that melanoma has taken from me that I haven't gotten back yet.
Brian
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- January 9, 2016 at 5:34 pm
Bill,
I'm in the same boat except I fly for fun and food. I was flying commercially when I progressed to stage IV. It wasn't too difficult getting my medical back after my stage III dx but this is going to be a little trickier since I'm also stable like you. Even if I was NED they still might be reluctant to give me my medical back without a couple more years of observation. If we had 10 years of data showing guys like you and me stay stable it would be much easier but unfortunately that data doesn't exist. Getting my FAA medical back is one of my 2016 projects. It's the one thing that melanoma has taken from me that I haven't gotten back yet.
Brian
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- January 9, 2016 at 10:42 pm
"Fun and food." If you fly for fun, the food is a given! LOL
I get the FAA's reluctance to issue medicals to commercial pilots, but 3rd class medicals? I have a friend, who used to co-own a 172XP with me, who had a brain anurysm burst…fortunately not while she was in the cockpit. But things like that, heart issues….they pop up fairly frequently with pilots who have passed medicals. And there's the issue of the other co-owner of our airplane, who had some nerve issue that caused his legs to go numb. His AME told him there was nothing in the regs that prohibited his getting a medical.
And here I am, feeling perfectly fine, and have felt that way for all but maybe about 3 months over the past couple of years, and can't get a medical.
-Bill
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- January 9, 2016 at 10:42 pm
"Fun and food." If you fly for fun, the food is a given! LOL
I get the FAA's reluctance to issue medicals to commercial pilots, but 3rd class medicals? I have a friend, who used to co-own a 172XP with me, who had a brain anurysm burst…fortunately not while she was in the cockpit. But things like that, heart issues….they pop up fairly frequently with pilots who have passed medicals. And there's the issue of the other co-owner of our airplane, who had some nerve issue that caused his legs to go numb. His AME told him there was nothing in the regs that prohibited his getting a medical.
And here I am, feeling perfectly fine, and have felt that way for all but maybe about 3 months over the past couple of years, and can't get a medical.
-Bill
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- January 9, 2016 at 10:42 pm
"Fun and food." If you fly for fun, the food is a given! LOL
I get the FAA's reluctance to issue medicals to commercial pilots, but 3rd class medicals? I have a friend, who used to co-own a 172XP with me, who had a brain anurysm burst…fortunately not while she was in the cockpit. But things like that, heart issues….they pop up fairly frequently with pilots who have passed medicals. And there's the issue of the other co-owner of our airplane, who had some nerve issue that caused his legs to go numb. His AME told him there was nothing in the regs that prohibited his getting a medical.
And here I am, feeling perfectly fine, and have felt that way for all but maybe about 3 months over the past couple of years, and can't get a medical.
-Bill
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- January 8, 2016 at 5:22 am
Hey Bill,
I kinda know how you feel getting that stable news. You know you should be jumping up and down with that kind of news but deep down it's hard not to be a little disappointed.
My history. I did 12 weeks on Nivo. Scans showed about 40 to 50% reduction. Next did 12 weeks of Ipi. Scans showed tumors were relatively stable but new mets in lungs. Went back to Nivo. 8 weeks later all new mets were gone and the original mets remained stable. They have remained that way for nearly two years now (the last 6 months with no treatment). I'm hoping you won't plateau with your response and you'll continue to see future reduction but it wouldn't be too uncommon if you don't. For those that respond to treatment, statistically there are more patients that reach a stable status than those that achieve NED. I talked to Dr. Webber about that and he didn't know why this is happening. In his words our immune system has "walled off" the tumors and he felt it can stay that way for a long time.
OBTW I've had two PETs since reaching the stable status and both scans showed no uptate anywhere. When I talked to Dr. Webber and Dr. Slingluff about it both of thought it was likely that my remaining tumors were not necrotic. Only way to know for sure is to remove the tumors and biopsy them.
Congrats on the scans. There's a quote I stole that I like. Stable is a tie and in this game a tie is a win.
Brian
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- January 8, 2016 at 5:22 am
Hey Bill,
I kinda know how you feel getting that stable news. You know you should be jumping up and down with that kind of news but deep down it's hard not to be a little disappointed.
My history. I did 12 weeks on Nivo. Scans showed about 40 to 50% reduction. Next did 12 weeks of Ipi. Scans showed tumors were relatively stable but new mets in lungs. Went back to Nivo. 8 weeks later all new mets were gone and the original mets remained stable. They have remained that way for nearly two years now (the last 6 months with no treatment). I'm hoping you won't plateau with your response and you'll continue to see future reduction but it wouldn't be too uncommon if you don't. For those that respond to treatment, statistically there are more patients that reach a stable status than those that achieve NED. I talked to Dr. Webber about that and he didn't know why this is happening. In his words our immune system has "walled off" the tumors and he felt it can stay that way for a long time.
OBTW I've had two PETs since reaching the stable status and both scans showed no uptate anywhere. When I talked to Dr. Webber and Dr. Slingluff about it both of thought it was likely that my remaining tumors were not necrotic. Only way to know for sure is to remove the tumors and biopsy them.
Congrats on the scans. There's a quote I stole that I like. Stable is a tie and in this game a tie is a win.
Brian
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- January 8, 2016 at 5:22 am
Hey Bill,
I kinda know how you feel getting that stable news. You know you should be jumping up and down with that kind of news but deep down it's hard not to be a little disappointed.
My history. I did 12 weeks on Nivo. Scans showed about 40 to 50% reduction. Next did 12 weeks of Ipi. Scans showed tumors were relatively stable but new mets in lungs. Went back to Nivo. 8 weeks later all new mets were gone and the original mets remained stable. They have remained that way for nearly two years now (the last 6 months with no treatment). I'm hoping you won't plateau with your response and you'll continue to see future reduction but it wouldn't be too uncommon if you don't. For those that respond to treatment, statistically there are more patients that reach a stable status than those that achieve NED. I talked to Dr. Webber about that and he didn't know why this is happening. In his words our immune system has "walled off" the tumors and he felt it can stay that way for a long time.
OBTW I've had two PETs since reaching the stable status and both scans showed no uptate anywhere. When I talked to Dr. Webber and Dr. Slingluff about it both of thought it was likely that my remaining tumors were not necrotic. Only way to know for sure is to remove the tumors and biopsy them.
Congrats on the scans. There's a quote I stole that I like. Stable is a tie and in this game a tie is a win.
Brian
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- January 9, 2016 at 11:18 pm
I've been known to play the horses a little. Some years ago I was at the now defunct Garden State Park in New Jersey with a couple of friends. A guy there asked one of my friends how he was doing and my friend replied he was about even. The guy said with a classic New Jersey accent, "Hey in this business if you're even, you're ahead!"
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- January 9, 2016 at 11:18 pm
I've been known to play the horses a little. Some years ago I was at the now defunct Garden State Park in New Jersey with a couple of friends. A guy there asked one of my friends how he was doing and my friend replied he was about even. The guy said with a classic New Jersey accent, "Hey in this business if you're even, you're ahead!"
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- January 9, 2016 at 11:18 pm
I've been known to play the horses a little. Some years ago I was at the now defunct Garden State Park in New Jersey with a couple of friends. A guy there asked one of my friends how he was doing and my friend replied he was about even. The guy said with a classic New Jersey accent, "Hey in this business if you're even, you're ahead!"
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