› Forums › General Melanoma Community › Pet/ct results… suspicious area found
- This topic has 24 replies, 3 voices, and was last updated 7 years, 2 months ago by
Bubbles.
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- February 4, 2017 at 4:08 pm
Dear friends,
guess it's our time to worry some more…
A year after starting keytruda, my father has had another pet/ct done… His known tumors are COMPLETELY gone, no uptake, but the report says a suspicious change in one of his ribs… No further info on that… My father was in good spirits when he came from the doctor, said everything was ok, the doctor was already familiar with pet/ct results, he continued with keytruda, so i was shocked when i read the report which came in today…
Does that mean he progressed or can it be other stuff? He hasn't had any trauma to his rib cage, what else (benign) could it be?
Can keytruda work through the 'new' stuff, or will he have to switch to something else?
There seems to be no plan of action to really see what is going on, they plan on waiting for another scan in three months i guess…
Should we push for something sooner? What would that be? Biopsy? Radiation?
Thank you so much for any info…
Take care everybody…
Love,
Patrisa
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- February 4, 2017 at 5:11 pm
What does the report say specifically about that area? Is there FDG uptake? If so, how much? Waiting 3 months until the next scan while continuing on Keytruda is pretty typical when something suspicious but small is found in a scan. A lot of things are just too small to look into right away and need a little time and a second scan to determine if it's of worry or not.
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- February 4, 2017 at 5:11 pm
What does the report say specifically about that area? Is there FDG uptake? If so, how much? Waiting 3 months until the next scan while continuing on Keytruda is pretty typical when something suspicious but small is found in a scan. A lot of things are just too small to look into right away and need a little time and a second scan to determine if it's of worry or not.
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- February 4, 2017 at 5:20 pm
Thank you so much for your reply.. The report doesn't say how high is the uptake, just 'suspicious'… My father (of course) never asks anything at his appointments (and does not allow me to go with him), so i'm always stuck with little info…
I'm not comfortable with just waiting, but if that's normal to do….
Hope keytruda in the meantime does it's job…
Thank you again for your input…
Love,
Patrisa
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- February 4, 2017 at 5:31 pm
If it doesn't mention an uptake then it's likely there wasn't uptake or was so minimal it wasn't worth mentioning. Unfortunately waiting is part of the game a lot of the time, try not to focus too much on that and just focus on him continuing to get good response from Keytruda. Hoping for a more straightforward and clear scan for him next time!
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- February 4, 2017 at 5:31 pm
If it doesn't mention an uptake then it's likely there wasn't uptake or was so minimal it wasn't worth mentioning. Unfortunately waiting is part of the game a lot of the time, try not to focus too much on that and just focus on him continuing to get good response from Keytruda. Hoping for a more straightforward and clear scan for him next time!
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- February 4, 2017 at 5:31 pm
If it doesn't mention an uptake then it's likely there wasn't uptake or was so minimal it wasn't worth mentioning. Unfortunately waiting is part of the game a lot of the time, try not to focus too much on that and just focus on him continuing to get good response from Keytruda. Hoping for a more straightforward and clear scan for him next time!
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- February 4, 2017 at 5:20 pm
Thank you so much for your reply.. The report doesn't say how high is the uptake, just 'suspicious'… My father (of course) never asks anything at his appointments (and does not allow me to go with him), so i'm always stuck with little info…
I'm not comfortable with just waiting, but if that's normal to do….
Hope keytruda in the meantime does it's job…
Thank you again for your input…
Love,
Patrisa
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- February 4, 2017 at 5:20 pm
Thank you so much for your reply.. The report doesn't say how high is the uptake, just 'suspicious'… My father (of course) never asks anything at his appointments (and does not allow me to go with him), so i'm always stuck with little info…
I'm not comfortable with just waiting, but if that's normal to do….
Hope keytruda in the meantime does it's job…
Thank you again for your input…
Love,
Patrisa
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- February 4, 2017 at 5:11 pm
What does the report say specifically about that area? Is there FDG uptake? If so, how much? Waiting 3 months until the next scan while continuing on Keytruda is pretty typical when something suspicious but small is found in a scan. A lot of things are just too small to look into right away and need a little time and a second scan to determine if it's of worry or not.
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- February 4, 2017 at 8:26 pm
Sorry for your worry, Patrisa. I think you should take comfort in the fact that your dad's doc and the radiologist (given the lack of additional commentary on the report) didn't make much of the change. Scanning is crucial and helpful in determining response and progression…but it also finds a lot of 'red herrings". I happen to know that I have a boat load of gall stones, sparkles in my thyroid, and a fibroid in my uterus….none of which have caused me one minutes problem! It is a bit weird to know that they are there and do nothing. But, had I not been having scans required to monitor melanoma I would never know they existed!! So I would just try to keep an eye on your dad in case he starts having any pain or other problems in the area, while being hopeful that this is also a red herring that will either be gone or unchanged at the next regularly scheduled scans. Hang in there! c
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- February 4, 2017 at 8:26 pm
Sorry for your worry, Patrisa. I think you should take comfort in the fact that your dad's doc and the radiologist (given the lack of additional commentary on the report) didn't make much of the change. Scanning is crucial and helpful in determining response and progression…but it also finds a lot of 'red herrings". I happen to know that I have a boat load of gall stones, sparkles in my thyroid, and a fibroid in my uterus….none of which have caused me one minutes problem! It is a bit weird to know that they are there and do nothing. But, had I not been having scans required to monitor melanoma I would never know they existed!! So I would just try to keep an eye on your dad in case he starts having any pain or other problems in the area, while being hopeful that this is also a red herring that will either be gone or unchanged at the next regularly scheduled scans. Hang in there! c
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- February 4, 2017 at 8:26 pm
Sorry for your worry, Patrisa. I think you should take comfort in the fact that your dad's doc and the radiologist (given the lack of additional commentary on the report) didn't make much of the change. Scanning is crucial and helpful in determining response and progression…but it also finds a lot of 'red herrings". I happen to know that I have a boat load of gall stones, sparkles in my thyroid, and a fibroid in my uterus….none of which have caused me one minutes problem! It is a bit weird to know that they are there and do nothing. But, had I not been having scans required to monitor melanoma I would never know they existed!! So I would just try to keep an eye on your dad in case he starts having any pain or other problems in the area, while being hopeful that this is also a red herring that will either be gone or unchanged at the next regularly scheduled scans. Hang in there! c
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- February 5, 2017 at 11:04 am
Thank you Celeste for your reply…
We haven't seen the radiologist report, just what my fathers oncologist writes after the exam…
I fear though he really progressed, since his S100 marker is also elevated… ldh has never been higher than normal though…
I just need to know can keytruda work through new stuff or do we need to switch drugs (if confirmed mel)?
I would really like him to stay on keytruda, cause it has not given him any side effects…
Love,
Patrisa
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- February 5, 2017 at 11:04 am
Thank you Celeste for your reply…
We haven't seen the radiologist report, just what my fathers oncologist writes after the exam…
I fear though he really progressed, since his S100 marker is also elevated… ldh has never been higher than normal though…
I just need to know can keytruda work through new stuff or do we need to switch drugs (if confirmed mel)?
I would really like him to stay on keytruda, cause it has not given him any side effects…
Love,
Patrisa
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- February 5, 2017 at 11:04 am
Thank you Celeste for your reply…
We haven't seen the radiologist report, just what my fathers oncologist writes after the exam…
I fear though he really progressed, since his S100 marker is also elevated… ldh has never been higher than normal though…
I just need to know can keytruda work through new stuff or do we need to switch drugs (if confirmed mel)?
I would really like him to stay on keytruda, cause it has not given him any side effects…
Love,
Patrisa
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- February 5, 2017 at 3:28 pm
Oh, I thought you had actually read the report. As to the specific question…."Can folks develop new tumors while on anti-Pd1 and still have those tumors resolve while on the same treatment?" The answer is YES! (and no…) In many of the original studies in particular….folks developed new tumors while on therapy….only to have them disappear on later scans. For instance…back in 2011 in my nivo trial…before we learned all that we know now…a poor fellow in my cohort developed a tumor evidenced very clearly….no question at all….on his scans and was kicked out of the trial. That was the deal…"progression" and you were out. However, when Weber rescanned him a bit later….trying to decided what to treat him with next….the tumor was smaller….WITH NO FURTHER THERAPY!! Bottom line the tumor finally went away with the patient taking no additional meds other than the nivo infusions he had already had. All these years later we know that folks can do exactly as this patient did…develop new tumors on treatment….treatment is continued and they often resolve on subsequent scans. While that is good and supports the action of continuing meds while keeping up careful observation…there are certainly those for whom once they develop a tumor while on anti-PD1…that tumor will simply continue to grow…no longer responsive. A dear one of mine had melanoma in many places. Was treated with anti-PD1 and responded incredibly well with all tumors evaporating almost to the point of becoming NED. However, just as suddenly a NEW intestinal tumor developed, while on treatment, that refused to respond and finally had to be removed surgically.
I think actually reading the radiology report would be extremely helpful. But, also watching and waiting…and hoping for a red herring….or a response to a real lesion…is reasonable at this point with the info you have.
Wishing you and your dad my best. c
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- February 5, 2017 at 3:28 pm
Oh, I thought you had actually read the report. As to the specific question…."Can folks develop new tumors while on anti-Pd1 and still have those tumors resolve while on the same treatment?" The answer is YES! (and no…) In many of the original studies in particular….folks developed new tumors while on therapy….only to have them disappear on later scans. For instance…back in 2011 in my nivo trial…before we learned all that we know now…a poor fellow in my cohort developed a tumor evidenced very clearly….no question at all….on his scans and was kicked out of the trial. That was the deal…"progression" and you were out. However, when Weber rescanned him a bit later….trying to decided what to treat him with next….the tumor was smaller….WITH NO FURTHER THERAPY!! Bottom line the tumor finally went away with the patient taking no additional meds other than the nivo infusions he had already had. All these years later we know that folks can do exactly as this patient did…develop new tumors on treatment….treatment is continued and they often resolve on subsequent scans. While that is good and supports the action of continuing meds while keeping up careful observation…there are certainly those for whom once they develop a tumor while on anti-PD1…that tumor will simply continue to grow…no longer responsive. A dear one of mine had melanoma in many places. Was treated with anti-PD1 and responded incredibly well with all tumors evaporating almost to the point of becoming NED. However, just as suddenly a NEW intestinal tumor developed, while on treatment, that refused to respond and finally had to be removed surgically.
I think actually reading the radiology report would be extremely helpful. But, also watching and waiting…and hoping for a red herring….or a response to a real lesion…is reasonable at this point with the info you have.
Wishing you and your dad my best. c
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- February 5, 2017 at 3:38 pm
Thank you Celeste, you have put my mind somewhat at ease… Also you made me cry… can't believe you have so much enery for all of us, you are a true blessing!!
Thank you from the bottom of my heart for everything you do for all of us!!
Love,
Patrisa
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- February 5, 2017 at 3:38 pm
Thank you Celeste, you have put my mind somewhat at ease… Also you made me cry… can't believe you have so much enery for all of us, you are a true blessing!!
Thank you from the bottom of my heart for everything you do for all of us!!
Love,
Patrisa
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- February 5, 2017 at 3:38 pm
Thank you Celeste, you have put my mind somewhat at ease… Also you made me cry… can't believe you have so much enery for all of us, you are a true blessing!!
Thank you from the bottom of my heart for everything you do for all of us!!
Love,
Patrisa
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- February 5, 2017 at 3:28 pm
Oh, I thought you had actually read the report. As to the specific question…."Can folks develop new tumors while on anti-Pd1 and still have those tumors resolve while on the same treatment?" The answer is YES! (and no…) In many of the original studies in particular….folks developed new tumors while on therapy….only to have them disappear on later scans. For instance…back in 2011 in my nivo trial…before we learned all that we know now…a poor fellow in my cohort developed a tumor evidenced very clearly….no question at all….on his scans and was kicked out of the trial. That was the deal…"progression" and you were out. However, when Weber rescanned him a bit later….trying to decided what to treat him with next….the tumor was smaller….WITH NO FURTHER THERAPY!! Bottom line the tumor finally went away with the patient taking no additional meds other than the nivo infusions he had already had. All these years later we know that folks can do exactly as this patient did…develop new tumors on treatment….treatment is continued and they often resolve on subsequent scans. While that is good and supports the action of continuing meds while keeping up careful observation…there are certainly those for whom once they develop a tumor while on anti-PD1…that tumor will simply continue to grow…no longer responsive. A dear one of mine had melanoma in many places. Was treated with anti-PD1 and responded incredibly well with all tumors evaporating almost to the point of becoming NED. However, just as suddenly a NEW intestinal tumor developed, while on treatment, that refused to respond and finally had to be removed surgically.
I think actually reading the radiology report would be extremely helpful. But, also watching and waiting…and hoping for a red herring….or a response to a real lesion…is reasonable at this point with the info you have.
Wishing you and your dad my best. c
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