Bone Metastasis

Sorry to hear that you're dealing with this frustrating situation.  My understanding is that, for the purposes of clinical trials, bone lesions are not considered "measurable".  I've had a number of bone lesions in my left humerus, left tibia, and left and right femurs.  I first heard this with my first bone lesion, the one in my humerus.  I had another tumor that we were able to use so it didn't prevent me from entering the trial in which I participated, but I did have a discussion about measurable vs. non-meaurable as it related to monitoring response to treatment (response vs. disease progression vs. stable disease), and the bone lesion could not be used for that either.

As I understand it, the reasoning for it has to do with how bone lesions appear on scans, even when they are responding to treatment.  While bone lesions often appear very clearly on CT or MRI, even if they respond to treatment (whether chemotherapy, radiation, immunotherapy, or other), they usually will still appear on scans without changing in size.  I have seen this with a few of the bone lesions I've had (at least those that haven't had to be surgically removed).  Years later, they still show up on scans and haven't changed much in size.  On PET scan, however, they are no longer metabolically active as would be seen with active disease.  Unfortunately, PET scans aren't nearly precise enough to be used for measurement of disease.

Trials often use a standard known as "RECIST" to measure disease — and measurement is a physical meaurement of lesion size, not metabolic activity as in a PET scan.  If you search the web for RECIST, you can read more about it.  Specifically, here's a link about RECIST and most bone lesions being unmeasurable:

http://www.recist.com/recist-comparative/04.html

I know it's frustrating, because with no other measurable disease, it can keep you out of many trials, putting you in the awkward position of needing needing a soft tissue lesion in order to get into a trial that may be your best treatment option.  However, has your brother-in-law already tried any or all of the newly approved therapies:  ipiliimumab, BRAF/MEK inhibitors (if he's BRAF positive), or pembrolizumab?  None of those should have the measurable disease requirement now that they're approved.

Joe

Sorry to hear that you're dealing with this frustrating situation.  My understanding is that, for the purposes of clinical trials, bone lesions are not considered "measurable".  I've had a number of bone lesions in my left humerus, left tibia, and left and right femurs.  I first heard this with my first bone lesion, the one in my humerus.  I had another tumor that we were able to use so it didn't prevent me from entering the trial in which I participated, but I did have a discussion about measurable vs. non-meaurable as it related to monitoring response to treatment (response vs. disease progression vs. stable disease), and the bone lesion could not be used for that either.

As I understand it, the reasoning for it has to do with how bone lesions appear on scans, even when they are responding to treatment.  While bone lesions often appear very clearly on CT or MRI, even if they respond to treatment (whether chemotherapy, radiation, immunotherapy, or other), they usually will still appear on scans without changing in size.  I have seen this with a few of the bone lesions I've had (at least those that haven't had to be surgically removed).  Years later, they still show up on scans and haven't changed much in size.  On PET scan, however, they are no longer metabolically active as would be seen with active disease.  Unfortunately, PET scans aren't nearly precise enough to be used for measurement of disease.

Trials often use a standard known as "RECIST" to measure disease — and measurement is a physical meaurement of lesion size, not metabolic activity as in a PET scan.  If you search the web for RECIST, you can read more about it.  Specifically, here's a link about RECIST and most bone lesions being unmeasurable:

http://www.recist.com/recist-comparative/04.html

I know it's frustrating, because with no other measurable disease, it can keep you out of many trials, putting you in the awkward position of needing needing a soft tissue lesion in order to get into a trial that may be your best treatment option.  However, has your brother-in-law already tried any or all of the newly approved therapies:  ipiliimumab, BRAF/MEK inhibitors (if he's BRAF positive), or pembrolizumab?  None of those should have the measurable disease requirement now that they're approved.

Joe

Sorry to hear that you're dealing with this frustrating situation.  My understanding is that, for the purposes of clinical trials, bone lesions are not considered "measurable".  I've had a number of bone lesions in my left humerus, left tibia, and left and right femurs.  I first heard this with my first bone lesion, the one in my humerus.  I had another tumor that we were able to use so it didn't prevent me from entering the trial in which I participated, but I did have a discussion about measurable vs. non-meaurable as it related to monitoring response to treatment (response vs. disease progression vs. stable disease), and the bone lesion could not be used for that either.

As I understand it, the reasoning for it has to do with how bone lesions appear on scans, even when they are responding to treatment.  While bone lesions often appear very clearly on CT or MRI, even if they respond to treatment (whether chemotherapy, radiation, immunotherapy, or other), they usually will still appear on scans without changing in size.  I have seen this with a few of the bone lesions I've had (at least those that haven't had to be surgically removed).  Years later, they still show up on scans and haven't changed much in size.  On PET scan, however, they are no longer metabolically active as would be seen with active disease.  Unfortunately, PET scans aren't nearly precise enough to be used for measurement of disease.

Trials often use a standard known as "RECIST" to measure disease — and measurement is a physical meaurement of lesion size, not metabolic activity as in a PET scan.  If you search the web for RECIST, you can read more about it.  Specifically, here's a link about RECIST and most bone lesions being unmeasurable:

http://www.recist.com/recist-comparative/04.html

I know it's frustrating, because with no other measurable disease, it can keep you out of many trials, putting you in the awkward position of needing needing a soft tissue lesion in order to get into a trial that may be your best treatment option.  However, has your brother-in-law already tried any or all of the newly approved therapies:  ipiliimumab, BRAF/MEK inhibitors (if he's BRAF positive), or pembrolizumab?  None of those should have the measurable disease requirement now that they're approved.

Joe

Pretty much everything I have started in a bone. Like almost 2 dozen of them. Depending on how much the bone met increases it can involve soft tissue. Once that happens it is measurable. Otherwise they consider them not measurable. Mine were apparently measurable long before I visibly saw anything I just didn't know soft tissue was invovled.

However some doctors might consider it for their own trial rather than a national trial and utilize the pet as their measure. You might want to contact Dr Weber at Moffit and see if he would. I'm not sure who else might.

Artie

Pretty much everything I have started in a bone. Like almost 2 dozen of them. Depending on how much the bone met increases it can involve soft tissue. Once that happens it is measurable. Otherwise they consider them not measurable. Mine were apparently measurable long before I visibly saw anything I just didn't know soft tissue was invovled.

However some doctors might consider it for their own trial rather than a national trial and utilize the pet as their measure. You might want to contact Dr Weber at Moffit and see if he would. I'm not sure who else might.

Artie

Pretty much everything I have started in a bone. Like almost 2 dozen of them. Depending on how much the bone met increases it can involve soft tissue. Once that happens it is measurable. Otherwise they consider them not measurable. Mine were apparently measurable long before I visibly saw anything I just didn't know soft tissue was invovled.

However some doctors might consider it for their own trial rather than a national trial and utilize the pet as their measure. You might want to contact Dr Weber at Moffit and see if he would. I'm not sure who else might.

Artie