› Forums › General Melanoma Community › tumor analysys – kind of confused?
- This topic has 36 replies, 5 voices, and was last updated 12 years, 1 month ago by
arthurjedi007.
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- February 28, 2014 at 4:39 pm
I was wondering what to ask for about a tumor analysys from my Dr. I may not even be saying that right or even if it is possible.
Also if they do such a thing is that via a needle biopsy, surgery or what for stage 4 bone tumors?
Basically I was wondering if it is somehow possible to do an analysys of my tumor(s) to figure out what they are composed of. I would think such data would help in figuring out how to beat it. I know they did the braf test which showed positive for v600e. That was part of the original surgical biopsy. But the standard meds for that so far never shrank anything.
I know there are many other gene mutations than that one.
I've read some people say they are pd1 positive. I'm not sure what they meant. Was that a test or did they take nivo or some other pd1 and saw shrinkage.
Do they only do these kind of tests when you are in a trial for like antibody drug conjugates or something?
Any help in this knowledge area would be appreciated.
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- February 28, 2014 at 5:40 pm
Art,
Those are good questions and ones I've been struggling with lately also. I'm in a trial now and I'm assuming they have done numerous "analysis" of my tumor to check all kinds of genetic mutations so they can later assess which type of mutations respond best to the drug. I've asked to see if I can get copies of those test and I haven't received an answer yet. Like you I think the info could be very valuable if I need to look for a different treatment option. The main mutations people normally talk about are Braf, NRAS, and CKIT. There are probably others I'm not familiar with. I've heard some mention here they are PD-1 positive. I'm not sure they are using that term correctly. They may mean they are a PD-1 responders or they may mean that there tumor "expresses" PD-L1 on it's surface. I think it has been that patients who have PD-L1 on the surface of their melanoma are significantly more likely to respond to the anti-PD-1 treatment. Doesn't mean you won't respond if you don't have PD-L1 on your melanoma surface but your more likely to respond if you do.
I don't know of any mutations or traits that would make you more likely to respond to ADC treatment. From the limited knowledge I have about the treatment I wouldn't think it would make a difference.
I think you are about day 10 of year treatment. Have the doctors or you been able to tell if the tumor on your spine has responded? I was thinking about you this morning and was going to ask how you were doing.
Brian
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- February 28, 2014 at 5:40 pm
Art,
Those are good questions and ones I've been struggling with lately also. I'm in a trial now and I'm assuming they have done numerous "analysis" of my tumor to check all kinds of genetic mutations so they can later assess which type of mutations respond best to the drug. I've asked to see if I can get copies of those test and I haven't received an answer yet. Like you I think the info could be very valuable if I need to look for a different treatment option. The main mutations people normally talk about are Braf, NRAS, and CKIT. There are probably others I'm not familiar with. I've heard some mention here they are PD-1 positive. I'm not sure they are using that term correctly. They may mean they are a PD-1 responders or they may mean that there tumor "expresses" PD-L1 on it's surface. I think it has been that patients who have PD-L1 on the surface of their melanoma are significantly more likely to respond to the anti-PD-1 treatment. Doesn't mean you won't respond if you don't have PD-L1 on your melanoma surface but your more likely to respond if you do.
I don't know of any mutations or traits that would make you more likely to respond to ADC treatment. From the limited knowledge I have about the treatment I wouldn't think it would make a difference.
I think you are about day 10 of year treatment. Have the doctors or you been able to tell if the tumor on your spine has responded? I was thinking about you this morning and was going to ask how you were doing.
Brian
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- February 28, 2014 at 5:40 pm
Art,
Those are good questions and ones I've been struggling with lately also. I'm in a trial now and I'm assuming they have done numerous "analysis" of my tumor to check all kinds of genetic mutations so they can later assess which type of mutations respond best to the drug. I've asked to see if I can get copies of those test and I haven't received an answer yet. Like you I think the info could be very valuable if I need to look for a different treatment option. The main mutations people normally talk about are Braf, NRAS, and CKIT. There are probably others I'm not familiar with. I've heard some mention here they are PD-1 positive. I'm not sure they are using that term correctly. They may mean they are a PD-1 responders or they may mean that there tumor "expresses" PD-L1 on it's surface. I think it has been that patients who have PD-L1 on the surface of their melanoma are significantly more likely to respond to the anti-PD-1 treatment. Doesn't mean you won't respond if you don't have PD-L1 on your melanoma surface but your more likely to respond if you do.
I don't know of any mutations or traits that would make you more likely to respond to ADC treatment. From the limited knowledge I have about the treatment I wouldn't think it would make a difference.
I think you are about day 10 of year treatment. Have the doctors or you been able to tell if the tumor on your spine has responded? I was thinking about you this morning and was going to ask how you were doing.
Brian
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- March 1, 2014 at 8:58 pm
lol. Thanks for responding Brian. I appreciate it.
The Dr here doesn't really have any plans or much hope for me. He basically already has me pegged as becoming paralyzed but since the mel is in no vital organs he can keep me alive for quite awhile. Basically stay on the taf/mek combo for a couple months then scan and see how it did. Then if I'm still around when nivo is fda approved I'll get that. I'm surprised the combo side affects are so mild. I got an extremely mild rash on my chest and back and that's it so at least it is way easier to tolerate than zelboraf ever was.
So yeah I've pretty much moved on. I'll still go to the appointments for the xgeva bone strengthener and blood work report and listen to what he has to say but that's it.
I really like my new radiation oncologist. He is very optimistic. He's spending a lot of time mapping out a very precise treatment plan. If all goes well he believes the spinal cord compression will be gone and maybe even all the tumor in that T10 vertebrae depending on how responsive it is to the radiation. Quite a miracle if it happens especially on a bone that was already radiated 7ish months ago. But he is confident and he's taking the time to do it right. On the 7th he will do a dry run to make sure everything lines up perfectly. Then the 10th is the 1st zap and the 19th is the last zap. It will be 30gy in 5 fractions all to the T10. Last summer it was 30gy in 10 fractions to t8,t9,t10,t11.
Then if everything goes well I can finally reschedule to get to MSK in New York, Moffitt in Tampa, MDA in Houston and Sarah Cannon in Nashville. I think those are the best mel places I could find but I might be wrong. Lots of traveling but I gotta do it when the cord compression is gone. Dunno if I can cause just the 3 CT scans and MRI yesterday wore me out but we shall see.
At least my Dr at Mayo is really nice. He called me on his own yesterday just to see how things were going. Unfortunately he has no treatment for me other than the taf/mek combo but at least he cares a lot. Actually if it wasn't for him telling me to have my local Dr order it I wouldn't have the combo either.
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- March 3, 2014 at 3:03 am
Geez Art, wish you had more of a optimistic oncologist to work with. Hopefully your radiologist can help and the combo will kick in with some shrinkage of that spinal tumor. Your 4 sites for places to try are the same 4 I'd be going to so I think you are on the money there. Your positive attitude is amazing Art. Keep it up.
Brian
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- March 3, 2014 at 3:03 am
Geez Art, wish you had more of a optimistic oncologist to work with. Hopefully your radiologist can help and the combo will kick in with some shrinkage of that spinal tumor. Your 4 sites for places to try are the same 4 I'd be going to so I think you are on the money there. Your positive attitude is amazing Art. Keep it up.
Brian
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- March 3, 2014 at 3:03 am
Geez Art, wish you had more of a optimistic oncologist to work with. Hopefully your radiologist can help and the combo will kick in with some shrinkage of that spinal tumor. Your 4 sites for places to try are the same 4 I'd be going to so I think you are on the money there. Your positive attitude is amazing Art. Keep it up.
Brian
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- March 3, 2014 at 9:17 pm
Thanks Brian. I'm glad I got the right 4 places. Wasn't totally sure but they seemed to be the best. Now to wait til the 10th for the 1st zap. I really believe the radiation is going to work enough to at least resolve the spinal cord compression for awhile.
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- March 3, 2014 at 9:17 pm
Thanks Brian. I'm glad I got the right 4 places. Wasn't totally sure but they seemed to be the best. Now to wait til the 10th for the 1st zap. I really believe the radiation is going to work enough to at least resolve the spinal cord compression for awhile.
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- March 3, 2014 at 9:17 pm
Thanks Brian. I'm glad I got the right 4 places. Wasn't totally sure but they seemed to be the best. Now to wait til the 10th for the 1st zap. I really believe the radiation is going to work enough to at least resolve the spinal cord compression for awhile.
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- March 1, 2014 at 8:58 pm
lol. Thanks for responding Brian. I appreciate it.
The Dr here doesn't really have any plans or much hope for me. He basically already has me pegged as becoming paralyzed but since the mel is in no vital organs he can keep me alive for quite awhile. Basically stay on the taf/mek combo for a couple months then scan and see how it did. Then if I'm still around when nivo is fda approved I'll get that. I'm surprised the combo side affects are so mild. I got an extremely mild rash on my chest and back and that's it so at least it is way easier to tolerate than zelboraf ever was.
So yeah I've pretty much moved on. I'll still go to the appointments for the xgeva bone strengthener and blood work report and listen to what he has to say but that's it.
I really like my new radiation oncologist. He is very optimistic. He's spending a lot of time mapping out a very precise treatment plan. If all goes well he believes the spinal cord compression will be gone and maybe even all the tumor in that T10 vertebrae depending on how responsive it is to the radiation. Quite a miracle if it happens especially on a bone that was already radiated 7ish months ago. But he is confident and he's taking the time to do it right. On the 7th he will do a dry run to make sure everything lines up perfectly. Then the 10th is the 1st zap and the 19th is the last zap. It will be 30gy in 5 fractions all to the T10. Last summer it was 30gy in 10 fractions to t8,t9,t10,t11.
Then if everything goes well I can finally reschedule to get to MSK in New York, Moffitt in Tampa, MDA in Houston and Sarah Cannon in Nashville. I think those are the best mel places I could find but I might be wrong. Lots of traveling but I gotta do it when the cord compression is gone. Dunno if I can cause just the 3 CT scans and MRI yesterday wore me out but we shall see.
At least my Dr at Mayo is really nice. He called me on his own yesterday just to see how things were going. Unfortunately he has no treatment for me other than the taf/mek combo but at least he cares a lot. Actually if it wasn't for him telling me to have my local Dr order it I wouldn't have the combo either.
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- March 1, 2014 at 8:58 pm
lol. Thanks for responding Brian. I appreciate it.
The Dr here doesn't really have any plans or much hope for me. He basically already has me pegged as becoming paralyzed but since the mel is in no vital organs he can keep me alive for quite awhile. Basically stay on the taf/mek combo for a couple months then scan and see how it did. Then if I'm still around when nivo is fda approved I'll get that. I'm surprised the combo side affects are so mild. I got an extremely mild rash on my chest and back and that's it so at least it is way easier to tolerate than zelboraf ever was.
So yeah I've pretty much moved on. I'll still go to the appointments for the xgeva bone strengthener and blood work report and listen to what he has to say but that's it.
I really like my new radiation oncologist. He is very optimistic. He's spending a lot of time mapping out a very precise treatment plan. If all goes well he believes the spinal cord compression will be gone and maybe even all the tumor in that T10 vertebrae depending on how responsive it is to the radiation. Quite a miracle if it happens especially on a bone that was already radiated 7ish months ago. But he is confident and he's taking the time to do it right. On the 7th he will do a dry run to make sure everything lines up perfectly. Then the 10th is the 1st zap and the 19th is the last zap. It will be 30gy in 5 fractions all to the T10. Last summer it was 30gy in 10 fractions to t8,t9,t10,t11.
Then if everything goes well I can finally reschedule to get to MSK in New York, Moffitt in Tampa, MDA in Houston and Sarah Cannon in Nashville. I think those are the best mel places I could find but I might be wrong. Lots of traveling but I gotta do it when the cord compression is gone. Dunno if I can cause just the 3 CT scans and MRI yesterday wore me out but we shall see.
At least my Dr at Mayo is really nice. He called me on his own yesterday just to see how things were going. Unfortunately he has no treatment for me other than the taf/mek combo but at least he cares a lot. Actually if it wasn't for him telling me to have my local Dr order it I wouldn't have the combo either.
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- March 2, 2014 at 1:06 am
Artie,
Don't have much to add. Brian broke things down pretty well. Just wanted you to know I'm thinking about you. Hang in there. I like the attitude and dedication your radiologist seems to have…so have my fingers crossed that the combo of treatments you are on will get you in a more stable place!!
Yours, Celeste
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- March 2, 2014 at 1:06 am
Artie,
Don't have much to add. Brian broke things down pretty well. Just wanted you to know I'm thinking about you. Hang in there. I like the attitude and dedication your radiologist seems to have…so have my fingers crossed that the combo of treatments you are on will get you in a more stable place!!
Yours, Celeste
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- March 2, 2014 at 1:06 am
Artie,
Don't have much to add. Brian broke things down pretty well. Just wanted you to know I'm thinking about you. Hang in there. I like the attitude and dedication your radiologist seems to have…so have my fingers crossed that the combo of treatments you are on will get you in a more stable place!!
Yours, Celeste
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- March 4, 2014 at 1:14 am
Art,
Just to add to what brian was saying , if there is a V600E you ahve a good chance of response to BRAF inhibitors or MEK inhibitors(Trametinib), but since you have tried BRAF inhibitors and as it do not seem to work, I am not really sure whether MEK inhibitors could work.
PD1 is basically a molecule that helps tumor to evade immune response so treatments like MK3475(PD1 blocking antibody) or similar antibody treatments may work better if your tumours express PD1 ,but also many times it work on persons negative for PD1, as basically what the antibody does is to inhibit your bodies normal immune suppressive events.
I would also have encouraged you to speak to your clinicians about drug holiday therapies with BRAF inhibitors or MEK inhibitors if you were responsive to it as it has been also shown recently that these drug holidays prevent emergence of resistance and you can have a controllable disease state.
but the most promising results currently for stage 4 melanoma is a combination of Yervoy (CTLA4 inhibitor) with PD1 inhibitor antibodies. if there are any trials with this combination ask your clinician to advice you.ANd it do not matter whether you have taken Yervoy before or not it always work better in combination with PD1 inhibitory antibodies.
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- March 4, 2014 at 1:14 am
Art,
Just to add to what brian was saying , if there is a V600E you ahve a good chance of response to BRAF inhibitors or MEK inhibitors(Trametinib), but since you have tried BRAF inhibitors and as it do not seem to work, I am not really sure whether MEK inhibitors could work.
PD1 is basically a molecule that helps tumor to evade immune response so treatments like MK3475(PD1 blocking antibody) or similar antibody treatments may work better if your tumours express PD1 ,but also many times it work on persons negative for PD1, as basically what the antibody does is to inhibit your bodies normal immune suppressive events.
I would also have encouraged you to speak to your clinicians about drug holiday therapies with BRAF inhibitors or MEK inhibitors if you were responsive to it as it has been also shown recently that these drug holidays prevent emergence of resistance and you can have a controllable disease state.
but the most promising results currently for stage 4 melanoma is a combination of Yervoy (CTLA4 inhibitor) with PD1 inhibitor antibodies. if there are any trials with this combination ask your clinician to advice you.ANd it do not matter whether you have taken Yervoy before or not it always work better in combination with PD1 inhibitory antibodies.
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- March 4, 2014 at 1:14 am
Art,
Just to add to what brian was saying , if there is a V600E you ahve a good chance of response to BRAF inhibitors or MEK inhibitors(Trametinib), but since you have tried BRAF inhibitors and as it do not seem to work, I am not really sure whether MEK inhibitors could work.
PD1 is basically a molecule that helps tumor to evade immune response so treatments like MK3475(PD1 blocking antibody) or similar antibody treatments may work better if your tumours express PD1 ,but also many times it work on persons negative for PD1, as basically what the antibody does is to inhibit your bodies normal immune suppressive events.
I would also have encouraged you to speak to your clinicians about drug holiday therapies with BRAF inhibitors or MEK inhibitors if you were responsive to it as it has been also shown recently that these drug holidays prevent emergence of resistance and you can have a controllable disease state.
but the most promising results currently for stage 4 melanoma is a combination of Yervoy (CTLA4 inhibitor) with PD1 inhibitor antibodies. if there are any trials with this combination ask your clinician to advice you.ANd it do not matter whether you have taken Yervoy before or not it always work better in combination with PD1 inhibitory antibodies.
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- March 5, 2014 at 7:57 am
Anti-PD-1 treatments are immunotherapies, not targeted chemo. They work on the immunesystem level at the T-cell level, not on specific DNA mutations.
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- March 5, 2014 at 7:57 am
Anti-PD-1 treatments are immunotherapies, not targeted chemo. They work on the immunesystem level at the T-cell level, not on specific DNA mutations.
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- March 5, 2014 at 7:57 am
Anti-PD-1 treatments are immunotherapies, not targeted chemo. They work on the immunesystem level at the T-cell level, not on specific DNA mutations.
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- March 5, 2014 at 8:00 am
There are also PD-1/IL-2 combo trials underway as well.
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- March 5, 2014 at 8:00 am
There are also PD-1/IL-2 combo trials underway as well.
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- March 5, 2014 at 8:00 am
There are also PD-1/IL-2 combo trials underway as well.
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- March 5, 2014 at 8:43 am
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- March 5, 2014 at 8:43 am
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- March 5, 2014 at 8:43 am
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- March 5, 2014 at 10:42 pm
Thank you everyone. Yes I was trying to get to a place that has PD1 but spinal compression reared its ugly head. So I'm supposed to start radiation a 2nd time to that area monday. At least the radiologist is confident he can resolve it again. Then yeah it's on to MSK in New York, Moffit in Tampa, MDA in Houston and Sarah Cannon in Nashville. At least that's the plan if I can make it to those places.
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- March 5, 2014 at 10:42 pm
Thank you everyone. Yes I was trying to get to a place that has PD1 but spinal compression reared its ugly head. So I'm supposed to start radiation a 2nd time to that area monday. At least the radiologist is confident he can resolve it again. Then yeah it's on to MSK in New York, Moffit in Tampa, MDA in Houston and Sarah Cannon in Nashville. At least that's the plan if I can make it to those places.
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- March 5, 2014 at 10:42 pm
Thank you everyone. Yes I was trying to get to a place that has PD1 but spinal compression reared its ugly head. So I'm supposed to start radiation a 2nd time to that area monday. At least the radiologist is confident he can resolve it again. Then yeah it's on to MSK in New York, Moffit in Tampa, MDA in Houston and Sarah Cannon in Nashville. At least that's the plan if I can make it to those places.
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