PET/CT Results today 5 Months On BRAF Combo…

I can offer just a little info…I received Xgeva monthly until I started a clinical trial at NIH.  I really thought it was helpful.  The doctors at NIH discontinued it as I think it has some properties that would interfere with the trial.  Also, melanoma attacked my L2 vertebrae too.  I'm sorry to say that 10 rounds  of radiation didn't work and I had to have some surgery.  They inserted two rods and six screws.  They were unable to get all of the tumor but prior to the surgery they did an embolization (cut off the blood supply) and perhaps that slowed or killed the tumor because so far it has not progressed.  

Best wishes!  Down with Melanoma!

I can offer just a little info…I received Xgeva monthly until I started a clinical trial at NIH.  I really thought it was helpful.  The doctors at NIH discontinued it as I think it has some properties that would interfere with the trial.  Also, melanoma attacked my L2 vertebrae too.  I'm sorry to say that 10 rounds  of radiation didn't work and I had to have some surgery.  They inserted two rods and six screws.  They were unable to get all of the tumor but prior to the surgery they did an embolization (cut off the blood supply) and perhaps that slowed or killed the tumor because so far it has not progressed.  

Best wishes!  Down with Melanoma!

I can offer just a little info…I received Xgeva monthly until I started a clinical trial at NIH.  I really thought it was helpful.  The doctors at NIH discontinued it as I think it has some properties that would interfere with the trial.  Also, melanoma attacked my L2 vertebrae too.  I'm sorry to say that 10 rounds  of radiation didn't work and I had to have some surgery.  They inserted two rods and six screws.  They were unable to get all of the tumor but prior to the surgery they did an embolization (cut off the blood supply) and perhaps that slowed or killed the tumor because so far it has not progressed.  

Best wishes!  Down with Melanoma!

I'm on xgeva and wish I had started it sooner but I had a bad reaction to zometa. I've had 4 xgeva shots and they have been fine so far. I would recommend getting on xgeva especially since you have bone tumors in your vertebrae.

The radiation for me did shrink the tumor in my t10. It was 30 gray in 5 fractions. For me I had no side affects. If you do radiation make sure they include the CT scanner with their radiation beams so they can more precisely target it. I had radiation to my t10 before without the CT and this 2nd time with the CT was so much better. Also make sure they do an MRI beforehand so they know precisely the areas they will be radiating.

About the meds I dunno. I just quit the taf/mek combo so I can start Merck's compassionate use PD1. The doc said since 1 tumor grew a lot and spread to a lymph node the combo was failing. However other tumors either stayed the same or shrank a little bit. Also you mention increase in activity. That sounds like how they respond to the FDG in the PET. That can flucuate some from PET scan to PET scan and your tumor could still physically be the same size. What I'm talking about is in the PET/CT the actual measurement in centimeters the tumor grows then you know the meds are not working on that tumor.

I'm on xgeva and wish I had started it sooner but I had a bad reaction to zometa. I've had 4 xgeva shots and they have been fine so far. I would recommend getting on xgeva especially since you have bone tumors in your vertebrae.

The radiation for me did shrink the tumor in my t10. It was 30 gray in 5 fractions. For me I had no side affects. If you do radiation make sure they include the CT scanner with their radiation beams so they can more precisely target it. I had radiation to my t10 before without the CT and this 2nd time with the CT was so much better. Also make sure they do an MRI beforehand so they know precisely the areas they will be radiating.

About the meds I dunno. I just quit the taf/mek combo so I can start Merck's compassionate use PD1. The doc said since 1 tumor grew a lot and spread to a lymph node the combo was failing. However other tumors either stayed the same or shrank a little bit. Also you mention increase in activity. That sounds like how they respond to the FDG in the PET. That can flucuate some from PET scan to PET scan and your tumor could still physically be the same size. What I'm talking about is in the PET/CT the actual measurement in centimeters the tumor grows then you know the meds are not working on that tumor.

I'm on xgeva and wish I had started it sooner but I had a bad reaction to zometa. I've had 4 xgeva shots and they have been fine so far. I would recommend getting on xgeva especially since you have bone tumors in your vertebrae.

The radiation for me did shrink the tumor in my t10. It was 30 gray in 5 fractions. For me I had no side affects. If you do radiation make sure they include the CT scanner with their radiation beams so they can more precisely target it. I had radiation to my t10 before without the CT and this 2nd time with the CT was so much better. Also make sure they do an MRI beforehand so they know precisely the areas they will be radiating.

About the meds I dunno. I just quit the taf/mek combo so I can start Merck's compassionate use PD1. The doc said since 1 tumor grew a lot and spread to a lymph node the combo was failing. However other tumors either stayed the same or shrank a little bit. Also you mention increase in activity. That sounds like how they respond to the FDG in the PET. That can flucuate some from PET scan to PET scan and your tumor could still physically be the same size. What I'm talking about is in the PET/CT the actual measurement in centimeters the tumor grows then you know the meds are not working on that tumor.