Zelboraf-How long to know if it’s working?

Usually if there is a response (50% response rate) it can be seen either by mets that are near the skin shrinking and often within days. Standard of Care is a scan 8 wks after starting or sooner if there is a concern.

LDH can, for some people, reliably indicate tumor burden, but often also includes other tissue damage or major inflammation. Either way, it going down is a good thing! How is Don faring?

Not sure about amount of disease – I have read in papers and heard from people here that it can a be dramatic response however remember you are an unknown, unless DF has treated this mutation before.

Blessings,
Amy

Usually if there is a response (50% response rate) it can be seen either by mets that are near the skin shrinking and often within days. Standard of Care is a scan 8 wks after starting or sooner if there is a concern.

LDH can, for some people, reliably indicate tumor burden, but often also includes other tissue damage or major inflammation. Either way, it going down is a good thing! How is Don faring?

Not sure about amount of disease – I have read in papers and heard from people here that it can a be dramatic response however remember you are an unknown, unless DF has treated this mutation before.

Blessings,
Amy

Usually if there is a response (50% response rate) it can be seen either by mets that are near the skin shrinking and often within days. Standard of Care is a scan 8 wks after starting or sooner if there is a concern.

LDH can, for some people, reliably indicate tumor burden, but often also includes other tissue damage or major inflammation. Either way, it going down is a good thing! How is Don faring?

Not sure about amount of disease – I have read in papers and heard from people here that it can a be dramatic response however remember you are an unknown, unless DF has treated this mutation before.

Blessings,
Amy

I just read your profile, Janet… you guys have sure seen some rough waters ( to say the least) by anybody's standards.Responses to Zelboraf can be pretty quick when it is effective. I have seen scans posted from people who had very advanced disease and after a month of the zelboraf it was noticably improved. I never had any subcutaneous tumors to watch, so had to wait for scans. At a little over 8 weeks I had a complete response for tumors of the pancreas, messentary, and back muscles. Many people who have a response start to notice a decrease in the pain being caused by the tumors pressing on various nerves.For others the response takes longer. It is a hard thing… very hard… to have to wait and see. How long before he will have his first scans? 

As Amy said, the LDH CAn be an indicator, and I would certainly say it is better to see it decreasing, but it is not a guarantee of what is going on inside. Still, a hopeful sign, though!!

How is he tolerating the zelboraf?

Tina

I just read your profile, Janet… you guys have sure seen some rough waters ( to say the least) by anybody's standards.Responses to Zelboraf can be pretty quick when it is effective. I have seen scans posted from people who had very advanced disease and after a month of the zelboraf it was noticably improved. I never had any subcutaneous tumors to watch, so had to wait for scans. At a little over 8 weeks I had a complete response for tumors of the pancreas, messentary, and back muscles. Many people who have a response start to notice a decrease in the pain being caused by the tumors pressing on various nerves.For others the response takes longer. It is a hard thing… very hard… to have to wait and see. How long before he will have his first scans? 

As Amy said, the LDH CAn be an indicator, and I would certainly say it is better to see it decreasing, but it is not a guarantee of what is going on inside. Still, a hopeful sign, though!!

How is he tolerating the zelboraf?

Tina

I just read your profile, Janet… you guys have sure seen some rough waters ( to say the least) by anybody's standards.Responses to Zelboraf can be pretty quick when it is effective. I have seen scans posted from people who had very advanced disease and after a month of the zelboraf it was noticably improved. I never had any subcutaneous tumors to watch, so had to wait for scans. At a little over 8 weeks I had a complete response for tumors of the pancreas, messentary, and back muscles. Many people who have a response start to notice a decrease in the pain being caused by the tumors pressing on various nerves.For others the response takes longer. It is a hard thing… very hard… to have to wait and see. How long before he will have his first scans? 

As Amy said, the LDH CAn be an indicator, and I would certainly say it is better to see it decreasing, but it is not a guarantee of what is going on inside. Still, a hopeful sign, though!!

How is he tolerating the zelboraf?

Tina

My husband's disease was also very advanced.  I noticed an improvement within days of starting Zelboraf.  His pain levels decreased and his appetite and energy increased. 

Best of luck.  Hope it works for your husband. 

My husband's disease was also very advanced.  I noticed an improvement within days of starting Zelboraf.  His pain levels decreased and his appetite and energy increased. 

Best of luck.  Hope it works for your husband. 

My husband's disease was also very advanced.  I noticed an improvement within days of starting Zelboraf.  His pain levels decreased and his appetite and energy increased. 

Best of luck.  Hope it works for your husband. 

Hi Janet Lee,

My husband is on his 9th day of Zelboraf, and we saw a dramatic difference by the 3rd day.  He almost immediately began to look better – not tired, he had energy again, started eating a lot more and the subq tumor that he has has gone from the size of a pecan to smaller than a pea.  I can only hope that the tumors on his liver, lung, etc are shrinking too!

I don't know what the standard response time is though.  It does seem that many people begin feeling better quickly, as is the case with my husband. 

How is Don tolerating the Z?  So far my husband has mostly had skin issues and looks like some carcinomas popping up.

Let us know how it goes and take care!

Hi Janet Lee,

My husband is on his 9th day of Zelboraf, and we saw a dramatic difference by the 3rd day.  He almost immediately began to look better – not tired, he had energy again, started eating a lot more and the subq tumor that he has has gone from the size of a pecan to smaller than a pea.  I can only hope that the tumors on his liver, lung, etc are shrinking too!

I don't know what the standard response time is though.  It does seem that many people begin feeling better quickly, as is the case with my husband. 

How is Don tolerating the Z?  So far my husband has mostly had skin issues and looks like some carcinomas popping up.

Let us know how it goes and take care!

Hi Janet Lee,

My husband is on his 9th day of Zelboraf, and we saw a dramatic difference by the 3rd day.  He almost immediately began to look better – not tired, he had energy again, started eating a lot more and the subq tumor that he has has gone from the size of a pecan to smaller than a pea.  I can only hope that the tumors on his liver, lung, etc are shrinking too!

I don't know what the standard response time is though.  It does seem that many people begin feeling better quickly, as is the case with my husband. 

How is Don tolerating the Z?  So far my husband has mostly had skin issues and looks like some carcinomas popping up.

Let us know how it goes and take care!

I had my first follow-up scan at about 6 weeks after starting the Zelboraf and it showed a 50% reduction in tumor size.  So the response seems to be pretty quick.  Wishing you all the best!

BJ

I had my first follow-up scan at about 6 weeks after starting the Zelboraf and it showed a 50% reduction in tumor size.  So the response seems to be pretty quick.  Wishing you all the best!

BJ

I had my first follow-up scan at about 6 weeks after starting the Zelboraf and it showed a 50% reduction in tumor size.  So the response seems to be pretty quick.  Wishing you all the best!

BJ