BRAF question

Hi

Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

Also you could have a sniff around clinical trials.gov.

Go to advanced search

Put tick in open trials

Put tick in 18_65

Condition melanoma

Then put in your state/country

And see what turns up

If you know what trials are out there . easier to make enquiries.

Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

Best wishes

Deb

Hi

Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

Also you could have a sniff around clinical trials.gov.

Go to advanced search

Put tick in open trials

Put tick in 18_65

Condition melanoma

Then put in your state/country

And see what turns up

If you know what trials are out there . easier to make enquiries.

Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

Best wishes

Deb

Hi

Braf mutations can be present in up to 80% of melanoma tumour cells which is on the high side for most Brad driven tumours. The mutation switches off the stop cell growth mechanism.

This is good news in a way as it opens the path to treatment with the Braf inhibitor drugs which can be used to quickly reduce tumour burden. The problem is that the drugs can cease to be effective after a while although it can give time for other treatments to work.

The IPI nivo combo may work better than any single agent but I would wait to here your oncologists suggestions. Retesting your Braf status suggests he/she is thinking of that route already. 

Also you could have a sniff around clinical trials.gov.

Go to advanced search

Put tick in open trials

Put tick in 18_65

Condition melanoma

Then put in your state/country

And see what turns up

If you know what trials are out there . easier to make enquiries.

Found a good PDF from Vanderbilt via google with search terms Braf v600d melanoma. Not good at linkswnben on tablet

Best wishes

Deb

Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

2.  There is more work being done on treatments for less common melanoma mutations.

3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

I wish you my best.  Celeste

Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

2.  There is more work being done on treatments for less common melanoma mutations.

3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

I wish you my best.  Celeste

Unfortunately, melanoma has its own rule book that it doesn't like to share ahead of time.  Yes, there are cases of the mutation changing along the way.  You don't mention it…but it would be important to have your tumor sample evaluated for its NRAS status as well as other mutations if that has not been done already.  I am sorry for what you have already been through, but there is some hope. 

1.  When immunotherapy is working, it can produce significant inflammation through the influx of t cells, to the tumor…appearing as tumor growth.  Early on, folks were kicked out of studies when this "growth" showed up on flims, but it is now recognized as pseudoprogression, that shows up initially, then resolves as the t cells do their job and actually get rid of the tumor.  So….I am hopeful that this is what you are feeling.

2.  There is more work being done on treatments for less common melanoma mutations.

3.  You still have options like intralesional therapy (sounds like if you can feel it….your tumor may well be accessable for injection), JAK inhibitors, IDO inhibitors…none of which require a particular BRAF status and might be treatments to consider should you need them.

Hopefully, you will find success with your current immunotherapy…but there are other things available.  All the treatments I mentioned, as well as pseudoprogression and BRAF v600D, are discussed in posts on my blog if you are interested…just use the search bubble….

I wish you my best.  Celeste