amyb3517

thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

She is 36 and has a 3 and 7 yr old.

I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

Amy

thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

She is 36 and has a 3 and 7 yr old.

I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

Amy

thank YOU for posting!  My SIL was diagnosed with Stage III in May, and by August, couldn't be in the clinical trial with the Yervoy because they found 'areas of concern' on her spine.  By the time they got to the biopsy stage for her spine, she had a lump in her breast.  They tested that and FINALLY~~~ in OCTOBER, told her that they had confirmed that it was melanoma.  So, last week they wanted her to start a Phase I trial,  with Z and XL888 (he is BRAF  + ) but couldn't do scans right away, although she has been in agonizing pain and her ability to walk has been diminished— she is now using a walker.   (I left her a week ago and can't believe the decline in JUST ONE WEEK!) So they put her off AGAIN and yesterday her leg got so swollen that they took her to the hospital and admitted her for a blood clot in her leg.  Now they tell her that it is in her lung (small but there) and she can't do the trial. So after all the waiting, praying, confusion, etc, she will only get the drug that she COULD have started in August.  I PRAY that Zeloboraf has the same amazing results for her that others have had.

She is 36 and has a 3 and 7 yr old.

I read these posts everyday and pray for all of you.  You are all amazing to share your stories.  Stay strong and fight with every ounce of energy you can muster. 

Amy

Kely,

  I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.

I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..

Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.

Kely,

  I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.

I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..

Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.

Kely,

  I agree with awillett1991, Z will be there as a standard of care when/if the others fail, but these new and upcoming treatments are whats next…so you should defintely look at the newer treatments to see if they hold more promise.

I looked at the sites that are 'not yet recruiting', and there are going to be sites in NY, IL, TN and others…..

Since it is only in Phase I, I would guess that the BRAF/MEK trial might be the first option for you if you decide to go the trial route.

Kelly,

 the trial that has the BRAF/MEK seems to be the most promising.  Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial.  In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working,  you are excluded from this trial.  This trial is in Tampa.

Good luck

Kelly,

 the trial that has the BRAF/MEK seems to be the most promising.  Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial.  In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working,  you are excluded from this trial.  This trial is in Tampa.

Good luck

Kelly,

 the trial that has the BRAF/MEK seems to be the most promising.  Also, if you look at the criteria on the others, if you have had previously had treatment for either of these alone, you can't participate in THIS trial.  In other words, if you start out with just Z or just IPI or just IL-2, I think when/if these stop working,  you are excluded from this trial.  This trial is in Tampa.

Good luck