GSK BRAF (brain met trial) results are in…

This topic has 28 replies, 13 voices, and was last updated 12 years, 10 months ago by jag.

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- June 17, 2011 at 1:41 am
- Quote
NicOz
Participant
I wasn’t going to worry about an update, but I know some others on BRAF inhibitors are interested in how others are responding, so here goes with my 8 week scan results (with a little prelude to further indicate how well the GSK2118436 has been working its magic)

I wasn’t going to worry about an update, but I know some others on BRAF inhibitors are interested in how others are responding, so here goes with my 8 week scan results (with a little prelude to further indicate how well the GSK2118436 has been working its magic)

I had scans done as part of the screening process back in April, and at the time I didn’t ask for the results as I didn’t want to know them. I knew it wasn’t good and decided that sweating the details was not going to improve my extended stay in Sydney and chose blissful ignorance- it was MUCH more blissful than even *I* expected… I never expected these scan results in a million years, and I’m a big believer in expecting the worst 😛

In the 2 months between MRI’s, I somehow grew over 50 new brain mets, up to 12mm. And they weren’t the “fairy lights” I expected to see on the actual scan. They were like disco balls scattered throughout my brain- I now call them “popping candy”. So that first month of treatment was even more impressive than I originally thought after those 4 week results. ALL of the new ones gone, and 4 of the 5 considerably larger ones shrunk by approx 50%. (That was week 4)

Week 8 showed the following. The 5th and largest brain one (most critical, too- right next to motor area) has slowed and actually shrunk a little. The other 4 remain stable.

Extracranial results went as follows: Adrenal mass gone. One of liver lesions now indiscernable, other 2 larger ones have reduced in size. Axillary nodes have resolved. No new growth. Right butt cheek is still the same- poking it’s tongue out at me for telling mel to kiss my butt cheek for 3 years, I’d guess.

So, after 3 years since diagnosis, I’m finally “STABLE”. I’m happy with stable. Rapt, actually. I know everyone’s chasing NED, but I’ve never been one to go for the ostentatious types. I like the quiet achievers as part of my life, and I'm happy to date 'stable'.

Being fortunate enough to be here to celebrate my daughters 6th birthday, has been an amazing experience. (And being steroid free is an added bonus which I am very much enjoying!) At the moment, though, my thoughts are very much with Eric and Jill and others who are not as fortunate as I am at the moment.

Nic

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Replies

- - June 17, 2011 at 2:42 am
  - Quote
  lhaley
  Participant
  Nic,
  
  Stable is a beautiful word. If you had asked for the results and had heard about the 50 mets I imagine you would have left Sydney and gone home to be with G. Such a blessing that you choose not to know! These results are outstanding!
  
  Enjoy, enjoy , enjoy!!! Just when is that Miley concert?
  
  Linda
  - June 17, 2011 at 3:02 am
    
    Quote
    NicOz
    Participant
    
    Next Friday- so a week away. Ironic that the first non-treatment/mel related thing I've been to Sydney for in probably 2 years, and it's a Miley Cyrus concert *cringe* 😛 Happy as a pig in faeces to be able to do it for her though! (She's so excited- me? Somewhat less so BUT I was smart enough to arrange for my niece to go to the actual concert with her. I don't think I would be able to sit through it myself…) SO, I plan a relaxing evening at the apartment, with a few glasses (or bottles) of bubbly, and a catch up with a friend, while they happily battle the crowds!
    
    Still laughing at this one when I told her I was too tired to do something last week, she asked why so I said I've had lots of operations over the past few years and that can make you tired. Plus sometimes the medicine makes me tired. Her response? "Well *I* had my tonsils out this year, and I had to have medicine, and *I'M* not tired!" (Put firmly in my place by a 6 year old :P)
    
    You're right about the not knowing- I would have gone home to be with G in a flash! And yes, it's been a great result so far- stable is nothing to sneeze at after having over 75 brain mets (at last count :P) Looking forward to picking her up from school soon, and taking her shopping for our friday date night tonight- "Girl's Night". Snacks, easy food and watch a dvd curled up in bed together. Life is good! 🙂
  - June 17, 2011 at 3:02 am
    
    Quote
    NicOz
    Participant
    
    Next Friday- so a week away. Ironic that the first non-treatment/mel related thing I've been to Sydney for in probably 2 years, and it's a Miley Cyrus concert *cringe* 😛 Happy as a pig in faeces to be able to do it for her though! (She's so excited- me? Somewhat less so BUT I was smart enough to arrange for my niece to go to the actual concert with her. I don't think I would be able to sit through it myself…) SO, I plan a relaxing evening at the apartment, with a few glasses (or bottles) of bubbly, and a catch up with a friend, while they happily battle the crowds!
    
    Still laughing at this one when I told her I was too tired to do something last week, she asked why so I said I've had lots of operations over the past few years and that can make you tired. Plus sometimes the medicine makes me tired. Her response? "Well *I* had my tonsils out this year, and I had to have medicine, and *I'M* not tired!" (Put firmly in my place by a 6 year old :P)
    
    You're right about the not knowing- I would have gone home to be with G in a flash! And yes, it's been a great result so far- stable is nothing to sneeze at after having over 75 brain mets (at last count :P) Looking forward to picking her up from school soon, and taking her shopping for our friday date night tonight- "Girl's Night". Snacks, easy food and watch a dvd curled up in bed together. Life is good! 🙂
- - June 17, 2011 at 2:42 am
  - Quote
  lhaley
  Participant
  Nic,
  
  Stable is a beautiful word. If you had asked for the results and had heard about the 50 mets I imagine you would have left Sydney and gone home to be with G. Such a blessing that you choose not to know! These results are outstanding!
  
  Enjoy, enjoy , enjoy!!! Just when is that Miley concert?
  
  Linda
- - June 17, 2011 at 2:52 am
  - Quote
  ValinMtl
  Participant
  Dear Nic…Stable is wonderful…melanoma warriors are satisfied with that…so blessed that you can celebrate your daughter's 6th birthday…enjoy with added pleasure, smell the roses. Val xx
- - June 17, 2011 at 2:52 am
  - Quote
  ValinMtl
  Participant
  Dear Nic…Stable is wonderful…melanoma warriors are satisfied with that…so blessed that you can celebrate your daughter's 6th birthday…enjoy with added pleasure, smell the roses. Val xx
- - June 17, 2011 at 5:50 am
  - Quote
  washoegal
  Participant
  So glad you posted the great news. Have missed hearing from you. Please keep posting. And give you daughter a big hug from all of us! Keep up the great fight,
  
  Mary
  
  Stage 3
- - June 17, 2011 at 5:50 am
  - Quote
  washoegal
  Participant
  So glad you posted the great news. Have missed hearing from you. Please keep posting. And give you daughter a big hug from all of us! Keep up the great fight,
  
  Mary
  
  Stage 3
- - June 17, 2011 at 1:13 pm
  - Quote
  Carmon in NM
  Participant
  This is such wonderful news to read this morning! I'm so very happy for you and your daughter!
  
  Like you, when I started a trial I wasn't letting myself hope for anything more than 'stable' and when that first set of scans came in showing better than 50% reduction I thought maybe I would get it.
  
  Then the last scan at the end of the trial and I kept reading those magic words over and over…'No evidence of metastatic disease.'! I hope so much that you and I (and many, many others!) can share that experience as well!
- - June 17, 2011 at 1:13 pm
  - Quote
  Carmon in NM
  Participant
  This is such wonderful news to read this morning! I'm so very happy for you and your daughter!
  
  Like you, when I started a trial I wasn't letting myself hope for anything more than 'stable' and when that first set of scans came in showing better than 50% reduction I thought maybe I would get it.
  
  Then the last scan at the end of the trial and I kept reading those magic words over and over…'No evidence of metastatic disease.'! I hope so much that you and I (and many, many others!) can share that experience as well!
- - June 17, 2011 at 1:26 pm
  - Quote
  dawn dion
  Participant
  Nic –
  
  I am so EXCITED for you.   You replied to my post yesterday that I read literally as I was walking out the door for scans.   Like you I always go prepared for the worst.   The one time I went thinking that things where gonna be fine because there was no reason for them not to be I got wailed in face. So now I am always expecting the worse. What is the saying "Once bitten, Twice Shy" that's how I feel.
  
  I wasn't going to post either – oddly for just about the same reason. I always feel bad about being happy when others are in such a bad spot.    But I had to say THANK YOU! You made me appreciate my day even more.
  
  I too had GREAT scan results. Everything still shrinking. I do not know how you do it. Trust me I know WHY and for who but I don't know how. I do not have anywhere near the tumor burden that you have. So THANK YOU for making me realize how truly lucky I am.  The fact that it is in your brain – freaks me out. Some of things people say here – freak me out. So maybe in a way I am running scared and while, I left yesterday thrilled with the results I was still not happy that the two tiny spots that I have hadn't shrunk more and that the "sh.." is not gone yet. Believe me part of me was actually mad.
  
  THANK YOU for putting into perspective for me that I get to spend my Husbands 50th birthday/Fathers day with him and my beautiful girls (6 and 8). Again, I am more than grateful that I am, but that little part of me was mad that this beast does not allow me to do what I had originally planned for his Big 50.
  
  Enjoy your daughters birthday and the bubbly you have so earned it. I always hope that this drug combo continues to work for us. I hear great things about it when I go to Moffitt, but the cynic in me always thinks " well what else would you say" so when I get to hear from others that are actually having those great results it makes me feel better.
  
  Heres wishing you much more success
  
  Hugs and Smiles
  
  Dawn
- - June 17, 2011 at 1:26 pm
  - Quote
  dawn dion
  Participant
  Nic –
  
  I am so EXCITED for you.   You replied to my post yesterday that I read literally as I was walking out the door for scans.   Like you I always go prepared for the worst.   The one time I went thinking that things where gonna be fine because there was no reason for them not to be I got wailed in face. So now I am always expecting the worse. What is the saying "Once bitten, Twice Shy" that's how I feel.
  
  I wasn't going to post either – oddly for just about the same reason. I always feel bad about being happy when others are in such a bad spot.    But I had to say THANK YOU! You made me appreciate my day even more.
  
  I too had GREAT scan results. Everything still shrinking. I do not know how you do it. Trust me I know WHY and for who but I don't know how. I do not have anywhere near the tumor burden that you have. So THANK YOU for making me realize how truly lucky I am.  The fact that it is in your brain – freaks me out. Some of things people say here – freak me out. So maybe in a way I am running scared and while, I left yesterday thrilled with the results I was still not happy that the two tiny spots that I have hadn't shrunk more and that the "sh.." is not gone yet. Believe me part of me was actually mad.
  
  THANK YOU for putting into perspective for me that I get to spend my Husbands 50th birthday/Fathers day with him and my beautiful girls (6 and 8). Again, I am more than grateful that I am, but that little part of me was mad that this beast does not allow me to do what I had originally planned for his Big 50.
  
  Enjoy your daughters birthday and the bubbly you have so earned it. I always hope that this drug combo continues to work for us. I hear great things about it when I go to Moffitt, but the cynic in me always thinks " well what else would you say" so when I get to hear from others that are actually having those great results it makes me feel better.
  
  Heres wishing you much more success
  
  Hugs and Smiles
  
  Dawn
- - June 17, 2011 at 1:42 pm
  - Quote
  shellebrownies
  Participant
  Nic, that's fantastic news! I'm so happy for you! That is amazing. I hope you stay stable or NED for a long time.
  
  Oh, and a big hint for that Miley concert? Earplugs! Not joking. Not because of Miley (unless you don't lke her), but because of all the little girls sceaming. Been there, done that with my daughter (back when it was Hannah Montana, but same thing) and that high pitched screaming is BRUTAL without earplugs…
  
  Michelle, wife of Don
  - June 17, 2011 at 1:45 pm
    
    Quote
    shellebrownies
    Participant
    
    Just realized you aren't going yourself to the concert… You still may want to send earplugs with your niece anyway.
  - June 17, 2011 at 1:45 pm
    
    Quote
    shellebrownies
    Participant
    
    Just realized you aren't going yourself to the concert… You still may want to send earplugs with your niece anyway.
- - June 17, 2011 at 1:42 pm
  - Quote
  shellebrownies
  Participant
  Nic, that's fantastic news! I'm so happy for you! That is amazing. I hope you stay stable or NED for a long time.
  
  Oh, and a big hint for that Miley concert? Earplugs! Not joking. Not because of Miley (unless you don't lke her), but because of all the little girls sceaming. Been there, done that with my daughter (back when it was Hannah Montana, but same thing) and that high pitched screaming is BRUTAL without earplugs…
  
  Michelle, wife of Don
- - June 17, 2011 at 1:52 pm
  - Quote
  Carol Taylor
  Participant
  Yea! Happy birthday to your daughter and to you! Glad you get to celebrate with her and hope many more birthdays follow for you. You mention Jill & Eric. She's got her hands full right now and may not have time to do this, so I'll let you know that they have posted another video where Eric, yesterday, calls for the banning of tanning beds. please share.
  
  http://www.youtube.com/user/EricNJill?feature=mhee
  
  Grace and peace,
  
  Carol
- - June 17, 2011 at 1:52 pm
  - Quote
  Carol Taylor
  Participant
  Yea! Happy birthday to your daughter and to you! Glad you get to celebrate with her and hope many more birthdays follow for you. You mention Jill & Eric. She's got her hands full right now and may not have time to do this, so I'll let you know that they have posted another video where Eric, yesterday, calls for the banning of tanning beds. please share.
  
  http://www.youtube.com/user/EricNJill?feature=mhee
  
  Grace and peace,
  
  Carol
- - June 17, 2011 at 3:04 pm
  - Quote
  Tim–MRF
  Guest
  Thanks for sharing this great news. Most of all because I am so glad to hear you had a good report. But a little bit, too, because it is good to know that some of these new treatments are helping people–particularly with brain mets.
  
  Enjoy the bubbly!
  
  Tim–MRF
- - June 17, 2011 at 3:04 pm
  - Quote
  Tim–MRF
  Guest
  Thanks for sharing this great news. Most of all because I am so glad to hear you had a good report. But a little bit, too, because it is good to know that some of these new treatments are helping people–particularly with brain mets.
  
  Enjoy the bubbly!
  
  Tim–MRF
- - June 18, 2011 at 2:49 pm
  - Quote
  EricNJill
  Participant
  Nic,
  
  I am so happy for you! That is awesome. I will be praying for continued improvement for you.
  
  JillNEric in OH
- - June 18, 2011 at 2:49 pm
  - Quote
  EricNJill
  Participant
  Nic,
  
  I am so happy for you! That is awesome. I will be praying for continued improvement for you.
  
  JillNEric in OH
- - June 18, 2011 at 5:12 pm
  - Quote
  kylez
  Participant
  Nic, glad you're getting encouraging responses/results.
  
  I had 2 brain mets resected 6/1 and 2 more new ones gamma knife'd yesterday.
  
  I have yet to be on any targeted or systemic therapy since my brain mets started but that may change shortly. I'm BRAF- so can't go to the trial you're on.
  
  But I'm really encouraged to hear about your responses in the brain.
- - June 18, 2011 at 5:12 pm
  - Quote
  kylez
  Participant
  Nic, glad you're getting encouraging responses/results.
  
  I had 2 brain mets resected 6/1 and 2 more new ones gamma knife'd yesterday.
  
  I have yet to be on any targeted or systemic therapy since my brain mets started but that may change shortly. I'm BRAF- so can't go to the trial you're on.
  
  But I'm really encouraged to hear about your responses in the brain.
- - June 18, 2011 at 7:21 pm
  - Quote
  MaryD
  Participant
  Thanks for sharing that great news Nic – fantastic results and stable is just fine! Most importantly, very happy that you can share time with your daughter on her special day – that is priceless . .
  
  Wising you continued successful results!
  
  Mary
- - June 18, 2011 at 7:21 pm
  - Quote
  MaryD
  Participant
  Thanks for sharing that great news Nic – fantastic results and stable is just fine! Most importantly, very happy that you can share time with your daughter on her special day – that is priceless . .
  
  Wising you continued successful results!
  
  Mary
- - June 18, 2011 at 9:52 pm
  - Quote
  jag
  Participant
  Nic, very happy to hear that you are off of the roids. Glad to hear the meds are working too. I hope they continue to keep mel stable and then eventually destroy it. Happy B-Day to little G, Hoping we get to see her make it to 7.
- - June 18, 2011 at 9:52 pm
  - Quote
  jag
  Participant
  Nic, very happy to hear that you are off of the roids. Glad to hear the meds are working too. I hope they continue to keep mel stable and then eventually destroy it. Happy B-Day to little G, Hoping we get to see her make it to 7.