Finally Found HOPE! BRAF & MEK Trial Response Pics

This topic has 63 replies, 25 voices, and was last updated 12 years, 6 months ago by applewhitegroup.

Post

- February 12, 2011 at 3:07 am
- Quote
EricNJill
Participant
I can't even explain to you in words how I am feeling tonight. After so many FAILED treatments in the last two years, we've finally found one that looks like it is working. Nothing even stopped progression before. When we found out the cancer spread to Eric's brain on November 2nd, I was devastated. It was one week before we were supposed to start a BRAF treatment in Nashville. Well God had another plan in store for us…we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS!

I can't even explain to you in words how I am feeling tonight. After so many FAILED treatments in the last two years, we've finally found one that looks like it is working. Nothing even stopped progression before. When we found out the cancer spread to Eric's brain on November 2nd, I was devastated. It was one week before we were supposed to start a BRAF treatment in Nashville. Well God had another plan in store for us…we got the last opening in a BRAF/MEK trial in Nashville and we feel so blessed by these changes in just 2 WEEKS!

I hope that no one is offended by this graphic pictures, but I had to share…

Viewing 42 reply threads

Replies

- - February 12, 2011 at 3:19 am
  - Quote
  glewis923
  Participant
  Congrats! i hope it continues to work on and on and on and………….just finally knowing you're doin' something is a relief in itself. I'll be glad when i get on a trial and feel i'm being a little proactive instead of reactive.
  
  Best of Luck and Love, Grady & Families.
- - February 12, 2011 at 3:19 am
  - Quote
  glewis923
  Participant
  Congrats! i hope it continues to work on and on and on and………….just finally knowing you're doin' something is a relief in itself. I'll be glad when i get on a trial and feel i'm being a little proactive instead of reactive.
  
  Best of Luck and Love, Grady & Families.
- - February 12, 2011 at 3:47 am
  - Quote
  NicOz
  Participant
  Oh I am so very happy to hear (and see!) this! What fantastic news- I'm surprised you've been able to stop dancing long enough to type on the computer 🙂
  
  And I doubt very much that anyone could look at those pictures and see anything other than a thing of beauty.
  - February 12, 2011 at 4:24 am
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Jill and Eric,
    
    SUCH good news! His leg looks so good now, and you can really see the improvement! I am so glad that he is responding!
    
    Vermont_Donna, stage 3a, just finished the 4th infusion of Ipi
  - February 12, 2011 at 4:24 am
    
    Quote
    Vermont_Donna
    Participant
    
    Dear Jill and Eric,
    
    SUCH good news! His leg looks so good now, and you can really see the improvement! I am so glad that he is responding!
    
    Vermont_Donna, stage 3a, just finished the 4th infusion of Ipi
- - February 12, 2011 at 3:47 am
  - Quote
  NicOz
  Participant
  Oh I am so very happy to hear (and see!) this! What fantastic news- I'm surprised you've been able to stop dancing long enough to type on the computer 🙂
  
  And I doubt very much that anyone could look at those pictures and see anything other than a thing of beauty.
- - February 12, 2011 at 4:27 am
  - Quote
  JuleFL
  Participant
  Wow! Great news, Jill and Eric. Wishing you much success with this trial.
  Jule
- - February 12, 2011 at 4:27 am
  - Quote
  JuleFL
  Participant
  Wow! Great news, Jill and Eric. Wishing you much success with this trial.
  Jule
- - February 12, 2011 at 12:04 pm
  - Quote
  jag
  Participant
  That is fantastic! I hope Eric is on his way to a complete cure soon!
- - February 12, 2011 at 12:04 pm
  - Quote
  jag
  Participant
  That is fantastic! I hope Eric is on his way to a complete cure soon!
- - February 12, 2011 at 1:36 pm
  - Quote
  KatyWI
  Participant
  Oh, I'm so thankful and happy for you!
  
  I am glad you posted the pisctures. In just two weeks – that is really impressive!
  
  KatyWI
- - February 12, 2011 at 1:36 pm
  - Quote
  KatyWI
  Participant
  Oh, I'm so thankful and happy for you!
  
  I am glad you posted the pisctures. In just two weeks – that is really impressive!
  
  KatyWI
- - February 12, 2011 at 3:49 pm
  - Quote
  killmel
  Participant
  So Happy for you & Eric.
  
  Does he have any side effects??? If so, how are you dealing with side effects?
  
  God Bless you both
  - February 12, 2011 at 4:59 pm
    
    Quote
    EricNJill
    Participant
    
    The only side effect he's suffered from so far is acne! He will take that any day!! We were told that it should go away in a couple of weeks.
  - February 12, 2011 at 4:59 pm
    
    Quote
    EricNJill
    Participant
    
    The only side effect he's suffered from so far is acne! He will take that any day!! We were told that it should go away in a couple of weeks.
- - February 12, 2011 at 3:49 pm
  - Quote
  killmel
  Participant
  So Happy for you & Eric.
  
  Does he have any side effects??? If so, how are you dealing with side effects?
  
  God Bless you both
- - February 12, 2011 at 3:56 pm
  - Quote
  jim Breitfeller
  Participant
  Jill and Eric,
  
  Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK. Lets hope you see a complete response.
  
  Thanks for Sharing.
- - February 12, 2011 at 3:56 pm
  - Quote
  jim Breitfeller
  Participant
  Jill and Eric,
  
  Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK. Lets hope you see a complete response.
  
  Thanks for Sharing.
- - February 12, 2011 at 3:56 pm
  - Quote
  jim Breitfeller
  Participant
  Jill and Eric,
  
  Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK. Lets hope you see a complete response.
  
  Thanks for Sharing.
- - February 12, 2011 at 3:56 pm
  - Quote
  jim Breitfeller
  Participant
  Jill and Eric,
  
  Congrats on getting your tumors to regress. I have read and heard great things about the combination of BRAF and MEK. Lets hope you see a complete response.
  
  Thanks for Sharing.
- - February 12, 2011 at 4:32 pm
  - Quote
  ValinMtl
  Participant
  Jill..As the hymn goes…I'm H-A-P-P-Y,I'm H-A-P-P-Y, I'm as happy as can be!!!!
  
  This wonderful news and as has been said, these pictures are things of beauty to see the shrinkage. Val xx
- - February 12, 2011 at 4:32 pm
  - Quote
  ValinMtl
  Participant
  Jill..As the hymn goes…I'm H-A-P-P-Y,I'm H-A-P-P-Y, I'm as happy as can be!!!!
  
  This wonderful news and as has been said, these pictures are things of beauty to see the shrinkage. Val xx
- - February 12, 2011 at 8:05 pm
  - Quote
  MichaelFL
  Participant
  That is awesome! I have always held out hope that these inhibitor trials are on the right path to one day stopping melanoma cold.
  
  Hoping for a continued durable response.
  
  Best wishes,
  
  Michael
  - February 12, 2011 at 8:37 pm
    
    Quote
    KellieSue
    Participant
    
    That is amazing. In just 2 weeks time! What great news. I'm so happy B-Raf is working for Eric.
    
    Kellie(from Iowa) Stage IV since 2008
  - February 12, 2011 at 8:37 pm
    
    Quote
    KellieSue
    Participant
    
    That is amazing. In just 2 weeks time! What great news. I'm so happy B-Raf is working for Eric.
    
    Kellie(from Iowa) Stage IV since 2008
- - February 12, 2011 at 8:05 pm
  - Quote
  MichaelFL
  Participant
  That is awesome! I have always held out hope that these inhibitor trials are on the right path to one day stopping melanoma cold.
  
  Hoping for a continued durable response.
  
  Best wishes,
  
  Michael
- - February 12, 2011 at 10:11 pm
  - Quote
  killmel
  Participant
  Hi Eric & Jill,
  
  So wonderful for you both. How is Eric feeling??
  
  I am hoping toget into the GSK Braf & Mek trial too.
  
  You mentioned in a previous post that Eric was getting acne. Is there a cream or something that he get to make the acne go away eventually???
  
  Also, are there anymore or other side effects that you were told that Eric might get and how are the side effects treated???
  
  Thank you for answer myquestions…by you sharing info about the trial does not make it as scary as it is. What dosage is Eric get of Braf & Mek??
  
  Take care..& thinking positive thoughts & prayers for continued response
  
  Jan
- - February 12, 2011 at 10:11 pm
  - Quote
  killmel
  Participant
  Hi Eric & Jill,
  
  So wonderful for you both. How is Eric feeling??
  
  I am hoping toget into the GSK Braf & Mek trial too.
  
  You mentioned in a previous post that Eric was getting acne. Is there a cream or something that he get to make the acne go away eventually???
  
  Also, are there anymore or other side effects that you were told that Eric might get and how are the side effects treated???
  
  Thank you for answer myquestions…by you sharing info about the trial does not make it as scary as it is. What dosage is Eric get of Braf & Mek??
  
  Take care..& thinking positive thoughts & prayers for continued response
  
  Jan
  - February 13, 2011 at 4:03 am
    
    Quote
    EricNJill
    Participant
    
    Other more common side effects are rash (sometimes severe), diarrhea, and joint pain. There can be other complications with your heart so you are checked regularly with an EKG and an ECG. They also monitor your skin because you can get some squirmous cell skin lesions. It also can cause some problems with your vision so they have your eyes checked as well. But let me say this, don't let any of these concern you….If you read the side effects of most medications you are currently taking you'd be surprised at all the side effects listed. Eric said he'd take this treatment over the others he's done in the past any day! It truly is a mild treatment as far as side effects go.
    
    They did prescribe him antibiotic gel to put on his acne and it seems to be helping.
    
    We were told that most side effects will show up during the 2nd week and disappear around the 6th week. He woke up with the acne on the 14th day!
    
    Thank you all for the well wishes. After 2 years of non-stop treatments with progression this has truly been a miracle for Eric. We know that BRAF treatments can be short term so we are praying that the MEK inhibitor will keep the gene from mutating.
    
    This was our last hope, really. Eric was doing so poorly. He was in so much pain and was starting to have breathing problems. We were having such a hard time keeping up with the bandaging. It took two 6inch x 6inch bandages just to cover the large tumor. The tumors were seeping so bad that we were having a hard time containing it. If this treatment wouldn't have worked, I'd hate to think where Eric would be right now.
    
    If you remember I posted a long time ago about having Hospice care during a clinical trial. They had no problems with Eric having Hospice Care. It has been a blessing! He still is under their care for palliative care.
    
    Thanks again for all the well wishes! JillNEric in OH
  - February 13, 2011 at 4:03 am
    
    Quote
    EricNJill
    Participant
    
    Other more common side effects are rash (sometimes severe), diarrhea, and joint pain. There can be other complications with your heart so you are checked regularly with an EKG and an ECG. They also monitor your skin because you can get some squirmous cell skin lesions. It also can cause some problems with your vision so they have your eyes checked as well. But let me say this, don't let any of these concern you….If you read the side effects of most medications you are currently taking you'd be surprised at all the side effects listed. Eric said he'd take this treatment over the others he's done in the past any day! It truly is a mild treatment as far as side effects go.
    
    They did prescribe him antibiotic gel to put on his acne and it seems to be helping.
    
    We were told that most side effects will show up during the 2nd week and disappear around the 6th week. He woke up with the acne on the 14th day!
    
    Thank you all for the well wishes. After 2 years of non-stop treatments with progression this has truly been a miracle for Eric. We know that BRAF treatments can be short term so we are praying that the MEK inhibitor will keep the gene from mutating.
    
    This was our last hope, really. Eric was doing so poorly. He was in so much pain and was starting to have breathing problems. We were having such a hard time keeping up with the bandaging. It took two 6inch x 6inch bandages just to cover the large tumor. The tumors were seeping so bad that we were having a hard time containing it. If this treatment wouldn't have worked, I'd hate to think where Eric would be right now.
    
    If you remember I posted a long time ago about having Hospice care during a clinical trial. They had no problems with Eric having Hospice Care. It has been a blessing! He still is under their care for palliative care.
    
    Thanks again for all the well wishes! JillNEric in OH
  - February 13, 2011 at 4:05 am
    
    Quote
    EricNJill
    Participant
    
    Oops, forgot dosage. BRAF Inhibitor is 300 mg/day & MEK Inhibitor is 2 mg/day
  - February 13, 2011 at 4:05 am
    
    Quote
    EricNJill
    Participant
    
    Oops, forgot dosage. BRAF Inhibitor is 300 mg/day & MEK Inhibitor is 2 mg/day
- - February 13, 2011 at 12:54 am
  - Quote
  tennisgirl
  Participant
  This is so encouraging! I start GSK BRAF/MEK next week. After I saw your post, I wanted to sing all day. I've got some nasty looking tumors coming out of my leg, also, not as bad as Eric's. I've been following your story on here but don't post much. Please keep us updated, Jill. Our best days are in front of us!
  
  Marian
- - February 13, 2011 at 12:54 am
  - Quote
  tennisgirl
  Participant
  This is so encouraging! I start GSK BRAF/MEK next week. After I saw your post, I wanted to sing all day. I've got some nasty looking tumors coming out of my leg, also, not as bad as Eric's. I've been following your story on here but don't post much. Please keep us updated, Jill. Our best days are in front of us!
  
  Marian
- - February 13, 2011 at 6:02 am
  - Quote
  James from Sydney
  Participant
  Wow, Eric must be so relieved to finally see something working, great idea posting the pics, i look forward to seeing the next one!, Lots of positive energy and love from Oz to you guys
  
  best wishes
  
  James
- - February 13, 2011 at 6:02 am
  - Quote
  James from Sydney
  Participant
  Wow, Eric must be so relieved to finally see something working, great idea posting the pics, i look forward to seeing the next one!, Lots of positive energy and love from Oz to you guys
  
  best wishes
  
  James
- - February 13, 2011 at 2:38 pm
  - Quote
  jenniperry
  Participant
  So exciting Jill and Eric!!! Glad you followed your gut and did the brain first. Trust your instinct. Love you guys! Still praying.
- - February 13, 2011 at 2:38 pm
  - Quote
  jenniperry
  Participant
  So exciting Jill and Eric!!! Glad you followed your gut and did the brain first. Trust your instinct. Love you guys! Still praying.
  - February 13, 2011 at 3:45 pm
    
    Quote
    Laurie from maine
    Participant
    
    How Wonderful for such a response in such a short time. You must be so excited! thank you for posting, keep us posted on your continued good news!!
    
    laurie
  - February 13, 2011 at 3:45 pm
    
    Quote
    Laurie from maine
    Participant
    
    How Wonderful for such a response in such a short time. You must be so excited! thank you for posting, keep us posted on your continued good news!!
    
    laurie
- - February 13, 2011 at 6:30 pm
  - Quote
  JerryfromFauq
  Participant
  Soo HAPPY for both of you! Do have an idea how you are feeling. Thinking of you boh.
- - February 13, 2011 at 6:30 pm
  - Quote
  JerryfromFauq
  Participant
  Soo HAPPY for both of you! Do have an idea how you are feeling. Thinking of you boh.
- - February 14, 2011 at 1:25 am
  - Quote
  Jaime.30
  Participant
  This is wonderful!! Happy for you and your husband!
- - February 14, 2011 at 1:25 am
  - Quote
  Jaime.30
  Participant
  This is wonderful!! Happy for you and your husband!
- - February 14, 2011 at 2:39 am
  - Quote
  JakeinNY
  Participant
  Congratulations Jill and Eric. Wishing you both all the best.
- - February 14, 2011 at 2:39 am
  - Quote
  JakeinNY
  Participant
  Congratulations Jill and Eric. Wishing you both all the best.
- - February 14, 2011 at 5:23 pm
  - Quote
  Sherron
  Participant
  Jill, I am truly amazed how much smaller Eric's tumors look. I think you may have got your miracle. I pray that is so. I am very happy for the both of you..
  
  Take Care,
  
  Sherron, wife to Jim FOREVER (angel)
- - February 14, 2011 at 5:23 pm
  - Quote
  Sherron
  Participant
  Jill, I am truly amazed how much smaller Eric's tumors look. I think you may have got your miracle. I pray that is so. I am very happy for the both of you..
  
  Take Care,
  
  Sherron, wife to Jim FOREVER (angel)
- - February 14, 2011 at 7:44 pm
  - Quote
  Suzan AB
  Participant
  For Jill and Eric…
  
  Wonderful, Wonderful…how do you spell Wonderful…WONDERFUL!!! I am so excited for you both! What a wonderful Valentine Day surprise!!! It is my 18th Wedding Anniversary and with this great news we will be Doing the "Happy Dance".
  
  "We will Dance A "Happy Dance" with rings on our fingers and bells on our toes for You Both on this WONDERFUL Day!"
  
  Then we will Dance A "Happy Dance" for us Too!
  
  Today looks like a Red and Purple Day!!! With a splash of Mellow-Yellow.
  
  Hopefully, I will be on the Braf/MEK test too…very soon for some bothersome lung mets….
  
  Great News…Thank you for sharing Jill!
  
  My best to you and yours!
  
  Suzan AB
  
  Frickin' Stage IV…A Warriorist Battling the Beast, in Red 6" High Heels!!!
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
  - February 14, 2011 at 8:50 pm
    
    Quote
    cherimichele
    Participant
    
    OMG Jill,
    
    i have been thinking of you guys… and wondering how Eric was faring..
    
    this is AMAZING… i cannot believe the results he is getting.. you can just see the tumors dying and in only 2 weeks??
    
    you must be just over the moon in happiness…
    
    keep going… things are looking good!!! i bet Eric is feeling so much better…
    
    those tumors look very painful… poor darling..
    
    xxx
- - February 14, 2011 at 7:44 pm
  - Quote
  Suzan AB
  Participant
  For Jill and Eric…
  
  Wonderful, Wonderful…how do you spell Wonderful…WONDERFUL!!! I am so excited for you both! What a wonderful Valentine Day surprise!!! It is my 18th Wedding Anniversary and with this great news we will be Doing the "Happy Dance".
  
  "We will Dance A "Happy Dance" with rings on our fingers and bells on our toes for You Both on this WONDERFUL Day!"
  
  Then we will Dance A "Happy Dance" for us Too!
  
  Today looks like a Red and Purple Day!!! With a splash of Mellow-Yellow.
  
  Hopefully, I will be on the Braf/MEK test too…very soon for some bothersome lung mets….
  
  Great News…Thank you for sharing Jill!
  
  My best to you and yours!
  
  Suzan AB
  
  Frickin' Stage IV…A Warriorist Battling the Beast, in Red 6" High Heels!!!
- - February 14, 2011 at 9:35 pm
  - Quote
  Bonnie Lea
  Participant
  I am truly thrilled to see the results. A picture to me is worth a zillion words. To actually see the massive changes that occured, to know thrat something is working and how it is actually shrinking away.
  
  thankyou both for doing this. I am humbled
  
  Love Bonnie Lea
  - February 15, 2011 at 6:09 pm
    
    Quote
    Terra
    Participant
    
    I hope we continue to hear positive news for Eric and you are doing a wonderful job supporting him.
  - February 15, 2011 at 6:09 pm
    
    Quote
    Terra
    Participant
    
    I hope we continue to hear positive news for Eric and you are doing a wonderful job supporting him.
- - February 14, 2011 at 9:35 pm
  - Quote
  Bonnie Lea
  Participant
  I am truly thrilled to see the results. A picture to me is worth a zillion words. To actually see the massive changes that occured, to know thrat something is working and how it is actually shrinking away.
  
  thankyou both for doing this. I am humbled
  
  Love Bonnie Lea
- - May 17, 2012 at 2:21 pm
  - Quote
  applewhitegroup
  Participant
  Hi,
  
  I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.
  
  http://www.melanoma.org/community/douglas-applewhite
  
  We heard about BRAF but my dad never made it in time…
  
  I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?
- - May 17, 2012 at 2:21 pm
  - Quote
  applewhitegroup
  Participant
  Hi,
  
  I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.
  
  http://www.melanoma.org/community/douglas-applewhite
  
  We heard about BRAF but my dad never made it in time…
  
  I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?
- - May 17, 2012 at 2:21 pm
  - Quote
  applewhitegroup
  Participant
  Hi,
  
  I hate to pry. I hope Eric is still doing well. I have not seen a response since 2011…I am afraid of the worse. My father just died a few months ago.
  
  http://www.melanoma.org/community/douglas-applewhite
  
  We heard about BRAF but my dad never made it in time…
  
  I am not dwelling on the past but cant help but wonder what if. Did it work? For how long?