Tafinlar-Mekinist Combo and My 8 Week Results

This topic has 42 replies, 10 voices, and was last updated 10 years, 7 months ago by Mat.

Post

- October 5, 2013 at 12:08 pm
- Quote
Mat
Participant
Hi Everyone,

Following a Stage IV diagnosis in July, and in light of a heavy tumor burden (particularly in liver), I started on the GSK combo at the beginning of August. Within several days I felt great and, within a few weeks, my labs were normal. For example, at one point in July my LDH was 600–now it is around 150. Yesterday, I had my 8 week scans. While I don't yet have copies of the reports, the rough stats are that my tumors have reduced in size in the range of 50% (liver) to 70% (abdomen)–and no "new" tumors. Some small tumors (e.g., lung nodules) have even disappeared. Also, a brain met that I had gamma-knifed in mid-August has disappeared (it had also shown reduction in size from the GSK combo previously). Amazing drug combo when (and while) it works.

Separately, thanks again for all of your informative and insightful posts. I've learned so much about treatment options (for later) from your posts.

Mat

Viewing 17 reply threads

Replies

- - October 5, 2013 at 12:43 pm
  - Quote
  Linny
  Participant
  Congratulations! That is ASTOUNDING!!! I am so very happy for you. Let's hope this works for you long-term. You need to go out and celebrate this. There's nothing in the cards that says you can't be another Dick_K.
- - October 5, 2013 at 12:43 pm
  - Quote
  Linny
  Participant
  Congratulations! That is ASTOUNDING!!! I am so very happy for you. Let's hope this works for you long-term. You need to go out and celebrate this. There's nothing in the cards that says you can't be another Dick_K.
- - October 5, 2013 at 12:43 pm
  - Quote
  Linny
  Participant
  Congratulations! That is ASTOUNDING!!! I am so very happy for you. Let's hope this works for you long-term. You need to go out and celebrate this. There's nothing in the cards that says you can't be another Dick_K.
- - October 5, 2013 at 2:55 pm
  - Quote
  JoshF
  Participant
  Mat-
  
  Great news! I’m glad to hear this and that you’re doing well! Does the combo have ability to be a durable response or is it limited? I’m praying its durable and continues. All the best!
  
  Josh
  - October 5, 2013 at 4:04 pm
    
    Quote
    Mat
    Participant
    
    Thanks Josh. I hope you do well on your trial. The BRAF, etc. inhibitors are bridge treatments, i.e., in most cases, the cancer figures out an alternative path–eventually. There are some outliers who have been on the treatment for many years (the median for the GSK combo is around 10 months or so). Of course, during these years, alternative treatments become available, so buying time is very valuable. In my case, I had no choice but to start with the inhibitors based on my tumor burden. If one's circumstances are better I think the prevailing view is to start with immunotherapy–as you are doing.
  - October 5, 2013 at 4:04 pm
    
    Quote
    Mat
    Participant
    
    Thanks Josh. I hope you do well on your trial. The BRAF, etc. inhibitors are bridge treatments, i.e., in most cases, the cancer figures out an alternative path–eventually. There are some outliers who have been on the treatment for many years (the median for the GSK combo is around 10 months or so). Of course, during these years, alternative treatments become available, so buying time is very valuable. In my case, I had no choice but to start with the inhibitors based on my tumor burden. If one's circumstances are better I think the prevailing view is to start with immunotherapy–as you are doing.
  - October 5, 2013 at 4:04 pm
    
    Quote
    Mat
    Participant
    
    Thanks Josh. I hope you do well on your trial. The BRAF, etc. inhibitors are bridge treatments, i.e., in most cases, the cancer figures out an alternative path–eventually. There are some outliers who have been on the treatment for many years (the median for the GSK combo is around 10 months or so). Of course, during these years, alternative treatments become available, so buying time is very valuable. In my case, I had no choice but to start with the inhibitors based on my tumor burden. If one's circumstances are better I think the prevailing view is to start with immunotherapy–as you are doing.
  - October 5, 2013 at 4:29 pm
    
    Quote
    G-Samsa
    Participant
    
    Hi Matt—Glad to hear that you have responded so well to this combination treatment. I am curious to know whether there are any plans to introduce an immunotherapy treatment before the targeted BRAF treatment loses effectiveness—or does one ride this out as long as it keeps things in check? My Stage IV is similarly in check at 50% tumor burden through an ipi/nivo combo trial (maintenance phase now). My doctors (forever optimistic) feel my trained immune system will continue to maintain the stand-off at this level indefinately. Don't know how realistic that is, but I'm buying it for now. I wonder sometimes if I were not on a trial that was providing feedback to the drug companies whether there would be an interest in going after the Mel with something else–while it is in retreat– and whether it's the new variable and the complication it presents to researchers that becomes an overriding factor.
  - October 5, 2013 at 4:29 pm
    
    Quote
    G-Samsa
    Participant
    
    Hi Matt—Glad to hear that you have responded so well to this combination treatment. I am curious to know whether there are any plans to introduce an immunotherapy treatment before the targeted BRAF treatment loses effectiveness—or does one ride this out as long as it keeps things in check? My Stage IV is similarly in check at 50% tumor burden through an ipi/nivo combo trial (maintenance phase now). My doctors (forever optimistic) feel my trained immune system will continue to maintain the stand-off at this level indefinately. Don't know how realistic that is, but I'm buying it for now. I wonder sometimes if I were not on a trial that was providing feedback to the drug companies whether there would be an interest in going after the Mel with something else–while it is in retreat– and whether it's the new variable and the complication it presents to researchers that becomes an overriding factor.
  - October 5, 2013 at 5:51 pm
    
    Quote
    POW
    Participant
    
    Once both Zelboraf and Yervoy were FDA approved, one of the first things they did was a clinical trial combining them. The combination proved to be highly toxic to about 1/3 of the patients so the trial was ended early. I read where Prometheus Labs is starting a new series of clinical tirals combining their IL-2 with either ipi or with Zelboraf. That is something you might consider in the future. You can read more about those trials here: http://www.nestlehealthscience.com/newsroom/press-releases/prometheus-launches-clinical-trial
  - October 5, 2013 at 5:51 pm
    
    Quote
    POW
    Participant
    
    Once both Zelboraf and Yervoy were FDA approved, one of the first things they did was a clinical trial combining them. The combination proved to be highly toxic to about 1/3 of the patients so the trial was ended early. I read where Prometheus Labs is starting a new series of clinical tirals combining their IL-2 with either ipi or with Zelboraf. That is something you might consider in the future. You can read more about those trials here: http://www.nestlehealthscience.com/newsroom/press-releases/prometheus-launches-clinical-trial
  - October 5, 2013 at 5:51 pm
    
    Quote
    POW
    Participant
    
    Once both Zelboraf and Yervoy were FDA approved, one of the first things they did was a clinical trial combining them. The combination proved to be highly toxic to about 1/3 of the patients so the trial was ended early. I read where Prometheus Labs is starting a new series of clinical tirals combining their IL-2 with either ipi or with Zelboraf. That is something you might consider in the future. You can read more about those trials here: http://www.nestlehealthscience.com/newsroom/press-releases/prometheus-launches-clinical-trial
  - October 5, 2013 at 7:30 pm
    
    Quote
    Mat
    Participant
    
    I’ve had initial discussions on that topic. One challenge is that many trials require that you’ve failed your prior treatment or have progressive disease. At this point, for me, I need more reduction before I can consider changing course.
  - October 5, 2013 at 7:30 pm
    
    Quote
    Mat
    Participant
    
    I’ve had initial discussions on that topic. One challenge is that many trials require that you’ve failed your prior treatment or have progressive disease. At this point, for me, I need more reduction before I can consider changing course.
  - October 5, 2013 at 7:30 pm
    
    Quote
    Mat
    Participant
    
    I’ve had initial discussions on that topic. One challenge is that many trials require that you’ve failed your prior treatment or have progressive disease. At this point, for me, I need more reduction before I can consider changing course.
  - October 5, 2013 at 4:29 pm
    
    Quote
    G-Samsa
    Participant
    
    Hi Matt—Glad to hear that you have responded so well to this combination treatment. I am curious to know whether there are any plans to introduce an immunotherapy treatment before the targeted BRAF treatment loses effectiveness—or does one ride this out as long as it keeps things in check? My Stage IV is similarly in check at 50% tumor burden through an ipi/nivo combo trial (maintenance phase now). My doctors (forever optimistic) feel my trained immune system will continue to maintain the stand-off at this level indefinately. Don't know how realistic that is, but I'm buying it for now. I wonder sometimes if I were not on a trial that was providing feedback to the drug companies whether there would be an interest in going after the Mel with something else–while it is in retreat– and whether it's the new variable and the complication it presents to researchers that becomes an overriding factor.
  - October 11, 2013 at 6:27 pm
    
    Quote
    caroline88
    Participant
    
    Hi Mat – Your post has been incredibly useful and important. My father was diagnosed with Stage IV Melanoma this past August. He has gone through 1 round of chemo and 2 rounds of raditation (currently in 2nd round). He has tumors throughout body. He is starting Mekinist this Monday for 8 weeks. We are thrilled. Can you let me know if youre on a specific diet with the medication and if there is anything your doctors told you to not take as it could conflict with the drug? Lastly – what is your doctor's current strategy after Mekinist? Or are you continuing to take the drug? Thanks so much!!
  - October 11, 2013 at 6:27 pm
    
    Quote
    caroline88
    Participant
    
    Hi Mat – Your post has been incredibly useful and important. My father was diagnosed with Stage IV Melanoma this past August. He has gone through 1 round of chemo and 2 rounds of raditation (currently in 2nd round). He has tumors throughout body. He is starting Mekinist this Monday for 8 weeks. We are thrilled. Can you let me know if youre on a specific diet with the medication and if there is anything your doctors told you to not take as it could conflict with the drug? Lastly – what is your doctor's current strategy after Mekinist? Or are you continuing to take the drug? Thanks so much!!
  - October 11, 2013 at 6:27 pm
    
    Quote
    caroline88
    Participant
    
    Hi Mat – Your post has been incredibly useful and important. My father was diagnosed with Stage IV Melanoma this past August. He has gone through 1 round of chemo and 2 rounds of raditation (currently in 2nd round). He has tumors throughout body. He is starting Mekinist this Monday for 8 weeks. We are thrilled. Can you let me know if youre on a specific diet with the medication and if there is anything your doctors told you to not take as it could conflict with the drug? Lastly – what is your doctor's current strategy after Mekinist? Or are you continuing to take the drug? Thanks so much!!
  - October 14, 2013 at 3:39 am
    
    Quote
    Mat
    Participant
    
    Thanks Shannon. I responded to your email, but will summarize for the group:
    1. No special diet.
    2. Can’t comment on drug conflicts-I’m not (and haven’t been) on any meds other than the GSK combo and occasional Advil.
    3. See my prior post on this thread re: next steps. I’m pushing for an eventual change in course, but I still need to work on my tumor burden with the GSK combo. So, for me, the discussions are very preliminary.
  - October 14, 2013 at 3:39 am
    
    Quote
    Mat
    Participant
    
    Thanks Shannon. I responded to your email, but will summarize for the group:
    1. No special diet.
    2. Can’t comment on drug conflicts-I’m not (and haven’t been) on any meds other than the GSK combo and occasional Advil.
    3. See my prior post on this thread re: next steps. I’m pushing for an eventual change in course, but I still need to work on my tumor burden with the GSK combo. So, for me, the discussions are very preliminary.
  - October 14, 2013 at 3:39 am
    
    Quote
    Mat
    Participant
    
    Thanks Shannon. I responded to your email, but will summarize for the group:
    1. No special diet.
    2. Can’t comment on drug conflicts-I’m not (and haven’t been) on any meds other than the GSK combo and occasional Advil.
    3. See my prior post on this thread re: next steps. I’m pushing for an eventual change in course, but I still need to work on my tumor burden with the GSK combo. So, for me, the discussions are very preliminary.
- - October 5, 2013 at 2:55 pm
  - Quote
  JoshF
  Participant
  Mat-
  
  Great news! I’m glad to hear this and that you’re doing well! Does the combo have ability to be a durable response or is it limited? I’m praying its durable and continues. All the best!
  
  Josh
- - October 5, 2013 at 2:55 pm
  - Quote
  JoshF
  Participant
  Mat-
  
  Great news! I’m glad to hear this and that you’re doing well! Does the combo have ability to be a durable response or is it limited? I’m praying its durable and continues. All the best!
  
  Josh
- - October 5, 2013 at 11:57 pm
  - Quote
  JerryfromFauq
  Participant
  Love to hear of quick responders. You are correct according to most Onco's I have read. Most recommend immunology if the tumor load is low enough so that one has more time (especially for Ipi) or for a targeted chemo if one has a large highly aggressive tumor load. Keep those numbers going down!
  
  Hope for continued action, but you are correct to have a standby plan, just in case.
- - October 5, 2013 at 11:57 pm
  - Quote
  JerryfromFauq
  Participant
  Love to hear of quick responders. You are correct according to most Onco's I have read. Most recommend immunology if the tumor load is low enough so that one has more time (especially for Ipi) or for a targeted chemo if one has a large highly aggressive tumor load. Keep those numbers going down!
  
  Hope for continued action, but you are correct to have a standby plan, just in case.
- - October 5, 2013 at 11:57 pm
  - Quote
  JerryfromFauq
  Participant
  Love to hear of quick responders. You are correct according to most Onco's I have read. Most recommend immunology if the tumor load is low enough so that one has more time (especially for Ipi) or for a targeted chemo if one has a large highly aggressive tumor load. Keep those numbers going down!
  
  Hope for continued action, but you are correct to have a standby plan, just in case.
- - October 6, 2013 at 10:00 am
  - Quote
  GAngel
  Participant
  Oh Mat, I am so happy for you and your family! It HAD to work for you and it IS working! Your situation is so similar to my husbands. We have to believe that the combo will get us to the treatment that will ultimately cure this cancer, and why shouldn't we?! Like you stated, there are patients who have been on this combo for years and still responding, so why not you, my husband and the others presently counting on this treatment?! Keep fighting and keep believing!
  
  Praying for your continued success! God Bless you!
  
  Gina
- - October 6, 2013 at 10:00 am
  - Quote
  GAngel
  Participant
  Oh Mat, I am so happy for you and your family! It HAD to work for you and it IS working! Your situation is so similar to my husbands. We have to believe that the combo will get us to the treatment that will ultimately cure this cancer, and why shouldn't we?! Like you stated, there are patients who have been on this combo for years and still responding, so why not you, my husband and the others presently counting on this treatment?! Keep fighting and keep believing!
  
  Praying for your continued success! God Bless you!
  
  Gina
- - October 6, 2013 at 10:00 am
  - Quote
  GAngel
  Participant
  Oh Mat, I am so happy for you and your family! It HAD to work for you and it IS working! Your situation is so similar to my husbands. We have to believe that the combo will get us to the treatment that will ultimately cure this cancer, and why shouldn't we?! Like you stated, there are patients who have been on this combo for years and still responding, so why not you, my husband and the others presently counting on this treatment?! Keep fighting and keep believing!
  
  Praying for your continued success! God Bless you!
  
  Gina
- - October 8, 2013 at 4:15 pm
  - Quote
  maor
  Participant
  Hi evry body,
  
  I'm from Israel and i'm very happy to hear about the combo with Mekinist!!!
  
  In Israel we can't buy Mekinist yet.
  
  My mam have Metastatic melanoma in the brain and she use with Zelboraf.
  
  Her Prop' propose us use combo Zelboraf with Mekinist.
  
  Im search any body that interested help us to get Mekinist.
  
  We wont to buy/Obtain directe from patient that use it.
  
  TNX evry body,
  
  Maor
  
  Email: [email protected]
- - October 8, 2013 at 4:15 pm
  - Quote
  maor
  Participant
  Hi evry body,
  
  I'm from Israel and i'm very happy to hear about the combo with Mekinist!!!
  
  In Israel we can't buy Mekinist yet.
  
  My mam have Metastatic melanoma in the brain and she use with Zelboraf.
  
  Her Prop' propose us use combo Zelboraf with Mekinist.
  
  Im search any body that interested help us to get Mekinist.
  
  We wont to buy/Obtain directe from patient that use it.
  
  TNX evry body,
  
  Maor
  
  Email: [email protected]
- - October 8, 2013 at 4:15 pm
  - Quote
  maor
  Participant
  Hi evry body,
  
  I'm from Israel and i'm very happy to hear about the combo with Mekinist!!!
  
  In Israel we can't buy Mekinist yet.
  
  My mam have Metastatic melanoma in the brain and she use with Zelboraf.
  
  Her Prop' propose us use combo Zelboraf with Mekinist.
  
  Im search any body that interested help us to get Mekinist.
  
  We wont to buy/Obtain directe from patient that use it.
  
  TNX evry body,
  
  Maor
  
  Email: [email protected]
- - October 11, 2013 at 2:07 am
  - Quote
  john partrick michael murphy
  Participant
  I am almost 34 months in BRAF / MEK as developed by GSK. I don’t care that this combo is considered a bridge to better treatments to come. I don’t know how it could be bettered. Had a few side affects that reminded me of hangovers, except you can remember everything and you still have your money. It has been over a year and a half since my last reaction. You all keep your hope which brings strength, which brings more hope, which brings more strength, in a wonderful loop.
- - October 11, 2013 at 2:07 am
  - Quote
  john partrick michael murphy
  Participant
  I am almost 34 months in BRAF / MEK as developed by GSK. I don’t care that this combo is considered a bridge to better treatments to come. I don’t know how it could be bettered. Had a few side affects that reminded me of hangovers, except you can remember everything and you still have your money. It has been over a year and a half since my last reaction. You all keep your hope which brings strength, which brings more hope, which brings more strength, in a wonderful loop.
- - October 11, 2013 at 2:07 am
  - Quote
  john partrick michael murphy
  Participant
  I am almost 34 months in BRAF / MEK as developed by GSK. I don’t care that this combo is considered a bridge to better treatments to come. I don’t know how it could be bettered. Had a few side affects that reminded me of hangovers, except you can remember everything and you still have your money. It has been over a year and a half since my last reaction. You all keep your hope which brings strength, which brings more hope, which brings more strength, in a wonderful loop.
  - October 11, 2013 at 6:38 pm
    
    Quote
    caroline88
    Participant
    
    One more question – I was prescribed just Mekinist and not the combo. Have you heard of results with just Mekinist? Should I push for the combo with Tafinlar from my doc? Thank you so much!
  - October 14, 2013 at 3:33 am
    
    Quote
    Mat
    Participant
    
    The combo is supposed to be longer acting and have less side effects than either drug alone. In my case, thankfully, I’ve had few side effects, all of which have been manageable.
  - October 14, 2013 at 3:33 am
    
    Quote
    Mat
    Participant
    
    The combo is supposed to be longer acting and have less side effects than either drug alone. In my case, thankfully, I’ve had few side effects, all of which have been manageable.
  - October 14, 2013 at 3:33 am
    
    Quote
    Mat
    Participant
    
    The combo is supposed to be longer acting and have less side effects than either drug alone. In my case, thankfully, I’ve had few side effects, all of which have been manageable.
  - October 11, 2013 at 6:38 pm
    
    Quote
    caroline88
    Participant
    
    One more question – I was prescribed just Mekinist and not the combo. Have you heard of results with just Mekinist? Should I push for the combo with Tafinlar from my doc? Thank you so much!
  - October 11, 2013 at 6:38 pm
    
    Quote
    caroline88
    Participant
    
    One more question – I was prescribed just Mekinist and not the combo. Have you heard of results with just Mekinist? Should I push for the combo with Tafinlar from my doc? Thank you so much!