Brain Mets Shrinking

This topic has 33 replies, 5 voices, and was last updated 11 years ago by kellygrl.

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- April 21, 2014 at 10:07 pm
- Quote
kellygrl
Participant
My husband was diagnosed with brain mets 3/12, had WBR, tolerated well, but tumors did not respond. He got 14 good months out of Zelboraf, tolerated well… then Zel quit 9/14. Gamma Knife in Aug 9/14, tumors responded. Has been on Dabrafenib/Trametinib combo since 11/14, recently added Yervoy to the mix & has had 2 infusions so far. A second Gamma in Feb and results today from all of the above…. brain mets shrinking and some necrosis from gamma! Most likely a third gamma in a few mos to get remaining tumors.

Keep that Positive Mind and Attitude!!
Stay Strong and prayers sure don’t hurt either. 🙂

Kelly

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- - April 22, 2014 at 7:19 am
  - Quote
  Johnfdc7
  Participant
  Hi Kelly
  
  Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?
  
  I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.
  
  Thanks
- - April 22, 2014 at 7:19 am
  - Quote
  Johnfdc7
  Participant
  Hi Kelly
  
  Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?
  
  I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.
  
  Thanks
  - April 22, 2014 at 8:29 am
    
    Quote
    tcell
    Participant
    
    Hi John,
    
    that was also something I thought of right away as if this worked this would be a great option for many, many people who have to wait and see how long the inhibitors do their job and only then can start Yervoy (after a waiting time to wash out the inhibitors ???). Then again it can take several months until Yervoy kicks in or it does not at all…
  - April 22, 2014 at 8:29 am
    
    Quote
    tcell
    Participant
    
    Hi John,
    
    that was also something I thought of right away as if this worked this would be a great option for many, many people who have to wait and see how long the inhibitors do their job and only then can start Yervoy (after a waiting time to wash out the inhibitors ???). Then again it can take several months until Yervoy kicks in or it does not at all…
  - April 22, 2014 at 8:29 am
    
    Quote
    tcell
    Participant
    
    Hi John,
    
    that was also something I thought of right away as if this worked this would be a great option for many, many people who have to wait and see how long the inhibitors do their job and only then can start Yervoy (after a waiting time to wash out the inhibitors ???). Then again it can take several months until Yervoy kicks in or it does not at all…
  - April 22, 2014 at 11:21 am
    
    Quote
    kellygrl
    Participant
    
    Yep, same time! He was going in weekly for labs, so far so good! Only time he had trouble with liver enzymes was after a month on Zel, off for a few wks, low dose, then went back on full dose. He drinks almost a gallon of water a day and we try to have him eat pretty clean… so who knows, but his system tolerated this dual treatment.
  - April 22, 2014 at 11:21 am
    
    Quote
    kellygrl
    Participant
    
    Yep, same time! He was going in weekly for labs, so far so good! Only time he had trouble with liver enzymes was after a month on Zel, off for a few wks, low dose, then went back on full dose. He drinks almost a gallon of water a day and we try to have him eat pretty clean… so who knows, but his system tolerated this dual treatment.
  - April 22, 2014 at 11:30 am
    
    Quote
    tcell
    Participant
    
    Congrats! I guess what really counts is that it works but it also shows that there are some specialists as well as patients out there with enough guts to do it despite negative results in trials!
    
    I wish you and your husband all the best. Hope that he continues tolerating the double treatment as well as he does now and that he reponsds to it for a long time!
  - April 22, 2014 at 11:30 am
    
    Quote
    tcell
    Participant
    
    Congrats! I guess what really counts is that it works but it also shows that there are some specialists as well as patients out there with enough guts to do it despite negative results in trials!
    
    I wish you and your husband all the best. Hope that he continues tolerating the double treatment as well as he does now and that he reponsds to it for a long time!
  - April 22, 2014 at 11:38 am
    
    Quote
    kellygrl
    Participant
    
    Thank you tcell! He is a tough cookie 😉
  - April 22, 2014 at 11:38 am
    
    Quote
    kellygrl
    Participant
    
    Thank you tcell! He is a tough cookie 😉
  - April 22, 2014 at 11:38 am
    
    Quote
    kellygrl
    Participant
    
    Thank you tcell! He is a tough cookie 😉
  - April 22, 2014 at 11:30 am
    
    Quote
    tcell
    Participant
    
    Congrats! I guess what really counts is that it works but it also shows that there are some specialists as well as patients out there with enough guts to do it despite negative results in trials!
    
    I wish you and your husband all the best. Hope that he continues tolerating the double treatment as well as he does now and that he reponsds to it for a long time!
  - April 23, 2014 at 6:42 am
    
    Quote
    Johnfdc7
    Participant
    
    Thanks Kelly
    
    That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well.
  - April 23, 2014 at 6:42 am
    
    Quote
    Johnfdc7
    Participant
    
    Thanks Kelly
    
    That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well.
  - April 23, 2014 at 6:42 am
    
    Quote
    Johnfdc7
    Participant
    
    Thanks Kelly
    
    That's really encouraging news and I hope it continues to work well for you guys. I am on the BRAF/MEK combo for the past 18 months and often thought about pushing my onc to add ipi to the mix while things are going well.
  - April 22, 2014 at 11:21 am
    
    Quote
    kellygrl
    Participant
    
    Yep, same time! He was going in weekly for labs, so far so good! Only time he had trouble with liver enzymes was after a month on Zel, off for a few wks, low dose, then went back on full dose. He drinks almost a gallon of water a day and we try to have him eat pretty clean… so who knows, but his system tolerated this dual treatment.
  - April 22, 2014 at 11:23 am
    
    Quote
    kellygrl
    Participant
    
    Hey John, see reply to comment below… was supposed to be to you. 🙂
  - April 22, 2014 at 11:23 am
    
    Quote
    kellygrl
    Participant
    
    Hey John, see reply to comment below… was supposed to be to you. 🙂
  - April 22, 2014 at 11:32 am
    
    Quote
    kellygrl
    Participant
    
    Ok, these damn replies don’t seem to be lining up with posts I want to respond too…. grrrrrrr. So, in response to tcell… EXACTLY! Melanoma specialist at Mayo recommended this path… he said “load him up with ammo, inhibitors will shrink quick and Yervoy will give him the miles” 9 tumors have been gamma’d… so that shrinkage is probably from gamma, but the other 4-5 have not been gamma’d and are shrinking as well.
  - April 22, 2014 at 11:32 am
    
    Quote
    kellygrl
    Participant
    
    Ok, these damn replies don’t seem to be lining up with posts I want to respond too…. grrrrrrr. So, in response to tcell… EXACTLY! Melanoma specialist at Mayo recommended this path… he said “load him up with ammo, inhibitors will shrink quick and Yervoy will give him the miles” 9 tumors have been gamma’d… so that shrinkage is probably from gamma, but the other 4-5 have not been gamma’d and are shrinking as well.
  - April 22, 2014 at 5:20 pm
    
    Quote
    Brendan
    Participant
    
    Hi Kelly,
    
    Great news! Just to let you know…Right after my third ipi infusion I had a massive headache from a swollen pituiatry. The headache was directly behind my eyes and it was really painful. This does not happen to everyone, but I know that there are others on this board who have had the same experience. Since your husband has brain mets he is probably extra aware of any senations in his brain … just a heads-up. My med onc sent me to an endocrinologist and steroids helped out immediately.
    
    Good luck.
    
    Brendan
  - April 22, 2014 at 5:20 pm
    
    Quote
    Brendan
    Participant
    
    Hi Kelly,
    
    Great news! Just to let you know…Right after my third ipi infusion I had a massive headache from a swollen pituiatry. The headache was directly behind my eyes and it was really painful. This does not happen to everyone, but I know that there are others on this board who have had the same experience. Since your husband has brain mets he is probably extra aware of any senations in his brain … just a heads-up. My med onc sent me to an endocrinologist and steroids helped out immediately.
    
    Good luck.
    
    Brendan
  - April 22, 2014 at 9:31 pm
    
    Quote
    BrianP
    Participant
    
    Hey Kelly,
    
    Ditto to what Brendan says. Seems like the third infusion is the start up point for many folks who get the pituitary inflamation. Mine started with what felt like a mild sinus headache and gradually got worse over a couple weeks. Good luck to you guys. I really admire how you guys are attacking this thing.
    
    Brian
  - April 22, 2014 at 9:31 pm
    
    Quote
    BrianP
    Participant
    
    Hey Kelly,
    
    Ditto to what Brendan says. Seems like the third infusion is the start up point for many folks who get the pituitary inflamation. Mine started with what felt like a mild sinus headache and gradually got worse over a couple weeks. Good luck to you guys. I really admire how you guys are attacking this thing.
    
    Brian
  - April 22, 2014 at 9:31 pm
    
    Quote
    BrianP
    Participant
    
    Hey Kelly,
    
    Ditto to what Brendan says. Seems like the third infusion is the start up point for many folks who get the pituitary inflamation. Mine started with what felt like a mild sinus headache and gradually got worse over a couple weeks. Good luck to you guys. I really admire how you guys are attacking this thing.
    
    Brian
  - April 25, 2014 at 1:54 pm
    
    Quote
    kellygrl
    Participant
    
    Thanks for the heads up!! You are correct about being extra aware… that may have been a slight freak out moment had we not been forewarned. Thank You & beat of luck to you as well.
  - April 25, 2014 at 1:54 pm
    
    Quote
    kellygrl
    Participant
    
    Thanks for the heads up!! You are correct about being extra aware… that may have been a slight freak out moment had we not been forewarned. Thank You & beat of luck to you as well.
  - April 25, 2014 at 1:54 pm
    
    Quote
    kellygrl
    Participant
    
    Thanks for the heads up!! You are correct about being extra aware… that may have been a slight freak out moment had we not been forewarned. Thank You & beat of luck to you as well.
  - April 22, 2014 at 5:20 pm
    
    Quote
    Brendan
    Participant
    
    Hi Kelly,
    
    Great news! Just to let you know…Right after my third ipi infusion I had a massive headache from a swollen pituiatry. The headache was directly behind my eyes and it was really painful. This does not happen to everyone, but I know that there are others on this board who have had the same experience. Since your husband has brain mets he is probably extra aware of any senations in his brain … just a heads-up. My med onc sent me to an endocrinologist and steroids helped out immediately.
    
    Good luck.
    
    Brendan
  - April 22, 2014 at 11:32 am
    
    Quote
    kellygrl
    Participant
    
    Ok, these damn replies don’t seem to be lining up with posts I want to respond too…. grrrrrrr. So, in response to tcell… EXACTLY! Melanoma specialist at Mayo recommended this path… he said “load him up with ammo, inhibitors will shrink quick and Yervoy will give him the miles” 9 tumors have been gamma’d… so that shrinkage is probably from gamma, but the other 4-5 have not been gamma’d and are shrinking as well.
  - April 22, 2014 at 11:23 am
    
    Quote
    kellygrl
    Participant
    
    Hey John, see reply to comment below… was supposed to be to you. 🙂
- - April 22, 2014 at 7:19 am
  - Quote
  Johnfdc7
  Participant
  Hi Kelly
  
  Is your husband on Yervoy and taking the combo drugs at the same time? If so, how is his bloodwork? Is his liver tolerating all these drugs together?
  
  I had read that a clinical trial looking at using Yervoy and Zelboraf together had been stopped due to liver toxicity issues so it would be interesting if the combination of drugs that your husband is on appears to be less toxic.
  
  Thanks

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