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Considering Zelboraf + MEK

Forums General Melanoma Community Considering Zelboraf + MEK

  • Post
    Eileen L
    Participant

    Hi, folks. I have been diagnosed Stage IV for over four years and have had remarkable success with a drug called Nexavar, which is not suppose to work at all for us. Well, my luck has seemed to run its course.  I have a tumor on my adrenal gland that was stable for three years and now has taken off. It is up to 7cm per a MRI on Saturday. Was all set to go for surgery to remove the tumor when upon examining the MRI the surgeon realized I would likely lose my kidney if she removed the tumor, since it was so near to the renal arteries.

    Hi, folks. I have been diagnosed Stage IV for over four years and have had remarkable success with a drug called Nexavar, which is not suppose to work at all for us. Well, my luck has seemed to run its course.  I have a tumor on my adrenal gland that was stable for three years and now has taken off. It is up to 7cm per a MRI on Saturday. Was all set to go for surgery to remove the tumor when upon examining the MRI the surgeon realized I would likely lose my kidney if she removed the tumor, since it was so near to the renal arteries. So, now both my oncologists (one generalist, another Melanoma specialist) have recommended trying Zelboraf to shrink the tumor.

    I am considering getting on the Genentech Phase 1b study, pairing Zelboraf with a MEK inhibitor. My Melanoma specialist, Dr. Daud at UCSF, thinks the MEK will boost the effectiveness of the Zelboraf by about 10-20%. While that sounds great, I also am without any therapy while I qualify for the trial and I am feeling like the Melanoma is going to overrun my body while I wait for the the trial to begin. I need to hold off on the Nexavar since I need to have a "wash out" period for the study. Have already been off of it for over a week in preparation for the now cancelled surgery. Since I can just start on the Zelboraf immediately if I don't wait for the trial approval, not sure what to do. Am seeing my "general" oncologist this afternoon and will discuss with him as well. Any thoughts would be greatly appreciated.

    In the meantime, I have gone from being the poster child for positive thinking, living in the moment, making the most of every day, to a crying, weepy mess. I feel hopeless and defeated. I thought that I would be sitting in a hospital bed right now recovering from a laproscopic surgery. Instead, I am sitting in uncertainty, which I know is what we Stage IV folks do all the time. I just got so use to stable scans that I was lulled into a false sense of security, that somehow I was going to dodge the bullet depite knowing that the Nexavar usually doesn't work for more than 3-5years for the cancers it is approved to treat. The fact that I got over four years of stability from a medication that wasn't even suppose to work at all is a miracle which I am finding hard to be grateful for at this time.

    Well, I guess it's time to stop the pity party. I am thankful for this board, I don't come here often, but there is always so much strenght and love here. I can use whatever encouraging words are out there. Any thoughts on whether to start the Zelboraf now or wait for the trial approval would be appreciated!

    Eileen L

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  • Replies
      lhaley
      Participant

      Eileen,

      What a difficult decision but I'm glad your Drs ended up looking at each possibility with the surgery vs systemic since the surgery was so major.  How long do you have to wait for the trial?  I know that you were already waiting quite a bit of time waiting for the schedule for the surgery.

      MEK and the b-raf drug has been known to quickly reduce the tumors.  The combo trial seems to keep people at a longer stable time then just the b-raf, also the combo doesn't seem to have as many side effects as just the b-raf drug. I know this information hasn't been proven but I am just gathering info from this board over the last 2 years discussed.  Also, you can always get out of the trial and just use the b-raf drug, you can't do the b-raf drug first and then go into the combo trial.

      These are just thoughts but hope your Doctors can give you some solid guidance.

      Linda

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      lhaley
      Participant

      Eileen,

      What a difficult decision but I'm glad your Drs ended up looking at each possibility with the surgery vs systemic since the surgery was so major.  How long do you have to wait for the trial?  I know that you were already waiting quite a bit of time waiting for the schedule for the surgery.

      MEK and the b-raf drug has been known to quickly reduce the tumors.  The combo trial seems to keep people at a longer stable time then just the b-raf, also the combo doesn't seem to have as many side effects as just the b-raf drug. I know this information hasn't been proven but I am just gathering info from this board over the last 2 years discussed.  Also, you can always get out of the trial and just use the b-raf drug, you can't do the b-raf drug first and then go into the combo trial.

      These are just thoughts but hope your Doctors can give you some solid guidance.

      Linda

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        deardad
        Participant

        Hi there,

        My father has currently just progressed on Zelboraf after 6 months and is now moving to add MEK to the mix. We too are waiting which is very unnerving knowing that the melanoma is on the move again. It will be about month before we get on the trial. Hate the wait.

        Sorry I understand the anxiety you are having (although Im not the patient).

        I suppose the good thing in all this is that it sounds like your tumor burden is low and they are having great success with the inhibitors with those with low tumor burden.

        All the best.

        Nahmi from Melbourne

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        deardad
        Participant

        Hi there,

        My father has currently just progressed on Zelboraf after 6 months and is now moving to add MEK to the mix. We too are waiting which is very unnerving knowing that the melanoma is on the move again. It will be about month before we get on the trial. Hate the wait.

        Sorry I understand the anxiety you are having (although Im not the patient).

        I suppose the good thing in all this is that it sounds like your tumor burden is low and they are having great success with the inhibitors with those with low tumor burden.

        All the best.

        Nahmi from Melbourne

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        deardad
        Participant

        Hi there,

        My father has currently just progressed on Zelboraf after 6 months and is now moving to add MEK to the mix. We too are waiting which is very unnerving knowing that the melanoma is on the move again. It will be about month before we get on the trial. Hate the wait.

        Sorry I understand the anxiety you are having (although Im not the patient).

        I suppose the good thing in all this is that it sounds like your tumor burden is low and they are having great success with the inhibitors with those with low tumor burden.

        All the best.

        Nahmi from Melbourne

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        Eileen L
        Participant

        Thanks, Linda. I so value your opinion and support. I am now awaiting word if I qualify for the trial. I was told by my Kaiser oncologist that the health plan will not pay for the trial because it is a Phase I, testing out dosing and not patient response. So now I have to do battle with my insurance company as well as the melanoma! I need to make a bunch of calls to check out what he told me, but I just met with him late Friday so now have to wait until Monday morning to rattle cages. Not what I want to be doing right now, but what has been handed to me.

        Take care, hope you are doing well after the difficult months you went through. You deseve some peaceful, NED full days!

        Warmly,

        Eileen

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        Eileen L
        Participant

        Thanks, Linda. I so value your opinion and support. I am now awaiting word if I qualify for the trial. I was told by my Kaiser oncologist that the health plan will not pay for the trial because it is a Phase I, testing out dosing and not patient response. So now I have to do battle with my insurance company as well as the melanoma! I need to make a bunch of calls to check out what he told me, but I just met with him late Friday so now have to wait until Monday morning to rattle cages. Not what I want to be doing right now, but what has been handed to me.

        Take care, hope you are doing well after the difficult months you went through. You deseve some peaceful, NED full days!

        Warmly,

        Eileen

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        Eileen L
        Participant

        Thanks, Linda. I so value your opinion and support. I am now awaiting word if I qualify for the trial. I was told by my Kaiser oncologist that the health plan will not pay for the trial because it is a Phase I, testing out dosing and not patient response. So now I have to do battle with my insurance company as well as the melanoma! I need to make a bunch of calls to check out what he told me, but I just met with him late Friday so now have to wait until Monday morning to rattle cages. Not what I want to be doing right now, but what has been handed to me.

        Take care, hope you are doing well after the difficult months you went through. You deseve some peaceful, NED full days!

        Warmly,

        Eileen

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      lhaley
      Participant

      Eileen,

      What a difficult decision but I'm glad your Drs ended up looking at each possibility with the surgery vs systemic since the surgery was so major.  How long do you have to wait for the trial?  I know that you were already waiting quite a bit of time waiting for the schedule for the surgery.

      MEK and the b-raf drug has been known to quickly reduce the tumors.  The combo trial seems to keep people at a longer stable time then just the b-raf, also the combo doesn't seem to have as many side effects as just the b-raf drug. I know this information hasn't been proven but I am just gathering info from this board over the last 2 years discussed.  Also, you can always get out of the trial and just use the b-raf drug, you can't do the b-raf drug first and then go into the combo trial.

      These are just thoughts but hope your Doctors can give you some solid guidance.

      Linda

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      Harry in Fair Oaks
      Participant

      I have been doing a BRAF/MEK trial for about a year now (not Zelboraf – the drugs I'm taking are experimental ones sponsored by GlaxoSmithKline).  My sub-qs are gone and my bone mets are either smaller or gone (and they don't light up on PET).

      I hope the BRAF/MEK combo is effective for you in shrinking the tumor.

      Best wishes,

      Harry

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      Harry in Fair Oaks
      Participant

      I have been doing a BRAF/MEK trial for about a year now (not Zelboraf – the drugs I'm taking are experimental ones sponsored by GlaxoSmithKline).  My sub-qs are gone and my bone mets are either smaller or gone (and they don't light up on PET).

      I hope the BRAF/MEK combo is effective for you in shrinking the tumor.

      Best wishes,

      Harry

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      Harry in Fair Oaks
      Participant

      I have been doing a BRAF/MEK trial for about a year now (not Zelboraf – the drugs I'm taking are experimental ones sponsored by GlaxoSmithKline).  My sub-qs are gone and my bone mets are either smaller or gone (and they don't light up on PET).

      I hope the BRAF/MEK combo is effective for you in shrinking the tumor.

      Best wishes,

      Harry

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      JerryfromFauq
      Participant

      Eileen I would be iterested in Dr Daud's response to the possibility of having a Proton radiation treatment to reduce the size of the tumor to to something more exciseable.  While I don't think UC has the equipment for Proton radiatiion, Loma Linda has the most experience in  the USA with Proton Therapy.  I read a post yesterday where the Proton Therapy was used to reduce the size of some melanoma brain tumors under the hope that they will be more operable if the are not eliminated by it.  Personally I lean strongly towards Proton therapy for any close areas that could lead to damage of any critical body components/organs.

           Good luck, praying for you.

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      JerryfromFauq
      Participant

      Eileen I would be iterested in Dr Daud's response to the possibility of having a Proton radiation treatment to reduce the size of the tumor to to something more exciseable.  While I don't think UC has the equipment for Proton radiatiion, Loma Linda has the most experience in  the USA with Proton Therapy.  I read a post yesterday where the Proton Therapy was used to reduce the size of some melanoma brain tumors under the hope that they will be more operable if the are not eliminated by it.  Personally I lean strongly towards Proton therapy for any close areas that could lead to damage of any critical body components/organs.

           Good luck, praying for you.

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      JerryfromFauq
      Participant

      Eileen I would be iterested in Dr Daud's response to the possibility of having a Proton radiation treatment to reduce the size of the tumor to to something more exciseable.  While I don't think UC has the equipment for Proton radiatiion, Loma Linda has the most experience in  the USA with Proton Therapy.  I read a post yesterday where the Proton Therapy was used to reduce the size of some melanoma brain tumors under the hope that they will be more operable if the are not eliminated by it.  Personally I lean strongly towards Proton therapy for any close areas that could lead to damage of any critical body components/organs.

           Good luck, praying for you.

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      s Mom
      Participant

      It's so hard with clinical trials and those wash out requirements.  My son is on Zelboraf alone and I do have to let you know it works FAST!   He was pretty sick and started feeling better after 3 days on the meds.  Although we don't have any experience with the Zel/Mek combination, I will pray that it works fast for you, and it also sounds like you have really good doctors.  Hang in there – this forum is a safe place to vent.  Lots of great advice, empathy and support from some really strong and heroic fighters around here.  Keep us updated and God Bless!

      Bridgette (Jeff's Mom)

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      s Mom
      Participant

      It's so hard with clinical trials and those wash out requirements.  My son is on Zelboraf alone and I do have to let you know it works FAST!   He was pretty sick and started feeling better after 3 days on the meds.  Although we don't have any experience with the Zel/Mek combination, I will pray that it works fast for you, and it also sounds like you have really good doctors.  Hang in there – this forum is a safe place to vent.  Lots of great advice, empathy and support from some really strong and heroic fighters around here.  Keep us updated and God Bless!

      Bridgette (Jeff's Mom)

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      s Mom
      Participant

      It's so hard with clinical trials and those wash out requirements.  My son is on Zelboraf alone and I do have to let you know it works FAST!   He was pretty sick and started feeling better after 3 days on the meds.  Although we don't have any experience with the Zel/Mek combination, I will pray that it works fast for you, and it also sounds like you have really good doctors.  Hang in there – this forum is a safe place to vent.  Lots of great advice, empathy and support from some really strong and heroic fighters around here.  Keep us updated and God Bless!

      Bridgette (Jeff's Mom)

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      hope4cure1
      Participant

      Hi Eileen,

      Even poster children get shaken sometimes.  I hear what you're saying about feeling lulled.  Your body has responded to previous treatment, when probably no one thought it would.  You're a proven winner, Eileen.  You have excellent doctors working on your course of treatment.  You'll probably feel better when you work your way over the decision making hump.  I'll be holding good thoughts and prayers for you as you move through this step by step.

      Hope

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      hope4cure1
      Participant

      Hi Eileen,

      Even poster children get shaken sometimes.  I hear what you're saying about feeling lulled.  Your body has responded to previous treatment, when probably no one thought it would.  You're a proven winner, Eileen.  You have excellent doctors working on your course of treatment.  You'll probably feel better when you work your way over the decision making hump.  I'll be holding good thoughts and prayers for you as you move through this step by step.

      Hope

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      hope4cure1
      Participant

      Hi Eileen,

      Even poster children get shaken sometimes.  I hear what you're saying about feeling lulled.  Your body has responded to previous treatment, when probably no one thought it would.  You're a proven winner, Eileen.  You have excellent doctors working on your course of treatment.  You'll probably feel better when you work your way over the decision making hump.  I'll be holding good thoughts and prayers for you as you move through this step by step.

      Hope

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      Linny
      Participant

      Hi Eileen, I'm sorry to read that you're going through this. Sounds like you've beaten the odds already and who says you can't continue to do so? Your own body has been doing something right this entire time.

      But I can definitely understand your anxiety and wish I could offer you something more than a virtual hug.

      On a positive note, from what I've read here folks respond quickly to Zelboraf, so once you're on it, it should start zapping those melanoma cells right away. How long is the waiting period for you to get into the trial? I would definitely discuss my feelings of anxiety with the doctors. Perhaps they can offer you some reassurance. Is there a possibility that they can start you on Zelboraf while you're waiting to be approved for the trial?

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      Linny
      Participant

      Hi Eileen, I'm sorry to read that you're going through this. Sounds like you've beaten the odds already and who says you can't continue to do so? Your own body has been doing something right this entire time.

      But I can definitely understand your anxiety and wish I could offer you something more than a virtual hug.

      On a positive note, from what I've read here folks respond quickly to Zelboraf, so once you're on it, it should start zapping those melanoma cells right away. How long is the waiting period for you to get into the trial? I would definitely discuss my feelings of anxiety with the doctors. Perhaps they can offer you some reassurance. Is there a possibility that they can start you on Zelboraf while you're waiting to be approved for the trial?

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      Linny
      Participant

      Hi Eileen, I'm sorry to read that you're going through this. Sounds like you've beaten the odds already and who says you can't continue to do so? Your own body has been doing something right this entire time.

      But I can definitely understand your anxiety and wish I could offer you something more than a virtual hug.

      On a positive note, from what I've read here folks respond quickly to Zelboraf, so once you're on it, it should start zapping those melanoma cells right away. How long is the waiting period for you to get into the trial? I would definitely discuss my feelings of anxiety with the doctors. Perhaps they can offer you some reassurance. Is there a possibility that they can start you on Zelboraf while you're waiting to be approved for the trial?

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      LynnLuc
      Participant

      Are they considering surgery after the melanoma shrinks ( hoping the Zelboraf takes it all out)!

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      LynnLuc
      Participant

      Are they considering surgery after the melanoma shrinks ( hoping the Zelboraf takes it all out)!

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      LynnLuc
      Participant

      Are they considering surgery after the melanoma shrinks ( hoping the Zelboraf takes it all out)!

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      Eileen L
      Participant

      Thanks to everyone who responded. Still waiting to see if I qualify for the trial. Now my health insurances is saying they won't pay because it is a Phase I trial, testing doseage tolerance and not clinical response. I am planning on fighting this, but in the meantime I am checking out how much it would cost to get started and just pay for the initial tests. I am changing health insurance in July and will be going from a HMO to a PPO so I figure I will have better luck with the new company. It is a group plan so they can't exclude pre-existing conditions.

      Someone asked if the plan is to take the tumor out once it shrinks. Don't know yet, will have to see how far down it goes. Right now it is pressing up against my inferior vena cava, the large veing that goes through the abdomen. I  have blood flow through the vein but it is obstructed a bit. I think that if we get the tumor small enough to get far away from the vena cava, I will probably just live with it. I have been living with stable tumor for four years until recently. I have no problem with living that way again!

      All the waiting is driving me nuts. Everytime I think there is clear sailing another road block gets put in my way! So frustrating……

      Eileen L

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      Eileen L
      Participant

      Thanks to everyone who responded. Still waiting to see if I qualify for the trial. Now my health insurances is saying they won't pay because it is a Phase I trial, testing doseage tolerance and not clinical response. I am planning on fighting this, but in the meantime I am checking out how much it would cost to get started and just pay for the initial tests. I am changing health insurance in July and will be going from a HMO to a PPO so I figure I will have better luck with the new company. It is a group plan so they can't exclude pre-existing conditions.

      Someone asked if the plan is to take the tumor out once it shrinks. Don't know yet, will have to see how far down it goes. Right now it is pressing up against my inferior vena cava, the large veing that goes through the abdomen. I  have blood flow through the vein but it is obstructed a bit. I think that if we get the tumor small enough to get far away from the vena cava, I will probably just live with it. I have been living with stable tumor for four years until recently. I have no problem with living that way again!

      All the waiting is driving me nuts. Everytime I think there is clear sailing another road block gets put in my way! So frustrating……

      Eileen L

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      Eileen L
      Participant

      Thanks to everyone who responded. Still waiting to see if I qualify for the trial. Now my health insurances is saying they won't pay because it is a Phase I trial, testing doseage tolerance and not clinical response. I am planning on fighting this, but in the meantime I am checking out how much it would cost to get started and just pay for the initial tests. I am changing health insurance in July and will be going from a HMO to a PPO so I figure I will have better luck with the new company. It is a group plan so they can't exclude pre-existing conditions.

      Someone asked if the plan is to take the tumor out once it shrinks. Don't know yet, will have to see how far down it goes. Right now it is pressing up against my inferior vena cava, the large veing that goes through the abdomen. I  have blood flow through the vein but it is obstructed a bit. I think that if we get the tumor small enough to get far away from the vena cava, I will probably just live with it. I have been living with stable tumor for four years until recently. I have no problem with living that way again!

      All the waiting is driving me nuts. Everytime I think there is clear sailing another road block gets put in my way! So frustrating……

      Eileen L

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        kylez
        Participant

        Hi Eileen. I'm sorry to hear of this escalation. I didn't make it to the support group last week. I do hear some of the tradeoffs you're balancing, for BRAF alone immediately vs. wait for BRAF + MEK, with possible surgery (or not) as well. A tough call as you say, you're forced into gambling with the tradeoffs. 

        At some point there is a whole world of other trials to look at too (not just UCSF), and/or IPI. I was turned down for a TIL trial at MD Anderson for example (I flew out there to be seen). 

        I got such a different (very positive) attitude about clinical trials in general (no idea about phase I specifically) from your HMO's oncologist in Riverside, than the local one I saw. It was like night and day.

        Hope you're able to get enough consensus soon to make an initial choice, so at least the choice is out of the way.

        – Kyle

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        kylez
        Participant

        Hi Eileen. I'm sorry to hear of this escalation. I didn't make it to the support group last week. I do hear some of the tradeoffs you're balancing, for BRAF alone immediately vs. wait for BRAF + MEK, with possible surgery (or not) as well. A tough call as you say, you're forced into gambling with the tradeoffs. 

        At some point there is a whole world of other trials to look at too (not just UCSF), and/or IPI. I was turned down for a TIL trial at MD Anderson for example (I flew out there to be seen). 

        I got such a different (very positive) attitude about clinical trials in general (no idea about phase I specifically) from your HMO's oncologist in Riverside, than the local one I saw. It was like night and day.

        Hope you're able to get enough consensus soon to make an initial choice, so at least the choice is out of the way.

        – Kyle

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        kylez
        Participant

        Hi Eileen. I'm sorry to hear of this escalation. I didn't make it to the support group last week. I do hear some of the tradeoffs you're balancing, for BRAF alone immediately vs. wait for BRAF + MEK, with possible surgery (or not) as well. A tough call as you say, you're forced into gambling with the tradeoffs. 

        At some point there is a whole world of other trials to look at too (not just UCSF), and/or IPI. I was turned down for a TIL trial at MD Anderson for example (I flew out there to be seen). 

        I got such a different (very positive) attitude about clinical trials in general (no idea about phase I specifically) from your HMO's oncologist in Riverside, than the local one I saw. It was like night and day.

        Hope you're able to get enough consensus soon to make an initial choice, so at least the choice is out of the way.

        – Kyle

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        Eileen L
        Participant
        Thx for your support, Kyle. I missed the group last week as well. I was all involved in tying up lose ends in preparation for the surgery that was cancelled!

        Question for you. I believe you recently changed health insurers from Kaiser. I need to decide whether to change to a PPO, which is expensive but gives the most flexibility, or go with a HMO, Blue Shield, which will give me access to UCSF and Dr Minor but with much less flexibility. Did you have to consider similar options? If so I would love to talk to you about how you made the decision. You can email me at [email protected].

        Eileen L

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        Eileen L
        Participant
        Thx for your support, Kyle. I missed the group last week as well. I was all involved in tying up lose ends in preparation for the surgery that was cancelled!

        Question for you. I believe you recently changed health insurers from Kaiser. I need to decide whether to change to a PPO, which is expensive but gives the most flexibility, or go with a HMO, Blue Shield, which will give me access to UCSF and Dr Minor but with much less flexibility. Did you have to consider similar options? If so I would love to talk to you about how you made the decision. You can email me at [email protected].

        Eileen L

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        Eileen L
        Participant
        Thx for your support, Kyle. I missed the group last week as well. I was all involved in tying up lose ends in preparation for the surgery that was cancelled!

        Question for you. I believe you recently changed health insurers from Kaiser. I need to decide whether to change to a PPO, which is expensive but gives the most flexibility, or go with a HMO, Blue Shield, which will give me access to UCSF and Dr Minor but with much less flexibility. Did you have to consider similar options? If so I would love to talk to you about how you made the decision. You can email me at [email protected].

        Eileen L

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      Charlie S
      Participant

      If you can (which I beleive you are able), please rewind to when you and I first met, eyeball to eyeball in Chapel Hill at a MRF Symposium.

      Then, you were riding high on your success with Nexavar that against all odds, was working for you.

      Now, think about your second night at Chapel Hill when you, Jerry Ellis, Amy Busby, Linda Haley, Dawna,, her partner and I were brainstorming about melanoma,, laptops ablaze as we enjoyed light cocktails…………..and I will never forget your comment in the middle of all the sharing of research…………….."What do other people do that don't have skills like this?"

      The answer is not as important as your question.  You have the skills.  You know the importance of leaning on your partner for emotional support as you work the problem.  And you know, I know and everyone in that motel room that night knew that one MUST work the problem.

      You are smart, you are educated, you are articulate, you have the ability to sort out what is best for you and what suits your mind.

      One of the biggest things I have learned about melanoma is that it breeds uncertainity to find opportunity.

      I cannot tell you what to do or what choice to make; but I CAN tell you that to waiver out of fear opens a dark door you can otherwise control.

      Think it through and work the problem.

      You can do it.

       

      Charlie S

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      Charlie S
      Participant

      If you can (which I beleive you are able), please rewind to when you and I first met, eyeball to eyeball in Chapel Hill at a MRF Symposium.

      Then, you were riding high on your success with Nexavar that against all odds, was working for you.

      Now, think about your second night at Chapel Hill when you, Jerry Ellis, Amy Busby, Linda Haley, Dawna,, her partner and I were brainstorming about melanoma,, laptops ablaze as we enjoyed light cocktails…………..and I will never forget your comment in the middle of all the sharing of research…………….."What do other people do that don't have skills like this?"

      The answer is not as important as your question.  You have the skills.  You know the importance of leaning on your partner for emotional support as you work the problem.  And you know, I know and everyone in that motel room that night knew that one MUST work the problem.

      You are smart, you are educated, you are articulate, you have the ability to sort out what is best for you and what suits your mind.

      One of the biggest things I have learned about melanoma is that it breeds uncertainity to find opportunity.

      I cannot tell you what to do or what choice to make; but I CAN tell you that to waiver out of fear opens a dark door you can otherwise control.

      Think it through and work the problem.

      You can do it.

       

      Charlie S

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      Charlie S
      Participant

      If you can (which I beleive you are able), please rewind to when you and I first met, eyeball to eyeball in Chapel Hill at a MRF Symposium.

      Then, you were riding high on your success with Nexavar that against all odds, was working for you.

      Now, think about your second night at Chapel Hill when you, Jerry Ellis, Amy Busby, Linda Haley, Dawna,, her partner and I were brainstorming about melanoma,, laptops ablaze as we enjoyed light cocktails…………..and I will never forget your comment in the middle of all the sharing of research…………….."What do other people do that don't have skills like this?"

      The answer is not as important as your question.  You have the skills.  You know the importance of leaning on your partner for emotional support as you work the problem.  And you know, I know and everyone in that motel room that night knew that one MUST work the problem.

      You are smart, you are educated, you are articulate, you have the ability to sort out what is best for you and what suits your mind.

      One of the biggest things I have learned about melanoma is that it breeds uncertainity to find opportunity.

      I cannot tell you what to do or what choice to make; but I CAN tell you that to waiver out of fear opens a dark door you can otherwise control.

      Think it through and work the problem.

      You can do it.

       

      Charlie S

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        Eileen L
        Participant
        Thanks Charlie for your encouraging and wise words. I am feeling much less fearful and panic stricken. I am still researching some details but right now I am thinking tending to try to qualify for the trial and if need be pay out of pocket for initial testing. My HMO is refusing to cooperate with the trial because it is a Phase 1. By the time the second round of testing comes about I should be out of Kaiser and covered by a plan that will cooperate with the trial.

        Yes, it is amazing how fear can take over and muddy my mind. I am thankful that there are wise, kind people in my life such as yourself who remind me to move thru the fear and get to that place where I focus on what I can do instead of what is beyond my control.

        Take care,
        Eileen L

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        Wilfred
        Participant

        Eileen, I have just joined the BRAF/MEK trial at NYUCC with Dr Anna Pavlick. My first meds will be next week. I have a couple of questions for you. 

        1. Have you been able to read the complete consent form for the trial? In the one I signed there was language to the effect that Roche would pay for the uncovered expenses in some cases.

        2. Are you covered by Medicare as primary with Kaiser as supplemental? If you are, Medicare pays 80% of approved costs.

        In any case you should talk to your local trial administrator about your payment options. The trial is thought to hold great promise. Roche will do very well with Zelboraf/gdc0973, they want good cases to prove their combo. 

        From what Charlie said about you and to you, I think you are a fighter….so go FIGHT.

        Wilfred

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        Wilfred
        Participant

        Eileen, I have just joined the BRAF/MEK trial at NYUCC with Dr Anna Pavlick. My first meds will be next week. I have a couple of questions for you. 

        1. Have you been able to read the complete consent form for the trial? In the one I signed there was language to the effect that Roche would pay for the uncovered expenses in some cases.

        2. Are you covered by Medicare as primary with Kaiser as supplemental? If you are, Medicare pays 80% of approved costs.

        In any case you should talk to your local trial administrator about your payment options. The trial is thought to hold great promise. Roche will do very well with Zelboraf/gdc0973, they want good cases to prove their combo. 

        From what Charlie said about you and to you, I think you are a fighter….so go FIGHT.

        Wilfred

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        Eileen L
        Participant
        Thx for the suggestion and encouragement. I am on the Kaiser Medicare HMO so I don’t think they can bill Medicare directly, but I will certainly look into it!

        Good luck with the trial. If I qualify I am going to pay for the expenses that the study won’t cover since I am leaving the HMO as of July 1!

        Eileen

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        Eileen L
        Participant
        Thx for the suggestion and encouragement. I am on the Kaiser Medicare HMO so I don’t think they can bill Medicare directly, but I will certainly look into it!

        Good luck with the trial. If I qualify I am going to pay for the expenses that the study won’t cover since I am leaving the HMO as of July 1!

        Eileen

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        Eileen L
        Participant
        Thx for the suggestion and encouragement. I am on the Kaiser Medicare HMO so I don’t think they can bill Medicare directly, but I will certainly look into it!

        Good luck with the trial. If I qualify I am going to pay for the expenses that the study won’t cover since I am leaving the HMO as of July 1!

        Eileen

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        Wilfred
        Participant

        Eileen, I have just joined the BRAF/MEK trial at NYUCC with Dr Anna Pavlick. My first meds will be next week. I have a couple of questions for you. 

        1. Have you been able to read the complete consent form for the trial? In the one I signed there was language to the effect that Roche would pay for the uncovered expenses in some cases.

        2. Are you covered by Medicare as primary with Kaiser as supplemental? If you are, Medicare pays 80% of approved costs.

        In any case you should talk to your local trial administrator about your payment options. The trial is thought to hold great promise. Roche will do very well with Zelboraf/gdc0973, they want good cases to prove their combo. 

        From what Charlie said about you and to you, I think you are a fighter….so go FIGHT.

        Wilfred

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        Eileen L
        Participant
        Thanks Charlie for your encouraging and wise words. I am feeling much less fearful and panic stricken. I am still researching some details but right now I am thinking tending to try to qualify for the trial and if need be pay out of pocket for initial testing. My HMO is refusing to cooperate with the trial because it is a Phase 1. By the time the second round of testing comes about I should be out of Kaiser and covered by a plan that will cooperate with the trial.

        Yes, it is amazing how fear can take over and muddy my mind. I am thankful that there are wise, kind people in my life such as yourself who remind me to move thru the fear and get to that place where I focus on what I can do instead of what is beyond my control.

        Take care,
        Eileen L

        Loading spinner
        Eileen L
        Participant
        Thanks Charlie for your encouraging and wise words. I am feeling much less fearful and panic stricken. I am still researching some details but right now I am thinking tending to try to qualify for the trial and if need be pay out of pocket for initial testing. My HMO is refusing to cooperate with the trial because it is a Phase 1. By the time the second round of testing comes about I should be out of Kaiser and covered by a plan that will cooperate with the trial.

        Yes, it is amazing how fear can take over and muddy my mind. I am thankful that there are wise, kind people in my life such as yourself who remind me to move thru the fear and get to that place where I focus on what I can do instead of what is beyond my control.

        Take care,
        Eileen L

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