My Stage IV update
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My Stage IV update

› Forums › General Melanoma Community › My Stage IV update

  • Post
    • September 15, 2016 at 5:34 pm
    DZnDef
    Participant

    I've been mostly offline since my broth4er's death and am not caught up with everyone.  I hope you are all proficient beast-takers now.  I had a setback.  After 4 years of confining the beast to my lungs it finally spread.  I noticed a lump in my right hand one month after my brother's death.  Followed  by more lumps just under the skin in August.  Before I could make it to a scheduled CT I woke with double vision and signs of stroke.  A CT at the ER showed 7 brain mets.  Started Taf/ MEK today.  Liver is clear so that's good.  Hope these drugs do gthe trick and go easy on me.  Hard to type.  Lack of control of left hand.  I had a good 4 years so no regrets.  Grief and stress will do a number on you though.  Don't worry, be happy.  That's the secret to good health!

     

    Cheers!

    Maggie

Viewing 20 reply threads
  • Replies
      • September 15, 2016 at 6:31 pm
      ed williams
      Participant

      Hi Maggie, I have a link to peer exchange on Onclive that came out a couple of months ago. It is a very good series with a lot of different topics and discussions. Best Wishes!!! Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/managing-brain-metastases-and-side-effects-in-melanoma

      • September 15, 2016 at 6:31 pm
      ed williams
      Participant

      Hi Maggie, I have a link to peer exchange on Onclive that came out a couple of months ago. It is a very good series with a lot of different topics and discussions. Best Wishes!!! Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/managing-brain-metastases-and-side-effects-in-melanoma

      • September 15, 2016 at 6:31 pm
      ed williams
      Participant

      Hi Maggie, I have a link to peer exchange on Onclive that came out a couple of months ago. It is a very good series with a lot of different topics and discussions. Best Wishes!!! Ed http://www.onclive.com/peer-exchange/melanoma4-advanced-treatment/managing-brain-metastases-and-side-effects-in-melanoma

        • September 15, 2016 at 6:39 pm
        DZnDef
        Participant

        Thank you, Ed.  As usual, a very helpful link.

        • September 15, 2016 at 6:39 pm
        DZnDef
        Participant

        Thank you, Ed.  As usual, a very helpful link.

        • September 15, 2016 at 6:39 pm
        DZnDef
        Participant

        Thank you, Ed.  As usual, a very helpful link.

      • September 15, 2016 at 7:20 pm
      Mat
      Participant

      Maggie, sorry to hear.  When I started on BRAF-MEK (my initial Stage IV treatment), I also had a brain met.  We treated the brain met with gamma knife even though there was a possibility that BRAF-MEK would act on the met (which it did in only a week or two).  As an avid reader of this site, I'm sure that you're familiar with gamma knife, etc.  Raising just in case.

      • September 15, 2016 at 7:20 pm
      Mat
      Participant

      Maggie, sorry to hear.  When I started on BRAF-MEK (my initial Stage IV treatment), I also had a brain met.  We treated the brain met with gamma knife even though there was a possibility that BRAF-MEK would act on the met (which it did in only a week or two).  As an avid reader of this site, I'm sure that you're familiar with gamma knife, etc.  Raising just in case.

      • September 15, 2016 at 7:20 pm
      Mat
      Participant

      Maggie, sorry to hear.  When I started on BRAF-MEK (my initial Stage IV treatment), I also had a brain met.  We treated the brain met with gamma knife even though there was a possibility that BRAF-MEK would act on the met (which it did in only a week or two).  As an avid reader of this site, I'm sure that you're familiar with gamma knife, etc.  Raising just in case.

        • September 15, 2016 at 10:24 pm
        DZnDef
        Participant

        Thanks, Mat.  We're banking on the Taf/MEK alone for the brain mets to start.  I have seven that they can see with ct.  MRI is preferred but difficult with my cochlear implants.  Meeting with a gamma knife team tomorrow to discuss options.  My onc wants to focus on Taf/MEK primarily and maybe use gamma knife for any cleanup if needed.  I've decided to follow his advice for now.

        thanks again.

        cheers!

        Maggie

        • September 15, 2016 at 10:24 pm
        DZnDef
        Participant

        Thanks, Mat.  We're banking on the Taf/MEK alone for the brain mets to start.  I have seven that they can see with ct.  MRI is preferred but difficult with my cochlear implants.  Meeting with a gamma knife team tomorrow to discuss options.  My onc wants to focus on Taf/MEK primarily and maybe use gamma knife for any cleanup if needed.  I've decided to follow his advice for now.

        thanks again.

        cheers!

        Maggie

        • September 15, 2016 at 10:24 pm
        DZnDef
        Participant

        Thanks, Mat.  We're banking on the Taf/MEK alone for the brain mets to start.  I have seven that they can see with ct.  MRI is preferred but difficult with my cochlear implants.  Meeting with a gamma knife team tomorrow to discuss options.  My onc wants to focus on Taf/MEK primarily and maybe use gamma knife for any cleanup if needed.  I've decided to follow his advice for now.

        thanks again.

        cheers!

        Maggie

        • September 15, 2016 at 11:53 pm
        killmel
        Participant

        Hi Maggie,

        If you decide to zap mel with gamma knife, you might first want to learn about Proton Therapy because

        "Proton therapy is the most precise form of radiation treatment available today. The accuracy of protons enables doctors to treat tumors with a substantially lower total radiation dose to surrounding healthy tissue. Because proton therapy minimizes radiation exposure to healthy tissues, patients are better able to tolerate their treatments and are less likely to have treatment-related problems."

        Here is a link to San Diego Scripp's Proton therapy center.

        https://www.scripps.org/services/cancer-care__proton-therapy/what-is-proton-therapy

        Good Luck

         

        • September 15, 2016 at 11:53 pm
        killmel
        Participant

        Hi Maggie,

        If you decide to zap mel with gamma knife, you might first want to learn about Proton Therapy because

        "Proton therapy is the most precise form of radiation treatment available today. The accuracy of protons enables doctors to treat tumors with a substantially lower total radiation dose to surrounding healthy tissue. Because proton therapy minimizes radiation exposure to healthy tissues, patients are better able to tolerate their treatments and are less likely to have treatment-related problems."

        Here is a link to San Diego Scripp's Proton therapy center.

        https://www.scripps.org/services/cancer-care__proton-therapy/what-is-proton-therapy

        Good Luck

         

        • September 15, 2016 at 11:53 pm
        killmel
        Participant

        Hi Maggie,

        If you decide to zap mel with gamma knife, you might first want to learn about Proton Therapy because

        "Proton therapy is the most precise form of radiation treatment available today. The accuracy of protons enables doctors to treat tumors with a substantially lower total radiation dose to surrounding healthy tissue. Because proton therapy minimizes radiation exposure to healthy tissues, patients are better able to tolerate their treatments and are less likely to have treatment-related problems."

        Here is a link to San Diego Scripp's Proton therapy center.

        https://www.scripps.org/services/cancer-care__proton-therapy/what-is-proton-therapy

        Good Luck

         

      • September 15, 2016 at 11:46 pm
      Julie in SoCal
      Participant

      Awww Dang, Maggie!  I had hoped we'd not heard from your for awhile because you were out living your life and having a great time.  

      It sounds like you've got a good plan! Hopefully the Taf/MEK combo does the trick and gets you durable NED status!

      Shalom!

      Julie

      • September 15, 2016 at 11:46 pm
      Julie in SoCal
      Participant

      Awww Dang, Maggie!  I had hoped we'd not heard from your for awhile because you were out living your life and having a great time.  

      It sounds like you've got a good plan! Hopefully the Taf/MEK combo does the trick and gets you durable NED status!

      Shalom!

      Julie

      • September 15, 2016 at 11:46 pm
      Julie in SoCal
      Participant

      Awww Dang, Maggie!  I had hoped we'd not heard from your for awhile because you were out living your life and having a great time.  

      It sounds like you've got a good plan! Hopefully the Taf/MEK combo does the trick and gets you durable NED status!

      Shalom!

      Julie

      • September 16, 2016 at 8:07 pm
      WithinMySkin
      Participant
      I’m so terribly sorry, Maggie! Keep on fighting in your brothers memory with your head up! Kick this beast in the tail, girl!!
      • September 16, 2016 at 8:07 pm
      WithinMySkin
      Participant
      I’m so terribly sorry, Maggie! Keep on fighting in your brothers memory with your head up! Kick this beast in the tail, girl!!
      • September 16, 2016 at 8:07 pm
      WithinMySkin
      Participant
      I’m so terribly sorry, Maggie! Keep on fighting in your brothers memory with your head up! Kick this beast in the tail, girl!!
      • September 17, 2016 at 5:20 pm
      kylez
      Participant

      Hi Maggie,

      I'm sorry you got this news and setback. 

      Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

      I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

      Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

      There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

      I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

      – Kyle 

      • September 17, 2016 at 5:20 pm
      kylez
      Participant

      Hi Maggie,

      I'm sorry you got this news and setback. 

      Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

      I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

      Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

      There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

      I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

      – Kyle 

      • September 17, 2016 at 5:20 pm
      kylez
      Participant

      Hi Maggie,

      I'm sorry you got this news and setback. 

      Have your docs talked about temporarily removing the implant? Saw this article here, http://www.ncbi.nlm.nih.gov/pubmed/23364345 . Don't know if that applies to all implant types or is practical or impractical for other reasons. 

      I don't remember seeing the article before, weird since MRI is a sponsor. http://onlinelibrary.wiley.com/doi/10.1111/pcmr.12538/abstract;jsessionid=E441E37754D48B97DF80C791A0256B49.f04t02 . None of it may be particularly useful for treatment for someone dealing with brain mets today, which unfortunately has brought you into it. Any article that talks about brain mets seems to have to bring up dismal statistics, which are likely based on old data before some of the new recent treatments. The abstract is:

      Melanoma central nervous system (CNS) metastases are increasing and the challenges presented by this patient population remain complex. In December 2015, the Melanoma Research Foundation and the Wistar Institute hosted the First Summit on Melanoma Central Nervous System (CNS) Metastases in Philadelphia, Pennsylvania. Here, we provide a review of the current status of the field of melanoma brain metastasis research; identify key challenges and opportunities for improving outcomes in patients with melanoma brain metastases; and set a framework to optimize future research in this critical area.

      There is a link to the full text. One thing that was interesting in the full text was that a couple of times they point to PI3K drugs as being particularly promising for brain mets. As far as I know none are approved, if that's right they only can be accessed in a clinical trial, which is then complicate for patients with brain mets to get into unless brain mets are stable, which when combined with a washout process are difficult. The article also talks about the difficult of patients getting into clinical trials. 

      I'm a fan of Gamma Knife. If your docs think it's appropriate for you, I hope the cochlear implant issue doesn't interfere. Again sorry to hear about this.

      – Kyle 

      • September 18, 2016 at 9:46 pm
      Momofjake
      Participant

      Prayers Maggie. 

      Good advice. 

      Love,

      kerri

      • September 18, 2016 at 9:46 pm
      Momofjake
      Participant

      Prayers Maggie. 

      Good advice. 

      Love,

      kerri

      • September 18, 2016 at 9:46 pm
      Momofjake
      Participant

      Prayers Maggie. 

      Good advice. 

      Love,

      kerri

      • September 27, 2016 at 3:02 am
      sweetaugust
      Participant

      Oh Maggie!  I am hardly on here anymore, but when I come on, I look for you.  I've been such a fan of your fight and choices and spirit.  I'm sorry to hear you've gone through such a tough time as of late.  But I am glad that you investigated options throughout the past few years so you have all your options set in front of you.  I am confident you will come out on top.  I'm always team Maggie!!!  

      All my best and keep up the good work, Laurie

      • September 27, 2016 at 3:02 am
      sweetaugust
      Participant

      Oh Maggie!  I am hardly on here anymore, but when I come on, I look for you.  I've been such a fan of your fight and choices and spirit.  I'm sorry to hear you've gone through such a tough time as of late.  But I am glad that you investigated options throughout the past few years so you have all your options set in front of you.  I am confident you will come out on top.  I'm always team Maggie!!!  

      All my best and keep up the good work, Laurie

      • September 27, 2016 at 3:02 am
      sweetaugust
      Participant

      Oh Maggie!  I am hardly on here anymore, but when I come on, I look for you.  I've been such a fan of your fight and choices and spirit.  I'm sorry to hear you've gone through such a tough time as of late.  But I am glad that you investigated options throughout the past few years so you have all your options set in front of you.  I am confident you will come out on top.  I'm always team Maggie!!!  

      All my best and keep up the good work, Laurie

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