MRF-Logo2019-Horizontal-RGB
My Stage IV update
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

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 6:39 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 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 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 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 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 11:46 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

                                                                Viewing 20 reply threads
                                                                • You must be logged in to reply to this topic.
                                                                About the MRF Patient Forum

                                                                The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

                                                                The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.

                                                                Popular Topics