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Mom of 3 surviving stage IV
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Mom of 3 surviving stage IV

› Forums › General Melanoma Community › Mom of 3 surviving stage IV

  • Post
    • April 3, 2011 at 5:57 pm
    love4life
    Participant

      Hello All,

      Hello All,

      I've been browsing the message boards here for around a year and have finally gotten up the courage to say hi.  I have been diagnosed with Stage IV MM with metastasis to the brain and lung.  I am currently NED and am finishing up my year of Interferon in the next 6 weeks.  I am curious if anyone out there has had brain mets and what type of treatment you were offered?  I am very hopeful that the Interferon works and that I will remain NED for many years to come but am wondering what other treatments are available for someone like me.  I am a young mom and am willing to try anything to keep this monster from popping up again. 

       

      Thanks!

      Natalie

    Viewing 11 reply threads
    • Replies
        • April 3, 2011 at 6:12 pm
        Janner
        Participant

          Hi Natalie,

          Sorry you have to join us here, but this is a good place for questions.  I have one for you, though.  Are you in the US?  They don't typically use Interferon for stage IV around here.  Most people with brain mets are offered 3 types of treatment:  WBR (whole brain radiation), SRS/GammaKnife – some type of targeted radiation used for individual tumors, or Temodar (chemo that crosses the blood brain barrier).  I'm sure you'll hear from others.  What treatments did you undergo to become NED?

          Best wishes,

          Janner

            • April 3, 2011 at 6:35 pm
            love4life
            Participant

              Hi Janner,

              I am in Canada and have had a craniotomy, gamma knife surgery and then was offered Interferon.  I have wondered about Temodar but was told it was only for those with active disease.  I have also had a wedge resection for a spot on my lung which was also melanoma and that is how I end up back to NED.  The Interferon (fingers crossed) has seemed to have helped as I've been clear of disease for 10 months. 

              • April 3, 2011 at 6:37 pm
              dian in spokane
              Participant

                I see we were writing at the same time. Thanks for the additional info. And.. again..extraordinary!

                dian

                • April 3, 2011 at 6:37 pm
                dian in spokane
                Participant

                  I see we were writing at the same time. Thanks for the additional info. And.. again..extraordinary!

                  dian

                  • April 11, 2011 at 2:28 am
                  LynnLuc
                  Participant

                    I did /doing this clinical trial at Moffitt  using the Anti-PD-1 (MDX 1106) and 6 peptides…I finished  two12 week cycles  and now doing the booster IV's every 3 months of the MDX 1106 for the next 2 years if I remain NED. It was the only promising trial I could find while being NED…

                    • April 11, 2011 at 2:28 am
                    LynnLuc
                    Participant

                      I did /doing this clinical trial at Moffitt  using the Anti-PD-1 (MDX 1106) and 6 peptides…I finished  two12 week cycles  and now doing the booster IV's every 3 months of the MDX 1106 for the next 2 years if I remain NED. It was the only promising trial I could find while being NED…

                      • April 3, 2011 at 6:35 pm
                      love4life
                      Participant

                        Hi Janner,

                        I am in Canada and have had a craniotomy, gamma knife surgery and then was offered Interferon.  I have wondered about Temodar but was told it was only for those with active disease.  I have also had a wedge resection for a spot on my lung which was also melanoma and that is how I end up back to NED.  The Interferon (fingers crossed) has seemed to have helped as I've been clear of disease for 10 months. 

                      • April 3, 2011 at 6:12 pm
                      Janner
                      Participant

                        Hi Natalie,

                        Sorry you have to join us here, but this is a good place for questions.  I have one for you, though.  Are you in the US?  They don't typically use Interferon for stage IV around here.  Most people with brain mets are offered 3 types of treatment:  WBR (whole brain radiation), SRS/GammaKnife – some type of targeted radiation used for individual tumors, or Temodar (chemo that crosses the blood brain barrier).  I'm sure you'll hear from others.  What treatments did you undergo to become NED?

                        Best wishes,

                        Janner

                        • April 3, 2011 at 6:31 pm
                        dian in spokane
                        Participant

                          HI Natalie and welcome to the board!

                          Like Janner, I'm curious about your treatment. As she mentioned, interferon is rarely used this way for stage IV treatment. And…if you are finishing up your year, does that mean that you had brain mets and lung mets surgically removed a year ago?Was there some other treatment other than surgery?

                          In any case, you've shown some extraordinary good luck by being NED this long after such serious metastes, and I congratulate you on doing so well. I hope you continue on this long NED run.

                          Will you be having scans when you end your interferon treatment?

                          dian  

                            • April 3, 2011 at 6:51 pm
                            love4life
                            Participant

                              Hi there,

                              Here's the timeline for how my treatment has gone up until  now…

                              May/June 2001 – melanoma removed and wide excision done of skin on my left temple

                              December 15, 2009 – fist sized tumour removed by craniotomy – was shocked to find out that it was melanoma after 9 years

                              January 28, 2010 – Gamma Knife

                              February 2010 – started Interferon

                              June 1, 2010 – lung resection for a 7 mm melanoma mets

                              July 2010 – started back on the Interferon.  Was able to pick up treatment where I left off because the lung lesion had been there on my initial scans in January 2010 and they had been watching it; therefore not a new spot

                              Presently, no new mets and clear of disease according to my recent scans (brain MRI and CT's).  I will be going for a whole whack of scans when I am finished the Interferon and will be monitored by my Dr. every 3 months.

                              I feel well other than the Interferon hangover and will be so relieved to have this done next month. 

                              Thanks for your response!

                              Natalie

                              • April 3, 2011 at 6:51 pm
                              love4life
                              Participant

                                Hi there,

                                Here's the timeline for how my treatment has gone up until  now…

                                May/June 2001 – melanoma removed and wide excision done of skin on my left temple

                                December 15, 2009 – fist sized tumour removed by craniotomy – was shocked to find out that it was melanoma after 9 years

                                January 28, 2010 – Gamma Knife

                                February 2010 – started Interferon

                                June 1, 2010 – lung resection for a 7 mm melanoma mets

                                July 2010 – started back on the Interferon.  Was able to pick up treatment where I left off because the lung lesion had been there on my initial scans in January 2010 and they had been watching it; therefore not a new spot

                                Presently, no new mets and clear of disease according to my recent scans (brain MRI and CT's).  I will be going for a whole whack of scans when I am finished the Interferon and will be monitored by my Dr. every 3 months.

                                I feel well other than the Interferon hangover and will be so relieved to have this done next month. 

                                Thanks for your response!

                                Natalie

                              • April 3, 2011 at 6:31 pm
                              dian in spokane
                              Participant

                                HI Natalie and welcome to the board!

                                Like Janner, I'm curious about your treatment. As she mentioned, interferon is rarely used this way for stage IV treatment. And…if you are finishing up your year, does that mean that you had brain mets and lung mets surgically removed a year ago?Was there some other treatment other than surgery?

                                In any case, you've shown some extraordinary good luck by being NED this long after such serious metastes, and I congratulate you on doing so well. I hope you continue on this long NED run.

                                Will you be having scans when you end your interferon treatment?

                                dian  

                                • April 3, 2011 at 9:25 pm
                                premedy
                                Participant

                                  Wow Natalie that is an amazing story. I was a little confused at first because I thought from your post that you had become NED through interferron.  But after I read your profile its clear that surgery is what got you to your current NED status.  That is truly amazing that you had a fist sized tumor in your brain and you are walking around NED.  I am pretty new to this whole thing so I don't have any advice for you but just wanted to let you know how inspirational your story is.

                                  pat

                                  • April 3, 2011 at 9:25 pm
                                  premedy
                                  Participant

                                    Wow Natalie that is an amazing story. I was a little confused at first because I thought from your post that you had become NED through interferron.  But after I read your profile its clear that surgery is what got you to your current NED status.  That is truly amazing that you had a fist sized tumor in your brain and you are walking around NED.  I am pretty new to this whole thing so I don't have any advice for you but just wanted to let you know how inspirational your story is.

                                    pat

                                    • April 3, 2011 at 10:38 pm
                                    MichaelFL
                                    Participant

                                      Wow! Glad everything has worked well for you. This board needs more stories like yours.

                                      Keep it up!

                                      Michael

                                      • April 3, 2011 at 10:38 pm
                                      MichaelFL
                                      Participant

                                        Wow! Glad everything has worked well for you. This board needs more stories like yours.

                                        Keep it up!

                                        Michael

                                        • April 4, 2011 at 1:43 am
                                        Rydell
                                        Participant

                                          Hi Natalie,

                                          Glad to hear you are NED. Thank you for reaching out.

                                          I was diagnosed with Stage IV MM in January 2011, after a double craniotomy. I received 4 CyberKnife treatments for a third brain met. I have about six other lesions throughout my body. I just completed six weeks of Temodar and will have a PET scan this week. I also tested positive for the B-RAF mutation. Not sure what the next step will be, it all seems very overwhelming.

                                          Please keep us updated on your status. You've given me some more hope 🙂

                                          Thanks,

                                          Amanda

                                            • April 5, 2011 at 12:40 pm
                                            love4life
                                            Participant

                                              Hi Amanda,

                                              Good luck with your PET scan this week.  How are you finding the Temodar?  Are there alot of side effects?  We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife.  I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.

                                              You are right about it being overwhelming.

                                              Natalie

                                               

                                              • April 10, 2011 at 12:35 am
                                              Rydell
                                              Participant

                                                Hi Natalie,

                                                I will get my results on Wednesday. I took 150mg everyday for six weeks. Fatigue, nausea, and hair loss were the main side effects. First three weeks weren't bad, then the side effects started…some days were worse than others, I just slept a lot. CyberKnife doesn't use the metal halo. You should definitely be tested for the B-RAF mutation.

                                                Email me anytime you want to talk, [email protected]. But definitely keep us updated on your status. Good luck with everything!!
                                                 

                                                Amanda

                                                • April 10, 2011 at 12:35 am
                                                Rydell
                                                Participant

                                                  Hi Natalie,

                                                  I will get my results on Wednesday. I took 150mg everyday for six weeks. Fatigue, nausea, and hair loss were the main side effects. First three weeks weren't bad, then the side effects started…some days were worse than others, I just slept a lot. CyberKnife doesn't use the metal halo. You should definitely be tested for the B-RAF mutation.

                                                  Email me anytime you want to talk, [email protected]. But definitely keep us updated on your status. Good luck with everything!!
                                                   

                                                  Amanda

                                                  • April 5, 2011 at 12:40 pm
                                                  love4life
                                                  Participant

                                                    Hi Amanda,

                                                    Good luck with your PET scan this week.  How are you finding the Temodar?  Are there alot of side effects?  We use Gamma Knife here in Canada (not sure really what the difference is) compared to CyberKnife.  I havn't been tested for the B-RAF mutation but will be asking about it next time I go in.

                                                    You are right about it being overwhelming.

                                                    Natalie

                                                     

                                                  • April 4, 2011 at 1:43 am
                                                  Rydell
                                                  Participant

                                                    Hi Natalie,

                                                    Glad to hear you are NED. Thank you for reaching out.

                                                    I was diagnosed with Stage IV MM in January 2011, after a double craniotomy. I received 4 CyberKnife treatments for a third brain met. I have about six other lesions throughout my body. I just completed six weeks of Temodar and will have a PET scan this week. I also tested positive for the B-RAF mutation. Not sure what the next step will be, it all seems very overwhelming.

                                                    Please keep us updated on your status. You've given me some more hope 🙂

                                                    Thanks,

                                                    Amanda

                                                    • April 11, 2011 at 1:49 am
                                                    FormerCaregiver
                                                    Participant

                                                      Thanks for telling us about your struggle with this monster of a disease.

                                                      Here is an updated list of the newer systemic treatments that are becoming
                                                      available:
                                                      Yervoy (ipilimumab)
                                                      BRAF and MEK inhibitors
                                                      GM-CSF (Leukine)
                                                      OncoVex
                                                      Adoptive cell therapy

                                                      It seems that one could need a combination of treatments from the above
                                                      list, combined with surgery and/or radiotherapy to keep things under
                                                      control.

                                                      As I might have mentioned a little while ago, there are some wonderful
                                                      people in this forum who are more than happy to tell you about their
                                                      experiences with the above.

                                                      Hope this helps.

                                                      Frank

                                                      • April 11, 2011 at 1:49 am
                                                      FormerCaregiver
                                                      Participant

                                                        Thanks for telling us about your struggle with this monster of a disease.

                                                        Here is an updated list of the newer systemic treatments that are becoming
                                                        available:
                                                        Yervoy (ipilimumab)
                                                        BRAF and MEK inhibitors
                                                        GM-CSF (Leukine)
                                                        OncoVex
                                                        Adoptive cell therapy

                                                        It seems that one could need a combination of treatments from the above
                                                        list, combined with surgery and/or radiotherapy to keep things under
                                                        control.

                                                        As I might have mentioned a little while ago, there are some wonderful
                                                        people in this forum who are more than happy to tell you about their
                                                        experiences with the above.

                                                        Hope this helps.

                                                        Frank

                                                    Viewing 11 reply threads
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