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Just keeps getting worse

Forums General Melanoma Community Just keeps getting worse

  • Post
    ecc26
    Participant

      Hi, everyone. 

      I don't post or reply terribly often but I do follow this board daily and contribute where I feel I can help. I was a stage 3B in Jan 2011, that progressed to stage 4 in Nov 2012. I spent all of last winter getting IL2, which worked on the tumors I had then but shortly after my final course (less than a month) new tumors started sprouting in a very aggressive manor, including several in my brain. After being rejected from a PD-1 trial in June (due to the discovery of the brain mets) I spent the summer recieving WBR and Ipi (too many mets for gamma knife/srs). I had a mixed response in my body, but my brain mets were reduced to only 2 and were much smaller. Since I didn't have good control of all my tumors we decided to again try for a PD-1 trial in early November. We spent nearly the entire month of November arguing with the insurance company about whether or not they would cover the trial and finally got approval just before Thanksgiving and signed the consent literally the day the trial closed. This past week I went up for my pre-screening tests and was pulled out part way through because my specialist "forgot" that I was BRAF positive and hadn't tried the BRAF inhibitors yet, making me ineligible for the trial.

      I was furious that he couldn't have figured this out earlier in the month so we could have been looking for a different trail, but as it turns out my MRI from the same day showed 4 new brain mets so I would have been disqualified anyway. I am now ineligible for any trails because of the new mets and my search for trials in NY, MA, and PA did not reveal any others I would have qualified for anyway, but I can't help but wonder if things hadn't been so screwed up in November if I might have been able to get into another trial somewhere (my MRI from the end of Oct was stable/shrinking). Oh well, nothing I can do about it now, doesn't mean I'm not frustrated.

      So now I'm on debrafenib/trametinib (BRAF/MEK) that I just started last night. I'm nervous about being on these drugs, not so much because of side effects (although there's some dooseys in there) but more anxious about how well they'll work and for how long. I feel like I'm just waiting for the rug to be pulled out from under me again and then what am I going to do? I also hate that my poor husband is basically watching me get worse and worse despite all the treatments we try. At the moment I feel otherwise pretty good except for some intermittant back pain from the tumors around my kidneys. I lost my voice yesterday afternoon and I"m trying really hard not to read too much into that. 

      I guess I'm just hopoing for some words of ecouragement and success stories. It gets harder and harder every time a therapy fails and this one makes me especially nervouse since there really isn't anything left for me right now. Any advice would be appreciated.

      Thanks,

      Eva

    Viewing 11 reply threads
    • Replies
        Mat
        Participant

          Eva, I'm sorry to hear about your present circumstances.  You may have seen my prior posts on the GSK combo.  In July 2013, just a few weeks after my Stage IV diagnosis, I was effectively told at the NIH (where I was pursuing TIL as an initial treatment) that I needed to start a BRAF inhibitor immediately–and, if it didn't work, I had a few weeks to live.  A few days later, I started on the GSK combo.  Miracle drugs!  Within a few days, I went from deteriorating rapidly–liver pain, lethargy, etc.–to feeling fine.  I've felt fine (great actually) ever since–and my tumor burden has been reduced dramatically.  Yes, they (probably) won't last forever, but the median on the combo is at least 9 months.  There are folks who post on here that have been on this combo for several years . . . .  See also Gina's post from last week–her husband went from a heavy tumor burden to NED on the combo.  Wishing you success with the combo.

          Mat
          Participant

            Eva, I'm sorry to hear about your present circumstances.  You may have seen my prior posts on the GSK combo.  In July 2013, just a few weeks after my Stage IV diagnosis, I was effectively told at the NIH (where I was pursuing TIL as an initial treatment) that I needed to start a BRAF inhibitor immediately–and, if it didn't work, I had a few weeks to live.  A few days later, I started on the GSK combo.  Miracle drugs!  Within a few days, I went from deteriorating rapidly–liver pain, lethargy, etc.–to feeling fine.  I've felt fine (great actually) ever since–and my tumor burden has been reduced dramatically.  Yes, they (probably) won't last forever, but the median on the combo is at least 9 months.  There are folks who post on here that have been on this combo for several years . . . .  See also Gina's post from last week–her husband went from a heavy tumor burden to NED on the combo.  Wishing you success with the combo.

            Mat
            Participant

              Eva, I'm sorry to hear about your present circumstances.  You may have seen my prior posts on the GSK combo.  In July 2013, just a few weeks after my Stage IV diagnosis, I was effectively told at the NIH (where I was pursuing TIL as an initial treatment) that I needed to start a BRAF inhibitor immediately–and, if it didn't work, I had a few weeks to live.  A few days later, I started on the GSK combo.  Miracle drugs!  Within a few days, I went from deteriorating rapidly–liver pain, lethargy, etc.–to feeling fine.  I've felt fine (great actually) ever since–and my tumor burden has been reduced dramatically.  Yes, they (probably) won't last forever, but the median on the combo is at least 9 months.  There are folks who post on here that have been on this combo for several years . . . .  See also Gina's post from last week–her husband went from a heavy tumor burden to NED on the combo.  Wishing you success with the combo.

                ecc26
                Participant

                  Thank you for your response Mat. I have been folllowing your posts, but since I have no experience with the BRAF or other pathway inhibitors I didn't feel there was much I could add to what others were saying and haven't replied. I am so glad things are going so well for you with them, hope you continue to get good results long past the median response time, and hope that if/when they stop working you can get an immunotherapy that gives you the "clinical cure" we all dream of. I hope I can get a good response from them as well, I'm just so afraid given my poor track record that they won't last very long and since each time it comes back it's more agressive I'm afraid I won't have time to try any other options. I'm only 32 and I feel like I'm just torturing my poor husband because he just has to stand by and watch helplessly as all of this is happening. I lost my voice yesterday and i'm not sure why. To my knowledge i don't have any masses in my neck or throat area, I can breath and swallow just fine but I can't talk and I'm trying really hard not to read too much into it but it makes things difficult. I struggle a bit more and loose more confidence each time this thing comes back and I'm just feeling a bit down right now. 

                  Thank you again for your kind and encouraging response

                  -Eva

                  ecc26
                  Participant

                    Thank you for your response Mat. I have been folllowing your posts, but since I have no experience with the BRAF or other pathway inhibitors I didn't feel there was much I could add to what others were saying and haven't replied. I am so glad things are going so well for you with them, hope you continue to get good results long past the median response time, and hope that if/when they stop working you can get an immunotherapy that gives you the "clinical cure" we all dream of. I hope I can get a good response from them as well, I'm just so afraid given my poor track record that they won't last very long and since each time it comes back it's more agressive I'm afraid I won't have time to try any other options. I'm only 32 and I feel like I'm just torturing my poor husband because he just has to stand by and watch helplessly as all of this is happening. I lost my voice yesterday and i'm not sure why. To my knowledge i don't have any masses in my neck or throat area, I can breath and swallow just fine but I can't talk and I'm trying really hard not to read too much into it but it makes things difficult. I struggle a bit more and loose more confidence each time this thing comes back and I'm just feeling a bit down right now. 

                    Thank you again for your kind and encouraging response

                    -Eva

                    ecc26
                    Participant

                      Thank you for your response Mat. I have been folllowing your posts, but since I have no experience with the BRAF or other pathway inhibitors I didn't feel there was much I could add to what others were saying and haven't replied. I am so glad things are going so well for you with them, hope you continue to get good results long past the median response time, and hope that if/when they stop working you can get an immunotherapy that gives you the "clinical cure" we all dream of. I hope I can get a good response from them as well, I'm just so afraid given my poor track record that they won't last very long and since each time it comes back it's more agressive I'm afraid I won't have time to try any other options. I'm only 32 and I feel like I'm just torturing my poor husband because he just has to stand by and watch helplessly as all of this is happening. I lost my voice yesterday and i'm not sure why. To my knowledge i don't have any masses in my neck or throat area, I can breath and swallow just fine but I can't talk and I'm trying really hard not to read too much into it but it makes things difficult. I struggle a bit more and loose more confidence each time this thing comes back and I'm just feeling a bit down right now. 

                      Thank you again for your kind and encouraging response

                      -Eva

                      Mat
                      Participant

                        Eva, I understand where you are.  You should see results within a few days.  I started on a Friday and noticed a difference by Monday–though you shouldn't be diacouraged if you don't see results that quickly.  The combo can also act on brain mets.  I don't have any sage advice on how to deal with the mental aspect–I'm not really one of those "PMA" folks.  At a challenging time around the time of my diagnosis, I was comforted by the audiobook version of When Bad Things Happen to Good People (available at Audible.com).  Written by a rabbi, but I think the message would appeal to any faith.  Keep moving forward.

                        Mat
                        Participant

                          Eva, I understand where you are.  You should see results within a few days.  I started on a Friday and noticed a difference by Monday–though you shouldn't be diacouraged if you don't see results that quickly.  The combo can also act on brain mets.  I don't have any sage advice on how to deal with the mental aspect–I'm not really one of those "PMA" folks.  At a challenging time around the time of my diagnosis, I was comforted by the audiobook version of When Bad Things Happen to Good People (available at Audible.com).  Written by a rabbi, but I think the message would appeal to any faith.  Keep moving forward.

                          Mat
                          Participant

                            Eva, I understand where you are.  You should see results within a few days.  I started on a Friday and noticed a difference by Monday–though you shouldn't be diacouraged if you don't see results that quickly.  The combo can also act on brain mets.  I don't have any sage advice on how to deal with the mental aspect–I'm not really one of those "PMA" folks.  At a challenging time around the time of my diagnosis, I was comforted by the audiobook version of When Bad Things Happen to Good People (available at Audible.com).  Written by a rabbi, but I think the message would appeal to any faith.  Keep moving forward.

                          BrianP
                          Participant

                            Eva,

                            So sorry to hear how many obstacles you are having to endure.  Hang in there!  I know it seems like your melanoma gets more agressive each time it comes back but hopefully with each treatment you are getting some synergistic effect and maybe the next treatment will be the one that knocks melanoma on its butt.  Hope you won't need another treatment after BRAF/MEK but it definitely has the potential to be the bridge for you to a future immunotherapy.  I keep hearing 2015 for FDA approval of anti-PD1.  That will be here before you know it.  You are too young to have to be going through this!  Stay positive.  You'll be in my prayers.  Please keep us updated.

                            Brian

                            BrianP
                            Participant

                              Eva,

                              So sorry to hear how many obstacles you are having to endure.  Hang in there!  I know it seems like your melanoma gets more agressive each time it comes back but hopefully with each treatment you are getting some synergistic effect and maybe the next treatment will be the one that knocks melanoma on its butt.  Hope you won't need another treatment after BRAF/MEK but it definitely has the potential to be the bridge for you to a future immunotherapy.  I keep hearing 2015 for FDA approval of anti-PD1.  That will be here before you know it.  You are too young to have to be going through this!  Stay positive.  You'll be in my prayers.  Please keep us updated.

                              Brian

                              BrianP
                              Participant

                                Eva,

                                So sorry to hear how many obstacles you are having to endure.  Hang in there!  I know it seems like your melanoma gets more agressive each time it comes back but hopefully with each treatment you are getting some synergistic effect and maybe the next treatment will be the one that knocks melanoma on its butt.  Hope you won't need another treatment after BRAF/MEK but it definitely has the potential to be the bridge for you to a future immunotherapy.  I keep hearing 2015 for FDA approval of anti-PD1.  That will be here before you know it.  You are too young to have to be going through this!  Stay positive.  You'll be in my prayers.  Please keep us updated.

                                Brian

                                Harry in Fair Oaks
                                Participant

                                  I have been on the BRAF/MEK combo through the GSK trial for 2-1/2 years now (since May 2011) and I am basically disease-free.  I hope it works for you as well as it did for me.

                                  Best wishes,

                                  Harry

                                    Eileen L
                                    Participant

                                      Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                      Eileen L

                                      Eileen L
                                      Participant

                                        Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                        Eileen L

                                        Eileen L
                                        Participant

                                          Eva, I have been on a BRAF/MEK inhibitor through the Roche trials for 18 months with great results. I am six years out from my Stage 4 diagnosis. Hang in there. These drugs can work for years!

                                          Eileen L

                                        Harry in Fair Oaks
                                        Participant

                                          I have been on the BRAF/MEK combo through the GSK trial for 2-1/2 years now (since May 2011) and I am basically disease-free.  I hope it works for you as well as it did for me.

                                          Best wishes,

                                          Harry

                                          Harry in Fair Oaks
                                          Participant

                                            I have been on the BRAF/MEK combo through the GSK trial for 2-1/2 years now (since May 2011) and I am basically disease-free.  I hope it works for you as well as it did for me.

                                            Best wishes,

                                            Harry

                                            ecc26
                                            Participant

                                              Thank you everyone for your kind words and happy stories. It does ease my mind some to read them. I hope I get as good a response and one that lasts as long as some of you have. Only time will tell, I guess. 

                                              Again, thank you for the positive thoughts and happy stories. I do appreciate this board and the information/support its members provide.

                                              -Eva

                                                delora
                                                Participant

                                                  Eva,

                                                  I admire your strength and determination.  It sounds like you are an amazing advocate for yourself.  It ticked me off to read what happened with you and the trial.  From what I read, the treatment you are currently on can have some great results.  Keep up the hope!  I will be thinking of you.

                                                   

                                                  Delora

                                                  delora
                                                  Participant

                                                    Eva,

                                                    I admire your strength and determination.  It sounds like you are an amazing advocate for yourself.  It ticked me off to read what happened with you and the trial.  From what I read, the treatment you are currently on can have some great results.  Keep up the hope!  I will be thinking of you.

                                                     

                                                    Delora

                                                    delora
                                                    Participant

                                                      Eva,

                                                      I admire your strength and determination.  It sounds like you are an amazing advocate for yourself.  It ticked me off to read what happened with you and the trial.  From what I read, the treatment you are currently on can have some great results.  Keep up the hope!  I will be thinking of you.

                                                       

                                                      Delora

                                                    ecc26
                                                    Participant

                                                      Thank you everyone for your kind words and happy stories. It does ease my mind some to read them. I hope I get as good a response and one that lasts as long as some of you have. Only time will tell, I guess. 

                                                      Again, thank you for the positive thoughts and happy stories. I do appreciate this board and the information/support its members provide.

                                                      -Eva

                                                      ecc26
                                                      Participant

                                                        Thank you everyone for your kind words and happy stories. It does ease my mind some to read them. I hope I get as good a response and one that lasts as long as some of you have. Only time will tell, I guess. 

                                                        Again, thank you for the positive thoughts and happy stories. I do appreciate this board and the information/support its members provide.

                                                        -Eva

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