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NO BRAF/MEK trial for Don…could use listening ear/prayers

Forums General Melanoma Community NO BRAF/MEK trial for Don…could use listening ear/prayers

  • Post
    shellebrownies
    Participant

      We got the awful news today that Don does not qualify for the GSK BRAF/MEK trial we had been waiting weeks with baited breath for. Even though he turned out to be positive for the mutation, the cancer has spread so rapidly that his liver function is not high enough to meet qualifications.

      We got the awful news today that Don does not qualify for the GSK BRAF/MEK trial we had been waiting weeks with baited breath for. Even though he turned out to be positive for the mutation, the cancer has spread so rapidly that his liver function is not high enough to meet qualifications.

      Doctor Lawrence admitted Don to the hospital on Wednesday to better manage his pain as well as get his testing done for the trial (we had been in the emergency room that morning because Don was having a new bout of pain in his lower right ribcage area that wasn't being controlled by his pain medications)…it looks like he'll be staying for at least a little while longer. The doctor is now recommending chemotherapy as a last ditch effort to slow down the wild growth and spread to attempt to get his liver function under better control with an eye to possibly get him into the Compassionate Use PLX4032 trial which will be opening in this area soon. He wants Don to start the Chemo Sunday morning. We will both be speaking with Dr. Lawrence in the morning about all the details.

      I could *really* use some prayers/support/hope right now. Having a hard time tonight being able to absorb yet *another* bout of extraordinary bad luck.

      Thanks to you all. You really are a Godsend!

      Michelle, wife of Don, Stage IV 

    Viewing 17 reply threads
    • Replies
        lhaley
        Participant

          Michelle,

          You guys have been beat down every way you've tried.  Did the Dr give you the names of the chemo's that they are thinking of?  Would this be a combination?  You aren't being given time to think.  When you look back on the last few blood tests have they shown a pattern of rising?  Could this possibly be a drug interaction?  I'm only bringing this up because a few months ago I was put on an antibiotic and no one told me to get off of another med that I was on.  I just happened to have my onc appointment and she called me the next morning totally alarmed with my numbers.  I don't want to give false hope but they have tried several new pain killers on Don and you need to make sure that this is not just an interaction issue.  You said the other day that he would run a fever after the medicine.  These are just some questions to ask.

          The immediate goal is for them to find a way to keep Don pain free. Are they calling in Pain Doctors to assist with this?  Glad you guys got with Dr. Lawrence who seems to be responding to Don's needs quickly.

          Sending prayers and hugs,

          Linda

          stage IV

            shellebrownies
            Participant

              Linda,

              Dr. Lawrence did mention the names of the drugs to me last night, but they were in passing since our "real" talk is this morning, so I don't remember what they were. I know there was going to be a combination of  2 different ones. 

              Don has only been on the pain medicine and a little Ativan that he only took a couple of times. Dr. L mentioned that there was a steady downfall of liver function shown through several tests done in the last month.

              I don't doubt his finding, Linda. Don is literally riddled with cancer. Dr. used the term "incredibly aggressive". The CT scan from 5/6 actually said he had "innumerable" small lesions in his liver, and that was 3 weeks ago. A week and a half ago, the mets had gotten so bad in his lower spine that they said that L4 has essentially been replaced by the met and there was met involvement in every vertebrae from T12 down. Every bone in his pelvis is involved, several ribs, the sternum, the tumor in his shoulder was measured at 78x70mm a month ago; I have no idea how much it's grown since then.

              I was in the hospital last night when they tried to switch Don from the IV version of Delotid to pill form in preparation for trying to be able to send him home. He had just received an 8mg dose before I got there; I saw them give him another 2mg and then a second 2mg pill that wasn't touching his pain. They had to go back to the IV to give him relief. It certainly seems to me that his body isn't able to process the oral medications, because he was having the same kind of problems with the oral meds before he went in to the hospital.

              Today when we meet with Dr. L, I will ask about who is managing his pain medicine. The doctor gave the chemo about 30% chance of helping…however he told me he had a patient with a similar situation to Don's who did respond to the chemo, so we still have at least some hope.

              Michelle

              shellebrownies
              Participant

                Linda,

                Dr. Lawrence did mention the names of the drugs to me last night, but they were in passing since our "real" talk is this morning, so I don't remember what they were. I know there was going to be a combination of  2 different ones. 

                Don has only been on the pain medicine and a little Ativan that he only took a couple of times. Dr. L mentioned that there was a steady downfall of liver function shown through several tests done in the last month.

                I don't doubt his finding, Linda. Don is literally riddled with cancer. Dr. used the term "incredibly aggressive". The CT scan from 5/6 actually said he had "innumerable" small lesions in his liver, and that was 3 weeks ago. A week and a half ago, the mets had gotten so bad in his lower spine that they said that L4 has essentially been replaced by the met and there was met involvement in every vertebrae from T12 down. Every bone in his pelvis is involved, several ribs, the sternum, the tumor in his shoulder was measured at 78x70mm a month ago; I have no idea how much it's grown since then.

                I was in the hospital last night when they tried to switch Don from the IV version of Delotid to pill form in preparation for trying to be able to send him home. He had just received an 8mg dose before I got there; I saw them give him another 2mg and then a second 2mg pill that wasn't touching his pain. They had to go back to the IV to give him relief. It certainly seems to me that his body isn't able to process the oral medications, because he was having the same kind of problems with the oral meds before he went in to the hospital.

                Today when we meet with Dr. L, I will ask about who is managing his pain medicine. The doctor gave the chemo about 30% chance of helping…however he told me he had a patient with a similar situation to Don's who did respond to the chemo, so we still have at least some hope.

                Michelle

              lhaley
              Participant

                Michelle,

                You guys have been beat down every way you've tried.  Did the Dr give you the names of the chemo's that they are thinking of?  Would this be a combination?  You aren't being given time to think.  When you look back on the last few blood tests have they shown a pattern of rising?  Could this possibly be a drug interaction?  I'm only bringing this up because a few months ago I was put on an antibiotic and no one told me to get off of another med that I was on.  I just happened to have my onc appointment and she called me the next morning totally alarmed with my numbers.  I don't want to give false hope but they have tried several new pain killers on Don and you need to make sure that this is not just an interaction issue.  You said the other day that he would run a fever after the medicine.  These are just some questions to ask.

                The immediate goal is for them to find a way to keep Don pain free. Are they calling in Pain Doctors to assist with this?  Glad you guys got with Dr. Lawrence who seems to be responding to Don's needs quickly.

                Sending prayers and hugs,

                Linda

                stage IV

                FormerCaregiver
                Participant

                  Sorry to read the bad news about Don being ineligible for the trial. The liver is such an
                  important organ for processing drugs, and mets there are a real concern.  However, do they
                  know for certain what is causing the liver function tests to be abnormal?

                  It sounds like you are in really good hands with Dr Lawrence.

                  My thoughts and prayers are with you and Don.

                  May God bless you.

                  Frank from Australia

                    shellebrownies
                    Participant

                      Frank,

                      Yes, they are pretty sure. His liver is riddled with mets that seem to be getting worse every day. 

                      Thank you for your thoughts and prayers. I very much appreciate it!

                      Michelle

                      FormerCaregiver
                      Participant

                        Michelle, I was just wondering how Don is? What sort of pain medication is he on? Is it
                        effective?

                        Let's hope that they can get the chemo started on Sunday morning.

                        Both of you remain in my prayers.

                        Take care.

                        Frank from Australia

                        FormerCaregiver
                        Participant

                          Michelle, I was just wondering how Don is? What sort of pain medication is he on? Is it
                          effective?

                          Let's hope that they can get the chemo started on Sunday morning.

                          Both of you remain in my prayers.

                          Take care.

                          Frank from Australia

                          shellebrownies
                          Participant

                            Don is doing much better painwise. They have him on an IV PDA of Dilaudid. Before he met with the Palliative care team yesterday, they were doing just IV doses; the PDA seems to be doing a better job and he's not as loopy and tired.

                            Dr. Lawrence kept him in the hospital and had him move to an oncology floor just to make sure they could get him the Chemo on time, so that shouldn't be a problem.

                            shellebrownies
                            Participant

                              Don is doing much better painwise. They have him on an IV PDA of Dilaudid. Before he met with the Palliative care team yesterday, they were doing just IV doses; the PDA seems to be doing a better job and he's not as loopy and tired.

                              Dr. Lawrence kept him in the hospital and had him move to an oncology floor just to make sure they could get him the Chemo on time, so that shouldn't be a problem.

                              shellebrownies
                              Participant

                                Frank,

                                Yes, they are pretty sure. His liver is riddled with mets that seem to be getting worse every day. 

                                Thank you for your thoughts and prayers. I very much appreciate it!

                                Michelle

                              FormerCaregiver
                              Participant

                                Sorry to read the bad news about Don being ineligible for the trial. The liver is such an
                                important organ for processing drugs, and mets there are a real concern.  However, do they
                                know for certain what is causing the liver function tests to be abnormal?

                                It sounds like you are in really good hands with Dr Lawrence.

                                My thoughts and prayers are with you and Don.

                                May God bless you.

                                Frank from Australia

                                NicOz
                                Participant

                                  Well… crap. I'm disappointed for you both, and after 3 years of consistently being ineligible for trials I was interested in, I have a fair idea of how you're feeling at the moment. Michelle, that just sucks. Hoping your next makeshift plan (don't you hate having to change gear all the time?!) works out to your advantage and finds some resolution with the liver and Don on a trial soon.

                                  Am currently having blood taken for LFT's after mine took a bit of a turn for the worse, too… though had to laugh at the coordinator- "You seem to have some issues with your liver function" she informs me seriously. "You don't suppose it's got anything to do with the 3 tumours in it, do you?" *wink* She didn't find me amusing, but most people don't so I'm quite used to that.

                                  Each week I wait for the call that tells me I'm off the BRAF trial, but I have a back up plan! I'm going to kill those cells by drowning them in alcohol if that happens.

                                  Seriously, though- thinking of you both and hoping for some good news from you soon ๐Ÿ™‚

                                  Nic

                                    shellebrownies
                                    Participant

                                      Thanks, Nic. I really appreciate your humor and your good wishes. We will be keeping our fingers crossed that the chemo does something to help Don!

                                      Michelle

                                      shellebrownies
                                      Participant

                                        Thanks, Nic. I really appreciate your humor and your good wishes. We will be keeping our fingers crossed that the chemo does something to help Don!

                                        Michelle

                                        Vermont_Donna
                                        Participant

                                          Good morning,

                                           I look everyday for your updates and just cant believe how fast Don's melanoma is growing. I am hoping that doing some chemo, whatever they are going to suggest will beat the melanoma back enough to allow his liver fucntions to stabilize. I hope they can better manage his pain. Can he be on a pump in the hospital? I have been hospitalized just for pain management after some of my procedures with the swelling I had and the inability to walk. The pain team is remarkable, just keep saying I need more help, this isnt working, and they will come down and try to adjust things. I am following your progress and hoping that Don gets to start the meds you want hom on SOON!!!!

                                          Dont forget to take care of yourself.(Don too)…..eat meals and healhty snacks and nap when he naps, that goes for the kids too, if they are hanging around the hospital too.

                                          Sending positive light and energy,

                                          Vermont_Donna, stage 3a, NED

                                          Vermont_Donna
                                          Participant

                                            Good morning,

                                             I look everyday for your updates and just cant believe how fast Don's melanoma is growing. I am hoping that doing some chemo, whatever they are going to suggest will beat the melanoma back enough to allow his liver fucntions to stabilize. I hope they can better manage his pain. Can he be on a pump in the hospital? I have been hospitalized just for pain management after some of my procedures with the swelling I had and the inability to walk. The pain team is remarkable, just keep saying I need more help, this isnt working, and they will come down and try to adjust things. I am following your progress and hoping that Don gets to start the meds you want hom on SOON!!!!

                                            Dont forget to take care of yourself.(Don too)…..eat meals and healhty snacks and nap when he naps, that goes for the kids too, if they are hanging around the hospital too.

                                            Sending positive light and energy,

                                            Vermont_Donna, stage 3a, NED

                                          NicOz
                                          Participant

                                            Well… crap. I'm disappointed for you both, and after 3 years of consistently being ineligible for trials I was interested in, I have a fair idea of how you're feeling at the moment. Michelle, that just sucks. Hoping your next makeshift plan (don't you hate having to change gear all the time?!) works out to your advantage and finds some resolution with the liver and Don on a trial soon.

                                            Am currently having blood taken for LFT's after mine took a bit of a turn for the worse, too… though had to laugh at the coordinator- "You seem to have some issues with your liver function" she informs me seriously. "You don't suppose it's got anything to do with the 3 tumours in it, do you?" *wink* She didn't find me amusing, but most people don't so I'm quite used to that.

                                            Each week I wait for the call that tells me I'm off the BRAF trial, but I have a back up plan! I'm going to kill those cells by drowning them in alcohol if that happens.

                                            Seriously, though- thinking of you both and hoping for some good news from you soon ๐Ÿ™‚

                                            Nic

                                            Carol Taylor
                                            Participant

                                              Oh Michelle!

                                              I'm so sorry to learn of this setback for Don & you! I know a wonderful older woman who calls all life's glitches "bumps in the road" and for her that's what they are and she deals with them with the attitude that she's got the upper hand because they aren't going to get her down…they may slow her down but they don't get her down.

                                              You guys keep hitting bumps in the road and they're slowing you down, please keep pushing through. I think I can safely say I speak for all of us when I say I wish we had your answers but we don't.

                                              The best I can do is assure you that while I don't hold your answers, I know the One Who does. He knows Don better than anybody and maybe there's something in that trial that, while it sounded good, would have been horrible for Don and made him worse…or worse than worse. While it might appear that you aren't being "looked after," maybe you are but don't see it that way because your hearts were set on this being "it!"

                                              When I was in a car crash in 1999, my air bag went off, broke my left thumb in 2 places and chemically burned my hand. My orthopedic surgeon wanted to put two pins through my thumb that would extend across my hand. The procedure was planned for Thursday…this consultation was on Monday. All day Monday and into Tuesday whenver I thought about those pins I literally got sick. Tuesday afternoon I called and cancelled the pins so when I saw him Thursday it was to put a permanent cast on instead.  He wasn't happy with my decision and told me "You're flying in the face of the best medical advice I can give you." I can still hear him.

                                              When my cast came off it was horrible. It wasn't supposed to be, but it was. The nurse was scared for me. To this day my thumb looks weird (thank goodness my compression glove hides it!). Ortho doc comes in takes one look at my hand and says "RSD has set in." I had never heard of RSD. Sure enough I have this other lifelong condition…that affects EVERY type of tissue. Automatically osteoporosis set into my bones, my muscle reacts, blood vessels react, RA is setting in, it has spread all through that arm. Each separate condition takes on its own life and does what it does…RSD just ushered all this in.

                                              Broken bones in RSD folks aren't supposed to be cast and pins aren't good either because it induces trauma..which causes RSD. So I ask doc on a follow-up visit after getting cast off what I'm to do if I ever break another bone. You know what he voluntarily tells me? "You must have had a bird sitting on your shoulder when you refused those pins. If you had had them, your RSD would have been much much worse."

                                              God didn't remove a condition I've never heard of. He walked me through it. What appeared to have been the best way to deal with my thumb would have made my life unbearable…and melanoma yet to come in that arm!

                                              You're facing a setback…but it could be that this trial for Don would have been like pins for me. It may have made him much much worse.

                                              Lord, in Your mercy, thank You for closing this door. We may not understand, but we have to hold that it's best for Don. Lord, please just make a way. And, in the meantime, give them peace and hope. Amen.

                                              Grace and peace to you Friend,

                                              Carol

                                                Great story and something to hang onto Carol.

                                                Thank you.  Sending you with lots of love and prayers.

                                                Shelly in Switzerland

                                                Great story and something to hang onto Carol.

                                                Thank you.  Sending you with lots of love and prayers.

                                                Shelly in Switzerland

                                              Carol Taylor
                                              Participant

                                                Oh Michelle!

                                                I'm so sorry to learn of this setback for Don & you! I know a wonderful older woman who calls all life's glitches "bumps in the road" and for her that's what they are and she deals with them with the attitude that she's got the upper hand because they aren't going to get her down…they may slow her down but they don't get her down.

                                                You guys keep hitting bumps in the road and they're slowing you down, please keep pushing through. I think I can safely say I speak for all of us when I say I wish we had your answers but we don't.

                                                The best I can do is assure you that while I don't hold your answers, I know the One Who does. He knows Don better than anybody and maybe there's something in that trial that, while it sounded good, would have been horrible for Don and made him worse…or worse than worse. While it might appear that you aren't being "looked after," maybe you are but don't see it that way because your hearts were set on this being "it!"

                                                When I was in a car crash in 1999, my air bag went off, broke my left thumb in 2 places and chemically burned my hand. My orthopedic surgeon wanted to put two pins through my thumb that would extend across my hand. The procedure was planned for Thursday…this consultation was on Monday. All day Monday and into Tuesday whenver I thought about those pins I literally got sick. Tuesday afternoon I called and cancelled the pins so when I saw him Thursday it was to put a permanent cast on instead.  He wasn't happy with my decision and told me "You're flying in the face of the best medical advice I can give you." I can still hear him.

                                                When my cast came off it was horrible. It wasn't supposed to be, but it was. The nurse was scared for me. To this day my thumb looks weird (thank goodness my compression glove hides it!). Ortho doc comes in takes one look at my hand and says "RSD has set in." I had never heard of RSD. Sure enough I have this other lifelong condition…that affects EVERY type of tissue. Automatically osteoporosis set into my bones, my muscle reacts, blood vessels react, RA is setting in, it has spread all through that arm. Each separate condition takes on its own life and does what it does…RSD just ushered all this in.

                                                Broken bones in RSD folks aren't supposed to be cast and pins aren't good either because it induces trauma..which causes RSD. So I ask doc on a follow-up visit after getting cast off what I'm to do if I ever break another bone. You know what he voluntarily tells me? "You must have had a bird sitting on your shoulder when you refused those pins. If you had had them, your RSD would have been much much worse."

                                                God didn't remove a condition I've never heard of. He walked me through it. What appeared to have been the best way to deal with my thumb would have made my life unbearable…and melanoma yet to come in that arm!

                                                You're facing a setback…but it could be that this trial for Don would have been like pins for me. It may have made him much much worse.

                                                Lord, in Your mercy, thank You for closing this door. We may not understand, but we have to hold that it's best for Don. Lord, please just make a way. And, in the meantime, give them peace and hope. Amen.

                                                Grace and peace to you Friend,

                                                Carol

                                                Carmon in NM
                                                Participant

                                                  My prayers and hopes for you both that you will finally get a break on this horribly rough rode you have been on. It's good that they have Don where they can stay on top of and manage his pain on a constant basis. There is nothing that pulls you down more than constant pain.

                                                  I was on a combination drug trial of carboplatin, paclitaxol and temodar and I'm currently NED so these combos can work really well. I hope so much that Don responds like I did.

                                                  Carmon in NM – Stage IIIb 9/2008, Stage IV 6/2010 with brain and adrenal mets, NED since 4/13/2011

                                                    boot2aboot
                                                    Participant

                                                      what the frack with all these delays…i agree with carmen…chemotherapy …sunday can't come soon enough…i am sick of hearing about this or that…don needs something NOW…i am getting really angry about this and i don't even know don…

                                                      boots

                                                      boot2aboot
                                                      Participant

                                                        what the frack with all these delays…i agree with carmen…chemotherapy …sunday can't come soon enough…i am sick of hearing about this or that…don needs something NOW…i am getting really angry about this and i don't even know don…

                                                        boots

                                                      Carmon in NM
                                                      Participant

                                                        My prayers and hopes for you both that you will finally get a break on this horribly rough rode you have been on. It's good that they have Don where they can stay on top of and manage his pain on a constant basis. There is nothing that pulls you down more than constant pain.

                                                        I was on a combination drug trial of carboplatin, paclitaxol and temodar and I'm currently NED so these combos can work really well. I hope so much that Don responds like I did.

                                                        Carmon in NM – Stage IIIb 9/2008, Stage IV 6/2010 with brain and adrenal mets, NED since 4/13/2011

                                                        Lori C
                                                        Participant

                                                          Hi Michelle, I am sorry about the setback.  Will had innumerable liver mets as well and the combination chemo of Taxol & carboplatin *did* help.  In his case, his extremely high LDH and the fact that 80% of his liver was mets finally meant that he was just unable to handle the toxicity but the chemo WAS working and if just a few factors had been different, I believe it would have turned out better.  It is certainly possible that the combo chemo will work in your case and that it will stabilize things enough to allow for better treatment. 

                                                          Lori

                                                          Lori C
                                                          Participant

                                                            Hi Michelle, I am sorry about the setback.  Will had innumerable liver mets as well and the combination chemo of Taxol & carboplatin *did* help.  In his case, his extremely high LDH and the fact that 80% of his liver was mets finally meant that he was just unable to handle the toxicity but the chemo WAS working and if just a few factors had been different, I believe it would have turned out better.  It is certainly possible that the combo chemo will work in your case and that it will stabilize things enough to allow for better treatment. 

                                                            Lori

                                                            Prayers are on their way!.  I am sorry that this is where you are at.  I had to beg and plead to get my Braf back even though it was proving to work on on chest tumors.  Then along came the brain mets and a few other complications.  With me in the hospital they couldn't come up with a good reason why my huband couln't drive to Zurich and get the pils…

                                                            Oh well,, here I lie, in a hosp be with nothing better to do but listen to women of faith videos and music.  My prayers are with you, surrounding you with love, light, and peace.

                                                            Shelly In Switzerland

                                                            Prayers are on their way!.  I am sorry that this is where you are at.  I had to beg and plead to get my Braf back even though it was proving to work on on chest tumors.  Then along came the brain mets and a few other complications.  With me in the hospital they couldn't come up with a good reason why my huband couln't drive to Zurich and get the pils…

                                                            Oh well,, here I lie, in a hosp be with nothing better to do but listen to women of faith videos and music.  My prayers are with you, surrounding you with love, light, and peace.

                                                            Shelly In Switzerland

                                                            shellebrownies
                                                            Participant

                                                              UPDATE:

                                                              We met with Dr. Lawrence in the hospital yesterday morning and we went through everything. He explained that Don's liver numbers were high, too high to get into the trial. That being said, he told us that they weren't too much over (3x upper limit instead of the allowed 2 1/2x). He told us that there was a slim chance that the test could have been a spike if Don was experiencing a bleed into one of his liver tumors (which wasn't out of the question due to the suddenness of the pain that came on under his ribcage), and that if it had resolved itself, the numbers could come back down. 

                                                              To that end, he said that, even though it was a bit of a long shot, he was going to have them test Don's blood again yesterday afternoon and again on Sunday morning. If it showed that his levels have come back down into allowable levels, he may yet be able to get him into the trial. If not, they will be starting the Chemo.

                                                              He is going to get a combo of Paclitaxel (Taxol) and Carboplatin, which I saw a couple people mention worked for them, so that gives me some hope. Dr. L said they would know before he needs the next bag in 3 weeks whether it is working or not. 

                                                              Dr. L said he was going to bring the Palliative Care team on board with our team, but he was quick to stress that he was not leaving us in their care; that he was still lead on Don's case for as long as we wanted him to be. He just felt they could be helpful in better managing Don's pain and come up with a pain management plan that would work in allowing him to come home after his Chemo treatment.

                                                              So far, that seems to be the case. After the 1st consultation with the Palliative care Dr., they decided to put Don on a PDA for the IV Delaudid he'd been getting. This seems to be a home run choice, because he is more evenly getting dosed and doesn't have to wait for nurse/doctor to administer more if he has break out pain.

                                                              Michelle

                                                                FormerCaregiver
                                                                Participant

                                                                  Thanks for the update. It sounds like Don's liver tumours are fairly small, and sudden
                                                                  pain under the ribcage has meant that one has bled.

                                                                  I hope that the blood tests will give you some good news. The chemo drugs that you have
                                                                  mentioned could work well.

                                                                  It is good that a pain management plan is going to be put into place. Modern pain
                                                                  relieving drugs are very effective.

                                                                  Patient-controlled analgesia is certainly very good for break out pain.

                                                                  Take care.

                                                                  Frank from Australia

                                                                  FormerCaregiver
                                                                  Participant

                                                                    Thanks for the update. It sounds like Don's liver tumours are fairly small, and sudden
                                                                    pain under the ribcage has meant that one has bled.

                                                                    I hope that the blood tests will give you some good news. The chemo drugs that you have
                                                                    mentioned could work well.

                                                                    It is good that a pain management plan is going to be put into place. Modern pain
                                                                    relieving drugs are very effective.

                                                                    Patient-controlled analgesia is certainly very good for break out pain.

                                                                    Take care.

                                                                    Frank from Australia

                                                                  shellebrownies
                                                                  Participant

                                                                    UPDATE:

                                                                    We met with Dr. Lawrence in the hospital yesterday morning and we went through everything. He explained that Don's liver numbers were high, too high to get into the trial. That being said, he told us that they weren't too much over (3x upper limit instead of the allowed 2 1/2x). He told us that there was a slim chance that the test could have been a spike if Don was experiencing a bleed into one of his liver tumors (which wasn't out of the question due to the suddenness of the pain that came on under his ribcage), and that if it had resolved itself, the numbers could come back down. 

                                                                    To that end, he said that, even though it was a bit of a long shot, he was going to have them test Don's blood again yesterday afternoon and again on Sunday morning. If it showed that his levels have come back down into allowable levels, he may yet be able to get him into the trial. If not, they will be starting the Chemo.

                                                                    He is going to get a combo of Paclitaxel (Taxol) and Carboplatin, which I saw a couple people mention worked for them, so that gives me some hope. Dr. L said they would know before he needs the next bag in 3 weeks whether it is working or not. 

                                                                    Dr. L said he was going to bring the Palliative Care team on board with our team, but he was quick to stress that he was not leaving us in their care; that he was still lead on Don's case for as long as we wanted him to be. He just felt they could be helpful in better managing Don's pain and come up with a pain management plan that would work in allowing him to come home after his Chemo treatment.

                                                                    So far, that seems to be the case. After the 1st consultation with the Palliative care Dr., they decided to put Don on a PDA for the IV Delaudid he'd been getting. This seems to be a home run choice, because he is more evenly getting dosed and doesn't have to wait for nurse/doctor to administer more if he has break out pain.

                                                                    Michelle

                                                                    mahdusia
                                                                    Participant

                                                                      Michelle,

                                                                      do you have any news about the compassionate use of plx4032?

                                                                      Did you also check the plx trials in Switzerland – they acccept people with advanced tumors and high liver disfunction  – so maybe it'd be worth trying?

                                                                      regards

                                                                      Magda

                                                                      mahdusia
                                                                      Participant

                                                                        Michelle,

                                                                        do you have any news about the compassionate use of plx4032?

                                                                        Did you also check the plx trials in Switzerland – they acccept people with advanced tumors and high liver disfunction  – so maybe it'd be worth trying?

                                                                        regards

                                                                        Magda

                                                                          shellebrownies
                                                                          Participant

                                                                            Magda,

                                                                            I know nothing more about the compassionate use trial other than what Dr. Lawrence said; that one would be opening in the next few weeks. 

                                                                            I will look into whether the trial is available elsewhere right now and if he would qualify. Now that he has had systemic treatment, I don't know how that affects his chances of getting into other trials. 

                                                                            But thanks, I will look into that! ๐Ÿ™‚

                                                                            Michelle

                                                                            mahdusia
                                                                            Participant

                                                                              Michelle,

                                                                              this is the link for Switzerland trial:
                                                                               

                                                                              http://www.roche-trials.com/trialDetailsGet.action?studyNumber=MO25653&productGenericName=RO5185426&productType=Drug

                                                                               

                                                                              I have also the e-mail for coordinator, I can send you to your private e-mail – I got it from Shelly.

                                                                              Your husband is treated in Massachusets General, isn't he?

                                                                              regards

                                                                              Magda

                                                                              shellebrownies
                                                                              Participant

                                                                                I looked at the link and, believe it or not, of all the places Don does have melanoma, his brain isn't one of them…. big sigh.

                                                                                He is being treated at Massachusetts General, though. 

                                                                                Michelle

                                                                                shellebrownies
                                                                                Participant

                                                                                  I looked at the link and, believe it or not, of all the places Don does have melanoma, his brain isn't one of them…. big sigh.

                                                                                  He is being treated at Massachusetts General, though. 

                                                                                  Michelle

                                                                                  mahdusia
                                                                                  Participant

                                                                                    Michelle,

                                                                                    this is the link for Switzerland trial:
                                                                                     

                                                                                    http://www.roche-trials.com/trialDetailsGet.action?studyNumber=MO25653&productGenericName=RO5185426&productType=Drug

                                                                                     

                                                                                    I have also the e-mail for coordinator, I can send you to your private e-mail – I got it from Shelly.

                                                                                    Your husband is treated in Massachusets General, isn't he?

                                                                                    regards

                                                                                    Magda

                                                                                    shellebrownies
                                                                                    Participant

                                                                                      Magda,

                                                                                      I know nothing more about the compassionate use trial other than what Dr. Lawrence said; that one would be opening in the next few weeks. 

                                                                                      I will look into whether the trial is available elsewhere right now and if he would qualify. Now that he has had systemic treatment, I don't know how that affects his chances of getting into other trials. 

                                                                                      But thanks, I will look into that! ๐Ÿ™‚

                                                                                      Michelle

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