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Up to Stage 4….Brain Mets, Chest Mets, Ab Lymph Node Mets SO FAST!

Forums General Melanoma Community Up to Stage 4….Brain Mets, Chest Mets, Ab Lymph Node Mets SO FAST!

  • Post
    jax2007gxp
    Participant

      Hi All,

      Well, I'm writing to you from my bed at UCI Medical Center in So Cal.  After a couple of weeks of increasing feelings of yuckiness (nausea, chest pain, fatigue), I finally went to the ER where CT scans were done on my chest and brain (due to a comment I made about loss of coordination in my right hand).  Scans revealed tumors in my brain and one in my chest cavity.

      Hi All,

      Well, I'm writing to you from my bed at UCI Medical Center in So Cal.  After a couple of weeks of increasing feelings of yuckiness (nausea, chest pain, fatigue), I finally went to the ER where CT scans were done on my chest and brain (due to a comment I made about loss of coordination in my right hand).  Scans revealed tumors in my brain and one in my chest cavity.

      Since then, a brain MRI was conducted revealing between 8 and 11 tumors, only 3 or 4 of substantial size (approx 2cm) with the rest being 1 to 2 mm.  I've also had a spinal MRI but no results yet and they are scheduling a lumbar puncture for today…I'm hoping the lumbar puncture means no spinal tumors showed up, otherwise why look for microscopic evidence?

      The tumor in my chest is 4.4 cm and there is an abdominal lymph node which looks suspicious…not to mention that spot I've been feeling for a couple of weeks in my left groin.

      So….none of this showed up in scans on 9/6/11, but is definitely present now.  Preliminary recommendations are (1) whole brain radiation; (2) gamma knife on the larger brain tumors, and (3) systemic therapy likely Yervoy.  Concern over yervoy is TIME.  If we can't get ahead of the brain tumors by using the yervoy to shrink the body tumors, we may need to switch gears partway through the treatment according to the oncologist leading my team.  He has calls out to colleagues all over the US to get multiple opinions and experiences in cases like mine.

      Any thoughts or contributions anyone can make are totally appreciated!  This all has happened so fast…I was just trying to wrap myself around a IIIc diagnosis so I really haven't done a lot of stage 4 research.

      Many thanks for all of your input!

      Jacki

    Viewing 26 reply threads
    • Replies
        jag
        Participant

          Jacki, that sounds like a reasonable strategy to me.  What might help give you time though is get a dose of Yervoy, and then get in a BRAF trial to shrink things down if you are BRAF +

          Regards and don't panic.

          John

          jag
          Participant

            Jacki, that sounds like a reasonable strategy to me.  What might help give you time though is get a dose of Yervoy, and then get in a BRAF trial to shrink things down if you are BRAF +

            Regards and don't panic.

            John

              jax2007gxp
              Participant

                Thanks, John.  Unfortunately, I am BRAF negative so I can't get into one of those trials.  But I am glad yervoy is out there as a newer option for treating this bastard of a disease!

                I think I am past panicking and am now accepting that everything happens in God's time, not mine.  If this is His plan for me, there must be some reason I will only learn of when I someday see His face.  But I will be looking for those opportunities to bring purpose to all that is happening to me until that time comes.

                Jacki

                jax2007gxp
                Participant

                  Thanks, John.  Unfortunately, I am BRAF negative so I can't get into one of those trials.  But I am glad yervoy is out there as a newer option for treating this bastard of a disease!

                  I think I am past panicking and am now accepting that everything happens in God's time, not mine.  If this is His plan for me, there must be some reason I will only learn of when I someday see His face.  But I will be looking for those opportunities to bring purpose to all that is happening to me until that time comes.

                  Jacki

                  jax2007gxp
                  Participant

                    Thanks, John.  Unfortunately, I am BRAF negative so I can't get into one of those trials.  But I am glad yervoy is out there as a newer option for treating this bastard of a disease!

                    I think I am past panicking and am now accepting that everything happens in God's time, not mine.  If this is His plan for me, there must be some reason I will only learn of when I someday see His face.  But I will be looking for those opportunities to bring purpose to all that is happening to me until that time comes.

                    Jacki

                  jag
                  Participant

                    Jacki, that sounds like a reasonable strategy to me.  What might help give you time though is get a dose of Yervoy, and then get in a BRAF trial to shrink things down if you are BRAF +

                    Regards and don't panic.

                    John

                    justlittleoleme
                    Participant

                      Jacki,

                      Prayers for you.  Have to say it is scary to think about how fast things can change!

                      Praying that your team can gather information and help guide you in your decision making.

                      barb

                      justlittleoleme
                      Participant

                        Jacki,

                        Prayers for you.  Have to say it is scary to think about how fast things can change!

                        Praying that your team can gather information and help guide you in your decision making.

                        barb

                          jax2007gxp
                          Participant

                            Thanks, Barb.  I'll take all the prayers I can get!!!

                            Jacki

                            jax2007gxp
                            Participant

                              Thanks, Barb.  I'll take all the prayers I can get!!!

                              Jacki

                              jax2007gxp
                              Participant

                                Thanks, Barb.  I'll take all the prayers I can get!!!

                                Jacki

                              justlittleoleme
                              Participant

                                Jacki,

                                Prayers for you.  Have to say it is scary to think about how fast things can change!

                                Praying that your team can gather information and help guide you in your decision making.

                                barb

                                Phil S
                                Participant
                                  Jacki, So sorry to see your post, and the recent scan results. My husband was diagnosed with brain mets one month ago, and he also has several areas of body mets, so I can definitely relate. However, after I cried a few days, we were a little scared before his craniotomy, we regrouped and planned our attack! Phil is now undergoing WBR, and is doing okay! He is set to start yervoy mid November after we are finished with radiation. However, we are first flying to md Anderson for their opinion. You just have to absorb the Stage IV news, let yourself feel all the emotions, find yourself a good support team (you can’t be an island), trust your medical team or find one you have confidence in, and fight back those cancer cells with all your might. You can do this, put on your gloves and FIGHT! God Bless, and know there are plenty of us sending you positive vibes and healing thoughts! Valerie (Phil’s wife)
                                  Phil S
                                  Participant
                                    Jacki, So sorry to see your post, and the recent scan results. My husband was diagnosed with brain mets one month ago, and he also has several areas of body mets, so I can definitely relate. However, after I cried a few days, we were a little scared before his craniotomy, we regrouped and planned our attack! Phil is now undergoing WBR, and is doing okay! He is set to start yervoy mid November after we are finished with radiation. However, we are first flying to md Anderson for their opinion. You just have to absorb the Stage IV news, let yourself feel all the emotions, find yourself a good support team (you can’t be an island), trust your medical team or find one you have confidence in, and fight back those cancer cells with all your might. You can do this, put on your gloves and FIGHT! God Bless, and know there are plenty of us sending you positive vibes and healing thoughts! Valerie (Phil’s wife)
                                    Phil S
                                    Participant
                                      Jacki, So sorry to see your post, and the recent scan results. My husband was diagnosed with brain mets one month ago, and he also has several areas of body mets, so I can definitely relate. However, after I cried a few days, we were a little scared before his craniotomy, we regrouped and planned our attack! Phil is now undergoing WBR, and is doing okay! He is set to start yervoy mid November after we are finished with radiation. However, we are first flying to md Anderson for their opinion. You just have to absorb the Stage IV news, let yourself feel all the emotions, find yourself a good support team (you can’t be an island), trust your medical team or find one you have confidence in, and fight back those cancer cells with all your might. You can do this, put on your gloves and FIGHT! God Bless, and know there are plenty of us sending you positive vibes and healing thoughts! Valerie (Phil’s wife)
                                      momof2kids
                                      Participant

                                        So sorry to hear about your newest scans, especially the Brain Mets, and how many in such a short time (these scare me as well having already had 2 spots, I now see how they grow so fast in others, in less than a month or two and I fear the same in myself that I will end up with a bunch).

                                        I've had the Gamma Knife, if you've never had it, it's not bad at all (at least for me). I still have some residual tenderness where they attached the holder to my head to keep my head still. 

                                        Never had Whole Brain Radiation, can't relate there.

                                        I just wish you all the luck getting rid of these damn tumors!

                                         

                                        momof2kids
                                        Participant

                                          So sorry to hear about your newest scans, especially the Brain Mets, and how many in such a short time (these scare me as well having already had 2 spots, I now see how they grow so fast in others, in less than a month or two and I fear the same in myself that I will end up with a bunch).

                                          I've had the Gamma Knife, if you've never had it, it's not bad at all (at least for me). I still have some residual tenderness where they attached the holder to my head to keep my head still. 

                                          Never had Whole Brain Radiation, can't relate there.

                                          I just wish you all the luck getting rid of these damn tumors!

                                           

                                          momof2kids
                                          Participant

                                            So sorry to hear about your newest scans, especially the Brain Mets, and how many in such a short time (these scare me as well having already had 2 spots, I now see how they grow so fast in others, in less than a month or two and I fear the same in myself that I will end up with a bunch).

                                            I've had the Gamma Knife, if you've never had it, it's not bad at all (at least for me). I still have some residual tenderness where they attached the holder to my head to keep my head still. 

                                            Never had Whole Brain Radiation, can't relate there.

                                            I just wish you all the luck getting rid of these damn tumors!

                                             

                                            lhaley
                                            Participant

                                              Jacki,

                                              I am in shock for you, especially since your recent scans had been so good.   You sound like you are handling and ready to fight. 

                                              They are treating you quickly and taking care of you.  I wish there were words to tell you, but I'm sending cyber hugs and love.   If you need to talk just send me a message and I would be glad to talk to you.  I've found in the last few weeks sometimes it just helps to listen.

                                              Linda

                                              [email protected]

                                               

                                                killmel
                                                Participant

                                                  Jacki..please think through your decisions very carefully when thinking about doing WBR.

                                                  posts by shellebrownie 10/21/2011

                                                  I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

                                                  When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

                                                  Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

                                                  And before people tell me we shouldn't take that for an answer and to get second opinions… I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

                                                  I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

                                                  This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

                                                  Thanks; you all are awesome!

                                                  Michelle, wife of Don

                                                  UPDATE:

                                                  First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                  The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                  Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                  Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                  The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                  I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                  Michelle

                                                  deardad
                                                  Participant

                                                    Sorry Michelle, that's really heart breaking. It sounds like the disease has really gotten away and I can't imagine how difficult it must be to see your loved one not being themselves and deteriorate like that. My thoughts are with you and your family and I pray that you have the continued strength to deal with difficult time. Hoping Don can stabilise.

                                                    Nahmi from Melbourne

                                                    deardad
                                                    Participant

                                                      Jacki I'm sorry to hear that you are stage 4, there are many stage 4 survivors on this board so don't give up hope and stay positive. 

                                                      Take care

                                                      Nahmi from Melbourne

                                                      deardad
                                                      Participant

                                                        Jacki I'm sorry to hear that you are stage 4, there are many stage 4 survivors on this board so don't give up hope and stay positive. 

                                                        Take care

                                                        Nahmi from Melbourne

                                                        deardad
                                                        Participant

                                                          Jacki I'm sorry to hear that you are stage 4, there are many stage 4 survivors on this board so don't give up hope and stay positive. 

                                                          Take care

                                                          Nahmi from Melbourne

                                                          deardad
                                                          Participant

                                                            Sorry Michelle, that's really heart breaking. It sounds like the disease has really gotten away and I can't imagine how difficult it must be to see your loved one not being themselves and deteriorate like that. My thoughts are with you and your family and I pray that you have the continued strength to deal with difficult time. Hoping Don can stabilise.

                                                            Nahmi from Melbourne

                                                            deardad
                                                            Participant

                                                              Sorry Michelle, that's really heart breaking. It sounds like the disease has really gotten away and I can't imagine how difficult it must be to see your loved one not being themselves and deteriorate like that. My thoughts are with you and your family and I pray that you have the continued strength to deal with difficult time. Hoping Don can stabilise.

                                                              Nahmi from Melbourne

                                                              shellebrownies
                                                              Participant

                                                                To try and defend WBR, I thought I would say 2 things:

                                                                It is unlikely that the WBR did much but allow the symptoms of edema to present faster. The majority of my husband's swelling was from tumors bleeding into themselves, not from the WBR.

                                                                And two, my husband was well yesterday; as in back to himself normal well. Now, how long that will last is anyone's guess, but don't be afraid of WBR due to our experience. In retrospect, I doubt very much the treatment had much to do with what happened to him. 

                                                                In other words, had his tumors not been bleeding, it is quite possible that he would not have had enough swelling to cause any problems and/or could have easily been treated with a little steroids.

                                                                Furthermore, if you look down the thread here a couple pages, there was a very encouraging post entitled something like: My experience with WBR. It is also worth reading.

                                                                Michelle, wife of Don

                                                                 

                                                                PS- I think that the plan that our doctor had for Don prior to his complications was a good one: radiation to treat the brain and any other area that could grow out of hand in the interim while you wait for the Yervoy to take effect. Wishing you the very best of luck with your treatment!

                                                                jax2007gxp
                                                                Participant

                                                                  Thanks, Michelle.  I appreciate your words and your take on what is going on with Don.  And I am SOOO excited he is improving.  I will keep him in my prayers for wellness and for your peace as you continue to fight beside him!

                                                                  jax2007gxp
                                                                  Participant

                                                                    Thanks, Michelle.  I appreciate your words and your take on what is going on with Don.  And I am SOOO excited he is improving.  I will keep him in my prayers for wellness and for your peace as you continue to fight beside him!

                                                                    jax2007gxp
                                                                    Participant

                                                                      Thanks, Michelle.  I appreciate your words and your take on what is going on with Don.  And I am SOOO excited he is improving.  I will keep him in my prayers for wellness and for your peace as you continue to fight beside him!

                                                                      shellebrownies
                                                                      Participant

                                                                        To try and defend WBR, I thought I would say 2 things:

                                                                        It is unlikely that the WBR did much but allow the symptoms of edema to present faster. The majority of my husband's swelling was from tumors bleeding into themselves, not from the WBR.

                                                                        And two, my husband was well yesterday; as in back to himself normal well. Now, how long that will last is anyone's guess, but don't be afraid of WBR due to our experience. In retrospect, I doubt very much the treatment had much to do with what happened to him. 

                                                                        In other words, had his tumors not been bleeding, it is quite possible that he would not have had enough swelling to cause any problems and/or could have easily been treated with a little steroids.

                                                                        Furthermore, if you look down the thread here a couple pages, there was a very encouraging post entitled something like: My experience with WBR. It is also worth reading.

                                                                        Michelle, wife of Don

                                                                         

                                                                        PS- I think that the plan that our doctor had for Don prior to his complications was a good one: radiation to treat the brain and any other area that could grow out of hand in the interim while you wait for the Yervoy to take effect. Wishing you the very best of luck with your treatment!

                                                                        shellebrownies
                                                                        Participant

                                                                          To try and defend WBR, I thought I would say 2 things:

                                                                          It is unlikely that the WBR did much but allow the symptoms of edema to present faster. The majority of my husband's swelling was from tumors bleeding into themselves, not from the WBR.

                                                                          And two, my husband was well yesterday; as in back to himself normal well. Now, how long that will last is anyone's guess, but don't be afraid of WBR due to our experience. In retrospect, I doubt very much the treatment had much to do with what happened to him. 

                                                                          In other words, had his tumors not been bleeding, it is quite possible that he would not have had enough swelling to cause any problems and/or could have easily been treated with a little steroids.

                                                                          Furthermore, if you look down the thread here a couple pages, there was a very encouraging post entitled something like: My experience with WBR. It is also worth reading.

                                                                          Michelle, wife of Don

                                                                           

                                                                          PS- I think that the plan that our doctor had for Don prior to his complications was a good one: radiation to treat the brain and any other area that could grow out of hand in the interim while you wait for the Yervoy to take effect. Wishing you the very best of luck with your treatment!

                                                                          killmel
                                                                          Participant

                                                                            Jacki..please think through your decisions very carefully when thinking about doing WBR.

                                                                            posts by shellebrownie 10/21/2011

                                                                            I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

                                                                            When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

                                                                            Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

                                                                            And before people tell me we shouldn't take that for an answer and to get second opinions… I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

                                                                            I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

                                                                            This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

                                                                            Thanks; you all are awesome!

                                                                            Michelle, wife of Don

                                                                            UPDATE:

                                                                            First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                                            The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                                            Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                                            Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                                            The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                                            I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                                            Michelle

                                                                            killmel
                                                                            Participant

                                                                              Jacki..please think through your decisions very carefully when thinking about doing WBR.

                                                                              posts by shellebrownie 10/21/2011

                                                                              I'm sorry to report a sad update. Don has developed complications due to his brain tumors. He started Whole Brain Radiation this past Monday. Each day since, Don's short term memory and general confusion got worse and worse. By Wednesday evening, he was mumbling, confused, couldn't figure out how to do simple tasks like sitting from a stand without help. 

                                                                              When he finally complained of feeling dizzy and having a headache late Wednesday night, I called his oncologist. He recommended I give him a dose of steroids and see how he is doing in the morning.If he was better, then he should go to his radiation appointment as normal. If not, I should bring him in to Mass General to be admitted. Yesterday morning he was no better, in fact, his sense of equilibrium was completely shot and he was drifting in and out of sleep.

                                                                              Long story short: He has brain edema and they suspect that at least one of his lesions is bleeding. As of today, he had bounced back a bit (was awake and alert, but his short term memory is still completely shot ) due to the steriods they are giving him. Dr. Lawrence came in today and told me that, with the new setback, he doesn't think that Don's cancer is still curable, that the progression is just too far ahead of any treatment they could provide that might heal him.

                                                                              And before people tell me we shouldn't take that for an answer and to get second opinions… I think he's right. Don's cancer has always been very, very aggressive. I won't be at all surprised to hear that the new MRI they are doing today will show more mets, bleeding, etc. Even with continuing steriod and radiation treatment, it seems highly unlikely they are going to be able to get ahead of it before it's done too much damage to be repaired, let alone let him live long enough to wait for ipi to take effect.

                                                                              I don't yet know prognosis based on what is going on now (that we should know as soon as they get a good MRI).

                                                                              This has been a difficult week; I would really appreciate your prayers and good thoughts right now.

                                                                              Thanks; you all are awesome!

                                                                              Michelle, wife of Don

                                                                              UPDATE:

                                                                              First, thanks everyone for your kind replies and prayers. You guys really are awesome and wonderful!

                                                                              The day after I had brought Don to Mass General to be admitted (Friday), he had bounced back a bit after massive doses of steroids. He was awake and alert, speaking clearly, and able to carry on simple conversations in fits and starts. His short term memory was still completely shot, though, and I had to remind him several times where he was and why he was there. Obviously, he recognized me as well as Dr. Lawrence, but I doubt he actually retained much of anything the Dr. Lawrence told us.

                                                                              Because he was now awake, they put him on an all liquid diet. But because he was a fall risk, he was not allowed out of bed (which drove him a bit stir crazy at times). He could not figure out how to use the nurse call button or how to change the channels on the TV. He could not make decisions if it required choosing between 2 or more things. (I would have to ask "Do you want milk?" and wait for yes or no instead of asking "Do you want milk or juice?" and have him choose between the 2.)

                                                                              Yesterday, he seemed even a little bit better. He recognized the floor oncologist he'd seen the night before. They had lifted his food restriction and he was eating a normal lunch when I got there. He called me  "Shelly" instead of Michelle, which is his normal nickname for me. I was told he'd been asked about his family and was able to tell the nurse about all his siblings. Yet, the short term memory issues and decision-making losses were the same. And he seemed more jittery and edgy, more restless and not as easily calmed when he was told he couldn't do something. And he would get tired after a little while, as if the process of thinking was hard work and it tired him out. However, the kids and I had a nice visit with him, and it was nice for the kids to see him a bit better after some of the disturbing things they'd witnessed him do this week.

                                                                              The oncologist told me that they were not able to complete an MRI on Don after 2 tries (once, the day he arrived…he became too agitated in the machine, the second Friday afternoon. Even after giving him Ativan to calm down, he was too frightened and anxious for them to continue the test). They determined it wasn't in Don's best interest to take more drastic measures to get the scan (strapping him to the table, using high doses of sedative, etc). However, from the partial information they had gathered from the scans, they could determine that there was indeed swelling and that it appeared that his tumors were bleeding but inside the tumors and not onto the brain. They were going to try to wean him down off the steroids and see what happened.

                                                                              I called the nurse this morning to see how he was doing, and she told me he was not doing as well as yesterday. They had weaned him down one click on the steroids and he did not appear to be as alert, although when the doctor asked him questions, he answered them all correctly (what year it was, etc). She also said he is becoming more stir crazy, that he actually ripped out his IV line last night. They had to add a sedative to his regimen to keep him calm. Hearing this, I decided not to bring the kids in today. I don't know what this might mean for Don if even coming down one click on his steroid dose has brought decreased functionality.

                                                                              Michelle

                                                                            lhaley
                                                                            Participant

                                                                              Jacki,

                                                                              I am in shock for you, especially since your recent scans had been so good.   You sound like you are handling and ready to fight. 

                                                                              They are treating you quickly and taking care of you.  I wish there were words to tell you, but I'm sending cyber hugs and love.   If you need to talk just send me a message and I would be glad to talk to you.  I've found in the last few weeks sometimes it just helps to listen.

                                                                              Linda

                                                                              [email protected]

                                                                               

                                                                              lhaley
                                                                              Participant

                                                                                Jacki,

                                                                                I am in shock for you, especially since your recent scans had been so good.   You sound like you are handling and ready to fight. 

                                                                                They are treating you quickly and taking care of you.  I wish there were words to tell you, but I'm sending cyber hugs and love.   If you need to talk just send me a message and I would be glad to talk to you.  I've found in the last few weeks sometimes it just helps to listen.

                                                                                Linda

                                                                                [email protected]

                                                                                 

                                                                                mombase
                                                                                Participant

                                                                                  Dear Jacki,

                                                                                  I am so sorry that you have to change gears so quickly…this disease is totally a bad roller coaster ride sometimes! Anyway, I am glad that  your onc will be getting a lot of other opinions. Originally, my team wanted to do WBR on me after my one large brain tumor was resected. I opted not to because of my age (almost 60) and the hope that I wouldn't have any rogue cells left in the tissue. The combination of those two directed my decision to politely decline the WBR until I really needed it.  I don't know your age, but the younger you are, the less likely some of the nasty side effects  will occur. I pray that you find comfort and confidence in whatever decision you decide to make!

                                                                                  Sincerely,

                                                                                  Cristy, Stage IV

                                                                                  mombase
                                                                                  Participant

                                                                                    Dear Jacki,

                                                                                    I am so sorry that you have to change gears so quickly…this disease is totally a bad roller coaster ride sometimes! Anyway, I am glad that  your onc will be getting a lot of other opinions. Originally, my team wanted to do WBR on me after my one large brain tumor was resected. I opted not to because of my age (almost 60) and the hope that I wouldn't have any rogue cells left in the tissue. The combination of those two directed my decision to politely decline the WBR until I really needed it.  I don't know your age, but the younger you are, the less likely some of the nasty side effects  will occur. I pray that you find comfort and confidence in whatever decision you decide to make!

                                                                                    Sincerely,

                                                                                    Cristy, Stage IV

                                                                                    mombase
                                                                                    Participant

                                                                                      Dear Jacki,

                                                                                      I am so sorry that you have to change gears so quickly…this disease is totally a bad roller coaster ride sometimes! Anyway, I am glad that  your onc will be getting a lot of other opinions. Originally, my team wanted to do WBR on me after my one large brain tumor was resected. I opted not to because of my age (almost 60) and the hope that I wouldn't have any rogue cells left in the tissue. The combination of those two directed my decision to politely decline the WBR until I really needed it.  I don't know your age, but the younger you are, the less likely some of the nasty side effects  will occur. I pray that you find comfort and confidence in whatever decision you decide to make!

                                                                                      Sincerely,

                                                                                      Cristy, Stage IV

                                                                                      FormerCaregiver
                                                                                      Participant

                                                                                        Jacki, I am very sorry to read of what has happened. Unfortunately, melanoma is so
                                                                                        devious in how it acts that scans are often the only way to diagnose what is really
                                                                                        happening. In addition, some types of melanoma are probably more aggressive than others
                                                                                        and there needs to be more research done on this.

                                                                                        I wonder if surgery would be possible on any of your tumours? I feel that if the amount
                                                                                        of melanoma (tumour burden) can be reduced by surgical resection, then this would give
                                                                                        systemic treatments (such as Yervoy or IL-2) a better chance of success. You would need
                                                                                        to consult a surgical oncologist about this. See:
                                                                                        http://journals.lww.com/melanomaresearch/Fulltext/2008/02000/Evidence_and_interdisciplinary_consensus_based.10.aspx

                                                                                        You remain in my prayers.

                                                                                        Frank from Australia

                                                                                        FormerCaregiver
                                                                                        Participant

                                                                                          Jacki, I am very sorry to read of what has happened. Unfortunately, melanoma is so
                                                                                          devious in how it acts that scans are often the only way to diagnose what is really
                                                                                          happening. In addition, some types of melanoma are probably more aggressive than others
                                                                                          and there needs to be more research done on this.

                                                                                          I wonder if surgery would be possible on any of your tumours? I feel that if the amount
                                                                                          of melanoma (tumour burden) can be reduced by surgical resection, then this would give
                                                                                          systemic treatments (such as Yervoy or IL-2) a better chance of success. You would need
                                                                                          to consult a surgical oncologist about this. See:
                                                                                          http://journals.lww.com/melanomaresearch/Fulltext/2008/02000/Evidence_and_interdisciplinary_consensus_based.10.aspx

                                                                                          You remain in my prayers.

                                                                                          Frank from Australia

                                                                                          FormerCaregiver
                                                                                          Participant

                                                                                            Jacki, I am very sorry to read of what has happened. Unfortunately, melanoma is so
                                                                                            devious in how it acts that scans are often the only way to diagnose what is really
                                                                                            happening. In addition, some types of melanoma are probably more aggressive than others
                                                                                            and there needs to be more research done on this.

                                                                                            I wonder if surgery would be possible on any of your tumours? I feel that if the amount
                                                                                            of melanoma (tumour burden) can be reduced by surgical resection, then this would give
                                                                                            systemic treatments (such as Yervoy or IL-2) a better chance of success. You would need
                                                                                            to consult a surgical oncologist about this. See:
                                                                                            http://journals.lww.com/melanomaresearch/Fulltext/2008/02000/Evidence_and_interdisciplinary_consensus_based.10.aspx

                                                                                            You remain in my prayers.

                                                                                            Frank from Australia

                                                                                            alicia
                                                                                            Participant
                                                                                              Jacki, bless your heart!!!!! Praying many prayers for you sweetie. I have to say I’m in shock at this news too and can only imagine how you feel. You have been so kind to me as we were both going through lymph node biopsies at the same time. I’m so glad you went to the dr and also thankful they did scans to hopefully get this treatment started. I wish I knew more to help you. Praying without ceasing my friend.

                                                                                              Much love,
                                                                                              Alicia

                                                                                              alicia
                                                                                              Participant
                                                                                                Jacki, bless your heart!!!!! Praying many prayers for you sweetie. I have to say I’m in shock at this news too and can only imagine how you feel. You have been so kind to me as we were both going through lymph node biopsies at the same time. I’m so glad you went to the dr and also thankful they did scans to hopefully get this treatment started. I wish I knew more to help you. Praying without ceasing my friend.

                                                                                                Much love,
                                                                                                Alicia

                                                                                                alicia
                                                                                                Participant
                                                                                                  Jacki, bless your heart!!!!! Praying many prayers for you sweetie. I have to say I’m in shock at this news too and can only imagine how you feel. You have been so kind to me as we were both going through lymph node biopsies at the same time. I’m so glad you went to the dr and also thankful they did scans to hopefully get this treatment started. I wish I knew more to help you. Praying without ceasing my friend.

                                                                                                  Much love,
                                                                                                  Alicia

                                                                                                  nikolaos
                                                                                                  Participant

                                                                                                    Hi Jackie! The most reasonable plan for me is to have a gamma knife procedure so that it takes after the visible brain mets and start after ipilimumab! Hopefully the ipi will take after the brain mets and even if it does not it will hopefully stop new mets forming in the brain.. Ipilimumab is known to take some time to kick in so it is better to treat brain mets first. I think WBR (whole brain radiation) is not that good since melanoma is known to be radioresistant.. I wish you every best!

                                                                                                    nikolaos
                                                                                                    Participant

                                                                                                      Hi Jackie! The most reasonable plan for me is to have a gamma knife procedure so that it takes after the visible brain mets and start after ipilimumab! Hopefully the ipi will take after the brain mets and even if it does not it will hopefully stop new mets forming in the brain.. Ipilimumab is known to take some time to kick in so it is better to treat brain mets first. I think WBR (whole brain radiation) is not that good since melanoma is known to be radioresistant.. I wish you every best!

                                                                                                        killmel
                                                                                                        Participant

                                                                                                          Hi Jacki,

                                                                                                           

                                                                                                          I know that you probably think that your team of doctors are the "BEST" but UCI is not noted as "Center of Excellence" for melanoma. UCI also has limited clinicals trials for "stateof the art"  treatments. I think that it is telling that your ONC is reaching out to colleagues for treatment options but it shows that your ONC has limited experience dealing with your situation. I would recommend that that you get a second opinion before going forward with your plan of treatment. Just my 2 cents. I wish you luck with whatever you decide to do.

                                                                                                           

                                                                                                          SoCalDave
                                                                                                          Participant

                                                                                                            Not sure where you're getting the info that UCI is not a Center of Excellence; it's in the list and it's where I go (after 2 other hospitals in the area referred me there).

                                                                                                            http://www.safefromthesun.org/resources/cancercenters.html

                                                                                                            It's under the Chao Family Cancer Center, so maybe you missed it. I imagine Jacki, you're seeing the same group of docs I am (Dr J, Dr F, etc)

                                                                                                            I've put my life in those guys hands and continue to do so.

                                                                                                            Sending prayers to you Jacki!

                                                                                                            Dave

                                                                                                            jax2007gxp
                                                                                                            Participant

                                                                                                              Totally agree with you, Dave!  I picked this team after much consideration…which did include a teensy bit of geography influence in the beginning.  ๐Ÿ˜‰  I don't regret my choices at all!  Oh, and they put me with Dr. S cuz of my age.  He usually treats "young adults" with melanoma….I was pretty excited just to make the cut at 40.  lol

                                                                                                              jax2007gxp
                                                                                                              Participant

                                                                                                                Totally agree with you, Dave!  I picked this team after much consideration…which did include a teensy bit of geography influence in the beginning.  ๐Ÿ˜‰  I don't regret my choices at all!  Oh, and they put me with Dr. S cuz of my age.  He usually treats "young adults" with melanoma….I was pretty excited just to make the cut at 40.  lol

                                                                                                                jax2007gxp
                                                                                                                Participant

                                                                                                                  Totally agree with you, Dave!  I picked this team after much consideration…which did include a teensy bit of geography influence in the beginning.  ๐Ÿ˜‰  I don't regret my choices at all!  Oh, and they put me with Dr. S cuz of my age.  He usually treats "young adults" with melanoma….I was pretty excited just to make the cut at 40.  lol

                                                                                                                  SoCalDave
                                                                                                                  Participant

                                                                                                                    Not sure where you're getting the info that UCI is not a Center of Excellence; it's in the list and it's where I go (after 2 other hospitals in the area referred me there).

                                                                                                                    http://www.safefromthesun.org/resources/cancercenters.html

                                                                                                                    It's under the Chao Family Cancer Center, so maybe you missed it. I imagine Jacki, you're seeing the same group of docs I am (Dr J, Dr F, etc)

                                                                                                                    I've put my life in those guys hands and continue to do so.

                                                                                                                    Sending prayers to you Jacki!

                                                                                                                    Dave

                                                                                                                    SoCalDave
                                                                                                                    Participant

                                                                                                                      Not sure where you're getting the info that UCI is not a Center of Excellence; it's in the list and it's where I go (after 2 other hospitals in the area referred me there).

                                                                                                                      http://www.safefromthesun.org/resources/cancercenters.html

                                                                                                                      It's under the Chao Family Cancer Center, so maybe you missed it. I imagine Jacki, you're seeing the same group of docs I am (Dr J, Dr F, etc)

                                                                                                                      I've put my life in those guys hands and continue to do so.

                                                                                                                      Sending prayers to you Jacki!

                                                                                                                      Dave

                                                                                                                      jax2007gxp
                                                                                                                      Participant

                                                                                                                        When being the needle in the haystack sounds appealing, you pretty much expect limited experience among doctors, even nationally.  I would expect the "best" to be calling to "rest of the best" regardless.  Thanks for the well-wishes…I need everything I can get!

                                                                                                                        jax2007gxp
                                                                                                                        Participant

                                                                                                                          When being the needle in the haystack sounds appealing, you pretty much expect limited experience among doctors, even nationally.  I would expect the "best" to be calling to "rest of the best" regardless.  Thanks for the well-wishes…I need everything I can get!

                                                                                                                          jax2007gxp
                                                                                                                          Participant

                                                                                                                            When being the needle in the haystack sounds appealing, you pretty much expect limited experience among doctors, even nationally.  I would expect the "best" to be calling to "rest of the best" regardless.  Thanks for the well-wishes…I need everything I can get!

                                                                                                                            killmel
                                                                                                                            Participant

                                                                                                                              Hi Jacki,

                                                                                                                               

                                                                                                                              I know that you probably think that your team of doctors are the "BEST" but UCI is not noted as "Center of Excellence" for melanoma. UCI also has limited clinicals trials for "stateof the art"  treatments. I think that it is telling that your ONC is reaching out to colleagues for treatment options but it shows that your ONC has limited experience dealing with your situation. I would recommend that that you get a second opinion before going forward with your plan of treatment. Just my 2 cents. I wish you luck with whatever you decide to do.

                                                                                                                               

                                                                                                                              killmel
                                                                                                                              Participant

                                                                                                                                Hi Jacki,

                                                                                                                                 

                                                                                                                                I know that you probably think that your team of doctors are the "BEST" but UCI is not noted as "Center of Excellence" for melanoma. UCI also has limited clinicals trials for "stateof the art"  treatments. I think that it is telling that your ONC is reaching out to colleagues for treatment options but it shows that your ONC has limited experience dealing with your situation. I would recommend that that you get a second opinion before going forward with your plan of treatment. Just my 2 cents. I wish you luck with whatever you decide to do.

                                                                                                                                 

                                                                                                                                Phil S
                                                                                                                                Participant
                                                                                                                                  Just so people understand gamma knife or cyber or proton procedures targeting brain tumors are in fact Radiosurgery! WBR is a lower dose to the whole brain and is still often the recommendation when there are several tumors to treat. Gamma knife is high dose radiation targeting one tumor at a time with precision. Some melanoma will respond to radiation some won’t, you won’t know until they do it, no one wants brain radiation, but then again no one wants melanoma! Good luck, Jacki, whatever you decide and remember your age and overall condition will help you get through treatment! Valerie (Phil’s wife)
                                                                                                                                  kaney2021
                                                                                                                                  Participant

                                                                                                                                    Even though many of us worry about getting Alzheimer's disease, we often neglect a far more likely and immediate danger to our ability to think and function. Every year hundreds of thousands of people suffer serious, and sometimes permanent damage to their brain function because of accidents that could have been prevented.

                                                                                                                                    wobenzym

                                                                                                                                    kaney2021
                                                                                                                                    Participant

                                                                                                                                      Even though many of us worry about getting Alzheimer's disease, we often neglect a far more likely and immediate danger to our ability to think and function. Every year hundreds of thousands of people suffer serious, and sometimes permanent damage to their brain function because of accidents that could have been prevented.

                                                                                                                                      wobenzym

                                                                                                                                      kaney2021
                                                                                                                                      Participant

                                                                                                                                        Even though many of us worry about getting Alzheimer's disease, we often neglect a far more likely and immediate danger to our ability to think and function. Every year hundreds of thousands of people suffer serious, and sometimes permanent damage to their brain function because of accidents that could have been prevented.

                                                                                                                                        wobenzym

                                                                                                                                        Phil S
                                                                                                                                        Participant
                                                                                                                                          Just so people understand gamma knife or cyber or proton procedures targeting brain tumors are in fact Radiosurgery! WBR is a lower dose to the whole brain and is still often the recommendation when there are several tumors to treat. Gamma knife is high dose radiation targeting one tumor at a time with precision. Some melanoma will respond to radiation some won’t, you won’t know until they do it, no one wants brain radiation, but then again no one wants melanoma! Good luck, Jacki, whatever you decide and remember your age and overall condition will help you get through treatment! Valerie (Phil’s wife)
                                                                                                                                          Phil S
                                                                                                                                          Participant
                                                                                                                                            Just so people understand gamma knife or cyber or proton procedures targeting brain tumors are in fact Radiosurgery! WBR is a lower dose to the whole brain and is still often the recommendation when there are several tumors to treat. Gamma knife is high dose radiation targeting one tumor at a time with precision. Some melanoma will respond to radiation some won’t, you won’t know until they do it, no one wants brain radiation, but then again no one wants melanoma! Good luck, Jacki, whatever you decide and remember your age and overall condition will help you get through treatment! Valerie (Phil’s wife)
                                                                                                                                          nikolaos
                                                                                                                                          Participant

                                                                                                                                            Hi Jackie! The most reasonable plan for me is to have a gamma knife procedure so that it takes after the visible brain mets and start after ipilimumab! Hopefully the ipi will take after the brain mets and even if it does not it will hopefully stop new mets forming in the brain.. Ipilimumab is known to take some time to kick in so it is better to treat brain mets first. I think WBR (whole brain radiation) is not that good since melanoma is known to be radioresistant.. I wish you every best!

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