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Hard questions

Forums General Melanoma Community Hard questions

  • Post
    emilypen
    Participant

      Hi All,

      So after fighting this beast for 4 years it seems we're at the end of the line.

      My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

      Hi All,

      So after fighting this beast for 4 years it seems we're at the end of the line.

      My husband has been through; Interferon, Dacarbazine, P13k/Mek, Surgery with Radiation, Roche Braf, more radiation + WBR,  IPI and now Carbo/Taxol.

      After the first treatment of Carbo/Taxol his sub q's cleared really quickly leading us to wonder if it was a combined response to IPI and chemo, but a 5 week wait for the 2nd chemo infusion led to increased pain and some sub q's popping back up. Finally his bloodwork was satisfactory and he got the 2nd chemo last week. It's doesn't seem to be working as fast this time around.

      Meanwhile he's a little confused at times, nodding off throughout the day, really weak and not retaining much in his memory.

      Based on his last MRI's to check his spine and brain ( last week) his brain mets are skrinking and no new ones have popped up, but the mel is pushing on his spine in places and is directly in his spinal canal as well.

      So he starts more pallative radiation this week. 

      He doesn't seem to have registered that the doctor told him he has maybe months to live, ( that was 5 weeks ago) which I am fine with! And I am hoping he makes it to the birth of our first child in late Feb.

      We're lucky in many ways, i don't have to work right now so I can take care of him, his work has a 2 year full salary disability plan and covers all medical costs that our Canadian system may not ( like prescriptions) we have a great family support system. Home care when needed, and the morphine takes care of most of his pain.

       

      I really hope that the carbo/taxol works and helps get the tumour burden under control so that he can get strong enough for another clinical trial in the new year, right now his doctors say he won't qualify for anything based on his health.

      What I'd like input on is how does this end? I'm not trying to be negative just want to know what to look out for.

      Sometimes i think we'll go to bed one night and when i wake up, he won't. 

      I've looked on the web and can't really find anything about end of life signs other that the couple of hours right before if any one has info to share that would be much appreciated.

       

      thanks,

      Emily

    Viewing 20 reply threads
    • Replies
        lhaley
        Participant

          Emily,

          Each persons journey can end so differently.   Do you have a hospice system in Canada?   If you want I'll e-mail you Jill's (Jill and Eric) e-mail and maybe she can talk to you offline.  Let me know.  My mother died of brain cancer from breast cancer.  She ended up only being in pain the last couple of days of her life, even then it was under control.  While their was much confusion ect it was difficult on the family but not on mom.  

          I truly am sorry that this is how it is all ending.  Hopefully your husband can make it till the baby is born.  Take care of yourself also during this time.

          Linda

          lhaley
          Participant

            Emily,

            Each persons journey can end so differently.   Do you have a hospice system in Canada?   If you want I'll e-mail you Jill's (Jill and Eric) e-mail and maybe she can talk to you offline.  Let me know.  My mother died of brain cancer from breast cancer.  She ended up only being in pain the last couple of days of her life, even then it was under control.  While their was much confusion ect it was difficult on the family but not on mom.  

            I truly am sorry that this is how it is all ending.  Hopefully your husband can make it till the baby is born.  Take care of yourself also during this time.

            Linda

              deardad
              Participant

                Hi Emily,

                I am very sad to hear that your husband is at the end of line. Im sorry that I cant offer any experience regarding end of life issues but I sincerely hope that your husband can live to see the baby.

                Take care Emily

                Nahmi from melbourne

                deardad
                Participant

                  Hi Emily,

                  I am very sad to hear that your husband is at the end of line. Im sorry that I cant offer any experience regarding end of life issues but I sincerely hope that your husband can live to see the baby.

                  Take care Emily

                  Nahmi from melbourne

                  deardad
                  Participant

                    Hi Emily,

                    I am very sad to hear that your husband is at the end of line. Im sorry that I cant offer any experience regarding end of life issues but I sincerely hope that your husband can live to see the baby.

                    Take care Emily

                    Nahmi from melbourne

                  lhaley
                  Participant

                    Emily,

                    Each persons journey can end so differently.   Do you have a hospice system in Canada?   If you want I'll e-mail you Jill's (Jill and Eric) e-mail and maybe she can talk to you offline.  Let me know.  My mother died of brain cancer from breast cancer.  She ended up only being in pain the last couple of days of her life, even then it was under control.  While their was much confusion ect it was difficult on the family but not on mom.  

                    I truly am sorry that this is how it is all ending.  Hopefully your husband can make it till the baby is born.  Take care of yourself also during this time.

                    Linda

                    Lori C
                    Participant

                      Emily, I am sorry to hear things are progessing like this.  I hope that the taxol/carbo will indeed improve things.  Will was on this and it did help the tumor burden, but his liver was too compromised to handle the toxicity.   He began to vomit more frequently, eventually blood,  developed pnemonia, and finally his liver began to fail.  It was quite fast.   However, his liver had a very severe tumor burden, everyone's situation is different.  Perhaps talking to the palliative care people might help give you a clear picture on what you could expect.

                       

                      Thinking of you,

                      Lori

                      Lori C
                      Participant

                        Emily, I am sorry to hear things are progessing like this.  I hope that the taxol/carbo will indeed improve things.  Will was on this and it did help the tumor burden, but his liver was too compromised to handle the toxicity.   He began to vomit more frequently, eventually blood,  developed pnemonia, and finally his liver began to fail.  It was quite fast.   However, his liver had a very severe tumor burden, everyone's situation is different.  Perhaps talking to the palliative care people might help give you a clear picture on what you could expect.

                         

                        Thinking of you,

                        Lori

                        Lori C
                        Participant

                          Emily, I am sorry to hear things are progessing like this.  I hope that the taxol/carbo will indeed improve things.  Will was on this and it did help the tumor burden, but his liver was too compromised to handle the toxicity.   He began to vomit more frequently, eventually blood,  developed pnemonia, and finally his liver began to fail.  It was quite fast.   However, his liver had a very severe tumor burden, everyone's situation is different.  Perhaps talking to the palliative care people might help give you a clear picture on what you could expect.

                           

                          Thinking of you,

                          Lori

                          Charlie S
                          Participant

                            Hard questions indeed, but you have asked a legitimate question that though they won't admit it, many patients and caregivers ponder.

                            I'm not a doctor and what follows is not what I have read about, but experienced first hand.

                            Melanoma, just like human life needs, oxygen and blood nutrients to exist.  Over time, and that time varies; cancer is so in control that it sucks all of the oxygen and nutrients from the blood stream for it's own survival and begins to deprive the body of what it needs to survive.  Organs lose function because there is more cancer than organ and the cancer takes all the nutrients.  In the case of the liver, it loses its' ability to filter the blood and can lead to rising levels of toxcisity that spreads, the liver shuts down, urine output stops and the body is simply poisoned.

                              The lungs can begin to fill with fluid compromising oxygen level and capacity..  Lack of life giving and nutrient rich blood to the brain may become toxic and affect the involuntary functions of respiration and heart electrical impulses and effect mobility and cognition.

                            As tumors grow, their physical size simply crowds out and can virtually crush organs, which can limit function of cause bleeding from ruptures.

                            Internal infection may set in; but ultimately a irreversible cascade of events begins to occur as the body begins the natural process of shutting down.  Fluid output stops, as does desire for fluid intake, the waste process stops as does the desire for food intake.  Breathing slows, heartbeat becomes weak, respiration becomes weak, shallow and slow, blood pressure drops, cognitive function becomes impaired.  All this can happen slowly over days and weeks, sometimes in hours.

                            Many a hospice nurse has told me that the ability to hear is present until death.  I don't think that  is urban legend.

                            I soooooo hope that your hubby rebounds, but for your own sanity, if it is an available resource to you, I would urge that you contact hospice and that your husband have  a living will so he lays out what he wants rather than leave you or family members twisting with hard decisions or indecision should he not rebound.

                            My best to all of your family.

                             

                            Charlie S

                            Charlie S
                            Participant

                              Hard questions indeed, but you have asked a legitimate question that though they won't admit it, many patients and caregivers ponder.

                              I'm not a doctor and what follows is not what I have read about, but experienced first hand.

                              Melanoma, just like human life needs, oxygen and blood nutrients to exist.  Over time, and that time varies; cancer is so in control that it sucks all of the oxygen and nutrients from the blood stream for it's own survival and begins to deprive the body of what it needs to survive.  Organs lose function because there is more cancer than organ and the cancer takes all the nutrients.  In the case of the liver, it loses its' ability to filter the blood and can lead to rising levels of toxcisity that spreads, the liver shuts down, urine output stops and the body is simply poisoned.

                                The lungs can begin to fill with fluid compromising oxygen level and capacity..  Lack of life giving and nutrient rich blood to the brain may become toxic and affect the involuntary functions of respiration and heart electrical impulses and effect mobility and cognition.

                              As tumors grow, their physical size simply crowds out and can virtually crush organs, which can limit function of cause bleeding from ruptures.

                              Internal infection may set in; but ultimately a irreversible cascade of events begins to occur as the body begins the natural process of shutting down.  Fluid output stops, as does desire for fluid intake, the waste process stops as does the desire for food intake.  Breathing slows, heartbeat becomes weak, respiration becomes weak, shallow and slow, blood pressure drops, cognitive function becomes impaired.  All this can happen slowly over days and weeks, sometimes in hours.

                              Many a hospice nurse has told me that the ability to hear is present until death.  I don't think that  is urban legend.

                              I soooooo hope that your hubby rebounds, but for your own sanity, if it is an available resource to you, I would urge that you contact hospice and that your husband have  a living will so he lays out what he wants rather than leave you or family members twisting with hard decisions or indecision should he not rebound.

                              My best to all of your family.

                               

                              Charlie S

                              Charlie S
                              Participant

                                Hard questions indeed, but you have asked a legitimate question that though they won't admit it, many patients and caregivers ponder.

                                I'm not a doctor and what follows is not what I have read about, but experienced first hand.

                                Melanoma, just like human life needs, oxygen and blood nutrients to exist.  Over time, and that time varies; cancer is so in control that it sucks all of the oxygen and nutrients from the blood stream for it's own survival and begins to deprive the body of what it needs to survive.  Organs lose function because there is more cancer than organ and the cancer takes all the nutrients.  In the case of the liver, it loses its' ability to filter the blood and can lead to rising levels of toxcisity that spreads, the liver shuts down, urine output stops and the body is simply poisoned.

                                  The lungs can begin to fill with fluid compromising oxygen level and capacity..  Lack of life giving and nutrient rich blood to the brain may become toxic and affect the involuntary functions of respiration and heart electrical impulses and effect mobility and cognition.

                                As tumors grow, their physical size simply crowds out and can virtually crush organs, which can limit function of cause bleeding from ruptures.

                                Internal infection may set in; but ultimately a irreversible cascade of events begins to occur as the body begins the natural process of shutting down.  Fluid output stops, as does desire for fluid intake, the waste process stops as does the desire for food intake.  Breathing slows, heartbeat becomes weak, respiration becomes weak, shallow and slow, blood pressure drops, cognitive function becomes impaired.  All this can happen slowly over days and weeks, sometimes in hours.

                                Many a hospice nurse has told me that the ability to hear is present until death.  I don't think that  is urban legend.

                                I soooooo hope that your hubby rebounds, but for your own sanity, if it is an available resource to you, I would urge that you contact hospice and that your husband have  a living will so he lays out what he wants rather than leave you or family members twisting with hard decisions or indecision should he not rebound.

                                My best to all of your family.

                                 

                                Charlie S

                                FormerCaregiver
                                Participant

                                  Emily, I feel that it is almost impossible for any doctor to accurately predict how much
                                  time someone has left. I have heard of people who were only given a few weeks to live
                                  who have survived for many months after that assessment was made.

                                  Please continue to consider other treatments that your husband might be eligible for
                                  such as an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell therapy).
                                  There are new drugs being developed all the time, and there is always a chance that
                                  something might be effective.

                                  However, you have asked an important question regarding "how does this end?" I feel that it
                                  depends on where the mets are, and some of the most dangerous places to have them are
                                  the liver and the brain. My late wife had liver mets that resulted in her having hepatic
                                  encephalopathy as a consequence.

                                  From: http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm "Hepatic encephalopathy
                                  is a worsening of brain function that occurs when the liver is no longer able to remove
                                  toxic substances in the blood." In her final days, her symptoms included confusion,
                                  agitation, and refusal to eat or drink.

                                  I have read that brain mets can become dangerous if they bleed or grow large enough to
                                  obstruct vital functions. Mets in other regions can certainly cause many problems,
                                  especially if major blood vessels or the central nervous system is involved.

                                  Take care

                                  Frank from Australia

                                  FormerCaregiver
                                  Participant

                                    Emily, I feel that it is almost impossible for any doctor to accurately predict how much
                                    time someone has left. I have heard of people who were only given a few weeks to live
                                    who have survived for many months after that assessment was made.

                                    Please continue to consider other treatments that your husband might be eligible for
                                    such as an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell therapy).
                                    There are new drugs being developed all the time, and there is always a chance that
                                    something might be effective.

                                    However, you have asked an important question regarding "how does this end?" I feel that it
                                    depends on where the mets are, and some of the most dangerous places to have them are
                                    the liver and the brain. My late wife had liver mets that resulted in her having hepatic
                                    encephalopathy as a consequence.

                                    From: http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm "Hepatic encephalopathy
                                    is a worsening of brain function that occurs when the liver is no longer able to remove
                                    toxic substances in the blood." In her final days, her symptoms included confusion,
                                    agitation, and refusal to eat or drink.

                                    I have read that brain mets can become dangerous if they bleed or grow large enough to
                                    obstruct vital functions. Mets in other regions can certainly cause many problems,
                                    especially if major blood vessels or the central nervous system is involved.

                                    Take care

                                    Frank from Australia

                                    FormerCaregiver
                                    Participant

                                      Emily, I feel that it is almost impossible for any doctor to accurately predict how much
                                      time someone has left. I have heard of people who were only given a few weeks to live
                                      who have survived for many months after that assessment was made.

                                      Please continue to consider other treatments that your husband might be eligible for
                                      such as an anti PD-1 (MDX-1106) clinical trial or TIL treatment (adoptive cell therapy).
                                      There are new drugs being developed all the time, and there is always a chance that
                                      something might be effective.

                                      However, you have asked an important question regarding "how does this end?" I feel that it
                                      depends on where the mets are, and some of the most dangerous places to have them are
                                      the liver and the brain. My late wife had liver mets that resulted in her having hepatic
                                      encephalopathy as a consequence.

                                      From: http://www.nlm.nih.gov/medlineplus/ency/article/000302.htm "Hepatic encephalopathy
                                      is a worsening of brain function that occurs when the liver is no longer able to remove
                                      toxic substances in the blood." In her final days, her symptoms included confusion,
                                      agitation, and refusal to eat or drink.

                                      I have read that brain mets can become dangerous if they bleed or grow large enough to
                                      obstruct vital functions. Mets in other regions can certainly cause many problems,
                                      especially if major blood vessels or the central nervous system is involved.

                                      Take care

                                      Frank from Australia

                                      MariaH
                                      Participant

                                        Emily,

                                        I am so sorry your journey has come to this.  Your question is a difficult one to answer, yet one that everybody has when faced with this.  I can tell you that with my brother (who is nearing the end with stage iv peritoneal cancer), there have been signs recently that indicate he doesn't have long.  It really does depend on the cancer and the person.  Within the last four days, my brother has been too weak to get out of bed, no longer eats, and is having difficulty talking.  He sleeps the majority of the time now. 

                                        Like others here have said, I strongly would suggest hospice care at home.  The fear of losing someone and what happens in the end is terrible.  Hospice has been a godsend for my parents and has helped them keep Mike comfortable.  In the end, it's really all you can do.

                                        I wish you peace as you travel this road.

                                        Maria

                                        MariaH
                                        Participant

                                          Emily,

                                          I am so sorry your journey has come to this.  Your question is a difficult one to answer, yet one that everybody has when faced with this.  I can tell you that with my brother (who is nearing the end with stage iv peritoneal cancer), there have been signs recently that indicate he doesn't have long.  It really does depend on the cancer and the person.  Within the last four days, my brother has been too weak to get out of bed, no longer eats, and is having difficulty talking.  He sleeps the majority of the time now. 

                                          Like others here have said, I strongly would suggest hospice care at home.  The fear of losing someone and what happens in the end is terrible.  Hospice has been a godsend for my parents and has helped them keep Mike comfortable.  In the end, it's really all you can do.

                                          I wish you peace as you travel this road.

                                          Maria

                                          MariaH
                                          Participant

                                            Emily,

                                            I am so sorry your journey has come to this.  Your question is a difficult one to answer, yet one that everybody has when faced with this.  I can tell you that with my brother (who is nearing the end with stage iv peritoneal cancer), there have been signs recently that indicate he doesn't have long.  It really does depend on the cancer and the person.  Within the last four days, my brother has been too weak to get out of bed, no longer eats, and is having difficulty talking.  He sleeps the majority of the time now. 

                                            Like others here have said, I strongly would suggest hospice care at home.  The fear of losing someone and what happens in the end is terrible.  Hospice has been a godsend for my parents and has helped them keep Mike comfortable.  In the end, it's really all you can do.

                                            I wish you peace as you travel this road.

                                            Maria

                                            shellebrownies
                                            Participant

                                              Emily,

                                              I feel blessed that my recent experience may be of some help to you.

                                              As you may be aware, my husband passed away 2 weeks ago. His cancer was extensively in his bones (especially spine bones), as well as his liver, a tumor under his right arm (lymph node area) and, finally, it spread to his brain. 

                                              First of all, and I'm not telling you this to be a downer, we also have experience with Carbo/Taxol. Don had it 4 rounds, once every 3 weeks from June-August. He responded incredibly well the first go round, and less so with each successive round until by round 4, it did nothing. Apparently, the melanoma quickly learns to adapt to chemotherapy treatment. At least the Carbo/Taxol can do some considerable damage to the cancer before its usefulness wears off.

                                              Everyone's experience with any treatment will be different, of course, so there is no saying if your husband will have a more prolonged response. 

                                              The first big sign I noticed in my husband's decline was a decreased energy level. He went from someone who at least got up and paced around the house several times a day (he was on PLX4032 at the time, which as you know, makes one extremely sun sensitive, so he wouldn't go outside), to someone who got up from the bed to the chair to the bathroom, and that was about it.

                                              He also was experiencing an increase in pain due to the spread of the disease. He had relatively significant pain, especially in his lower back, due to the damage to the spinal bones. He did not have any compression of the spinal cord, however. 

                                              The next thing I noticed was his lack of appetite. He had complained for some time of not having any appetite, but then it became harder and harder to actually get him to eat an adequate enough amount of food in a day. He simply was not taking in enough nutrients on a daily basis. The doctor actually prescribed him an appetite stimulant to try and get him to eat more, which worked only marginally well.

                                              Same thing goes for fluids; I couldn't get him to drink enough on a daily basis to keep him from getting dehydrated. It got so that I just had his specialist just automatically expect to give him a bag of fluid at each visit to keep his hydration up. 

                                              The signs you describe of your husband having memory issues, confusion and nodding off throughout the day sounds quite a bit like how my husband was when he started getting edema on the brain. HOWEVER, since your husband recently had WBR, those symptoms are more easily attributed to that source, especially if they vary from day to day and are not progressing. If so, he may regain those things in time. 

                                              These were the major signs for several weeks before he developed complications, in his case, swelling on the brain. (He was only able to complete 3 WBR treatments before he was hospitalized with edema) It was after this point that we were told that there was no treatments left that could cure my husband in time (our current plan had been IPI with WBR and spine radiation, but the bleeding of his tumors were going to keep us from being able to continue treatment in time to stop the disease because Don's cancer was extremely aggressive). He was given "a few weeks" to live, but only lived 10 days after that, most of which was spent in hospice, which really was a blessing.

                                              In those last days, he did experience a time when he regained his clarity of thought, which was a blessing in that it allowed us a few final days to say our goodbyes and allowed him time to process what was happening to him. During that time, his appetite, which had temporarily increased, dwindled down to nothing, and his kidneys were slowly failing (dark urine then followed by blood in the urine). His energy level dwindled down to almost nothing (a walking trip to the bathroom (10 steps with a walker) exhausted him so much we had to bring him back to bed in a wheelchair).

                                              In my husband's case, it does seem that the cause of his immediate demise was more brain swelling, as the first of the last 2 days of his life began with more confusion like I'd seen when he had the edema before, and he kept holding his head and complaining of feeling confused and his head hurt. An increase in his steroids did not help; this is when we knew it wouldn't be much longer. By the end of the day, he was mostly unconscious, and the next day he continued to deteriorate (mostly unconscious, restless, uncomfortable, and his breathing changed: deep quick panting and then long pauses in his breath). Later that evening, his breathing changed again to a very shallow breathing, again with the long pauses. 

                                              In the end, he passed by simply not taking another breath. It was a calm passing. He was well cared for, kept as pain free as possible, and surrounded by loved ones. 

                                               

                                              I do hope that things with your husband work out, but know that I am here to talk to if you ever need to.

                                              Best of luck to you both.

                                              Michelle, wife of Don

                                              shellebrownies
                                              Participant

                                                Emily,

                                                I feel blessed that my recent experience may be of some help to you.

                                                As you may be aware, my husband passed away 2 weeks ago. His cancer was extensively in his bones (especially spine bones), as well as his liver, a tumor under his right arm (lymph node area) and, finally, it spread to his brain. 

                                                First of all, and I'm not telling you this to be a downer, we also have experience with Carbo/Taxol. Don had it 4 rounds, once every 3 weeks from June-August. He responded incredibly well the first go round, and less so with each successive round until by round 4, it did nothing. Apparently, the melanoma quickly learns to adapt to chemotherapy treatment. At least the Carbo/Taxol can do some considerable damage to the cancer before its usefulness wears off.

                                                Everyone's experience with any treatment will be different, of course, so there is no saying if your husband will have a more prolonged response. 

                                                The first big sign I noticed in my husband's decline was a decreased energy level. He went from someone who at least got up and paced around the house several times a day (he was on PLX4032 at the time, which as you know, makes one extremely sun sensitive, so he wouldn't go outside), to someone who got up from the bed to the chair to the bathroom, and that was about it.

                                                He also was experiencing an increase in pain due to the spread of the disease. He had relatively significant pain, especially in his lower back, due to the damage to the spinal bones. He did not have any compression of the spinal cord, however. 

                                                The next thing I noticed was his lack of appetite. He had complained for some time of not having any appetite, but then it became harder and harder to actually get him to eat an adequate enough amount of food in a day. He simply was not taking in enough nutrients on a daily basis. The doctor actually prescribed him an appetite stimulant to try and get him to eat more, which worked only marginally well.

                                                Same thing goes for fluids; I couldn't get him to drink enough on a daily basis to keep him from getting dehydrated. It got so that I just had his specialist just automatically expect to give him a bag of fluid at each visit to keep his hydration up. 

                                                The signs you describe of your husband having memory issues, confusion and nodding off throughout the day sounds quite a bit like how my husband was when he started getting edema on the brain. HOWEVER, since your husband recently had WBR, those symptoms are more easily attributed to that source, especially if they vary from day to day and are not progressing. If so, he may regain those things in time. 

                                                These were the major signs for several weeks before he developed complications, in his case, swelling on the brain. (He was only able to complete 3 WBR treatments before he was hospitalized with edema) It was after this point that we were told that there was no treatments left that could cure my husband in time (our current plan had been IPI with WBR and spine radiation, but the bleeding of his tumors were going to keep us from being able to continue treatment in time to stop the disease because Don's cancer was extremely aggressive). He was given "a few weeks" to live, but only lived 10 days after that, most of which was spent in hospice, which really was a blessing.

                                                In those last days, he did experience a time when he regained his clarity of thought, which was a blessing in that it allowed us a few final days to say our goodbyes and allowed him time to process what was happening to him. During that time, his appetite, which had temporarily increased, dwindled down to nothing, and his kidneys were slowly failing (dark urine then followed by blood in the urine). His energy level dwindled down to almost nothing (a walking trip to the bathroom (10 steps with a walker) exhausted him so much we had to bring him back to bed in a wheelchair).

                                                In my husband's case, it does seem that the cause of his immediate demise was more brain swelling, as the first of the last 2 days of his life began with more confusion like I'd seen when he had the edema before, and he kept holding his head and complaining of feeling confused and his head hurt. An increase in his steroids did not help; this is when we knew it wouldn't be much longer. By the end of the day, he was mostly unconscious, and the next day he continued to deteriorate (mostly unconscious, restless, uncomfortable, and his breathing changed: deep quick panting and then long pauses in his breath). Later that evening, his breathing changed again to a very shallow breathing, again with the long pauses. 

                                                In the end, he passed by simply not taking another breath. It was a calm passing. He was well cared for, kept as pain free as possible, and surrounded by loved ones. 

                                                 

                                                I do hope that things with your husband work out, but know that I am here to talk to if you ever need to.

                                                Best of luck to you both.

                                                Michelle, wife of Don

                                                shellebrownies
                                                Participant

                                                  Emily,

                                                  I feel blessed that my recent experience may be of some help to you.

                                                  As you may be aware, my husband passed away 2 weeks ago. His cancer was extensively in his bones (especially spine bones), as well as his liver, a tumor under his right arm (lymph node area) and, finally, it spread to his brain. 

                                                  First of all, and I'm not telling you this to be a downer, we also have experience with Carbo/Taxol. Don had it 4 rounds, once every 3 weeks from June-August. He responded incredibly well the first go round, and less so with each successive round until by round 4, it did nothing. Apparently, the melanoma quickly learns to adapt to chemotherapy treatment. At least the Carbo/Taxol can do some considerable damage to the cancer before its usefulness wears off.

                                                  Everyone's experience with any treatment will be different, of course, so there is no saying if your husband will have a more prolonged response. 

                                                  The first big sign I noticed in my husband's decline was a decreased energy level. He went from someone who at least got up and paced around the house several times a day (he was on PLX4032 at the time, which as you know, makes one extremely sun sensitive, so he wouldn't go outside), to someone who got up from the bed to the chair to the bathroom, and that was about it.

                                                  He also was experiencing an increase in pain due to the spread of the disease. He had relatively significant pain, especially in his lower back, due to the damage to the spinal bones. He did not have any compression of the spinal cord, however. 

                                                  The next thing I noticed was his lack of appetite. He had complained for some time of not having any appetite, but then it became harder and harder to actually get him to eat an adequate enough amount of food in a day. He simply was not taking in enough nutrients on a daily basis. The doctor actually prescribed him an appetite stimulant to try and get him to eat more, which worked only marginally well.

                                                  Same thing goes for fluids; I couldn't get him to drink enough on a daily basis to keep him from getting dehydrated. It got so that I just had his specialist just automatically expect to give him a bag of fluid at each visit to keep his hydration up. 

                                                  The signs you describe of your husband having memory issues, confusion and nodding off throughout the day sounds quite a bit like how my husband was when he started getting edema on the brain. HOWEVER, since your husband recently had WBR, those symptoms are more easily attributed to that source, especially if they vary from day to day and are not progressing. If so, he may regain those things in time. 

                                                  These were the major signs for several weeks before he developed complications, in his case, swelling on the brain. (He was only able to complete 3 WBR treatments before he was hospitalized with edema) It was after this point that we were told that there was no treatments left that could cure my husband in time (our current plan had been IPI with WBR and spine radiation, but the bleeding of his tumors were going to keep us from being able to continue treatment in time to stop the disease because Don's cancer was extremely aggressive). He was given "a few weeks" to live, but only lived 10 days after that, most of which was spent in hospice, which really was a blessing.

                                                  In those last days, he did experience a time when he regained his clarity of thought, which was a blessing in that it allowed us a few final days to say our goodbyes and allowed him time to process what was happening to him. During that time, his appetite, which had temporarily increased, dwindled down to nothing, and his kidneys were slowly failing (dark urine then followed by blood in the urine). His energy level dwindled down to almost nothing (a walking trip to the bathroom (10 steps with a walker) exhausted him so much we had to bring him back to bed in a wheelchair).

                                                  In my husband's case, it does seem that the cause of his immediate demise was more brain swelling, as the first of the last 2 days of his life began with more confusion like I'd seen when he had the edema before, and he kept holding his head and complaining of feeling confused and his head hurt. An increase in his steroids did not help; this is when we knew it wouldn't be much longer. By the end of the day, he was mostly unconscious, and the next day he continued to deteriorate (mostly unconscious, restless, uncomfortable, and his breathing changed: deep quick panting and then long pauses in his breath). Later that evening, his breathing changed again to a very shallow breathing, again with the long pauses. 

                                                  In the end, he passed by simply not taking another breath. It was a calm passing. He was well cared for, kept as pain free as possible, and surrounded by loved ones. 

                                                   

                                                  I do hope that things with your husband work out, but know that I am here to talk to if you ever need to.

                                                  Best of luck to you both.

                                                  Michelle, wife of Don

                                                  BarbieGirl
                                                  Participant

                                                    Emily, I'm so sorry to hear your husband is at this point—I will be praying, if it is his time to go, his journey is peaceful.

                                                    One thing that helped me when my dad was dying10-1/2 years ago, was a free online 'book', written by a former hospice nurse.  It's called "Crossing The Creek", and it totally explains the dying process in words anyone can understand.  Eventually, the author started charging for his book, but fortunately I had copied it before he did.  I just did a google search and there is a FREE PDF download for it…  the URL is:

                                                    http://faculty.essex.edu/~grosso/09/crossingthecreek.pdf

                                                    If, for some reason you can't pull it up, email me ([email protected]) and I'll send it to you.  It's 14 pages long.  It goes through everything in a way that didn't scare or upset me, but in a weird way, comforted me, knowing dad was 'dealing in his own way' during the dying process.

                                                    An excerpt from the author's page explains what Crossing the Creek is all about:

                                                    "Crossing the Creek" combines the physical, medical, emotional and spiritual aspects of dying process into a unified and sensible whole.  It describes dying process as a logical and purposeful period of transition rather than as just some bad stuff that happens shortly before we cease to exist.  It is not dogmatic but recognizes and accepts spiritual phenomena commonly observed by caregivers to the dying in a matter-of-fact way.  And finally, it is based on first-hand experience with dying people and their families.  In other words, it is not an academic construct, it is real.

                                                     

                                                    Again, I'm so sorry, and I'll be keeping you, your husband, family and friends in my heart and prayers.  *Hugz*

                                                    ~Lisa~

                                                     

                                                    BarbieGirl
                                                    Participant

                                                      Emily, I'm so sorry to hear your husband is at this point—I will be praying, if it is his time to go, his journey is peaceful.

                                                      One thing that helped me when my dad was dying10-1/2 years ago, was a free online 'book', written by a former hospice nurse.  It's called "Crossing The Creek", and it totally explains the dying process in words anyone can understand.  Eventually, the author started charging for his book, but fortunately I had copied it before he did.  I just did a google search and there is a FREE PDF download for it…  the URL is:

                                                      http://faculty.essex.edu/~grosso/09/crossingthecreek.pdf

                                                      If, for some reason you can't pull it up, email me ([email protected]) and I'll send it to you.  It's 14 pages long.  It goes through everything in a way that didn't scare or upset me, but in a weird way, comforted me, knowing dad was 'dealing in his own way' during the dying process.

                                                      An excerpt from the author's page explains what Crossing the Creek is all about:

                                                      "Crossing the Creek" combines the physical, medical, emotional and spiritual aspects of dying process into a unified and sensible whole.  It describes dying process as a logical and purposeful period of transition rather than as just some bad stuff that happens shortly before we cease to exist.  It is not dogmatic but recognizes and accepts spiritual phenomena commonly observed by caregivers to the dying in a matter-of-fact way.  And finally, it is based on first-hand experience with dying people and their families.  In other words, it is not an academic construct, it is real.

                                                       

                                                      Again, I'm so sorry, and I'll be keeping you, your husband, family and friends in my heart and prayers.  *Hugz*

                                                      ~Lisa~

                                                       

                                                      BarbieGirl
                                                      Participant

                                                        Emily, I'm so sorry to hear your husband is at this point—I will be praying, if it is his time to go, his journey is peaceful.

                                                        One thing that helped me when my dad was dying10-1/2 years ago, was a free online 'book', written by a former hospice nurse.  It's called "Crossing The Creek", and it totally explains the dying process in words anyone can understand.  Eventually, the author started charging for his book, but fortunately I had copied it before he did.  I just did a google search and there is a FREE PDF download for it…  the URL is:

                                                        http://faculty.essex.edu/~grosso/09/crossingthecreek.pdf

                                                        If, for some reason you can't pull it up, email me ([email protected]) and I'll send it to you.  It's 14 pages long.  It goes through everything in a way that didn't scare or upset me, but in a weird way, comforted me, knowing dad was 'dealing in his own way' during the dying process.

                                                        An excerpt from the author's page explains what Crossing the Creek is all about:

                                                        "Crossing the Creek" combines the physical, medical, emotional and spiritual aspects of dying process into a unified and sensible whole.  It describes dying process as a logical and purposeful period of transition rather than as just some bad stuff that happens shortly before we cease to exist.  It is not dogmatic but recognizes and accepts spiritual phenomena commonly observed by caregivers to the dying in a matter-of-fact way.  And finally, it is based on first-hand experience with dying people and their families.  In other words, it is not an academic construct, it is real.

                                                         

                                                        Again, I'm so sorry, and I'll be keeping you, your husband, family and friends in my heart and prayers.  *Hugz*

                                                        ~Lisa~

                                                         

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