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please help

Forums Cutaneous Melanoma Community please help

  • Post
    csellers23
    Participant
      I don’t know what to do. The last 3 day we have been to the ER 4 times. High temp up to 104. They just send us home. He was seeing things and wasn’t making any sense. They said what do you want us to do.. I got his temp down. But now it’s like 83.9 to 94.9. Buy has been in his right mind. The while watching the UK game tonight. He started stuttering hid words and the left side of his lip went up. I called 911 they came took his bp and all and told me it sounds like he has a tumor on the part of his brain that controls his temp. And the pressure prolly caused it all. I called his doc and ask about hospices and he said he don’t think we need it yet that it could be the keytruda killing the cancer. But it’s like every day I’m calling 911 and it’s getting old to them. But what am I to do. I weigh 90 I can’t make him do anything. I have 0 help and 3 kids that I am so missing out on. And I’m so afraid he will have a seizure and come after me, or I will walk in one day and find him….. I don’t know doing something that will scare the shit out of me. I give him His meds over 40 of them all at different times some 2 4 8 12 hours and others as needed. I can’t eat. I don’t know if I’m sick or just scared and my nerves tour up. I don’t know where to turn or what to do. Any advice would be great Thank you. Ps he has tumors in brain bone lung soft skin tissue.
    Viewing 20 reply threads
    • Replies
        Eric
        Participant

          Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

            csellers23
            Participant
              I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not
              Eric
              Participant

                I am 35 yo male who recently was diagnosed with melanoma in situ. 

                Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering.   We males don't want to be soft, and weak. What is your name if may I ask? Eric

                Eric
                Participant

                  I am 35 yo male who recently was diagnosed with melanoma in situ. 

                  Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering.   We males don't want to be soft, and weak. What is your name if may I ask? Eric

                  csellers23
                  Participant
                    Crystale
                    csellers23
                    Participant
                      Crystale
                      csellers23
                      Participant
                        Crystale
                        Eric
                        Participant

                          I am 35 yo male who recently was diagnosed with melanoma in situ. 

                          Please remember that your husband is probably scared what is happening to him, and doesn't want to show any signes of it. I know that because I am pretending that in front of my wife, but inside of me I have been suffering.   We males don't want to be soft, and weak. What is your name if may I ask? Eric

                          Carole K
                          Participant

                            Crystal,

                            Am I courrect about your husband taking a lot of meds?  If so, could one be interacting in a negative way causing some of these issues?  I don't mean to frighten you, but has he been checked for possible brain mets?  Could it be a reaction to any of the meds?  Can you call his doctor?  I can't believe the ER wouldn't keep him overnight at least.  I am sorry I don't have any answers for you.  Pleasae know I am here for you.  Hang in there.!  Sending you big hugs.

                            Love and Light

                            Carole K

                            Carole K
                            Participant

                              Crystal,

                              Am I courrect about your husband taking a lot of meds?  If so, could one be interacting in a negative way causing some of these issues?  I don't mean to frighten you, but has he been checked for possible brain mets?  Could it be a reaction to any of the meds?  Can you call his doctor?  I can't believe the ER wouldn't keep him overnight at least.  I am sorry I don't have any answers for you.  Pleasae know I am here for you.  Hang in there.!  Sending you big hugs.

                              Love and Light

                              Carole K

                              Carole K
                              Participant

                                Crystal,

                                Am I courrect about your husband taking a lot of meds?  If so, could one be interacting in a negative way causing some of these issues?  I don't mean to frighten you, but has he been checked for possible brain mets?  Could it be a reaction to any of the meds?  Can you call his doctor?  I can't believe the ER wouldn't keep him overnight at least.  I am sorry I don't have any answers for you.  Pleasae know I am here for you.  Hang in there.!  Sending you big hugs.

                                Love and Light

                                Carole K

                                csellers23
                                Participant
                                  I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not
                                  csellers23
                                  Participant
                                    I know he is. But I don’t think he understands how bad it is. I hope I’m wrong about this but my instincts say I’m not
                                  Eric
                                  Participant

                                    Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

                                    Eric
                                    Participant

                                      Hello, I am very sorry to hear what is happening  to you and your family. Please be next to your husband, even though you are getting weak.  He is scared probably. please try to be strong. Eric 

                                      Jubes
                                      Participant

                                        Hi crystale

                                        this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

                                        try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

                                        Anne-Louise

                                        Jubes
                                        Participant

                                          Hi crystale

                                          this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

                                          try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

                                          Anne-Louise

                                          Jubes
                                          Participant

                                            Hi crystale

                                            this must be so frightening for you. I am in Australia. Here they have community help that we can call on for respite when we are caring for a sick person or an aged person. Do you have something like that in your local community? Sounds like you need to share the burden even if you stay there as well and just get some rest. Hopefully the doctor is right and the keytruda is fighting the mets in your husbands brain and that could be causing these symptoms. But you need some help to come and stay with you. If you can't I would not think twice about calling ER every single day until they keep him in and monitor him properly

                                            try to stay strong for him as that's what he is trying to do too. I am trying to send you strength online. Not very practical, I know, but we all feel for you 

                                            Anne-Louise

                                            Janner
                                            Participant

                                              Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

                                              Janner
                                              Participant

                                                Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

                                                Janner
                                                Participant

                                                  Call hospice yourself.  If things improve, he can go off it.  You need help and support.  Even home health care could maybe help.  Or call the local CANCER agency to see if they have any suggestions.  Tell his doc you need more help managing his symptoms!  Make a fuss to get support!

                                                  Want2help
                                                  Participant

                                                    You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

                                                    Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

                                                    Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

                                                    I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

                                                    Want2help
                                                    Participant

                                                      You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

                                                      Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

                                                      Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

                                                      I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

                                                      Want2help
                                                      Participant

                                                        You need help before you too get ill, emotionally or physicallly. I hope that Keytruda is working, but even then you need some support until it gets better.

                                                        Is there any kind of community help like Jubes mentioned? Can you talk to the nurses where your husband is being treated, maybe they know who to talk to.

                                                        Do you have family (his or yours) close to you? Or friends? Maybe people have already offered their help – call them and talk to people that you think will understand. Maybe someone can come and stay with you for one or two days every week so you can have some time "off" and get some rest?

                                                        I'm sorry that I can't give any more answers because I don't know the social/health care system where you are. I'm very sorry about the situation you are in!

                                                          csellers23
                                                          Participant
                                                            I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all
                                                            csellers23
                                                            Participant
                                                              I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all
                                                              csellers23
                                                              Participant
                                                                I do want to say I didn’t mean for it to come off like his oncl isn’t good. He is great! He’s always there when I call he thinks this is the treatment is working. Its just been a long week and a scary on. The Er isn’t much but vandy is great! Thank you all, I was just venting and now can’t get it removed. Sorry I just had a moment. It can be so hard at times. I’m praying for you all
                                                              arthurjedi007
                                                              Participant

                                                                I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

                                                                Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

                                                                Artie

                                                                  ed williams
                                                                  Participant

                                                                    Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed

                                                                    arthurjedi007
                                                                    Participant

                                                                      You are right. Looks like they go to vandy so should have lots of companies to help I would think.

                                                                      Artie

                                                                      arthurjedi007
                                                                      Participant

                                                                        You are right. Looks like they go to vandy so should have lots of companies to help I would think.

                                                                        Artie

                                                                        arthurjedi007
                                                                        Participant

                                                                          You are right. Looks like they go to vandy so should have lots of companies to help I would think.

                                                                          Artie

                                                                          ed williams
                                                                          Participant

                                                                            Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed

                                                                            ed williams
                                                                            Participant

                                                                              Artie, I think she was talking about UK basketball in the NCAA tournament, not that she lives in the UK (England). Ed

                                                                            arthurjedi007
                                                                            Participant

                                                                              I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

                                                                              Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

                                                                              Artie

                                                                              arthurjedi007
                                                                              Participant

                                                                                I hope things get better. Some of his symptoms are probably the brain mets which your doctor believes the Keytruda is working on. I'm no doc of course but I tend to agree. Probably getting the normal good affect of immunotherapy where the mets swell a little before they shrink. In the brain that could be causing some of his symptoms.

                                                                                Here in the states the nurse provided my parents with a 20 page list of companies they can call just in my home town for various levels of care. Anywhere from care giver to nurse to nurse practitioner. Hopefully they have something like that in the uk. Hospice at least here is usually for folks who are at the end so I didnt want anything to do with that. But the one time my parents took a break hiring the caregiver it was great.

                                                                                Artie

                                                                                jbronicki
                                                                                Participant

                                                                                  Hi Crystale,

                                                                                  Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

                                                                                  Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

                                                                                  You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

                                                                                  [email protected] (contact for the social work department)

                                                                                  (615) 936-2113

                                                                                  And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

                                                                                  http://www.vanderbilthealth.com/main/14145

                                                                                  Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

                                                                                  Best,

                                                                                  Jackie

                                                                                   

                                                                                  jbronicki
                                                                                  Participant

                                                                                    Hi Crystale,

                                                                                    Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

                                                                                    Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

                                                                                    You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

                                                                                    [email protected] (contact for the social work department)

                                                                                    (615) 936-2113

                                                                                    And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

                                                                                    http://www.vanderbilthealth.com/main/14145

                                                                                    Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

                                                                                    Best,

                                                                                    Jackie

                                                                                     

                                                                                    jbronicki
                                                                                    Participant

                                                                                      Hi Crystale,

                                                                                      Please do not apologize for having a moment, you are dealing with far more than most right now and I can't even imagine the stress.  I think right now it is overwhelming and you need some help.

                                                                                      Being a librarian and a past medical librarian (as well as research coordinator for dialysis study), I always find power in finding out what resources are available to you.

                                                                                      You may be too overwhelmed right now, so I might recommend reaching out to the social work department at Vanderbilt, they could possibly arrange for help for you such as transportation, child care, etc (that is what they are there for):

                                                                                      [email protected] (contact for the social work department)

                                                                                      (615) 936-2113

                                                                                      And also from my own experience with both my parents treatment and my husband, a patient advocate can arrange different help for you:

                                                                                      http://www.vanderbilthealth.com/main/14145

                                                                                      Many hugs and prayers to you and your family and it's okay for you to be anxious, only normal at this time, be kind to yourself, you are doing great.

                                                                                      Best,

                                                                                      Jackie

                                                                                       

                                                                                      sweetaugust
                                                                                      Participant

                                                                                        Hi Crystale,

                                                                                        I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

                                                                                        Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

                                                                                        So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

                                                                                        Please keep us posted on how he is doing.  All my best, Laurie

                                                                                        sweetaugust
                                                                                        Participant

                                                                                          Hi Crystale,

                                                                                          I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

                                                                                          Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

                                                                                          So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

                                                                                          Please keep us posted on how he is doing.  All my best, Laurie

                                                                                          sweetaugust
                                                                                          Participant

                                                                                            Hi Crystale,

                                                                                            I have never had brain mets, but mets to many nodes throughout my upper body and a mass on my liver.  But my biggest and meanest node kept growing 6 months into my Keytruda/MK-3475 treatment.  All other mets subsided and went back to normal in the first 3 months of treatment, but one was a fighter and kept growing to the size of a peach in those 6 months.  Then one night in April of 2013, I was awoken at 3am to stabbing pains every 5-8 seconds for 24 hours.  I was petrified and packed my bag to go to the ER.  But my doctor said it sounded like the drug was working and the tumor was dying.  Just take some Tylenol and they will see me in a few days.  I was beside myself in so much pain….and you tell me to pop some Tylenol….ARE YOU KIDDING ME??????…..like that will do anything and like it was nothing to be stabbed every 5-8 seconds?!?!?!?!  And then the next morning I woke to that tumor had grown to the size of a baseball and was hanging out of me like it was trying to get out of my arm pit.  Again, the doctors said that yes, it is sounding more and more like the drug is doing it's thing and the tumor is dying.

                                                                                            Well, the pain stopped after 24 hours, and two days later the tumor shrunk back down to it's normal peach size, and then I scanned a week later and it showed that the tumor had liquified and was likely dead, necrotic tissue now.  And that baby continued to shrink about 15% every 5 weeks until it is now almost the size of a normal lymph node….but it will never be a normal size again, because of the scar tissue from it blowing up.

                                                                                            So I truly am hoping that your husband is just feeling the side effects of the drug working and that it is just placing hard pressure on other parts of his brain and that is what is causing the trouble.  But I too was more than frustrated that the doctors never even mentioned that as a side effect of the treatment….that my node might grow to the point of crazy pain before it blew up and died.  That information would have really been helpful. 

                                                                                            Please keep us posted on how he is doing.  All my best, Laurie

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