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My Dr. wants me in Hospice

Forums General Melanoma Community My Dr. wants me in Hospice

  • Post
    DeniseK
    Participant

      I am at a loss of what to say and so upset I can hardly stop crying.  I spoke with my doctor and the temodar is not working,  He said my disease is progressing too fast and I could die at any moment from bleeding in my brain and pressure.  My head really hurts and he wants me in hospice for pain management until the inevetible happens.  I am not ready to give up.  I know I am losing this battle but I am not ready to go.

      I got a response back from Merck.  The doctor there said they are planning a study of the Anti PD-1 trial to start soon for people with brain mets, and they are planning a compassionate use program that would be fair for everyone in need to have access.  He did not give me a time frame but I don't think I will have time.  

      I am so sorry that I am not staying positive in this time but I am trying so hard.

      As always All my best to you all and thank you so much for all your support throughout my journey.

      I am scared.

      Denise

    Viewing 68 reply threads
    • Replies
        casagrayson
        Participant

          Oh, Denise!  I know how terrifying this must be.  Please don't give up hope, though!!  Is the doctor taking you off Temador no matter what, or is he saying Hospice or Temador?  If he is taking you off the meds then there is no reason not to let Hospice come in and help you manage the pain.  You can quit Hospice any time!  If the anti-PD1 becomes available you just jump right on that.   I don't know what I'd do if the doctor was giving me a choice to stay on the meds, though.  Hopefully someone with more answers than myself will be along shortly to help you sort through these issues.

          I just want you to know that you are in my thoughts daily, and I will specifically pray that Merck releases the drug for compassionate use quickly.

          Susan

          casagrayson
          Participant

            Oh, Denise!  I know how terrifying this must be.  Please don't give up hope, though!!  Is the doctor taking you off Temador no matter what, or is he saying Hospice or Temador?  If he is taking you off the meds then there is no reason not to let Hospice come in and help you manage the pain.  You can quit Hospice any time!  If the anti-PD1 becomes available you just jump right on that.   I don't know what I'd do if the doctor was giving me a choice to stay on the meds, though.  Hopefully someone with more answers than myself will be along shortly to help you sort through these issues.

            I just want you to know that you are in my thoughts daily, and I will specifically pray that Merck releases the drug for compassionate use quickly.

            Susan

            casagrayson
            Participant

              Oh, Denise!  I know how terrifying this must be.  Please don't give up hope, though!!  Is the doctor taking you off Temador no matter what, or is he saying Hospice or Temador?  If he is taking you off the meds then there is no reason not to let Hospice come in and help you manage the pain.  You can quit Hospice any time!  If the anti-PD1 becomes available you just jump right on that.   I don't know what I'd do if the doctor was giving me a choice to stay on the meds, though.  Hopefully someone with more answers than myself will be along shortly to help you sort through these issues.

              I just want you to know that you are in my thoughts daily, and I will specifically pray that Merck releases the drug for compassionate use quickly.

              Susan

              awillett1991
              Participant

                Denise, 

                it is definitely true that people go into and come out of hospice.  They are experts at managing pain so if you are in excruciating pain, maybe having some help from them would be good.  I am very sorry you are in this place, it does sound very scary.  I continue to remember you in my prayers. 

                Amy

                awillett1991
                Participant

                  Denise, 

                  it is definitely true that people go into and come out of hospice.  They are experts at managing pain so if you are in excruciating pain, maybe having some help from them would be good.  I am very sorry you are in this place, it does sound very scary.  I continue to remember you in my prayers. 

                  Amy

                  awillett1991
                  Participant

                    Denise, 

                    it is definitely true that people go into and come out of hospice.  They are experts at managing pain so if you are in excruciating pain, maybe having some help from them would be good.  I am very sorry you are in this place, it does sound very scary.  I continue to remember you in my prayers. 

                    Amy

                    JuleFL
                    Participant

                      Dear Denise,

                      You have touched the hearts of many of us who read this board.  Hospice should be able to help your pain and make you comfortable and you can decide how much help to get from them.  You are in my prayers.

                      Jule

                      JuleFL
                      Participant

                        Dear Denise,

                        You have touched the hearts of many of us who read this board.  Hospice should be able to help your pain and make you comfortable and you can decide how much help to get from them.  You are in my prayers.

                        Jule

                          DeniseK
                          Participant

                            Thank you all so much.  He said go into Hospice and let nature take it's course.  There is nothing left to do.

                            Obviously devastating news.  I have things that need to be done.  I feel like there's a mad rush to tie up some loose ends.  

                             

                            DeniseK
                            Participant

                              Thank you all so much.  He said go into Hospice and let nature take it's course.  There is nothing left to do.

                              Obviously devastating news.  I have things that need to be done.  I feel like there's a mad rush to tie up some loose ends.  

                               

                              deardad
                              Participant

                                I'm at loss as well. I don't know how to comfort you at this time but know that this community is with you. Some things we cannot control, but there is never a need to give up hope either.

                                Hang in there.

                                Love 

                                Nahmi from Melbourne

                                deardad
                                Participant

                                  I'm at loss as well. I don't know how to comfort you at this time but know that this community is with you. Some things we cannot control, but there is never a need to give up hope either.

                                  Hang in there.

                                  Love 

                                  Nahmi from Melbourne

                                  deardad
                                  Participant

                                    I'm at loss as well. I don't know how to comfort you at this time but know that this community is with you. Some things we cannot control, but there is never a need to give up hope either.

                                    Hang in there.

                                    Love 

                                    Nahmi from Melbourne

                                    DeniseK
                                    Participant

                                      Thank you all so much.  He said go into Hospice and let nature take it's course.  There is nothing left to do.

                                      Obviously devastating news.  I have things that need to be done.  I feel like there's a mad rush to tie up some loose ends.  

                                       

                                    JuleFL
                                    Participant

                                      Dear Denise,

                                      You have touched the hearts of many of us who read this board.  Hospice should be able to help your pain and make you comfortable and you can decide how much help to get from them.  You are in my prayers.

                                      Jule

                                      washoegal
                                      Participant

                                        Denise, My heart is breaking for you!  Can you bring hospice in at home?  At least this would give you more freedom to keep doing some of the thing that you want/need to do.  Maybe it is at least time to start the conversation with hospice.  I know I had my mother set up on a "limited" hospice type care.  I don't blame you for not wanting to give up, and why should you! 

                                        With love and prayers,

                                        Mary

                                        washoegal
                                        Participant

                                          Denise, My heart is breaking for you!  Can you bring hospice in at home?  At least this would give you more freedom to keep doing some of the thing that you want/need to do.  Maybe it is at least time to start the conversation with hospice.  I know I had my mother set up on a "limited" hospice type care.  I don't blame you for not wanting to give up, and why should you! 

                                          With love and prayers,

                                          Mary

                                          washoegal
                                          Participant

                                            Denise, My heart is breaking for you!  Can you bring hospice in at home?  At least this would give you more freedom to keep doing some of the thing that you want/need to do.  Maybe it is at least time to start the conversation with hospice.  I know I had my mother set up on a "limited" hospice type care.  I don't blame you for not wanting to give up, and why should you! 

                                            With love and prayers,

                                            Mary

                                            SABKLYN
                                            Participant

                                              Denise,

                                              I'm truly sorry for this setback and I know it must be terrifying.  But, while the PD-1 decisions are made, there is no sense in enduring the pain you've been going through.  Hospice can best manage that and as others have indicated, there are many instances of patients leaving hospice care to continue treatment.  You are in our thoughts and prayers as you deal with the current situation.

                                              SA

                                              SABKLYN
                                              Participant

                                                Denise,

                                                I'm truly sorry for this setback and I know it must be terrifying.  But, while the PD-1 decisions are made, there is no sense in enduring the pain you've been going through.  Hospice can best manage that and as others have indicated, there are many instances of patients leaving hospice care to continue treatment.  You are in our thoughts and prayers as you deal with the current situation.

                                                SA

                                                SABKLYN
                                                Participant

                                                  Denise,

                                                  I'm truly sorry for this setback and I know it must be terrifying.  But, while the PD-1 decisions are made, there is no sense in enduring the pain you've been going through.  Hospice can best manage that and as others have indicated, there are many instances of patients leaving hospice care to continue treatment.  You are in our thoughts and prayers as you deal with the current situation.

                                                  SA

                                                  BrianP
                                                  Participant

                                                    Denise,

                                                    I'm so sorry for this latest news.  I will pray extra hard for you.  I think you've gotten some good advice above.  I truly admire your fight Denise and I only hope that I can follow your example if I'm faced with similar challenges.  It is not our challenges that define us, it is how we handle our challenges that define us and you have truly defined yourself as an amazing person.  Stay strong and know this board is with you!

                                                    Brian

                                                    BrianP
                                                    Participant

                                                      Denise,

                                                      I'm so sorry for this latest news.  I will pray extra hard for you.  I think you've gotten some good advice above.  I truly admire your fight Denise and I only hope that I can follow your example if I'm faced with similar challenges.  It is not our challenges that define us, it is how we handle our challenges that define us and you have truly defined yourself as an amazing person.  Stay strong and know this board is with you!

                                                      Brian

                                                      BrianP
                                                      Participant

                                                        Denise,

                                                        I'm so sorry for this latest news.  I will pray extra hard for you.  I think you've gotten some good advice above.  I truly admire your fight Denise and I only hope that I can follow your example if I'm faced with similar challenges.  It is not our challenges that define us, it is how we handle our challenges that define us and you have truly defined yourself as an amazing person.  Stay strong and know this board is with you!

                                                        Brian

                                                        melissa ann
                                                        Participant

                                                          Denise,

                                                          I know you are scared and I am sorry. I am truly sorry.   I hope that  hospice is able to help you with your pain because I hate the idea of you experiencing so much pain while you are dealing with difficult decisions.  All I can do is share with you my experience with my husband two weeks ago.  He fought melanoma for almost 11 years.  He lived a wonderful life and was fortunate to only experience true pain for the last two months of his life.   Two and half weeks ago he very suddenly went into respiratory failure while at home.  He was so scared. He was ventilated and airlifted to the hospital where he became stable for three days.  On the fourth day, he requested and we discussed removing the vent.  A tumor had grown quickly and was compressing his heart.  He helped us to make a difficult decision.  After the vent was removed we had the most beautiful 8 hours with him.  He was pain free, awake, alert, and was able to communicate all he wanted to say to the four children and myself.  It was the hardest thing I have ever done but I am so thankful that he did not suffer.  My main goal was to never see him scared like he had been a few  nights before.  He was so very peaceful and I will forever be thankful that he was not scared and that he gave us the gift of true peace as he left us. 

                                                          I hope and pray that your pain is managed and that you are able to get the help from Anti-PD1 and Merck.  I hope that you are able to stay positive and that you feel supported and loved.  I pray that you will not be scared no matter what happens.  I pray for your healing.   As a friend always said to my husband ,"don't ever give up."  Peace and healing to you Denise. 

                                                           

                                                           

                                                          melissa ann
                                                          Participant

                                                            Denise,

                                                            I know you are scared and I am sorry. I am truly sorry.   I hope that  hospice is able to help you with your pain because I hate the idea of you experiencing so much pain while you are dealing with difficult decisions.  All I can do is share with you my experience with my husband two weeks ago.  He fought melanoma for almost 11 years.  He lived a wonderful life and was fortunate to only experience true pain for the last two months of his life.   Two and half weeks ago he very suddenly went into respiratory failure while at home.  He was so scared. He was ventilated and airlifted to the hospital where he became stable for three days.  On the fourth day, he requested and we discussed removing the vent.  A tumor had grown quickly and was compressing his heart.  He helped us to make a difficult decision.  After the vent was removed we had the most beautiful 8 hours with him.  He was pain free, awake, alert, and was able to communicate all he wanted to say to the four children and myself.  It was the hardest thing I have ever done but I am so thankful that he did not suffer.  My main goal was to never see him scared like he had been a few  nights before.  He was so very peaceful and I will forever be thankful that he was not scared and that he gave us the gift of true peace as he left us. 

                                                            I hope and pray that your pain is managed and that you are able to get the help from Anti-PD1 and Merck.  I hope that you are able to stay positive and that you feel supported and loved.  I pray that you will not be scared no matter what happens.  I pray for your healing.   As a friend always said to my husband ,"don't ever give up."  Peace and healing to you Denise. 

                                                             

                                                             

                                                              JerryfromFauq
                                                              Participant

                                                                Very scared for you.  You have fought long and hard.  Work on getting the pain down so that you can do what you need to get done.  I hope the trial will open in time for you to get involved.

                                                                JerryfromFauq
                                                                Participant

                                                                  Very scared for you.  You have fought long and hard.  Work on getting the pain down so that you can do what you need to get done.  I hope the trial will open in time for you to get involved.

                                                                  JerryfromFauq
                                                                  Participant

                                                                    Very scared for you.  You have fought long and hard.  Work on getting the pain down so that you can do what you need to get done.  I hope the trial will open in time for you to get involved.

                                                                  melissa ann
                                                                  Participant

                                                                    Denise,

                                                                    I know you are scared and I am sorry. I am truly sorry.   I hope that  hospice is able to help you with your pain because I hate the idea of you experiencing so much pain while you are dealing with difficult decisions.  All I can do is share with you my experience with my husband two weeks ago.  He fought melanoma for almost 11 years.  He lived a wonderful life and was fortunate to only experience true pain for the last two months of his life.   Two and half weeks ago he very suddenly went into respiratory failure while at home.  He was so scared. He was ventilated and airlifted to the hospital where he became stable for three days.  On the fourth day, he requested and we discussed removing the vent.  A tumor had grown quickly and was compressing his heart.  He helped us to make a difficult decision.  After the vent was removed we had the most beautiful 8 hours with him.  He was pain free, awake, alert, and was able to communicate all he wanted to say to the four children and myself.  It was the hardest thing I have ever done but I am so thankful that he did not suffer.  My main goal was to never see him scared like he had been a few  nights before.  He was so very peaceful and I will forever be thankful that he was not scared and that he gave us the gift of true peace as he left us. 

                                                                    I hope and pray that your pain is managed and that you are able to get the help from Anti-PD1 and Merck.  I hope that you are able to stay positive and that you feel supported and loved.  I pray that you will not be scared no matter what happens.  I pray for your healing.   As a friend always said to my husband ,"don't ever give up."  Peace and healing to you Denise. 

                                                                     

                                                                     

                                                                    Fen
                                                                    Participant

                                                                      Oh Denise, I'm so sorry.  You are an inspiration on the board and I hate to see you in this position.  Get your pain under control with hospice until the trial opens up.  Praying for you.     Fen

                                                                      Fen
                                                                      Participant

                                                                        Oh Denise, I'm so sorry.  You are an inspiration on the board and I hate to see you in this position.  Get your pain under control with hospice until the trial opens up.  Praying for you.     Fen

                                                                        Fen
                                                                        Participant

                                                                          Oh Denise, I'm so sorry.  You are an inspiration on the board and I hate to see you in this position.  Get your pain under control with hospice until the trial opens up.  Praying for you.     Fen

                                                                          aldakota22
                                                                          Participant

                                                                            So very sorry to read your post today.Like everyone here I am praying that you get in the trial ASAP & that it will kick melanomas ass.Like you say you are not ready to give up.Beat the Beast.    Al

                                                                            aldakota22
                                                                            Participant

                                                                              So very sorry to read your post today.Like everyone here I am praying that you get in the trial ASAP & that it will kick melanomas ass.Like you say you are not ready to give up.Beat the Beast.    Al

                                                                              aldakota22
                                                                              Participant

                                                                                So very sorry to read your post today.Like everyone here I am praying that you get in the trial ASAP & that it will kick melanomas ass.Like you say you are not ready to give up.Beat the Beast.    Al

                                                                                POW
                                                                                Participant

                                                                                  Oh, Denise! Oh, I'm so sorry to hear this news! I'm especially sorry that you are in such distress– both physical and emotional. That's just not right; it's not fair! Here– let me give you a big hug (( HUG!!)

                                                                                  Hospice is a good thing, not a bad thing. It does NOT mean that you are going to die. It does NOT mean that you have to stop all curative treatment. Different hospices have different rules. Some are for-profit and some are non-profit so that may make a difference.  

                                                                                  If you are seeking "aggressive treatment" (i.e., on chemo for example) then you usually but not always have to go off hospice during the treatments. But then you can go back on hospice when the treatments are over. My brother was on hopsice practically from the day he was diagnosed. He was taking Zelboraf for several months and hospice had no problem with that, for some reason. When he went in for a 1-day Gamma Knife procedure (considered "aggressive treatment" by hospice) he went off hospice for that one day and was re-admitted the next day. When he got a Yervoy treatment (again, considered "aggressive") he went off on the day of the infusion and then back on the next day. So if you do get compassionate use of anti-PD1, you can still get the treatment and then go back on hospice the next day. Again, this may depend on the particular hospice organization you are with.

                                                                                  Notice I say "on hospice" not "in hospice". Ninety percent of hospice care is done in the home; very few people are actually admitted to a hospice facility. They provide so many services to both the patient and to the patient's family that I can't imagine having done without them for all those months. Pain management, of course, is primary. But nurses come 1-5 times a week as needed to check how you are doing, your nutrition, dispense the many, many medications you probably take into pill organizers (a task my brother couldn't do when his brain tumors got bad), provide a 24/7 hotline to call for immediate assistance from a nearby nurse, doctor, or even an amblance (great peace of mind there). They will keep track of all your different doctors' appointments and communicate directly with the doctors when you or the hospice nurse have medical questions or concerns. All kinds of stuff to make your life easier.

                                                                                  They have caring, experienced social workers, too, who can help you tie up your "loose ends", fill out complicated paper work, arrange for transportation if you can't drive, arrange for in-home help for you to bathe and dress and eat and do your laundry when you are too fatigued to bother on your own. And they listen. Just listen  with care and compassion and experience to you and to your loved ones as you struggle with all the emotional ups and downs this disease creates. As a caregiver, I got more help and support from the social worker than did my strong, silent brother. Your family may well do the same. 

                                                                                  Don't be afraid of hospice– it is not a one-way street. Hospice is an organization specially trained and experienced in helping patients and their families deal with complex and emotionally difficult end-of-life issues even if your life does not actually end.

                                                                                  Don't give up. Don't stop trying for another treatment if that is what you want. But do at least talk to a really good hospice organization in your area to find out how they can help you. You owe it to yourself and to your loved ones to at least check it out. 

                                                                                  I pray that whether you decide to accept hospice help or not, you find some way to be free of pain and free of fear. That is my biggest wish for you. And here, have another heart-felt hug ((HUG!!))

                                                                                  Pat

                                                                                  POW
                                                                                  Participant

                                                                                    Oh, Denise! Oh, I'm so sorry to hear this news! I'm especially sorry that you are in such distress– both physical and emotional. That's just not right; it's not fair! Here– let me give you a big hug (( HUG!!)

                                                                                    Hospice is a good thing, not a bad thing. It does NOT mean that you are going to die. It does NOT mean that you have to stop all curative treatment. Different hospices have different rules. Some are for-profit and some are non-profit so that may make a difference.  

                                                                                    If you are seeking "aggressive treatment" (i.e., on chemo for example) then you usually but not always have to go off hospice during the treatments. But then you can go back on hospice when the treatments are over. My brother was on hopsice practically from the day he was diagnosed. He was taking Zelboraf for several months and hospice had no problem with that, for some reason. When he went in for a 1-day Gamma Knife procedure (considered "aggressive treatment" by hospice) he went off hospice for that one day and was re-admitted the next day. When he got a Yervoy treatment (again, considered "aggressive") he went off on the day of the infusion and then back on the next day. So if you do get compassionate use of anti-PD1, you can still get the treatment and then go back on hospice the next day. Again, this may depend on the particular hospice organization you are with.

                                                                                    Notice I say "on hospice" not "in hospice". Ninety percent of hospice care is done in the home; very few people are actually admitted to a hospice facility. They provide so many services to both the patient and to the patient's family that I can't imagine having done without them for all those months. Pain management, of course, is primary. But nurses come 1-5 times a week as needed to check how you are doing, your nutrition, dispense the many, many medications you probably take into pill organizers (a task my brother couldn't do when his brain tumors got bad), provide a 24/7 hotline to call for immediate assistance from a nearby nurse, doctor, or even an amblance (great peace of mind there). They will keep track of all your different doctors' appointments and communicate directly with the doctors when you or the hospice nurse have medical questions or concerns. All kinds of stuff to make your life easier.

                                                                                    They have caring, experienced social workers, too, who can help you tie up your "loose ends", fill out complicated paper work, arrange for transportation if you can't drive, arrange for in-home help for you to bathe and dress and eat and do your laundry when you are too fatigued to bother on your own. And they listen. Just listen  with care and compassion and experience to you and to your loved ones as you struggle with all the emotional ups and downs this disease creates. As a caregiver, I got more help and support from the social worker than did my strong, silent brother. Your family may well do the same. 

                                                                                    Don't be afraid of hospice– it is not a one-way street. Hospice is an organization specially trained and experienced in helping patients and their families deal with complex and emotionally difficult end-of-life issues even if your life does not actually end.

                                                                                    Don't give up. Don't stop trying for another treatment if that is what you want. But do at least talk to a really good hospice organization in your area to find out how they can help you. You owe it to yourself and to your loved ones to at least check it out. 

                                                                                    I pray that whether you decide to accept hospice help or not, you find some way to be free of pain and free of fear. That is my biggest wish for you. And here, have another heart-felt hug ((HUG!!))

                                                                                    Pat

                                                                                      Brendan
                                                                                      Participant

                                                                                        Denise,

                                                                                        I am sorry to hear your most recent news.  You continue to inspire and you are in my prayers.

                                                                                        God bless,

                                                                                        Brendan

                                                                                         

                                                                                         

                                                                                        Brendan
                                                                                        Participant

                                                                                          Denise,

                                                                                          I am sorry to hear your most recent news.  You continue to inspire and you are in my prayers.

                                                                                          God bless,

                                                                                          Brendan

                                                                                           

                                                                                           

                                                                                          Brendan
                                                                                          Participant

                                                                                            Denise,

                                                                                            I am sorry to hear your most recent news.  You continue to inspire and you are in my prayers.

                                                                                            God bless,

                                                                                            Brendan

                                                                                             

                                                                                             

                                                                                          POW
                                                                                          Participant

                                                                                            Oh, Denise! Oh, I'm so sorry to hear this news! I'm especially sorry that you are in such distress– both physical and emotional. That's just not right; it's not fair! Here– let me give you a big hug (( HUG!!)

                                                                                            Hospice is a good thing, not a bad thing. It does NOT mean that you are going to die. It does NOT mean that you have to stop all curative treatment. Different hospices have different rules. Some are for-profit and some are non-profit so that may make a difference.  

                                                                                            If you are seeking "aggressive treatment" (i.e., on chemo for example) then you usually but not always have to go off hospice during the treatments. But then you can go back on hospice when the treatments are over. My brother was on hopsice practically from the day he was diagnosed. He was taking Zelboraf for several months and hospice had no problem with that, for some reason. When he went in for a 1-day Gamma Knife procedure (considered "aggressive treatment" by hospice) he went off hospice for that one day and was re-admitted the next day. When he got a Yervoy treatment (again, considered "aggressive") he went off on the day of the infusion and then back on the next day. So if you do get compassionate use of anti-PD1, you can still get the treatment and then go back on hospice the next day. Again, this may depend on the particular hospice organization you are with.

                                                                                            Notice I say "on hospice" not "in hospice". Ninety percent of hospice care is done in the home; very few people are actually admitted to a hospice facility. They provide so many services to both the patient and to the patient's family that I can't imagine having done without them for all those months. Pain management, of course, is primary. But nurses come 1-5 times a week as needed to check how you are doing, your nutrition, dispense the many, many medications you probably take into pill organizers (a task my brother couldn't do when his brain tumors got bad), provide a 24/7 hotline to call for immediate assistance from a nearby nurse, doctor, or even an amblance (great peace of mind there). They will keep track of all your different doctors' appointments and communicate directly with the doctors when you or the hospice nurse have medical questions or concerns. All kinds of stuff to make your life easier.

                                                                                            They have caring, experienced social workers, too, who can help you tie up your "loose ends", fill out complicated paper work, arrange for transportation if you can't drive, arrange for in-home help for you to bathe and dress and eat and do your laundry when you are too fatigued to bother on your own. And they listen. Just listen  with care and compassion and experience to you and to your loved ones as you struggle with all the emotional ups and downs this disease creates. As a caregiver, I got more help and support from the social worker than did my strong, silent brother. Your family may well do the same. 

                                                                                            Don't be afraid of hospice– it is not a one-way street. Hospice is an organization specially trained and experienced in helping patients and their families deal with complex and emotionally difficult end-of-life issues even if your life does not actually end.

                                                                                            Don't give up. Don't stop trying for another treatment if that is what you want. But do at least talk to a really good hospice organization in your area to find out how they can help you. You owe it to yourself and to your loved ones to at least check it out. 

                                                                                            I pray that whether you decide to accept hospice help or not, you find some way to be free of pain and free of fear. That is my biggest wish for you. And here, have another heart-felt hug ((HUG!!))

                                                                                            Pat

                                                                                            JerryfromFauq
                                                                                            Participant

                                                                                              Check with ALL Hospice  AND PALATIVE care organizations in you area.  EAch may have different rules.

                                                                                               

                                                                                              JerryfromFauq
                                                                                              Participant

                                                                                                Check with ALL Hospice  AND PALATIVE care organizations in you area.  EAch may have different rules.

                                                                                                 

                                                                                                  MichaelFL
                                                                                                  Participant

                                                                                                    I agree with Jerry, do what needs to be done as far as personal matters are concerned, and let hospice deal with the pain management issues as soon as possible.

                                                                                                    God bless you sweetheart.

                                                                                                     

                                                                                                     

                                                                                                     

                                                                                                    MichaelFL
                                                                                                    Participant

                                                                                                      I agree with Jerry, do what needs to be done as far as personal matters are concerned, and let hospice deal with the pain management issues as soon as possible.

                                                                                                      God bless you sweetheart.

                                                                                                       

                                                                                                       

                                                                                                       

                                                                                                      MichaelFL
                                                                                                      Participant

                                                                                                        I agree with Jerry, do what needs to be done as far as personal matters are concerned, and let hospice deal with the pain management issues as soon as possible.

                                                                                                        God bless you sweetheart.

                                                                                                         

                                                                                                         

                                                                                                         

                                                                                                      JerryfromFauq
                                                                                                      Participant

                                                                                                        Check with ALL Hospice  AND PALATIVE care organizations in you area.  EAch may have different rules.

                                                                                                         

                                                                                                        killmel
                                                                                                        Participant

                                                                                                          Denise,

                                                                                                          You are the bravest person that I know. You always kept fighting.

                                                                                                          You  were always there to help someone else no matter hard bad things were for you. You have such a big heart!!

                                                                                                          God will watch over you and your family through this tough time. Whatever is to be, you cannot control the outcome now. Miracles do happen and you deserve one. Have faith and take care of your pain. It is time to put yourself first.

                                                                                                          I will continue to pray for you and your family.

                                                                                                          MaryJo

                                                                                                          killmel
                                                                                                          Participant

                                                                                                            Denise,

                                                                                                            You are the bravest person that I know. You always kept fighting.

                                                                                                            You  were always there to help someone else no matter hard bad things were for you. You have such a big heart!!

                                                                                                            God will watch over you and your family through this tough time. Whatever is to be, you cannot control the outcome now. Miracles do happen and you deserve one. Have faith and take care of your pain. It is time to put yourself first.

                                                                                                            I will continue to pray for you and your family.

                                                                                                            MaryJo

                                                                                                            killmel
                                                                                                            Participant

                                                                                                              Denise,

                                                                                                              You are the bravest person that I know. You always kept fighting.

                                                                                                              You  were always there to help someone else no matter hard bad things were for you. You have such a big heart!!

                                                                                                              God will watch over you and your family through this tough time. Whatever is to be, you cannot control the outcome now. Miracles do happen and you deserve one. Have faith and take care of your pain. It is time to put yourself first.

                                                                                                              I will continue to pray for you and your family.

                                                                                                              MaryJo

                                                                                                              Linny
                                                                                                              Participant

                                                                                                                Oh Denise, I am so sorry to hear this. Your tenacity and courage have been such an inspiration to everyone here. But as was pointed out hospice is not such a bad thing and people have come home from there. You need someone to help you get over this hurdle and these folks are the ones who can help you do it.

                                                                                                                Melanoma International has a post that may provide some additional informaiton or help for you with regard to pain management: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34642. Don't know if there's anything on that post or webinar link that may belp but it certainly can't hurt.

                                                                                                                Sending you hugs and prayers from Pennsylvania.

                                                                                                                 

                                                                                                                Linny
                                                                                                                Participant

                                                                                                                  Oh Denise, I am so sorry to hear this. Your tenacity and courage have been such an inspiration to everyone here. But as was pointed out hospice is not such a bad thing and people have come home from there. You need someone to help you get over this hurdle and these folks are the ones who can help you do it.

                                                                                                                  Melanoma International has a post that may provide some additional informaiton or help for you with regard to pain management: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34642. Don't know if there's anything on that post or webinar link that may belp but it certainly can't hurt.

                                                                                                                  Sending you hugs and prayers from Pennsylvania.

                                                                                                                   

                                                                                                                    NYKaren
                                                                                                                    Participant

                                                                                                                      Dear Denise,

                                                                                                                      I wish i had some some magic words of comfort and healing for you.  You are in my thoughts and prayers. It sounds like hospice would be a good thing, so I hope if that's what you decide, it gets done quickly and that you get your pain levels down. 

                                                                                                                      {{Hugs}}

                                                                                                                      Karen

                                                                                                                      NYKaren
                                                                                                                      Participant

                                                                                                                        Dear Denise,

                                                                                                                        I wish i had some some magic words of comfort and healing for you.  You are in my thoughts and prayers. It sounds like hospice would be a good thing, so I hope if that's what you decide, it gets done quickly and that you get your pain levels down. 

                                                                                                                        {{Hugs}}

                                                                                                                        Karen

                                                                                                                        NYKaren
                                                                                                                        Participant

                                                                                                                          Dear Denise,

                                                                                                                          I wish i had some some magic words of comfort and healing for you.  You are in my thoughts and prayers. It sounds like hospice would be a good thing, so I hope if that's what you decide, it gets done quickly and that you get your pain levels down. 

                                                                                                                          {{Hugs}}

                                                                                                                          Karen

                                                                                                                        Linny
                                                                                                                        Participant

                                                                                                                          Oh Denise, I am so sorry to hear this. Your tenacity and courage have been such an inspiration to everyone here. But as was pointed out hospice is not such a bad thing and people have come home from there. You need someone to help you get over this hurdle and these folks are the ones who can help you do it.

                                                                                                                          Melanoma International has a post that may provide some additional informaiton or help for you with regard to pain management: http://forum.melanomainternational.org/mif/viewtopic.php?f=54&t=34642. Don't know if there's anything on that post or webinar link that may belp but it certainly can't hurt.

                                                                                                                          Sending you hugs and prayers from Pennsylvania.

                                                                                                                           

                                                                                                                          Janet Lee
                                                                                                                          Participant

                                                                                                                            Oh, Denise, I too, like all your friends and admirers above, am so sorry to read this post from you. I hate  to hear that you are scared. You've gotten excellent suggestions and comments from everyone here, and I hope you will get the help and assistance from hospice so that you can get those things accomplisished. My fervent prayers are with you and also with Merck to get you into that compassionate care program. 

                                                                                                                            You are a true inspiration, Denise. Do not give up. I pray for peace for you.

                                                                                                                            Janet Lee

                                                                                                                            Janet Lee
                                                                                                                            Participant

                                                                                                                              Oh, Denise, I too, like all your friends and admirers above, am so sorry to read this post from you. I hate  to hear that you are scared. You've gotten excellent suggestions and comments from everyone here, and I hope you will get the help and assistance from hospice so that you can get those things accomplisished. My fervent prayers are with you and also with Merck to get you into that compassionate care program. 

                                                                                                                              You are a true inspiration, Denise. Do not give up. I pray for peace for you.

                                                                                                                              Janet Lee

                                                                                                                                Maureen038
                                                                                                                                Participant

                                                                                                                                  I have never commented on your posts before Denise, but I have always greatly admired your amazing strength and courage in your battle. Please continue to fight for yourself and for all fellow warriors. Your positive attitude has always been so uplifting to everyone!! I will pray for you to have your pain under control and for your gutsy spirit to persevere so you can fight again!! Have you tried to email other top melanoma doctors for opinions? I have found most of them very prompt in returning emails. Please take care of yourself and I wish you the very best.

                                                                                                                                  Love,

                                                                                                                                  Maureen

                                                                                                                                  Maureen038
                                                                                                                                  Participant

                                                                                                                                    I have never commented on your posts before Denise, but I have always greatly admired your amazing strength and courage in your battle. Please continue to fight for yourself and for all fellow warriors. Your positive attitude has always been so uplifting to everyone!! I will pray for you to have your pain under control and for your gutsy spirit to persevere so you can fight again!! Have you tried to email other top melanoma doctors for opinions? I have found most of them very prompt in returning emails. Please take care of yourself and I wish you the very best.

                                                                                                                                    Love,

                                                                                                                                    Maureen

                                                                                                                                    vivian
                                                                                                                                    Participant

                                                                                                                                      Denise,

                                                                                                                                      Just wanted you to know that I am thinking of you and holding you in the light.  I second what so many others have said about hospice NOT meaning you are giving up, just asking for help dealing with the pain.  Please keep us all posted as you continue with your incredibly inspiring fight against this horrible disease.

                                                                                                                                      Hugs and love,

                                                                                                                                      Lear

                                                                                                                                      vivian
                                                                                                                                      Participant

                                                                                                                                        Denise,

                                                                                                                                        Just wanted you to know that I am thinking of you and holding you in the light.  I second what so many others have said about hospice NOT meaning you are giving up, just asking for help dealing with the pain.  Please keep us all posted as you continue with your incredibly inspiring fight against this horrible disease.

                                                                                                                                        Hugs and love,

                                                                                                                                        Lear

                                                                                                                                        vivian
                                                                                                                                        Participant

                                                                                                                                          Denise,

                                                                                                                                          Just wanted you to know that I am thinking of you and holding you in the light.  I second what so many others have said about hospice NOT meaning you are giving up, just asking for help dealing with the pain.  Please keep us all posted as you continue with your incredibly inspiring fight against this horrible disease.

                                                                                                                                          Hugs and love,

                                                                                                                                          Lear

                                                                                                                                          Maureen038
                                                                                                                                          Participant

                                                                                                                                            I have never commented on your posts before Denise, but I have always greatly admired your amazing strength and courage in your battle. Please continue to fight for yourself and for all fellow warriors. Your positive attitude has always been so uplifting to everyone!! I will pray for you to have your pain under control and for your gutsy spirit to persevere so you can fight again!! Have you tried to email other top melanoma doctors for opinions? I have found most of them very prompt in returning emails. Please take care of yourself and I wish you the very best.

                                                                                                                                            Love,

                                                                                                                                            Maureen

                                                                                                                                          Janet Lee
                                                                                                                                          Participant

                                                                                                                                            Oh, Denise, I too, like all your friends and admirers above, am so sorry to read this post from you. I hate  to hear that you are scared. You've gotten excellent suggestions and comments from everyone here, and I hope you will get the help and assistance from hospice so that you can get those things accomplisished. My fervent prayers are with you and also with Merck to get you into that compassionate care program. 

                                                                                                                                            You are a true inspiration, Denise. Do not give up. I pray for peace for you.

                                                                                                                                            Janet Lee

                                                                                                                                            Ali
                                                                                                                                            Participant

                                                                                                                                              Prayers for you Denise.  Stay strong!

                                                                                                                                              Ali

                                                                                                                                              Ali
                                                                                                                                              Participant

                                                                                                                                                Prayers for you Denise.  Stay strong!

                                                                                                                                                Ali

                                                                                                                                                Ali
                                                                                                                                                Participant

                                                                                                                                                  Prayers for you Denise.  Stay strong!

                                                                                                                                                  Ali

                                                                                                                                                  kpcollins31
                                                                                                                                                  Participant

                                                                                                                                                    Denise,

                                                                                                                                                    Your fight continues to be an inspiration to many of us on this board. You are in our thoughts and prayers.

                                                                                                                                                    Kevin

                                                                                                                                                     

                                                                                                                                                    kpcollins31
                                                                                                                                                    Participant

                                                                                                                                                      Denise,

                                                                                                                                                      Your fight continues to be an inspiration to many of us on this board. You are in our thoughts and prayers.

                                                                                                                                                      Kevin

                                                                                                                                                       

                                                                                                                                                      kpcollins31
                                                                                                                                                      Participant

                                                                                                                                                        Denise,

                                                                                                                                                        Your fight continues to be an inspiration to many of us on this board. You are in our thoughts and prayers.

                                                                                                                                                        Kevin

                                                                                                                                                         

                                                                                                                                                        kylez
                                                                                                                                                        Participant

                                                                                                                                                          Oh kiddo. You're walking a little bit nearer to what has touched us all. Wishing you strength and recovery, and relief. A good hospice can focus on what is good and positive, no matter how you are supposed to feel in this situation. Keep fighting as long as it feels right. Blessings upon you. -Kyle

                                                                                                                                                          kylez
                                                                                                                                                          Participant

                                                                                                                                                            Oh kiddo. You're walking a little bit nearer to what has touched us all. Wishing you strength and recovery, and relief. A good hospice can focus on what is good and positive, no matter how you are supposed to feel in this situation. Keep fighting as long as it feels right. Blessings upon you. -Kyle

                                                                                                                                                            kylez
                                                                                                                                                            Participant

                                                                                                                                                              Oh kiddo. You're walking a little bit nearer to what has touched us all. Wishing you strength and recovery, and relief. A good hospice can focus on what is good and positive, no matter how you are supposed to feel in this situation. Keep fighting as long as it feels right. Blessings upon you. -Kyle

                                                                                                                                                              Jof
                                                                                                                                                              Participant

                                                                                                                                                                Denise,

                                                                                                                                                                You are a beautiful person and a true warrier.  You are always in my prayers and thoughts.

                                                                                                                                                                Love to you and your family.

                                                                                                                                                                Jof
                                                                                                                                                                Participant

                                                                                                                                                                  Denise,

                                                                                                                                                                  You are a beautiful person and a true warrier.  You are always in my prayers and thoughts.

                                                                                                                                                                  Love to you and your family.

                                                                                                                                                                  Jof
                                                                                                                                                                  Participant

                                                                                                                                                                    Denise,

                                                                                                                                                                    You are a beautiful person and a true warrier.  You are always in my prayers and thoughts.

                                                                                                                                                                    Love to you and your family.

                                                                                                                                                                    hdelancey23
                                                                                                                                                                    Participant
                                                                                                                                                                      Denise is my mom and I first want to thank every one of you for your support of my mom. I am trying to find the words to say. But there are none. I don’t even know where to begin. But to say I love you more than words can say and you are not gone yet. I hate cancer and I am so mad that you have to go through this. I wish I could take your pain away and be with you every second of every day that is left. I know that every day there are thousandsvof families that go through this. I am so happy to have been blessed to spend the time that we have now. I don’t understand why these horrible things have to happen to such beautiful people. I do know that god is with us through this time and that there just has to be a bigger reason or purpose for this. I love you so so much and you make me so proud that you are so strong and allowed us to have just a little more time.
                                                                                                                                                                      hdelancey23
                                                                                                                                                                      Participant
                                                                                                                                                                        Denise is my mom and I first want to thank every one of you for your support of my mom. I am trying to find the words to say. But there are none. I don’t even know where to begin. But to say I love you more than words can say and you are not gone yet. I hate cancer and I am so mad that you have to go through this. I wish I could take your pain away and be with you every second of every day that is left. I know that every day there are thousandsvof families that go through this. I am so happy to have been blessed to spend the time that we have now. I don’t understand why these horrible things have to happen to such beautiful people. I do know that god is with us through this time and that there just has to be a bigger reason or purpose for this. I love you so so much and you make me so proud that you are so strong and allowed us to have just a little more time.
                                                                                                                                                                        hdelancey23
                                                                                                                                                                        Participant
                                                                                                                                                                          Denise is my mom and I first want to thank every one of you for your support of my mom. I am trying to find the words to say. But there are none. I don’t even know where to begin. But to say I love you more than words can say and you are not gone yet. I hate cancer and I am so mad that you have to go through this. I wish I could take your pain away and be with you every second of every day that is left. I know that every day there are thousandsvof families that go through this. I am so happy to have been blessed to spend the time that we have now. I don’t understand why these horrible things have to happen to such beautiful people. I do know that god is with us through this time and that there just has to be a bigger reason or purpose for this. I love you so so much and you make me so proud that you are so strong and allowed us to have just a little more time.
                                                                                                                                                                          GAngel
                                                                                                                                                                          Participant

                                                                                                                                                                            Denise,

                                                                                                                                                                            I agree, hospice doesn't mean your giving up and you should take advantage of the care that they offer, which is excellent.  Please know that I am praying for you continuously.  Most importantly, please do not be afraid. The Lord is with you and He will never forsake you.  Look to Him for strength, comfort and peace.  You have inspired so many here on this forum and have been such a blessing as you've shared your journey with us. It isn't over until you decide it is and when the time comes so does the peace in your heart.  You are a beauful soul…you are loved! 

                                                                                                                                                                            Blessings to you and your family,

                                                                                                                                                                            Gina R.

                                                                                                                                                                             

                                                                                                                                                                            GAngel
                                                                                                                                                                            Participant

                                                                                                                                                                              Denise,

                                                                                                                                                                              I agree, hospice doesn't mean your giving up and you should take advantage of the care that they offer, which is excellent.  Please know that I am praying for you continuously.  Most importantly, please do not be afraid. The Lord is with you and He will never forsake you.  Look to Him for strength, comfort and peace.  You have inspired so many here on this forum and have been such a blessing as you've shared your journey with us. It isn't over until you decide it is and when the time comes so does the peace in your heart.  You are a beauful soul…you are loved! 

                                                                                                                                                                              Blessings to you and your family,

                                                                                                                                                                              Gina R.

                                                                                                                                                                               

                                                                                                                                                                              GAngel
                                                                                                                                                                              Participant

                                                                                                                                                                                Denise,

                                                                                                                                                                                I agree, hospice doesn't mean your giving up and you should take advantage of the care that they offer, which is excellent.  Please know that I am praying for you continuously.  Most importantly, please do not be afraid. The Lord is with you and He will never forsake you.  Look to Him for strength, comfort and peace.  You have inspired so many here on this forum and have been such a blessing as you've shared your journey with us. It isn't over until you decide it is and when the time comes so does the peace in your heart.  You are a beauful soul…you are loved! 

                                                                                                                                                                                Blessings to you and your family,

                                                                                                                                                                                Gina R.

                                                                                                                                                                                 

                                                                                                                                                                                hopeagain
                                                                                                                                                                                Participant

                                                                                                                                                                                  Dear Denise,

                                                                                                                                                                                  I am not often on this board, but if you are up to it, and still have the strnegth or hope, then you may try to find another excelling oncologist in one of the leading melanoma centers, and check if they can put you on some good trial fast.

                                                                                                                                                                                  I wish you all the luck

                                                                                                                                                                                  hopeagain
                                                                                                                                                                                  Participant

                                                                                                                                                                                    Dear Denise,

                                                                                                                                                                                    I am not often on this board, but if you are up to it, and still have the strnegth or hope, then you may try to find another excelling oncologist in one of the leading melanoma centers, and check if they can put you on some good trial fast.

                                                                                                                                                                                    I wish you all the luck

                                                                                                                                                                                    hopeagain
                                                                                                                                                                                    Participant

                                                                                                                                                                                      Dear Denise,

                                                                                                                                                                                      I am not often on this board, but if you are up to it, and still have the strnegth or hope, then you may try to find another excelling oncologist in one of the leading melanoma centers, and check if they can put you on some good trial fast.

                                                                                                                                                                                      I wish you all the luck

                                                                                                                                                                                      Tina D
                                                                                                                                                                                      Participant

                                                                                                                                                                                        Denise, You have NO need to apologize for not "staying positive". Being honest is much more important! I am so sorry for this terribly distressing report for you and for your family. I agree that hospice sounds like it would be incredibly helpful at the moment, first: to get the pain under control, and second: to help you navigate the things you need to in regards to life, and further treatments you are seeking. If they can lift some of the other load, you can focus where you want and need to. Also, I would think that if you desire any spiritual counsel, if you do not already have that at your disposal, hat they would be able to help you find a a way to fill that need, too. You are such a courageous person, as is evidenced in all your posts. I wish I was close to where you live in order to lend a hand and hugs. I can not imagine how scary it all feels at the moment. If there is anything that can be done on our end, let us know… many on here are experts at searching out what is available and where. Prayers for you right now, and do not be afraid to come on here and let us know just what you are feeling, that is what this community is for. For listening, sharing, encouraging, helping, advising, and support in every way possible.

                                                                                                                                                                                        Tina

                                                                                                                                                                                        Tina D
                                                                                                                                                                                        Participant

                                                                                                                                                                                          Denise, You have NO need to apologize for not "staying positive". Being honest is much more important! I am so sorry for this terribly distressing report for you and for your family. I agree that hospice sounds like it would be incredibly helpful at the moment, first: to get the pain under control, and second: to help you navigate the things you need to in regards to life, and further treatments you are seeking. If they can lift some of the other load, you can focus where you want and need to. Also, I would think that if you desire any spiritual counsel, if you do not already have that at your disposal, hat they would be able to help you find a a way to fill that need, too. You are such a courageous person, as is evidenced in all your posts. I wish I was close to where you live in order to lend a hand and hugs. I can not imagine how scary it all feels at the moment. If there is anything that can be done on our end, let us know… many on here are experts at searching out what is available and where. Prayers for you right now, and do not be afraid to come on here and let us know just what you are feeling, that is what this community is for. For listening, sharing, encouraging, helping, advising, and support in every way possible.

                                                                                                                                                                                          Tina

                                                                                                                                                                                          Tina D
                                                                                                                                                                                          Participant

                                                                                                                                                                                            Denise, You have NO need to apologize for not "staying positive". Being honest is much more important! I am so sorry for this terribly distressing report for you and for your family. I agree that hospice sounds like it would be incredibly helpful at the moment, first: to get the pain under control, and second: to help you navigate the things you need to in regards to life, and further treatments you are seeking. If they can lift some of the other load, you can focus where you want and need to. Also, I would think that if you desire any spiritual counsel, if you do not already have that at your disposal, hat they would be able to help you find a a way to fill that need, too. You are such a courageous person, as is evidenced in all your posts. I wish I was close to where you live in order to lend a hand and hugs. I can not imagine how scary it all feels at the moment. If there is anything that can be done on our end, let us know… many on here are experts at searching out what is available and where. Prayers for you right now, and do not be afraid to come on here and let us know just what you are feeling, that is what this community is for. For listening, sharing, encouraging, helping, advising, and support in every way possible.

                                                                                                                                                                                            Tina

                                                                                                                                                                                            vicuk
                                                                                                                                                                                            Participant

                                                                                                                                                                                              Dear Denise,

                                                                                                                                                                                              You are an inspiration to so many people. I don't often pray but I will be doing. I hope you find relief from the pain. I am very much thinking of you. I wish I could comfort you.

                                                                                                                                                                                               

                                                                                                                                                                                              vicuk
                                                                                                                                                                                              Participant

                                                                                                                                                                                                Dear Denise,

                                                                                                                                                                                                You are an inspiration to so many people. I don't often pray but I will be doing. I hope you find relief from the pain. I am very much thinking of you. I wish I could comfort you.

                                                                                                                                                                                                 

                                                                                                                                                                                                vicuk
                                                                                                                                                                                                Participant

                                                                                                                                                                                                  Dear Denise,

                                                                                                                                                                                                  You are an inspiration to so many people. I don't often pray but I will be doing. I hope you find relief from the pain. I am very much thinking of you. I wish I could comfort you.

                                                                                                                                                                                                   

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                                                                                                                                                                                              The MRF Patient Forum is the oldest and largest online community of people affected by melanoma. It is designed to provide peer support and information to caregivers, patients, family and friends. There is no better place to discuss different parts of your journey with this cancer and find the friends and support resources to make that journey more bearable.

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