hopefortomorrow

I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

I feel for you right now.  I was in your position just 4 months ago.  It was heart breaking to see Mom decline so quickly.  After they sent her home on Hospice, they gave her 2 days to 2 weeks.  She had mets from head to toe.  Every internal organ was effected.  She had just had surgery to remove the brain tumor because it was bleeding.  They did not send her home on steroids, even though she was on them at the hospital, but hospice did a pretty good job at controlling her pain.  Her wish was to die at home, but I will say it took all 5 of her children and husband to give round the clock care for the 2 weeks she remained with us.  We took shifts with 2 people at a time staying with her while the rest of us rested physically and emotionally.  There were a couple times she was lucid enough to have real but brief conversations with us.  She was so relieved to have her family with her.  She did withdrawal at the very end, she did not want touched except to hold her hand.  Don't know if that was because of her pain or if she was just preparing for death.  Maybe at that point, God was taking better care of her than we could.  Take care of yourself the best you can right now.  Tell your father how much you love him, which is evident by your posts.  Let him tell you what he wants.  Mom's hospice nurse said, "She is the boss right now.  Let her have this time to be totally for her."  You are in my prayers.

You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

You are a walking miracle.  An inspiration to us all.  Be thankful for every day you have and keep being "boring".  God bless! 

Actually, my mom had the longest response time with Temodar than with any other treatment she received.  Tumors shrunk and remained stable for 6 months and she only had very minor side effects.  Also the cheapest treatment for her.  She was also stage 4 with mets to lung and trachea at the time.  Never had a chance to try the Yervoy so can't help you there.  Traveling for a melanoma patient can be very tiring.  We had option to be treated at Johns Hopkins but after talking to Mom, she decided she didn't want to invest so much time and energy traveling back and forth and chose a local hospital with a melanoma specialist.  As everyone on this board can testify to, each patient is so different in their response to any treatment.  It is so frustrating trying to decide which way to go and then second guessing your decisions afterward.  The trials are great if you can get into them.  I wish you and your father the best and pray for all of the patients and their caregivers every day.

Actually, my mom had the longest response time with Temodar than with any other treatment she received.  Tumors shrunk and remained stable for 6 months and she only had very minor side effects.  Also the cheapest treatment for her.  She was also stage 4 with mets to lung and trachea at the time.  Never had a chance to try the Yervoy so can't help you there.  Traveling for a melanoma patient can be very tiring.  We had option to be treated at Johns Hopkins but after talking to Mom, she decided she didn't want to invest so much time and energy traveling back and forth and chose a local hospital with a melanoma specialist.  As everyone on this board can testify to, each patient is so different in their response to any treatment.  It is so frustrating trying to decide which way to go and then second guessing your decisions afterward.  The trials are great if you can get into them.  I wish you and your father the best and pray for all of the patients and their caregivers every day.

Actually, my mom had the longest response time with Temodar than with any other treatment she received.  Tumors shrunk and remained stable for 6 months and she only had very minor side effects.  Also the cheapest treatment for her.  She was also stage 4 with mets to lung and trachea at the time.  Never had a chance to try the Yervoy so can't help you there.  Traveling for a melanoma patient can be very tiring.  We had option to be treated at Johns Hopkins but after talking to Mom, she decided she didn't want to invest so much time and energy traveling back and forth and chose a local hospital with a melanoma specialist.  As everyone on this board can testify to, each patient is so different in their response to any treatment.  It is so frustrating trying to decide which way to go and then second guessing your decisions afterward.  The trials are great if you can get into them.  I wish you and your father the best and pray for all of the patients and their caregivers every day.

I know exactly how you are feeling.  When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier)  they kept putting us off for weeks  for scans, appointments, biopsies, etc.  It was killing us.  We just wanted answers and soon.  After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving.  I told the office manager honestly how we were all feeling and our stress levels were at an all time high.  I ended by saying, "What if this were you or your family member."  We got an appointment in 2 days for a consult.  Hey, it was something.  Be persistent but polite.  If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator.  They may get angry, but this is your loved one and you need to be their advocate.  Your husband will need you to be his spokesman in the coming months/years and will thank you for it.

I know exactly how you are feeling.  When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier)  they kept putting us off for weeks  for scans, appointments, biopsies, etc.  It was killing us.  We just wanted answers and soon.  After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving.  I told the office manager honestly how we were all feeling and our stress levels were at an all time high.  I ended by saying, "What if this were you or your family member."  We got an appointment in 2 days for a consult.  Hey, it was something.  Be persistent but polite.  If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator.  They may get angry, but this is your loved one and you need to be their advocate.  Your husband will need you to be his spokesman in the coming months/years and will thank you for it.

I know exactly how you are feeling.  When my mom got her diagnosis of cancer (we didn't even know it was melanoma at the time, but had our suspicions since she had a stage 1 removed 8 yrs earlier)  they kept putting us off for weeks  for scans, appointments, biopsies, etc.  It was killing us.  We just wanted answers and soon.  After mom asked me if they were waiting so long because they thought there was no hope for her so why hurry, I picked up the phone to the doctor's office and was quite insistent but polite on getting things moving.  I told the office manager honestly how we were all feeling and our stress levels were at an all time high.  I ended by saying, "What if this were you or your family member."  We got an appointment in 2 days for a consult.  Hey, it was something.  Be persistent but polite.  If the secretaries aren't willing to work with you, ask to talk to a manager or nurse coordinator.  They may get angry, but this is your loved one and you need to be their advocate.  Your husband will need you to be his spokesman in the coming months/years and will thank you for it.

Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.

Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.

Unfortunately, Mom was in the small percentage that it did return.  Found no other primaries on skin.  After her 5 year mark of NED, we ignorantly assumed melanoma was something in the past, a minor scare, but thanked God it was caught so early.  But then when I heard that cough, I knew it was something bad.  Melanoma immediately came to mind.  I prayed to God it was anything else, even lung cancer, but not melanoma.  After the pathology report came back,  I thought how can this be, it's been over 8 yrs and it was so small.  I guess this cancer is no respector of person and you must always be vigilant.  I am so glad when I read of the success stories on here, but I would be lying if I told you I didn't think every time, "Why couldn't that have been my Mom," as I am sure you feel about your Dad.  I wish success for all of those out there struggling with melanoma.  Someday…..until then, all you warriors out there, keep fighting this disease for all us that have lost loved ones.  You are the true heroes.