Updates
REGISTER
The information on this site is not intended or implied to be a substitute for professional medical advice, diagnosis or treatment. Content within the patient forum is user-generated and has not been reviewed by medical professionals. Other sections of the Melanoma Research Foundation website include information that has been reviewed by medical professionals as appropriate. All medical decisions should be made in consultation with your doctor or other qualified medical professional.

Updates

› Forums › General Melanoma Community › Updates

  • Post
    • May 5, 2016 at 4:41 pm
    dfeng
    Participant

    1 month scan result shows tumor igored the treatment again.

    NYP columbia university suggested hospice as the first option.

    Will move back to MSKCC to check out another trail. It seems to shall be my last treatment and I guess everyone has lost hope.

    About my situation. Painkiller becomes daily medicine. Fluid is annoying but now I am having a catheter so I can drain it everyday.

    I totally lost about 70 lbs from my strongest days, and it is still geting less and less. I am still trying to work, two half days a week, but most of time I have to sit in my chair and only can provide my brain.

    I can still take care of my daily activies. Just very slow. But it is not safe for me to drive anymore. A disabled sticker now is on my car. Wife drives me everyday.

    My parents are trying their best to cook the best food, so that I can eat a little more. I do not know without their support, how long I can hold.

    Well, I am still enjoying my life 😉 Now I am sipping from my flask, the scotch taste wonderful. Just a little bit, very little bit :D. Missing the days that I was alone in the woods, with my shotgun and snow.

     

Viewing 20 reply threads
  • Replies
      • May 5, 2016 at 5:52 pm
      Bubbles
      Participant

      Oh, my dear Dfeng.  You have been such an example and support to us all.  Never having met you, I still count you as a friend.  If others do not, I am still holding out hope for a new trial to bring you the solution you need.  You have always demonstrated grace under pressure and you continue to do so.  Enjoy your flask, my friend.  celeste

      • May 5, 2016 at 5:52 pm
      Bubbles
      Participant

      Oh, my dear Dfeng.  You have been such an example and support to us all.  Never having met you, I still count you as a friend.  If others do not, I am still holding out hope for a new trial to bring you the solution you need.  You have always demonstrated grace under pressure and you continue to do so.  Enjoy your flask, my friend.  celeste

      • May 5, 2016 at 5:52 pm
      Bubbles
      Participant

      Oh, my dear Dfeng.  You have been such an example and support to us all.  Never having met you, I still count you as a friend.  If others do not, I am still holding out hope for a new trial to bring you the solution you need.  You have always demonstrated grace under pressure and you continue to do so.  Enjoy your flask, my friend.  celeste

      • May 5, 2016 at 5:55 pm
      Polymath
      Participant

      dfeng,

      We have followed your posts with interest.  This disease is a roller coaster ride.  One minute your treatment is like the clicking sound of being lifted up a ramp, and the next comes the screaming, scared out of your wits part of the free-fall.  You can still beat this, long before the ride comes to an end.  I've lost weight, and gained it back (drink lots of Ensure Plus) been on powerful pain meds, steroids, and drugs that seemed to vanquish every shred of pleasure from life,and weaned off them all as the ride ensued.  You just have to stay in your seat, seat belt fastened, don't close your eyes, go with the twists and turns and remember your friends, family and lifes' work await on the platform when you get off the ride. Then start planning the next phase of life.

      Aloha, Gary

       

      • May 5, 2016 at 5:55 pm
      Polymath
      Participant

      dfeng,

      We have followed your posts with interest.  This disease is a roller coaster ride.  One minute your treatment is like the clicking sound of being lifted up a ramp, and the next comes the screaming, scared out of your wits part of the free-fall.  You can still beat this, long before the ride comes to an end.  I've lost weight, and gained it back (drink lots of Ensure Plus) been on powerful pain meds, steroids, and drugs that seemed to vanquish every shred of pleasure from life,and weaned off them all as the ride ensued.  You just have to stay in your seat, seat belt fastened, don't close your eyes, go with the twists and turns and remember your friends, family and lifes' work await on the platform when you get off the ride. Then start planning the next phase of life.

      Aloha, Gary

       

      • May 5, 2016 at 5:55 pm
      Polymath
      Participant

      dfeng,

      We have followed your posts with interest.  This disease is a roller coaster ride.  One minute your treatment is like the clicking sound of being lifted up a ramp, and the next comes the screaming, scared out of your wits part of the free-fall.  You can still beat this, long before the ride comes to an end.  I've lost weight, and gained it back (drink lots of Ensure Plus) been on powerful pain meds, steroids, and drugs that seemed to vanquish every shred of pleasure from life,and weaned off them all as the ride ensued.  You just have to stay in your seat, seat belt fastened, don't close your eyes, go with the twists and turns and remember your friends, family and lifes' work await on the platform when you get off the ride. Then start planning the next phase of life.

      Aloha, Gary

       

      • May 5, 2016 at 5:58 pm
      pookerpb
      Participant

      So sorry you are going through this dfeng. This post brought back so many emotions as I sit and read and it is as if my husband who lost his battle in March could have wrote this. Keep hofeful the next treatment may not indeed be your last…as it seems you know already there is hope. When we decided to call hospice, we knew it was time…. there was no question about it…..no choice. He knew his body and knew every day he didnt eat and tried to limit pain meds to not become dependent on them was not the answer for him. He was at the point, and it just came one day, that he wanted to be comfortable and not have people force him to eat everyday when he knew what kind of discomfort it caused him. I pray for you as you go through these challenges and forge on in your battle. Please take comfort in knowing every day is a new day and you are so strong to have gone through what you have. good luck!!

      • May 5, 2016 at 5:58 pm
      pookerpb
      Participant

      So sorry you are going through this dfeng. This post brought back so many emotions as I sit and read and it is as if my husband who lost his battle in March could have wrote this. Keep hofeful the next treatment may not indeed be your last…as it seems you know already there is hope. When we decided to call hospice, we knew it was time…. there was no question about it…..no choice. He knew his body and knew every day he didnt eat and tried to limit pain meds to not become dependent on them was not the answer for him. He was at the point, and it just came one day, that he wanted to be comfortable and not have people force him to eat everyday when he knew what kind of discomfort it caused him. I pray for you as you go through these challenges and forge on in your battle. Please take comfort in knowing every day is a new day and you are so strong to have gone through what you have. good luck!!

        • May 5, 2016 at 5:59 pm
        pookerpb
        Participant

        And yes…keep plugging along. When things for my husband looked very grim after trial failure time and time again, they kept telling us to just "plug along" one day at a time.!!

        • May 5, 2016 at 5:59 pm
        pookerpb
        Participant

        And yes…keep plugging along. When things for my husband looked very grim after trial failure time and time again, they kept telling us to just "plug along" one day at a time.!!

        • May 5, 2016 at 5:59 pm
        pookerpb
        Participant

        And yes…keep plugging along. When things for my husband looked very grim after trial failure time and time again, they kept telling us to just "plug along" one day at a time.!!

      • May 5, 2016 at 5:58 pm
      pookerpb
      Participant

      So sorry you are going through this dfeng. This post brought back so many emotions as I sit and read and it is as if my husband who lost his battle in March could have wrote this. Keep hofeful the next treatment may not indeed be your last…as it seems you know already there is hope. When we decided to call hospice, we knew it was time…. there was no question about it…..no choice. He knew his body and knew every day he didnt eat and tried to limit pain meds to not become dependent on them was not the answer for him. He was at the point, and it just came one day, that he wanted to be comfortable and not have people force him to eat everyday when he knew what kind of discomfort it caused him. I pray for you as you go through these challenges and forge on in your battle. Please take comfort in knowing every day is a new day and you are so strong to have gone through what you have. good luck!!

      • May 5, 2016 at 6:57 pm
      Scooby123
      Participant

      So sorry Dfeng,

      try and keep going, do not give up hope see what the trail is and please keep going. I know it's hard you have a loving caring family trying to keep you strong. 

      I will be thinking of you 

      scooby123❤️

       

      • May 5, 2016 at 6:57 pm
      Scooby123
      Participant

      So sorry Dfeng,

      try and keep going, do not give up hope see what the trail is and please keep going. I know it's hard you have a loving caring family trying to keep you strong. 

      I will be thinking of you 

      scooby123❤️

       

      • May 5, 2016 at 6:57 pm
      Scooby123
      Participant

      So sorry Dfeng,

      try and keep going, do not give up hope see what the trail is and please keep going. I know it's hard you have a loving caring family trying to keep you strong. 

      I will be thinking of you 

      scooby123❤️

       

      • May 5, 2016 at 7:08 pm
      DZnDef
      Participant

      D. Feng,

      I am so sorry you have not yet found the treatment that works for you!  I hope your next trial is the last one that you will need due to it working for you!  There is always hope.  As long as you're breathing, it can turn around.  I hope it does, soon, for you.

      • May 5, 2016 at 7:08 pm
      DZnDef
      Participant

      D. Feng,

      I am so sorry you have not yet found the treatment that works for you!  I hope your next trial is the last one that you will need due to it working for you!  There is always hope.  As long as you're breathing, it can turn around.  I hope it does, soon, for you.

      • May 5, 2016 at 7:08 pm
      DZnDef
      Participant

      D. Feng,

      I am so sorry you have not yet found the treatment that works for you!  I hope your next trial is the last one that you will need due to it working for you!  There is always hope.  As long as you're breathing, it can turn around.  I hope it does, soon, for you.

      • May 5, 2016 at 7:59 pm
      BrianP
      Participant

      I'm sorry dfeng.  Hang in there.  I'll pray MSK has something for you.  They are really doing some innovative stuff there with the personalized treatment based on your melanoma's genetics.  Enjoy the scotch.

      Brian

      • May 5, 2016 at 7:59 pm
      BrianP
      Participant

      I'm sorry dfeng.  Hang in there.  I'll pray MSK has something for you.  They are really doing some innovative stuff there with the personalized treatment based on your melanoma's genetics.  Enjoy the scotch.

      Brian

      • May 5, 2016 at 7:59 pm
      BrianP
      Participant

      I'm sorry dfeng.  Hang in there.  I'll pray MSK has something for you.  They are really doing some innovative stuff there with the personalized treatment based on your melanoma's genetics.  Enjoy the scotch.

      Brian

      • May 6, 2016 at 5:51 am
      stars
      Participant

      Thinking of you, DFeng. The darkest hour is just before the dawn. There is hope,

      Stars

      • May 6, 2016 at 5:51 am
      stars
      Participant

      Thinking of you, DFeng. The darkest hour is just before the dawn. There is hope,

      Stars

      • May 6, 2016 at 5:51 am
      stars
      Participant

      Thinking of you, DFeng. The darkest hour is just before the dawn. There is hope,

      Stars

Viewing 20 reply threads
  • You must be logged in to reply to this topic.
About the MRF Patient Forum

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.

The information on the forum is open and accessible to everyone. To add a new topic or to post a reply, you must be a registered user. Please note that you will be able to post both topics and replies anonymously even though you are logged in. All posts must abide by MRF posting policies.