› Forums › General Melanoma Community › Think comfort
- This topic has 24 replies, 8 voices, and was last updated 12 years, 9 months ago by
Ali.
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- March 6, 2013 at 3:50 am
Well, as of Friday the team of Drs. Believe with little or no treatments available this is the way to go. ; ( . Hospice is now available. Mel has progresses.. Mainly in my bones….now the buttocks. Failed Oncovex. Tried IL2 which gave me a few months. Tried Zel however I have the K mutation and could never get to full strength due to side affects, I suffered one at the same time. We then tried Yervoy but it kept getting interrupted due to pain and steroid use. I continued the Zel Throughout. Without repeating here I am.Well, as of Friday the team of Drs. Believe with little or no treatments available this is the way to go. ; ( . Hospice is now available. Mel has progresses.. Mainly in my bones….now the buttocks. Failed Oncovex. Tried IL2 which gave me a few months. Tried Zel however I have the K mutation and could never get to full strength due to side affects, I suffered one at the same time. We then tried Yervoy but it kept getting interrupted due to pain and steroid use. I continued the Zel Throughout. Without repeating here I am. I was offered the PD-1 trial just recently but a few things excluded me. Number of treatments (which I BEGGED) the doctor to not do . The fact I cannot walk. What a letdown. If anyone knows of a treatment I could try that my body could handle please let me know. My spirit was broken with the turnarounds via the 2 DrsI haven’t been around in a while. Last time here Kevin had passed. Anyone else I might know I can say a prayer for?
Karin
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- March 6, 2013 at 4:43 am
Karin-
I'm so sad to hear this news. I'm really hoping someone has a suggestion for you. Are you still seeing Richards and Hallmeyer? It is a letdown to hear that treatment options….I'm praying for you….you were one of the first people to reach out to me. Keep fighting….
Josh
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- March 6, 2013 at 4:43 am
Karin-
I'm so sad to hear this news. I'm really hoping someone has a suggestion for you. Are you still seeing Richards and Hallmeyer? It is a letdown to hear that treatment options….I'm praying for you….you were one of the first people to reach out to me. Keep fighting….
Josh
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- March 6, 2013 at 4:43 am
Karin-
I'm so sad to hear this news. I'm really hoping someone has a suggestion for you. Are you still seeing Richards and Hallmeyer? It is a letdown to hear that treatment options….I'm praying for you….you were one of the first people to reach out to me. Keep fighting….
Josh
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- March 6, 2013 at 1:24 pm
Oh, Karin! I am so sorry to hear this! You have been such a strong and determined fighter. So many trips back and forth to the doctor. So many side effects. So much worry and "scanxiety". And, of course, so much pain. And through all this you have beaten back the beast so many times. I admire you so much!
My brother is also a fighter like you. I remember the day after his oncologist told him there were no further treatments they could offer him. I was sitting with him crying my eyes out but he seemed so calm. I asked him how he could remain so calm and he said, "Through this whole process I have learned to tell myself what will be will be. Part of me always knew that the day may come when there was nothing more the doctors could do and I learned to accept that." I still don't know how he found the resources to go through all those treatments while part of his mind was resigned to possible failure, but he did.
So I guess my hope for you is that you can take comfort in knowing that you gave it your all. You didn't wimp out or throw up your hands in self-pity and despair. Your courage and perseverence gave you and your loved ones years together that you wouldn't otherwise have had. That is a victory in my book. Now you can relax. Do whatever is necessary to control the pain. Have as much fun and as many happy visits with friends and relatives as you can. And thank you for sharing your journey with us.
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- March 6, 2013 at 1:24 pm
Oh, Karin! I am so sorry to hear this! You have been such a strong and determined fighter. So many trips back and forth to the doctor. So many side effects. So much worry and "scanxiety". And, of course, so much pain. And through all this you have beaten back the beast so many times. I admire you so much!
My brother is also a fighter like you. I remember the day after his oncologist told him there were no further treatments they could offer him. I was sitting with him crying my eyes out but he seemed so calm. I asked him how he could remain so calm and he said, "Through this whole process I have learned to tell myself what will be will be. Part of me always knew that the day may come when there was nothing more the doctors could do and I learned to accept that." I still don't know how he found the resources to go through all those treatments while part of his mind was resigned to possible failure, but he did.
So I guess my hope for you is that you can take comfort in knowing that you gave it your all. You didn't wimp out or throw up your hands in self-pity and despair. Your courage and perseverence gave you and your loved ones years together that you wouldn't otherwise have had. That is a victory in my book. Now you can relax. Do whatever is necessary to control the pain. Have as much fun and as many happy visits with friends and relatives as you can. And thank you for sharing your journey with us.
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- March 6, 2013 at 1:24 pm
Oh, Karin! I am so sorry to hear this! You have been such a strong and determined fighter. So many trips back and forth to the doctor. So many side effects. So much worry and "scanxiety". And, of course, so much pain. And through all this you have beaten back the beast so many times. I admire you so much!
My brother is also a fighter like you. I remember the day after his oncologist told him there were no further treatments they could offer him. I was sitting with him crying my eyes out but he seemed so calm. I asked him how he could remain so calm and he said, "Through this whole process I have learned to tell myself what will be will be. Part of me always knew that the day may come when there was nothing more the doctors could do and I learned to accept that." I still don't know how he found the resources to go through all those treatments while part of his mind was resigned to possible failure, but he did.
So I guess my hope for you is that you can take comfort in knowing that you gave it your all. You didn't wimp out or throw up your hands in self-pity and despair. Your courage and perseverence gave you and your loved ones years together that you wouldn't otherwise have had. That is a victory in my book. Now you can relax. Do whatever is necessary to control the pain. Have as much fun and as many happy visits with friends and relatives as you can. And thank you for sharing your journey with us.
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- March 6, 2013 at 3:20 pm
Karin,I am sorry to hear you’ve had such a rough time. It is all such a guessing game, sounds like you have done the best you can so far and that’s all any of us can do. I restarted Zel during Ipi. It was awful.
I am having a good response to the Zel, second round, but can’t tolerate staying on it continually at all after Ipi, even at 3×2. I take it 2 wks on/1 wk off + prednisone to keep me functioning.
There are a few on here now trying intermittent dosing, there was a study a couple of months ago saying in mice they found that not only did it prolong resistance, but resistant tumors would respond to the drug again.
Are you still on Zel? Maybe they could try changing up the dosing. Did they tell you your side effects were related to being a K? Just curious – I’m a D.
Prayers for peace for you and your family with whatever comes your way.
Amy -
- March 6, 2013 at 3:20 pm
Karin,I am sorry to hear you’ve had such a rough time. It is all such a guessing game, sounds like you have done the best you can so far and that’s all any of us can do. I restarted Zel during Ipi. It was awful.
I am having a good response to the Zel, second round, but can’t tolerate staying on it continually at all after Ipi, even at 3×2. I take it 2 wks on/1 wk off + prednisone to keep me functioning.
There are a few on here now trying intermittent dosing, there was a study a couple of months ago saying in mice they found that not only did it prolong resistance, but resistant tumors would respond to the drug again.
Are you still on Zel? Maybe they could try changing up the dosing. Did they tell you your side effects were related to being a K? Just curious – I’m a D.
Prayers for peace for you and your family with whatever comes your way.
Amy-
- March 6, 2013 at 4:43 pm
Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
These Drs are just too busy IMO.Karin
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- March 6, 2013 at 4:43 pm
Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
These Drs are just too busy IMO.Karin
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- March 6, 2013 at 4:43 pm
Thank you all for the kind thoughts and prayers. Family has always been my source of life and happiness. Three children and 2 small g-kids ..What more can I say?
Josh I was currently seeing Dr Kaufmann at Rush because he was suppose to get the PD-1 trial which fell through but FYI Univ. of Chicago is accepting patients.
I never had a real snswer about being a K mutation but that they just don’t know because very few are researching it.
These Drs are just too busy IMO.Karin
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- March 6, 2013 at 3:20 pm
Karin,I am sorry to hear you’ve had such a rough time. It is all such a guessing game, sounds like you have done the best you can so far and that’s all any of us can do. I restarted Zel during Ipi. It was awful.
I am having a good response to the Zel, second round, but can’t tolerate staying on it continually at all after Ipi, even at 3×2. I take it 2 wks on/1 wk off + prednisone to keep me functioning.
There are a few on here now trying intermittent dosing, there was a study a couple of months ago saying in mice they found that not only did it prolong resistance, but resistant tumors would respond to the drug again.
Are you still on Zel? Maybe they could try changing up the dosing. Did they tell you your side effects were related to being a K? Just curious – I’m a D.
Prayers for peace for you and your family with whatever comes your way.
Amy -
- March 6, 2013 at 9:52 pm
I'm so sorry Karin. This week the doctors told us that my Father should cease his treatments, too. He is a fighter and this is so difficult for him to hear. But when "the treatments are worse than the disease"… they said…
So I told my parents this, "Dear Mom and Dad, Stopping treatment is not giving up hope. It is finding hope in other places for other things. Things we may not even know until we get there. Never forget to stop and smell the roses, and laugh a lot along the way, because it's not about the destination, it's about the journey. I love you with all my heart and soul. ~Michelle"
I hope you can find peace, and comfort, and gratitude in small things. Sending you love, warmth, and many blessings.
Michelle
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- March 6, 2013 at 9:52 pm
I'm so sorry Karin. This week the doctors told us that my Father should cease his treatments, too. He is a fighter and this is so difficult for him to hear. But when "the treatments are worse than the disease"… they said…
So I told my parents this, "Dear Mom and Dad, Stopping treatment is not giving up hope. It is finding hope in other places for other things. Things we may not even know until we get there. Never forget to stop and smell the roses, and laugh a lot along the way, because it's not about the destination, it's about the journey. I love you with all my heart and soul. ~Michelle"
I hope you can find peace, and comfort, and gratitude in small things. Sending you love, warmth, and many blessings.
Michelle
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- March 6, 2013 at 9:52 pm
I'm so sorry Karin. This week the doctors told us that my Father should cease his treatments, too. He is a fighter and this is so difficult for him to hear. But when "the treatments are worse than the disease"… they said…
So I told my parents this, "Dear Mom and Dad, Stopping treatment is not giving up hope. It is finding hope in other places for other things. Things we may not even know until we get there. Never forget to stop and smell the roses, and laugh a lot along the way, because it's not about the destination, it's about the journey. I love you with all my heart and soul. ~Michelle"
I hope you can find peace, and comfort, and gratitude in small things. Sending you love, warmth, and many blessings.
Michelle
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