I feel that I will be nearing this decision point for myself soon. My stem cell transplant, after a year and eight months, is beginning to fail. My light chains are now outside of the “normal” range again.
I have had many of the best drugs prior to my transplant; Revlimid, Velcade, Pomalyst, Darzalex, Kyprolis, and have taken Ninlaro most recently as maintenance.
There are other options, but my “new normal” just doesn’t provide me with an acceptable quality of life any more.
I have thought about stopping treatment before, but the increaing damage this disease has done to my body raises the issue again.
I am just tired of having multiple myeloma. Maybe I’ve finally had enough. I know that my family is beginning to feel that way, too.
I remember how hopeful and optimistic I felt when I was first diagnosed, once I had recovered from the initial shock. Now, I’m just tired of the terrible impact it has had, the constant ups and downs, and the accreting damage caused by the treatments as well as the disease. With no hope of a real cure, and no good treatments for the constant pain and fatigue.
Everyone has a limit.
Forums
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Giving up & stopping treatment
Mr. P,
You are right, we all have a limit. There are so many things to deal with, and they have a cumulative effect on one’s endurance. Hope you can find a course of action that suits you.
David
You are right, we all have a limit. There are so many things to deal with, and they have a cumulative effect on one’s endurance. Hope you can find a course of action that suits you.
David
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Arizonan - Name: Arizonan
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: April 2010
- Age at diagnosis: 54
Re: Giving up & stopping treatment
Mr. Potatohead,
I hear your frustration with your situation. I'm hoping that you are around loved ones who can offer some support. Have you shared your feelings with your family and/or your medical team?
Are there any trials you could qualify for? I know of one patient with multiple myeloma who was really almost completely out of options. She was able to get into a CAR T-cell therapy trial, which has put her into an stringent complete remission, with miminal residual disease (MRD) negative status.
I'm thinking about you and I care.
I hear your frustration with your situation. I'm hoping that you are around loved ones who can offer some support. Have you shared your feelings with your family and/or your medical team?
Are there any trials you could qualify for? I know of one patient with multiple myeloma who was really almost completely out of options. She was able to get into a CAR T-cell therapy trial, which has put her into an stringent complete remission, with miminal residual disease (MRD) negative status.
I'm thinking about you and I care.
Re: Giving up & stopping treatment
Mr. Potatohead,
I can relate to what you are saying. I started treatment in August 2014. Various drugs and combinations. I was not tough enough to have a transplant, not that I was not physically strong enough, just too chicken. After Revlimid took 6 months of normal life away from me, I decided that the old cliche' quality of life was more important than longevity. I am now a little over 4 years into the mission and just now finishing up my 4th cycle of Pomalyst, Ninlaro, and dex. All I really expect is a little break while my sense of taste returns and the gastro side effects subside.
Like many others have likely told their doctors, "I never knew I was sick until you told me and I never felt bad until you started treating me." We must realize that none of our doctors or caregivers have experienced what we are dealing with. Sometimes I feel like my treatment is trading in today for tomorrow. If I go through all this now, I will be rewarded later. Yeah, right!
I know it is hard, but try not to let this disease totally define you. Age has a lot to do with attitude, I am 72. MultiplemMyeloma pretty much says, " if nothing else wants you first, I will take you myself."
I wish I could offer you more hope and encouragement, but I can't even run my own life. Have you discussed your true feelings with your doctor? I made a point early on to tell mine that I wanted to be able to enjoy what was left of my time to the greatest extent possible and living forever was not a realistic priority for me anyway.
Maybe the new year will give you a different outlook. Just take one day at a time and do whatever gives you the most pleasure and the least discomfort. In the end, it is your life and you get to live it however you choose.
Charlie, (grouchy German)
I can relate to what you are saying. I started treatment in August 2014. Various drugs and combinations. I was not tough enough to have a transplant, not that I was not physically strong enough, just too chicken. After Revlimid took 6 months of normal life away from me, I decided that the old cliche' quality of life was more important than longevity. I am now a little over 4 years into the mission and just now finishing up my 4th cycle of Pomalyst, Ninlaro, and dex. All I really expect is a little break while my sense of taste returns and the gastro side effects subside.
Like many others have likely told their doctors, "I never knew I was sick until you told me and I never felt bad until you started treating me." We must realize that none of our doctors or caregivers have experienced what we are dealing with. Sometimes I feel like my treatment is trading in today for tomorrow. If I go through all this now, I will be rewarded later. Yeah, right!
I know it is hard, but try not to let this disease totally define you. Age has a lot to do with attitude, I am 72. MultiplemMyeloma pretty much says, " if nothing else wants you first, I will take you myself."
I wish I could offer you more hope and encouragement, but I can't even run my own life. Have you discussed your true feelings with your doctor? I made a point early on to tell mine that I wanted to be able to enjoy what was left of my time to the greatest extent possible and living forever was not a realistic priority for me anyway.
Maybe the new year will give you a different outlook. Just take one day at a time and do whatever gives you the most pleasure and the least discomfort. In the end, it is your life and you get to live it however you choose.
Charlie, (grouchy German)
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Grizlump - Name: Charlie
- Who do you know with myeloma?: me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 67
Re: Giving up & stopping treatment
Mr. P.,
Your post is so powerful and sobering that I have to acknowledge the impact it makes on me.
Understandably, we all mostly focus on treatments and remedies and try to marginalize the terrible reality of the myeloma endgame.
However, your post reminds me that many thousands of folks who are gone now had to face what you are facing head on. It's what most of us will face unless something else gets us first.
We should remember that we can't outrun myeloma with an infinite number of treatments. There's no need to be morbid, but we need to be realistic in order to prepare ourselves and our loved ones for the time when our health becomes a major issue.
I'm sure many folks reading your post would like to find a way to say something to make you feel better. All I can do is thank you so much for the generous, candid, and compassionate posts you have contributed to this forum.
God bless.
Your post is so powerful and sobering that I have to acknowledge the impact it makes on me.
Understandably, we all mostly focus on treatments and remedies and try to marginalize the terrible reality of the myeloma endgame.
However, your post reminds me that many thousands of folks who are gone now had to face what you are facing head on. It's what most of us will face unless something else gets us first.
We should remember that we can't outrun myeloma with an infinite number of treatments. There's no need to be morbid, but we need to be realistic in order to prepare ourselves and our loved ones for the time when our health becomes a major issue.
I'm sure many folks reading your post would like to find a way to say something to make you feel better. All I can do is thank you so much for the generous, candid, and compassionate posts you have contributed to this forum.
God bless.
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Giving up & stopping treatment
Hello Mr. PH,
I am so sorry to hear that you are feeling really 'down' about your future as a myeloma patient. I can appreciate that you have been very brave to endure such pain and so many treatments too. I just look at your age, which is about the same as mine, and hope that you can find a way to enjoy your life again. When my dear stepmother passed away at the age of 85, she told me I should fight on with the cancers due to being younger. I look forward every day to spending time with my family, my interests in life, and even to see the sunrise! The days are very short here in the winter, so sunrise can be even after 8 a.m. Maybe your medical advisors can help you with all the problems you have to get a better quality of life. Best wishes!
I am so sorry to hear that you are feeling really 'down' about your future as a myeloma patient. I can appreciate that you have been very brave to endure such pain and so many treatments too. I just look at your age, which is about the same as mine, and hope that you can find a way to enjoy your life again. When my dear stepmother passed away at the age of 85, she told me I should fight on with the cancers due to being younger. I look forward every day to spending time with my family, my interests in life, and even to see the sunrise! The days are very short here in the winter, so sunrise can be even after 8 a.m. Maybe your medical advisors can help you with all the problems you have to get a better quality of life. Best wishes!
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Giving up & stopping treatment
Thanks to everyone who replied to my post for your very kind thoughts and your advice.
The Beacon community has helped me so much, and for that I will always be grateful.
The Beacon community has helped me so much, and for that I will always be grateful.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Giving up & stopping treatment
MrPotatohead,
There are few forum members here, whose posts are very prominent and helpful, not just questions about anything, but answers, opinions and sharing experience. And you are one of them. Your posts are making a difference, and your participation here already is a value which brings sense to your fighting! Your words help many of us, and will continue to help, especially for the new members.
Yes, hard moment you're facing with right now.
But it is never too late to give up and almost always too early!
Please, follow the advice some of the others have mentioned above and find a way to enroll to in a clinical trial, there are many of them running. At least it will give you at least another 1-1.5 years in remission, and who knows what researchers will offer at that time.
Yes, multiple myeloma at this point will get all of us. But please, let's face it continuing to fight!
There are few forum members here, whose posts are very prominent and helpful, not just questions about anything, but answers, opinions and sharing experience. And you are one of them. Your posts are making a difference, and your participation here already is a value which brings sense to your fighting! Your words help many of us, and will continue to help, especially for the new members.
Yes, hard moment you're facing with right now.
But it is never too late to give up and almost always too early!
Please, follow the advice some of the others have mentioned above and find a way to enroll to in a clinical trial, there are many of them running. At least it will give you at least another 1-1.5 years in remission, and who knows what researchers will offer at that time.
Yes, multiple myeloma at this point will get all of us. But please, let's face it continuing to fight!
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borber - Name: borber
- Who do you know with myeloma?: me
- When were you/they diagnosed?: January, 2017
- Age at diagnosis: 60
Re: Giving up & stopping treatment
Mr. Potatohead,
All I can say is I wish you well whatever decision you make. It is your life, and any decision you make has to be the best one for you. Your people will eventually grieve for you, but their grief will be worse if they think THEY did something wrong.
I know from bitter experience that this is the time for absolute honesty.
I have no idea what you're going through; but I sincerely believe the best decision you make has to be the one that's best for YOU, even if that sounds selfish. It's not.
I'm not very religious, but I do pray for other people; and there's one on the way to you.
Regards,
Colm
All I can say is I wish you well whatever decision you make. It is your life, and any decision you make has to be the best one for you. Your people will eventually grieve for you, but their grief will be worse if they think THEY did something wrong.
I know from bitter experience that this is the time for absolute honesty.
I have no idea what you're going through; but I sincerely believe the best decision you make has to be the one that's best for YOU, even if that sounds selfish. It's not.
I'm not very religious, but I do pray for other people; and there's one on the way to you.
Regards,
Colm
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Colm - Name: Colm
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: smoldering April 2016
- Age at diagnosis: 56
Re: Giving up & stopping treatment
Thank you so much, borber, for your kind words and encouragement. They really came at the right time.
Colm, you write with honesty and insight. Thank you. Prayer does help. And it is wonderful of you to offer me that.
Colm, you write with honesty and insight. Thank you. Prayer does help. And it is wonderful of you to offer me that.
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
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