I was diagnosed 18 months ago. I did all the research. I learned the new language. I traveled out of state for a specialist and a trial study. Now I'm in stage 3 and need chemo. I started 2 weeks ago. I live alone (widow) and had such a horrible reaction to the chemo and was so sick from it they had to postpone it until my body could heal before beginning again. Today is the day I'm supposed to begin again.
I don't want chemo again. I know nobody wants chemo, but I seriously don't want it again. For 18 months I have fought this cancer and I'm tired. I don't want to give up though. There has to be another way. And if not, then I would rather have one good year ahead of me as a part of my family and a productive part of the life going on all around me than 2 or 3 years sick and sitting in one doctor's office after another.
But I have so many people pushing me really hard not to make this choice. The doctor, the center, the nurses ... My daughter says she will support me no matter what choice I make because, when all is said and done, it's me going thru this and my choice.
How do I know I am making the right choice? I would do almost anything to not have to go thru chemo again.
Moderator's Note: Sharon's posting originally was made in the thread titled "Considering only supportive treatment" (started May 14, 2012). However, we felt that it would be best to give it a thread of its own, given the unique circumstances that usually surround each myeloma patient's case.
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Re: I don't want to do chemo again
Dear Sharon,
I feel deeply moved by your posting here. I sincerely hope that your doctors and the hospital are working with you to find alternative treatment or measures to give you a fair quality of life while being treated.
Is it OK if I ask you: What treatment are you receiving, what are your approximate age and health condition, etc.?
I hope that I or somebody else can come up with something to comfort or maybe even give you hope and fighting spirit.
Being alone with multiple myeloma must be very hard. I am a widower myself, but my daughter, friends and family are gathering like a fortress around me. Intellectually I know that it is a very severe condition, but in my heart I feel assured that it could be much worse.
I hope that you can find a way.
Yours sincerely,
Lev
I feel deeply moved by your posting here. I sincerely hope that your doctors and the hospital are working with you to find alternative treatment or measures to give you a fair quality of life while being treated.
Is it OK if I ask you: What treatment are you receiving, what are your approximate age and health condition, etc.?
I hope that I or somebody else can come up with something to comfort or maybe even give you hope and fighting spirit.
Being alone with multiple myeloma must be very hard. I am a widower myself, but my daughter, friends and family are gathering like a fortress around me. Intellectually I know that it is a very severe condition, but in my heart I feel assured that it could be much worse.
I hope that you can find a way.
Yours sincerely,
Lev
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
Re: I don't want to do chemo again
Lev makes some really good points.
Has anybody told you that you would have one good year without treatment? I hope that would be true but it is my understanding that with the wide variation in the aggressiveness of myeloma it is difficult to predict disease progression, what the response to different treatments will be, or much at all about the future when it comes to myeloma on an individual basis. Maybe it will be longer than a year, maybe a lot less.
After reading about myeloma for three years I have learned to be suspicious of anyone who makes long range predictions for me and the doctors I see do not do this. I would be cautious. If somebody "doctor shops" long enough, they can probably find a doctor that tells them what they want to hear.
As you said it is your decision to make and I understand there can be a point where it may make sense to let nature run its course. I am not a believer in always doing everything possible to prolong life if the quality of life is gone and there is little hope it will ever come back. But in making such a decision,I am skeptical that there is any certainty that the disease progression would allow for another year of good quality of life or would not be a yearlong battle fighting the effects of the disease itself in hospice care.
You are in a really tough spot, one that I will be in myself someday if they do not find a cure. Best wishes and I hope you can find some peace of mind and comfort.
Has anybody told you that you would have one good year without treatment? I hope that would be true but it is my understanding that with the wide variation in the aggressiveness of myeloma it is difficult to predict disease progression, what the response to different treatments will be, or much at all about the future when it comes to myeloma on an individual basis. Maybe it will be longer than a year, maybe a lot less.
After reading about myeloma for three years I have learned to be suspicious of anyone who makes long range predictions for me and the doctors I see do not do this. I would be cautious. If somebody "doctor shops" long enough, they can probably find a doctor that tells them what they want to hear.
As you said it is your decision to make and I understand there can be a point where it may make sense to let nature run its course. I am not a believer in always doing everything possible to prolong life if the quality of life is gone and there is little hope it will ever come back. But in making such a decision,I am skeptical that there is any certainty that the disease progression would allow for another year of good quality of life or would not be a yearlong battle fighting the effects of the disease itself in hospice care.
You are in a really tough spot, one that I will be in myself someday if they do not find a cure. Best wishes and I hope you can find some peace of mind and comfort.
Last edited by Eric Hofacket on Tue Nov 04, 2014 7:14 pm, edited 1 time in total.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: I don't want to do chemo again
Hello Sharon,
I am wondering what it is or why you don't wish to have chemo again. Is it the side effects or is it the thought of prolonging the inevitable. Or have you simply had enough?
Ultimately it is your decision, only you know how you feel. Those around us usually just want what is in our best interest. I am sure your daughter only wants what you want.
I guess if you feel that you have nothing left to achieve or do in life then that's an easy choice to make. On the other hand if you have anything left un done or that you really want or need to do then you only have one choice.
Good luck
Vicki.
I am wondering what it is or why you don't wish to have chemo again. Is it the side effects or is it the thought of prolonging the inevitable. Or have you simply had enough?
Ultimately it is your decision, only you know how you feel. Those around us usually just want what is in our best interest. I am sure your daughter only wants what you want.
I guess if you feel that you have nothing left to achieve or do in life then that's an easy choice to make. On the other hand if you have anything left un done or that you really want or need to do then you only have one choice.
Good luck
Vicki.
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vicstir - Name: Vic
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: October 2013
- Age at diagnosis: 39
Re: I don't want to do chemo again
Sharon-
You've gotten some very good, thoughtful responses. As one who is single with my only family member, my sister, 1000 miles away, it is often difficult to live with this disease and think about what may come in the future. Fortunately I haven't had a difficult time with my treatment. But, I do wonder what, and when, I will do if treatment and quality of life decline to the point where I don't feel I want to continue.
Have you talked with the social worker, psychologist, or chaplain at your cancer center about your feelings? If you have a spiritual advisor through church, synagogue, or whatever, have you spoken with him/her? It can be helpful to speak about your thoughts and feelings to one of them who don't have any preconceived thoughts/feelings/attitudes about what you should or shouldn't be doing. It might help to be able to air these things with someone outside of your family and your treatment team.
I know that you will make the decisions for your life that are right for you. I send you lots of love in coming to that decision for now.
Nancy in Phila
You've gotten some very good, thoughtful responses. As one who is single with my only family member, my sister, 1000 miles away, it is often difficult to live with this disease and think about what may come in the future. Fortunately I haven't had a difficult time with my treatment. But, I do wonder what, and when, I will do if treatment and quality of life decline to the point where I don't feel I want to continue.
Have you talked with the social worker, psychologist, or chaplain at your cancer center about your feelings? If you have a spiritual advisor through church, synagogue, or whatever, have you spoken with him/her? It can be helpful to speak about your thoughts and feelings to one of them who don't have any preconceived thoughts/feelings/attitudes about what you should or shouldn't be doing. It might help to be able to air these things with someone outside of your family and your treatment team.
I know that you will make the decisions for your life that are right for you. I send you lots of love in coming to that decision for now.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: I don't want to do chemo again
Hi Sharon,
I really understand how you feel!! When I first started chemo, I was so sick I couldn't lift my head off the pillow. I couldn't talk to anyone, all I could do was sleep. My family was so worried about me. I lost weight, my body swelled up, and my feet cracked open. I was in terrible pain and had to take many drugs to deal with all the side effects.
The good news is, it didn't last. I got better!! I responded so well to treatment that within a short time I went into complete remission. I regained my appetite and my strength and the swelling went down and my feet healed.
A few months later, I am enjoying life, my family and friends, loving everyday. I am hiking, cooking, reading, painting and feeling better everyday.
Please hang in there, it does get better!!!
Debbi
I really understand how you feel!! When I first started chemo, I was so sick I couldn't lift my head off the pillow. I couldn't talk to anyone, all I could do was sleep. My family was so worried about me. I lost weight, my body swelled up, and my feet cracked open. I was in terrible pain and had to take many drugs to deal with all the side effects.
The good news is, it didn't last. I got better!! I responded so well to treatment that within a short time I went into complete remission. I regained my appetite and my strength and the swelling went down and my feet healed.
A few months later, I am enjoying life, my family and friends, loving everyday. I am hiking, cooking, reading, painting and feeling better everyday.
Please hang in there, it does get better!!!
Debbi
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DebbiC - Name: Debbi
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: 12/23/13
- Age at diagnosis: 53
Re: I don't want to do chemo again
Hi, Sharon,
I may be able to relate to your situation. I've been in Stage 3 multiple myeloma for a year and a half. I had some really bad reaction to chemo. One treatment made me lose my mind - dementia. Meanwhile, another one gave me permanent neuropathy in my arms, legs, and other places. Then, another chemo treatment gave me congestive heart failure. They put me on a three month hiatus, then started me on Revlimid. Within 6 months, I was 100% cancer free - the Revlimid put me into remission. This remission has held for almost a year.
If I might insult you with some advice - See what treatments are available for you along with the possible side effects before you decide chemo's not for you.
Best of Luck and Health
Rob
I may be able to relate to your situation. I've been in Stage 3 multiple myeloma for a year and a half. I had some really bad reaction to chemo. One treatment made me lose my mind - dementia. Meanwhile, another one gave me permanent neuropathy in my arms, legs, and other places. Then, another chemo treatment gave me congestive heart failure. They put me on a three month hiatus, then started me on Revlimid. Within 6 months, I was 100% cancer free - the Revlimid put me into remission. This remission has held for almost a year.
If I might insult you with some advice - See what treatments are available for you along with the possible side effects before you decide chemo's not for you.
Best of Luck and Health
Rob
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acebass
Re: I don't want to do chemo again
Hi Sharon,
You've stated something that I think many of us can relate to! Chemotherapy is no fun. Period.
But if I can make a suggestion it would be to get as specific as you can about what side effects of the chemo you've had are giving you problems. Then talk with your myeloma specialist (you are being treated by a specialist, I hope!) about those side effects. There are other things (often other meds) that can mitigate the side effects. Or your chemo regimen can be changed to avoid the worst side effects for you.
Hang in there!
Mike
You've stated something that I think many of us can relate to! Chemotherapy is no fun. Period.
But if I can make a suggestion it would be to get as specific as you can about what side effects of the chemo you've had are giving you problems. Then talk with your myeloma specialist (you are being treated by a specialist, I hope!) about those side effects. There are other things (often other meds) that can mitigate the side effects. Or your chemo regimen can be changed to avoid the worst side effects for you.
Hang in there!
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: I don't want to do chemo again
Hi Sharon, If you took chemo in a trial setting and also 'out of state', i.e. away from your home, you maybe experienced a worse situation than you could do with starting up again. Many of the 'novel agents' are not too difficult to tolerate, and as the others posting here have said, you could talk to your specialist and determine just what might work best for you now.
If you don't mind me asking, what chemo was it that you had the bad reaction to? And what sort of clinical trial was it?
Some patients are allergic to certain chemotherapies. For example, some patients have an allergic reaction to Revlimid, and they may be switched over to Velcade. The more different 'chocolates in the box' available for treatments, the more flexible the oncologists can be with finding a drug combo that may work for you. In the US, there are certainly many options that way!
Also, although I have not yet experienced being in a clinical trial, I understand that they have quite strict criteria for following the dosages, etc. Therefore I think they in some cases may be more difficult to tolerate than being on treatments prescribed by your myeloma specialist.
I hope that helps!
If you don't mind me asking, what chemo was it that you had the bad reaction to? And what sort of clinical trial was it?
Some patients are allergic to certain chemotherapies. For example, some patients have an allergic reaction to Revlimid, and they may be switched over to Velcade. The more different 'chocolates in the box' available for treatments, the more flexible the oncologists can be with finding a drug combo that may work for you. In the US, there are certainly many options that way!
Also, although I have not yet experienced being in a clinical trial, I understand that they have quite strict criteria for following the dosages, etc. Therefore I think they in some cases may be more difficult to tolerate than being on treatments prescribed by your myeloma specialist.
I hope that helps!
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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: I don't want to do chemo again
Sharon, I'm sorry you've had to go through what you've been through, and I'm completely unqualified to give you advice, but my 2 cents worth is that "it's always too soon to quit".
A year ago, I was feeling much like you; none of the protocols (four of them, including a SCT) had helped very much, and the plasma cells in my bone marrow were at 47%. But then, I somehow ended up in a clinical trial (daratumumab), and now the plasma cells are less than 5%, and I feel healthy and energetic.
Hang in there lady, and don't give up hope.
E.C.
A year ago, I was feeling much like you; none of the protocols (four of them, including a SCT) had helped very much, and the plasma cells in my bone marrow were at 47%. But then, I somehow ended up in a clinical trial (daratumumab), and now the plasma cells are less than 5%, and I feel healthy and energetic.
Hang in there lady, and don't give up hope.
E.C.
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Banrelk4 - Name: E.C.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2010
- Age at diagnosis: 73
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