I was diagnosed about 15 months ago and went through the initial VRD [Velcade, Revlimid, dexamethasone] therapy and then had a stem cell transplant. I now have a complete remission.
Mentally, it was almost easier going through the initial treatment and then transplant because I had a goal in mind: to get into a remission. Now that I'm there, I find myself getting down from time to time because I keep wondering when "the other shoe will drop" and I will relapse.
I actually feel good physically and I'm not depressed, but just get a little down. I know it makes no sense to worry about it because I have little control over what will eventually happen (or not). I feel very fortunate to be in remission right now and many people are much worse off. So I really have no reason or even a right to complain at this point.
For those that have been in remission for several years or longer, does the uncertainty of a relapse hanging over your head ever get any easier to deal with?
Or is it just one of those things that you just have to learn to live with?
Forums
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Dealing with the uncertainty of remission - suggestions?
Kent,
I have been in a remissive state for over 5 years. I have chosen my words carefully. I am not in a complete remission as I still have low level disease. However, the multiple myeloma is very low level and has not been active.
I put my focus on other things such as my work, choir, family and biking. I set goals for myself and a plan on how to achieve them. By putting the focus on something else, I believe you get on with life. Sure relapse is always a possibility but why waste effort worrying about something you have no control over. Worry by its nature is generally about things we don't have control over and thus a waste of energy and emotion.
Live life to the fullest. Grasp it and don't let go.
Keep smiling
Ron
I have been in a remissive state for over 5 years. I have chosen my words carefully. I am not in a complete remission as I still have low level disease. However, the multiple myeloma is very low level and has not been active.
I put my focus on other things such as my work, choir, family and biking. I set goals for myself and a plan on how to achieve them. By putting the focus on something else, I believe you get on with life. Sure relapse is always a possibility but why waste effort worrying about something you have no control over. Worry by its nature is generally about things we don't have control over and thus a waste of energy and emotion.
Live life to the fullest. Grasp it and don't let go.
Keep smiling
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Dealing with the uncertainty of remission - suggestions?
Hi Kent,
I was initially diagnosed in 2005, Stage II IgA lambda light chain. I've had two auto SCT's (2006 & 2012) and achieved a near complete remission after both of them. Do I ever think about relapse? Yes!!! It looks like I'm heading for another one right now.
It's only natural to think about the possibility of relapse from time to time. I am usually a pretty positive person, but I sometimes have to stop and face my fears before I can overcome all the uncertainties of the moment.
So, yes, I, too, have done time waiting for the other shoe to drop, but I try not to let this thing rule my life. Like Ron, I've always tried to focus on other things.
I'm not too good with words sometimes, but I guess what I'm trying to say is, don't worry, Kent, I don't think your occasional fears are unusual at all; and you are not alone.
Take care, and God bless,
Mary
I was initially diagnosed in 2005, Stage II IgA lambda light chain. I've had two auto SCT's (2006 & 2012) and achieved a near complete remission after both of them. Do I ever think about relapse? Yes!!! It looks like I'm heading for another one right now.
It's only natural to think about the possibility of relapse from time to time. I am usually a pretty positive person, but I sometimes have to stop and face my fears before I can overcome all the uncertainties of the moment.
So, yes, I, too, have done time waiting for the other shoe to drop, but I try not to let this thing rule my life. Like Ron, I've always tried to focus on other things.
I'm not too good with words sometimes, but I guess what I'm trying to say is, don't worry, Kent, I don't think your occasional fears are unusual at all; and you are not alone.
Take care, and God bless,
Mary
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inky100 - Name: Mary
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 2005
- Age at diagnosis: 43
Re: Dealing with the uncertainty of remission - suggestions?
Thanks for the responses.
I try to stay positive and try to remember that "what will be, will be" and not dwell on it too much.
I try to stay positive and try to remember that "what will be, will be" and not dwell on it too much.
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DallasGG - Name: Kent
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 6/20/2013
- Age at diagnosis: 56
Re: Dealing with the uncertainty of remission - suggestions?
I think dealing with the uncertainty of when a relapse will occur is better than dealing with the certainty of actually experiencing the relapse. The longer you can push it out the better, right?
But I know what you mean. It's not exactly comfortable knowing you have this disease, even if it's in remission. It's always there in the back of your mind.
I try to make the best of every day and live life. Set goals if you need them. Be involved with life, however you want to define it. I keep a daily journal which I find is helpful and is a way for me to identify each day the things for which I am grateful.
Good question and I hope everyone's ideas will help you answer the question to yourself.
But I know what you mean. It's not exactly comfortable knowing you have this disease, even if it's in remission. It's always there in the back of your mind.
I try to make the best of every day and live life. Set goals if you need them. Be involved with life, however you want to define it. I keep a daily journal which I find is helpful and is a way for me to identify each day the things for which I am grateful.
Good question and I hope everyone's ideas will help you answer the question to yourself.
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Norm - Name: Norm
- Who do you know with myeloma?: me
- When were you/they diagnosed?: Aug-2010
- Age at diagnosis: 59
Re: Dealing with the uncertainty of remission - suggestions?
"Don't ruin the time you have left worring about the time you have left" (M. Katz). I have this posted at my desk and above the work bench in the garage. I understand how you feel and I have the same thought from time to time. I try to enjoy every day ... one at a time, and I realize that at some point my therapy will fail. I'll deal with that when the time comes, and not allow it to ruin today.
Be grateful for your successful transplant and the good quality of life you have today. Start a gratitude list and make daily entries to remind you how fortunate you are today. Tomorrow will bring what it brings, and worrying about it will not change the final outcome.
All the best.
Be grateful for your successful transplant and the good quality of life you have today. Start a gratitude list and make daily entries to remind you how fortunate you are today. Tomorrow will bring what it brings, and worrying about it will not change the final outcome.
All the best.
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: Dealing with the uncertainty of remission - suggestions?
Hi DallasGG, the other folks have given great advice in this thread.
I want to especially second Norm's suggestion of keeping a daily journal. My 25 year old (at the time) daughter suggested this to me when I started treatment. An excellent suggestion from her! It serves as a way for me to sort of consolidate lots of random thoughts before bedtime. And going back now to read what I wrote a year ago is encouraging. I can see that I'm doing better now than I was then.
I want to especially second Norm's suggestion of keeping a daily journal. My 25 year old (at the time) daughter suggested this to me when I started treatment. An excellent suggestion from her! It serves as a way for me to sort of consolidate lots of random thoughts before bedtime. And going back now to read what I wrote a year ago is encouraging. I can see that I'm doing better now than I was then.
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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: Dealing with the uncertainty of remission - suggestions?
Hi DallasGG,
I'm like you! I think I started worrying about when EJ would relapse since the day he got home from his SCT. Like your shoe dropping analogy, I was afraid every time EJ went to the doctor they would tell him his multiple myeloma had returned with a bang.
In reality, his multiple myeloma has progressed very, very slowly. It helped me a lot to understand what it meant to relapse, and when treatment might start again. Although his multiple myeloma (M-spike) has risen from 0.1 g/dL after his SCT to 0.3 g/dL, he has held steady there for almost a year. I know that he will need treatment again, but I've stopped worrying about it quite as much because it seems like it will be a slow crawl before he gets to that point, and both EJ and I will have time to prepare.
Hope that helps. Good luck!
Lyn
I'm like you! I think I started worrying about when EJ would relapse since the day he got home from his SCT. Like your shoe dropping analogy, I was afraid every time EJ went to the doctor they would tell him his multiple myeloma had returned with a bang.
In reality, his multiple myeloma has progressed very, very slowly. It helped me a lot to understand what it meant to relapse, and when treatment might start again. Although his multiple myeloma (M-spike) has risen from 0.1 g/dL after his SCT to 0.3 g/dL, he has held steady there for almost a year. I know that he will need treatment again, but I've stopped worrying about it quite as much because it seems like it will be a slow crawl before he gets to that point, and both EJ and I will have time to prepare.
Hope that helps. Good luck!
Lyn
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Christa's Mom - Name: Christa's Mom
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: September, 2010
- Age at diagnosis: 53
Re: Dealing with the uncertainty of remission - suggestions?
Hi DallasGG. I was diagnosed five years ago and after treatment, was in complete remission for two years. Then I had a very low M-spike that has been creeping up incrementally. I would get a little nervous before each quarterly blood test, but otherwise, I just put it out of my mind and went on with my life. Having goals or something to look forward to, such as travel, really helps.
Last June, I suddenly had a lambda spike, although my M-spike was still incremental. I had Velcade treatments over the summer and will see my oncologist next week. Am I nervous? Yes, but I try not to think about it. Instead, I'm planning a trip to see my dad for his 85th birthday next month.
Dana A
Last June, I suddenly had a lambda spike, although my M-spike was still incremental. I had Velcade treatments over the summer and will see my oncologist next week. Am I nervous? Yes, but I try not to think about it. Instead, I'm planning a trip to see my dad for his 85th birthday next month.
Dana A
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Dealing with the uncertainty of remission - suggestions?
One thing I try to keep in mind is that every day I'm in remission is another day closer to the approval of the next myeloma drug. It's another day closer to different therapies going from phase 1 to phase 2 and others going to phase 3 clinical trials. It's another day for researchers to gain further understanding of the disease, how it works, and how to treat it.
It's very sobering to be certain that the disease will come back, but every day that it doesn't is a day closer to a cure.
It's very sobering to be certain that the disease will come back, but every day that it doesn't is a day closer to a cure.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
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