Hi, my husband is 7 weeks post ASCT he is doing really well and has even returned to work. He got through the transplant process really well with very few problems. He is a very positive man and is looking forward to getting back to normal. I believe he thinks everything is going to be okay and that he is going to have a long remission.
I'm the one struggling with the whole thing. I'm frightened of the whole thing crashing down around me. I really want him to be one of those people that have that long remission, but I'm scared that it will come back into our lives all to soon. It's because of this fear I'm looking for some success stories and people that are beating this horrid cancer.
Suzi
Forums
9 posts
• Page 1 of 1
Re: Long remission stories
Suzi,
I was diagnosed and started treatment in Feb of 2009. I have been in a remissive state for the past 5 years. I am not cancer free but it is at a low level. I did not have an ASCT and have been in continuous low level treatment (maintenance) with a shot of Velcade and 8 mg of dex every two weeks. I have never missed any work other than for appointments and am very active physically as a cyclist doing over 4,000 miles each year since my diagnosis.
I am just one of many that have been battling this disease for multiple years and have maintained a relatively high quality of life. There are ups and downs and I have had some serious infections as a result of a compromised immune system. However, I have overcome those including an unrelated open heart surgery that took place in August this year to replace a defective aortic valve.
The point is that your husband can lead a relatively high quality of life with multiple myeloma. I am not a rare example. As medical knowedge has improved and new drugs that are more specifically targeted are being developed, patients are living much longer with higher qualities of life than were thought possible just a few years ago.
The glass is more than half full.
Ron
I was diagnosed and started treatment in Feb of 2009. I have been in a remissive state for the past 5 years. I am not cancer free but it is at a low level. I did not have an ASCT and have been in continuous low level treatment (maintenance) with a shot of Velcade and 8 mg of dex every two weeks. I have never missed any work other than for appointments and am very active physically as a cyclist doing over 4,000 miles each year since my diagnosis.
I am just one of many that have been battling this disease for multiple years and have maintained a relatively high quality of life. There are ups and downs and I have had some serious infections as a result of a compromised immune system. However, I have overcome those including an unrelated open heart surgery that took place in August this year to replace a defective aortic valve.
The point is that your husband can lead a relatively high quality of life with multiple myeloma. I am not a rare example. As medical knowedge has improved and new drugs that are more specifically targeted are being developed, patients are living much longer with higher qualities of life than were thought possible just a few years ago.
The glass is more than half full.
Ron
-
Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Long remission stories
Suzi,
Dealing with the unknown of what the future holds for is a challenge all myeloma patients have. You are hardly alone in dealing with this.
It is hard to make long-range predictions of prognosis on an individual basis and there is wide variation in longevity and quality of life. In time I have learned to accept that, based on the current state of medical understanding of myeloma, I will not ever know what my long-term prospects are. When people ask me, I tell them I could be dead this time next year or I could still be here ten years from now, but I should be fine for at least the next few months based on where I know I stand today.
It is comforting to hear stories of long remissions to know that is a possibility for me and it is encouraging seeing that the statistical averages for longevity have been significantly increasing in the last 10 years and continuing to do so. The Beacon is a good place to find such stories and encouraging news on the advance in myeloma treatment.
It took a little time to accept this and learn to move on with my life and find happiness in what I have now and not let this cloud hang over my head. I do still think and worry about it, who wouldn’t? But if I do have a long ten-year or more remission, it would be a waste to live it depressed and living in fear.
I know this is hard thing accept and get past. I think people who are already pessimistic in nature have trouble adapting to this. I saw this with my own grandmother who had this irrational fear of cancer that made her depressed for much of her life decades before she even got cancer in her late 70s.
Dealing with the unknown of what the future holds for is a challenge all myeloma patients have. You are hardly alone in dealing with this.
It is hard to make long-range predictions of prognosis on an individual basis and there is wide variation in longevity and quality of life. In time I have learned to accept that, based on the current state of medical understanding of myeloma, I will not ever know what my long-term prospects are. When people ask me, I tell them I could be dead this time next year or I could still be here ten years from now, but I should be fine for at least the next few months based on where I know I stand today.
It is comforting to hear stories of long remissions to know that is a possibility for me and it is encouraging seeing that the statistical averages for longevity have been significantly increasing in the last 10 years and continuing to do so. The Beacon is a good place to find such stories and encouraging news on the advance in myeloma treatment.
It took a little time to accept this and learn to move on with my life and find happiness in what I have now and not let this cloud hang over my head. I do still think and worry about it, who wouldn’t? But if I do have a long ten-year or more remission, it would be a waste to live it depressed and living in fear.
I know this is hard thing accept and get past. I think people who are already pessimistic in nature have trouble adapting to this. I saw this with my own grandmother who had this irrational fear of cancer that made her depressed for much of her life decades before she even got cancer in her late 70s.
-
Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Long remission stories
Hi Suzi,
You, your situation, sounds a lot like EJ and me. EJ returned to work 8 weeks after his SCT and has been in remission for 40 months. He never achieved a CR, but his M-spike held stable at 0.1 g/dL for quite a long time. Now it is up to 0.3 g/dL, and a PET/CT revealed that he has some active lesions, but nothing has progressed enough for him to need treatment yet, although we know it's coming.
Like your husband, EJ sails through as if everything were normal and he hasn't a care in the world. Until recently it had been difficult to talk to him about "what next" because he was doing so well. I was glad to let him have this time, knowing that when we really needed to make decisions, he would talk about them. However, like you, I worried about things crashing down around me when I was least prepared for it. Especially since the time surrounding his original diagnosis was so stressful.
Over time, what I have realized is that in most cases relapse doesn't happen overnight. EJ's M-spike has risen and then been stable for at least eight months. I also know that they won't start treating him again until his lesions show more activity and his M-spike continues to rise. So I've had plenty of time to read and study and try and get prepared for whatever happens next.
Hope that helps.
Lyn
You, your situation, sounds a lot like EJ and me. EJ returned to work 8 weeks after his SCT and has been in remission for 40 months. He never achieved a CR, but his M-spike held stable at 0.1 g/dL for quite a long time. Now it is up to 0.3 g/dL, and a PET/CT revealed that he has some active lesions, but nothing has progressed enough for him to need treatment yet, although we know it's coming.
Like your husband, EJ sails through as if everything were normal and he hasn't a care in the world. Until recently it had been difficult to talk to him about "what next" because he was doing so well. I was glad to let him have this time, knowing that when we really needed to make decisions, he would talk about them. However, like you, I worried about things crashing down around me when I was least prepared for it. Especially since the time surrounding his original diagnosis was so stressful.
Over time, what I have realized is that in most cases relapse doesn't happen overnight. EJ's M-spike has risen and then been stable for at least eight months. I also know that they won't start treating him again until his lesions show more activity and his M-spike continues to rise. So I've had plenty of time to read and study and try and get prepared for whatever happens next.
Hope that helps.
Lyn
-
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: Long remission stories
My mother had a five year drug-free remission following Cytoxan/Velcade/dex and an autologous stem cell transplant. She recently relapsed, so we are deciding her next therapy. Don't give up hope!
-
BeatMyeloma - Name: BeatMyeloma
- Who do you know with myeloma?: My mother
- When were you/they diagnosed?: Jan. 2008
- Age at diagnosis: 54
Re: Long remission stories
Hi Suzi. Everyone is different, but many of us are living good lives. In my case, I was diagnosed five years ago and was pretty sick. I went through induction treatment and a stem cell transplant, attaining a complete remission. Two years ago, myeloma reared its ugly little head, but at such a low level that we just watched it. Now I'm getting treatment again, but making plans to keep on living my life.
Our disease is chronic. Just as a diabetic or something with thyroid disease must be checked periodically and possibly adjust their meds, we get checked and sometimes hear that we need treatment again. As Eric described, I have had to adjust my life. I have accepted that I'm probably going to live to my 80s and maybe even not reach 70, but I sure am going to try. Except on rare occasions, I don't do activities that will go later in the evening because I don't have the energy level. But I work full time, take care of my house, and do the things I enjoy. I try not to think about what the next blood test will show. I don't make very long term plans, but I'm currently planning a trip for next spring.
What I'm saying, like Eric did, is that having myeloma made me look at my life, what is important to me, and how I want to live it. In many ways, I've been happier because I no longer worry about things that once seemed so important but really aren't.
The medications have changed over the past five years, since I started my myeloma journey, and will be changing more over the next five. Particularly with genetic research and the ability to target drugs, our life expectancy looks so much better. Keep a hold of those thoughts when you're feeling down.
And finally, remember to stay in the moment and not focus on what-ifs for the future. You can be prepared for the future, but don't let those "what ifs" take over your life.
Dana A
Our disease is chronic. Just as a diabetic or something with thyroid disease must be checked periodically and possibly adjust their meds, we get checked and sometimes hear that we need treatment again. As Eric described, I have had to adjust my life. I have accepted that I'm probably going to live to my 80s and maybe even not reach 70, but I sure am going to try. Except on rare occasions, I don't do activities that will go later in the evening because I don't have the energy level. But I work full time, take care of my house, and do the things I enjoy. I try not to think about what the next blood test will show. I don't make very long term plans, but I'm currently planning a trip for next spring.
What I'm saying, like Eric did, is that having myeloma made me look at my life, what is important to me, and how I want to live it. In many ways, I've been happier because I no longer worry about things that once seemed so important but really aren't.
The medications have changed over the past five years, since I started my myeloma journey, and will be changing more over the next five. Particularly with genetic research and the ability to target drugs, our life expectancy looks so much better. Keep a hold of those thoughts when you're feeling down.
And finally, remember to stay in the moment and not focus on what-ifs for the future. You can be prepared for the future, but don't let those "what ifs" take over your life.
Dana A
-
darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Long remission stories
Thanks everyone for your positive replies, I'm really trying to be a glass half full type of girl. I do find great comfort in your kind words. Lee's not a great talker, so I find myself doing a lot of thinking.
I did find it interesting that all of you who replied are all similar to Lee my husband in age. H was 55 when he was diagnosed in January this year. His initial treatment was with CyBorD, which worked extremely well. His myeloma is the non secretory type, so it is a bit tricky to monitor. He has had bone damage in his spine with three compression fractures.
I keep saying to myself ' Don't let worrying about tomorrow spoil today'. I'll get there
Thanks,
Suzi
I did find it interesting that all of you who replied are all similar to Lee my husband in age. H was 55 when he was diagnosed in January this year. His initial treatment was with CyBorD, which worked extremely well. His myeloma is the non secretory type, so it is a bit tricky to monitor. He has had bone damage in his spine with three compression fractures.
I keep saying to myself ' Don't let worrying about tomorrow spoil today'. I'll get there
Thanks,
Suzi
Re: Long remission stories
Lots of great words here. I'm a positive guy and my wife is the worry wart. Like me, I'm sure your husband is always thinking of the multiple myeloma in the back of his mind, but is not going to worry you. But we enjoy the days making the most of the unknown time we have left. Prior to multiple myeloma, we didn't know how much time we had left, so why do we worry about it now?
I went to a multiple myeloma meeting last year and there were several folks there with 10+ years of remission.
Good luck to you and your husband.
I went to a multiple myeloma meeting last year and there were several folks there with 10+ years of remission.
Good luck to you and your husband.
-
JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Long remission stories
Good evening,
I have not posted in a long while. My husband was diagnosed in July 2013. He went through treatment for 5 rounds, then to auto SCT in December 2013. We are coming up on his Day 0 anniversary, and he is doing quite well. He went back to work 23 days after SCT and has been working, coaching, teaching Sunday school and working out 4 times/week. His numbers still look great. He achieved a CR. His Velcade shot is every 2 weeks and will stay the same for at least another 6-12 months.
Stay positive. With the treatments that they have in the toolkit, there is a way to fight and win!
I have not posted in a long while. My husband was diagnosed in July 2013. He went through treatment for 5 rounds, then to auto SCT in December 2013. We are coming up on his Day 0 anniversary, and he is doing quite well. He went back to work 23 days after SCT and has been working, coaching, teaching Sunday school and working out 4 times/week. His numbers still look great. He achieved a CR. His Velcade shot is every 2 weeks and will stay the same for at least another 6-12 months.
Stay positive. With the treatments that they have in the toolkit, there is a way to fight and win!
-
LadyLib - Name: LadyLib
- Who do you know with myeloma?: Spouse
- When were you/they diagnosed?: July 2013
- Age at diagnosis: 42
9 posts
• Page 1 of 1