lrich,
I think what's happening with your husband is pretty normal. After all of the hussle and bussle of the diagnosis, chemo, and SCT, this may be the first quiet space he's had to process all that's been going on! But if you are worried that he is drifting toward depression, make sure you talk to your doc about it.
EJ hasn't had trouble with moodiness, etc. (I've been the one that's struggled with those emotions!) But, after his diagnosis, he expressed – and I've encouraged – his return to his faith. I think a lot of us have unresolved issues with our faith or religion, and being told you have an incurrable cancer can bring those issues up again.
Good luck,
Lyn
Forums
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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: Life after a stem cell transplant
I have high risk multiple myeloma as determined by gene expression profiling. I was diagnosed in May 2010 at the age of 57. At that time I was in excellent health. I had no preexisting conditions and had an active lifestyle.
I've had two auto stem cell transplants (ASCTs): October 2010, completed in November 2010, and December 2010, completed in Mar 2011. Both were performed at University of Arkansas for Medical Sciences (UAMS).
The reason my second transplant took so long was due to the fact that I received about 7 or 8 forms of chemotherapy. As a result, I experienced some damage to my gastrointestinal (GI) tract. It took the doctors a while to diagnose and treat that condition. I lost a lot of weight (about 40 lbs / 18 kg) and a lot of my strength. This is an extremely unusual length for an ASCT.
Upon my return home, it took me 6 months to gain weight to get back to full strength. I was able to live at home by myself with the occasional help from neighbors.
Since then, I've had to make some changes to my life. I used to work as a consultant in the information technology field; I can no longer work due to fluctuating energy levels.
I am on maintenance chemotherapy and will be for the rest of my life because I have high risk multiple myeloma.
The chemo affects my GI tract and I experience mild constipation. It is manageable and I've learned to live with it. Trust me: mild constipation is preferable to mild diarrhea.
As I've mentioned, I experience fluctuating energy levels. That's what naps are for.
I experience insomnia on the day or two following my dexamethasone. When that happens, I get up early and watch the sun rise over the Atlantic Ocean. Living 6 miles from the Atlantic has its benefits.
My immune system sometimes dips into the danger level. During those times, I receive Neupogen injections and I limit my contact with sick folks.
All of these conditions are the side effects of my chemotherapy. My multiple myeloma is in remission.
I am able to get around and live on my own. I snorkel, scuba dive, dance, drive, travel by air, and socialize with friends.
So, to answer your question " What are the chances of us resuming a normal life." Some multiple myeloma patients do in fact resume a normal life. Read, for example, Arnold Goodman's columns on this website.
In my case, I haven't been able to return to my life as it was before multiple myeloma.
My life has changed. My life is great.
Pete N
I've had two auto stem cell transplants (ASCTs): October 2010, completed in November 2010, and December 2010, completed in Mar 2011. Both were performed at University of Arkansas for Medical Sciences (UAMS).
The reason my second transplant took so long was due to the fact that I received about 7 or 8 forms of chemotherapy. As a result, I experienced some damage to my gastrointestinal (GI) tract. It took the doctors a while to diagnose and treat that condition. I lost a lot of weight (about 40 lbs / 18 kg) and a lot of my strength. This is an extremely unusual length for an ASCT.
Upon my return home, it took me 6 months to gain weight to get back to full strength. I was able to live at home by myself with the occasional help from neighbors.
Since then, I've had to make some changes to my life. I used to work as a consultant in the information technology field; I can no longer work due to fluctuating energy levels.
I am on maintenance chemotherapy and will be for the rest of my life because I have high risk multiple myeloma.
The chemo affects my GI tract and I experience mild constipation. It is manageable and I've learned to live with it. Trust me: mild constipation is preferable to mild diarrhea.
As I've mentioned, I experience fluctuating energy levels. That's what naps are for.
I experience insomnia on the day or two following my dexamethasone. When that happens, I get up early and watch the sun rise over the Atlantic Ocean. Living 6 miles from the Atlantic has its benefits.
My immune system sometimes dips into the danger level. During those times, I receive Neupogen injections and I limit my contact with sick folks.
All of these conditions are the side effects of my chemotherapy. My multiple myeloma is in remission.
I am able to get around and live on my own. I snorkel, scuba dive, dance, drive, travel by air, and socialize with friends.
So, to answer your question " What are the chances of us resuming a normal life." Some multiple myeloma patients do in fact resume a normal life. Read, for example, Arnold Goodman's columns on this website.
In my case, I haven't been able to return to my life as it was before multiple myeloma.
My life has changed. My life is great.
Pete N
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Pete N - Name: Pete N
- Who do you know with myeloma?: me in south Florida
Re: Life after a stem cell transplant
I had a ASCT 1 year ago and I am not back to normal, yet. I still don't have my full appetite back, but worst of all is that I am mostly extremely fatigued. At times it is difficult to function.
They say that you should be back to normal in 3 -12 months, but I think that one never really fully recovers and that the brain accepts a New Normal.
They say that you should be back to normal in 3 -12 months, but I think that one never really fully recovers and that the brain accepts a New Normal.
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GeorgeLJurak - Name: George Jurak
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan. 2011
- Age at diagnosis: 59
Re: Life after a stem cell transplant
My partner was diagnosed in August 2010. What a shock. We just thought he was anemic. Fortunately, he has not had any bone involvement.
It took about 11 months to get him into a good remission in order to harvest the stem cells. He had his transplant in October 2011. He had horrible mouth sores from the melphalan. He regained his strength fairly quickly. He had about 10 in-home physical therapy sessions and we did his exercises together for the first 100 days. After that, he was up and out walking (his favorite exercise) in the neighborhood.
He has recovered quite well, although he did lose some lung function, confirmed by pulmonary function tests. He tends to be tired the day after a lot of activity. However, I think that is somewhat related to deconditioning. During the winter he slacked off on exercise. He just finished his immunizations. He was retired several years prior to his diagnosis.
It took about 11 months to get him into a good remission in order to harvest the stem cells. He had his transplant in October 2011. He had horrible mouth sores from the melphalan. He regained his strength fairly quickly. He had about 10 in-home physical therapy sessions and we did his exercises together for the first 100 days. After that, he was up and out walking (his favorite exercise) in the neighborhood.
He has recovered quite well, although he did lose some lung function, confirmed by pulmonary function tests. He tends to be tired the day after a lot of activity. However, I think that is somewhat related to deconditioning. During the winter he slacked off on exercise. He just finished his immunizations. He was retired several years prior to his diagnosis.
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skeface01 - Name: Karen
- Who do you know with myeloma?: Partner
- When were you/they diagnosed?: 08/10
- Age at diagnosis: 64
Re: Life after a stem cell transplant
Stem cell transplant are dispensed like PEZ - despite the reality that they are only beneficial in a small fraction of patients.
And again; a transplant is a misnomer. The actual treatment is high-dosage, lethal mustard gas that obliterates most dividing cells in your body - hence the long-term effects on systems other that the blood, such as the heart. Hard questions need to be asked before conceding to a transplant recommendation - one of the biggest misconceptions in multiple myeloma treatment,.
And again; a transplant is a misnomer. The actual treatment is high-dosage, lethal mustard gas that obliterates most dividing cells in your body - hence the long-term effects on systems other that the blood, such as the heart. Hard questions need to be asked before conceding to a transplant recommendation - one of the biggest misconceptions in multiple myeloma treatment,.
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Anonymous
Re: Life after a stem cell transplant
WOW ... I keep making the same big mistake over and over again, hopping on this website. When I am feeling like down and looking for a little comfort, I try to find some ray of hope here, and it is always doom and gloom. You all have nothing more to do than sit on the computer and focus on the bad.
My husband's transplant was less than 3 months ago. YES, 3 MONTHS. This past weekend he was back on the mound pitching and coaching my son's baseball team. I'm not saying life is perfect, but we are getting there. The future is still as uncertain as it was before this diagnosis.
I know we made the right decision by having a stem cell transplant. I know of people who have been in remission for 5 plus years and are still there. You people need to get a life. Stay off the computer and focus on the positive.
No need to respond, I will NEVER seek any kind of info, comfort, etc on this site again. That will come from our doctors!
My husband's transplant was less than 3 months ago. YES, 3 MONTHS. This past weekend he was back on the mound pitching and coaching my son's baseball team. I'm not saying life is perfect, but we are getting there. The future is still as uncertain as it was before this diagnosis.
I know we made the right decision by having a stem cell transplant. I know of people who have been in remission for 5 plus years and are still there. You people need to get a life. Stay off the computer and focus on the positive.
No need to respond, I will NEVER seek any kind of info, comfort, etc on this site again. That will come from our doctors!
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Anonymous
Re: Life after a stem cell transplant
It's a lot easier to leave nasty and discouraging remarks on this forum when one is "anonymous".
My husband had his transplant 1.5 years ago. He has a very high risk type. Though he may be starting to show an M-spike relapse now, he has felt very well the last 1.5 years. We have taken several trips, and he continues to work out at the gym and ride his motorcycle. He is very glad he underwent the transplant. He was not feeling well before, and the drugs were not bringing the m-spike down enough.
My husband had his transplant 1.5 years ago. He has a very high risk type. Though he may be starting to show an M-spike relapse now, he has felt very well the last 1.5 years. We have taken several trips, and he continues to work out at the gym and ride his motorcycle. He is very glad he underwent the transplant. He was not feeling well before, and the drugs were not bringing the m-spike down enough.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Life after a stem cell transplant
I want to address the person "anonymous" that posted her note on March 25th about her husband being 3 months post transplant. I have never been on this site and after reading your post I was shocked by your lack of compassion and consideration for others and your quick judgment and assessment of of people you don't even know. Why write a post that does nothing but put people down and in some twisted way make you feel better?
I underwent a stem cell transplant as well and I am doing very well, but this by no means is a forum to pass judgement on others and be so unkind. For you to take the time to be so thoughtless with your opinions on how others should cope with their personal struggles shows your true lack of understanding.
I wish your husband much success with his health, but never diminish what others have to face. Everyone copes and processes their recovery differently. There is no right or wrong way, and by no means are you or your husband superior because he is able to do a bit more than others. You should be ashamed of yourself. Have one of your children read your posts and you will see what a poor example you are setting.
I underwent a stem cell transplant as well and I am doing very well, but this by no means is a forum to pass judgement on others and be so unkind. For you to take the time to be so thoughtless with your opinions on how others should cope with their personal struggles shows your true lack of understanding.
I wish your husband much success with his health, but never diminish what others have to face. Everyone copes and processes their recovery differently. There is no right or wrong way, and by no means are you or your husband superior because he is able to do a bit more than others. You should be ashamed of yourself. Have one of your children read your posts and you will see what a poor example you are setting.
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Anonymous
Re: Life after a stem cell transplant
GeorgeLJurak wrote:
Hi,
I saw your post and have to ask: Are you on a Revlimid maintenance? My husband is almost 1 year out and EXTREMELY fatigued. His doctor did not use dex with it for maintenance.
We spoke to the oncologist about the fatigue and he prescribed Ritalin (methylphenidate) for it. Yes, the ADHD med. It has helped quite a bit. We have noticed that on the "off week " (no drugs) he feels pretty good. The doctor is surprised at just how fatigued my husband is.
I sympathize with you. I have seen the all-out look of exhaustion just come over him out of the blue. It is disheartening, but I suppose it is better than the alternative
I had a ASCT 1 year ago and I am not back to normal, yet. I still don't have my full appetite back, but worst of all is that I am mostly extremely fatigued. At times it is difficult to function.
They say that you should be back to normal in 3 -12 months, but I think that one never really fully recovers and that the brain accepts a New Normal.
Hi,
I saw your post and have to ask: Are you on a Revlimid maintenance? My husband is almost 1 year out and EXTREMELY fatigued. His doctor did not use dex with it for maintenance.
We spoke to the oncologist about the fatigue and he prescribed Ritalin (methylphenidate) for it. Yes, the ADHD med. It has helped quite a bit. We have noticed that on the "off week " (no drugs) he feels pretty good. The doctor is surprised at just how fatigued my husband is.
I sympathize with you. I have seen the all-out look of exhaustion just come over him out of the blue. It is disheartening, but I suppose it is better than the alternative
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Anonymous
31 posts
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