I have a question about my husband's fatigue and appearance.
He's extremely tired, can't stand or sit for more than a couple hours a day, then it's off to bed for the rest of the day. Very weak. He's just ending his 4th cycle of Revlimid, Velcade, and dexamethasone (RVd) (+ acyclovir and Zometa). When he started on February 2, 2016, he was a trim 5'10", 150 lb man. Now he's 5'7" 130 lb. Almost skin and bones. He has had 2 kyphoplasties, which reduced the 8 level pain to a 3. He now looks like he's aged 15-20 years. I fear for his ability to have the strength to fight this. He's thin, frail looking, hunched over, walks almost in a shuffle, and looks small. I feel so bad for him – previously a very active man.
I'm looking for encouragement that this is what treatment does. I don't care what he looks like, he's my Dave even if he become 5'3". What I'd like to know is if a person this frail can regain strength. He's still working, which requires standing and/or walking. Up until 2 weeks ago he could work most days. However, these past two weeks, he's been out half the time.
His 'numbers' are coming down. I can give them, if needed. But I need a glimmer of hope right now ... please.
Forums
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Can my frail husband regain his strength?
There have been a lot of multiple myeloma ups and downs in our journey. Some are easier recoveries than others.
You mention the situation has deteriorated (i.e., working less time) in the last 2 weeks. Have you contacted his doctor? Any guidance there?
There are appetite stimulants which could be prescribed. They take a few weeks to kick in, but have been helpful for us. I concur a 20 lb weight loss is of concern, especially for a person who has been trim their whole life.
Wishing you and your husband all the best.
You mention the situation has deteriorated (i.e., working less time) in the last 2 weeks. Have you contacted his doctor? Any guidance there?
There are appetite stimulants which could be prescribed. They take a few weeks to kick in, but have been helpful for us. I concur a 20 lb weight loss is of concern, especially for a person who has been trim their whole life.
Wishing you and your husband all the best.
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philatour - Who do you know with myeloma?: spouse
Re: Can my frail husband regain his strength?
Not a doctor's opinion, but I have heard that this is the worst time. Your husband is still suffering from the active myeloma, and on top of that, the side effects of the meds are bothering him.
However, as the numbers come down, he will start to feel better on that end, and the induction will move on to whatever is the next step. I would say that maybe he should just take a weed or two off, stay in bed and eat.
During initial induction, at the start, my wife took off about 6 weeks, and started working again a bit before the doctors were happy about it. She really potentially could have worked through it all, but took off the time at the doctors advice. She was starting to feel a good bit better, and she was getting cabin fever in the house. On second thought, maybe 2 to 3 weeks off would be better, and hopefully he will feel rejuvenated.
Not to look too far down the road, but if you all are contemplating the ASCT, he definitely needs to get some meat on him going into that.
Good luck to you.
However, as the numbers come down, he will start to feel better on that end, and the induction will move on to whatever is the next step. I would say that maybe he should just take a weed or two off, stay in bed and eat.
During initial induction, at the start, my wife took off about 6 weeks, and started working again a bit before the doctors were happy about it. She really potentially could have worked through it all, but took off the time at the doctors advice. She was starting to feel a good bit better, and she was getting cabin fever in the house. On second thought, maybe 2 to 3 weeks off would be better, and hopefully he will feel rejuvenated.
Not to look too far down the road, but if you all are contemplating the ASCT, he definitely needs to get some meat on him going into that.
Good luck to you.
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JPC - Name: JPC
Re: Can my frail husband regain his strength?
My husband was diagnosed at the same time and phase just completed his fourth cycle of RVD. He has lost a few inches and 20 lbs as well. Description is spot on as you described. He is in construction and obviously is having a hard time even in a supervisory-type role. He opted to put the transplant on back burner for now as his numbers are moving in right direction, although his symptoms don't show it. Back pain and constant ache along with neuropathy in legs from Velcade are troubling.
He is going two more cycles to see if they can knock numbers down a bit. Noticed the week off is sometimes worst week of all. Crazy. Not sure what to expect. Hoping he gets back some strength and quality of life. Too young for this. Construction trades exposed him to many hazardous materials. Thinking it has to play a role.
Keep me posted with your husbands progress and sending good energy your way.
He is going two more cycles to see if they can knock numbers down a bit. Noticed the week off is sometimes worst week of all. Crazy. Not sure what to expect. Hoping he gets back some strength and quality of life. Too young for this. Construction trades exposed him to many hazardous materials. Thinking it has to play a role.
Keep me posted with your husbands progress and sending good energy your way.
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Dancemom - Name: Dancemom
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan2016
- Age at diagnosis: 52
Re: Can my frail husband regain his strength?
Good morning Wendy,
My husband also went through a period such as you describe. He went from being 4 inches taller than I am to our being exactly eye level. He lost weight, was very weak, and had very little appetite or energy. In fact, he was actually having to use a cane during his first couple of induction cycles. There was one day so bad that I had to push him all over MD Anderson in a wheelchair because he couldn't walk even with the cane. His numbers were dropping during this period, but he was feeling and looking terrible.
About the third cycle he started rebounding, and by the end of the fourth he was almost back to normal. I know how gut wrenching it is to see your husband in his current condition, but from things I've read here and in other places it's not at all uncommon.
I wish you both the best of luck.
Debra
My husband also went through a period such as you describe. He went from being 4 inches taller than I am to our being exactly eye level. He lost weight, was very weak, and had very little appetite or energy. In fact, he was actually having to use a cane during his first couple of induction cycles. There was one day so bad that I had to push him all over MD Anderson in a wheelchair because he couldn't walk even with the cane. His numbers were dropping during this period, but he was feeling and looking terrible.
About the third cycle he started rebounding, and by the end of the fourth he was almost back to normal. I know how gut wrenching it is to see your husband in his current condition, but from things I've read here and in other places it's not at all uncommon.
I wish you both the best of luck.
Debra
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reece93 - Name: reece93
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2014
- Age at diagnosis: 57
Re: Can my frail husband regain his strength?
Wendy,
Over the first year and intense treatment, I lost 25% of my weight. My weight loss was greater than expected as I had some real complications. I have since replaced my weight and I am close to normal. I often say, I can do most things a man 10 years older can do. I'll take that.
Not to make light of the situation, but to paraphrase a familiar quote, "This disease is 90% physical and 50% mental." I benefited from antidepressants' help and would suggest it to others in the same situation.
Good Luck
Over the first year and intense treatment, I lost 25% of my weight. My weight loss was greater than expected as I had some real complications. I have since replaced my weight and I am close to normal. I often say, I can do most things a man 10 years older can do. I'll take that.
Not to make light of the situation, but to paraphrase a familiar quote, "This disease is 90% physical and 50% mental." I benefited from antidepressants' help and would suggest it to others in the same situation.
Good Luck
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blueblood - Name: Craig
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: March 2014
- Age at diagnosis: 54
Re: Can my frail husband regain his strength?
Dear Wendy:
Yes he can! My husband's physical condition also went down very quickly after diagnosis (April 2015). He lost 2 1/2 inches and more than 20 pounds at one point - - also very frail and stooped from various issues and pitfalls that arose after diagnosis (infection, bile duct obstruction, GI issues making eating difficult). He was 68 at diagnosis so I feared that he would not regain his former self.
I think about 6 months in, he began to get his appetite back, and went from a walker, to a cane, to now walking on his own. He has gained nearly all of his weight back. The difference is amazing and when we look back at where we were a year ago, neither of us would have ever thought it would be possible. He still suffers from peripheral neuropathy and back pain (which may never go away), but he has had an amazing come-back. I think you will hear all kinds of stories like this in this forum - - it amazes me how many myeloma patients have weathered similar storms, and recovered to a fairly "normal" life.
Best wishes to you and your husband.
Yes he can! My husband's physical condition also went down very quickly after diagnosis (April 2015). He lost 2 1/2 inches and more than 20 pounds at one point - - also very frail and stooped from various issues and pitfalls that arose after diagnosis (infection, bile duct obstruction, GI issues making eating difficult). He was 68 at diagnosis so I feared that he would not regain his former self.
I think about 6 months in, he began to get his appetite back, and went from a walker, to a cane, to now walking on his own. He has gained nearly all of his weight back. The difference is amazing and when we look back at where we were a year ago, neither of us would have ever thought it would be possible. He still suffers from peripheral neuropathy and back pain (which may never go away), but he has had an amazing come-back. I think you will hear all kinds of stories like this in this forum - - it amazes me how many myeloma patients have weathered similar storms, and recovered to a fairly "normal" life.
Best wishes to you and your husband.
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lwem - Name: Laurie
- Who do you know with myeloma?: husband
- When were you/they diagnosed?: April 2015
- Age at diagnosis: 68
Re: Can my frail husband regain his strength?
I have tears in my eyes. Thank you philatour, JPC, Dancemom, reece93, blueblood and Iwem. I read your posts that night and it really gave me enouragement. Thank you for your kindness. He's improved a tiny bit and I'll take it.
We went to the onc yesterday. Saw the PA. Took blood, urine and xrays. Might be kidneys. What a roller coaster ride.
We went to the onc yesterday. Saw the PA. Took blood, urine and xrays. Might be kidneys. What a roller coaster ride.
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wekebu - Name: Wendy
- Who do you know with myeloma?: Hubby
- When were you/they diagnosed?: Jan 2016
- Age at diagnosis: 55
Re: Can my frail husband regain his strength?
Hi Wendy!
Have faith, my friend. We're running just a few months ahead of you, so it's still very fresh. Wheelchair, weight loss, the whole deal.
Advice: rest as needed, skip work as much as possible to facilitate the resting. Throw calories at the man - if Taco Bell is the only appealing option, then Taco Bell it is. Instant breakfast drinks, canned soup , etc. Easy to prepare and they slide right down. We also invested in a motorized recliner for the living room, as back pain was a huge issue. The chair helped enormously with morale.
Life will never be the same, but it will get better. We're in a much better place now, and swimming in gratitude because of it.
Have faith, my friend. We're running just a few months ahead of you, so it's still very fresh. Wheelchair, weight loss, the whole deal.
Advice: rest as needed, skip work as much as possible to facilitate the resting. Throw calories at the man - if Taco Bell is the only appealing option, then Taco Bell it is. Instant breakfast drinks, canned soup , etc. Easy to prepare and they slide right down. We also invested in a motorized recliner for the living room, as back pain was a huge issue. The chair helped enormously with morale.
Life will never be the same, but it will get better. We're in a much better place now, and swimming in gratitude because of it.
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Dodie - Name: Dodie
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: October 2015
- Age at diagnosis: 55
Re: Can my frail husband regain his strength?
Yes, he can. We had many complicating issues at the time of my husband's diagnosis. Bottom line: he had lost 2 inches, and at 5'8', he was 119 pounds.
He is an excellent drinker of Ensure, and at the advise of a dietitian, we made everything as fattening as possible. My best example of that is potato soup that contained ham, potatoes, butter, cheese and cream! It was easy to eat, and definitely fattening. Ensure can also be mixed with ice cream to make a high protein milk shake! And think you get the picture there.
My husband is now 185 pounds! Heavier than he's ever been. and we're okay with that because he feels pretty good these days!
He is an excellent drinker of Ensure, and at the advise of a dietitian, we made everything as fattening as possible. My best example of that is potato soup that contained ham, potatoes, butter, cheese and cream! It was easy to eat, and definitely fattening. Ensure can also be mixed with ice cream to make a high protein milk shake! And think you get the picture there.
My husband is now 185 pounds! Heavier than he's ever been. and we're okay with that because he feels pretty good these days!
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