My dad, age 74, was diagnosed last fall (October 2013) with multiple myeloma. It took them 4 months to figure it out, mostly because we live in the boonies and our local doctors were not experienced. We walked into Dartmouth Hitchcock and they nailed it in about 15 minutes. He had "the highest protein levels ever seen" by them, and cytogenetics revealed he has the aggressive form. On the bright side, except for severe anemia and fatigue he felt OK and his bone scan was clean.
They immediately put him on dex (40 mg for first round, then 20) Velcade (1 shot every 2 weeks) and then Revlimid (10mg) on 21-day cycles. He did this for 3 months, ending in mid January 2014. His latest biopsy shows no evidence of the disease and his is now only mildly anemic. The doctors recommend auto transplant as soon as possible, because of his age, and we are considering that option, but are a little bit unsure as to how it would go given his age and also his own reactions.
My dad has never tolerated medication well. This first round of drugs 'kicked his butt' as his he says. He felt the Revlimid was the worst of the bunch. Even though, by what I can see on this site and others, his dosage was not that high, the side effects were barely tolerable. He has pretty severe neuropathy in feet and hands--they are completely numb (and at 6'-3" tall and 195 lbs., being stumblefooted turns into quite a liability). The Revlimid killed all appetite and caused the bloating, diarrhea and constipation and general malaise etc. He was also exhausted all the time.
He is off the drugs now and has been for over a month, and is still experiencing the Revlimid side effects, including to the digestive system, but what seems to be the most problematic is the fatigue. His anemia has improved drastically, but he is still fatigued all the time and by mid-day needs to go lie down. The doctors have no explanation--they say he should not be feeling the drugs any more. Has anyone else experienced this?
I should mention that while they were searching for the initial cause of his symptoms (before the multiple myeloma diagnosis) they checked out just about everything else, heart, digestive system, thyroid, and everything came back with a clean bill of health. At that point we attributed the fatigue to the anemia, but now I wonder. Could it just be another permanent side effect of the drugs?
Any thoughts, advice, or your own experiences are welcome.
Thanks,
Jessica
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Re: Prolonged fatigue after first induction?
I'm 74 and have been addressing multiple myeloma for the last 5 years. I have also had an ever increasing fatigue. I didn't take Revlimid, Velcade and a SCT, but I did suffer extreme anemia that has slowly been over come.
I suspect that people my age and your dad's age will suffer more fatigue due to the overall effect of the disease. Besides all the drugs the disease tends to slow one down and that alone isn't conducive to creating energy.
I suspect that people my age and your dad's age will suffer more fatigue due to the overall effect of the disease. Besides all the drugs the disease tends to slow one down and that alone isn't conducive to creating energy.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Prolonged fatigue after first induction?
Jessica,
As you know by now, fatigue is a real common side effect of myeloma and many of the drugs used to treat it. I would be surprised if your father did not have some fatigue even having been off Revlimid and Velcade for a month.
I did not take Revlimid for my initial therapy, just Velcade. I was off Velcade for three months before my stem cell transplant in Oct 2011. Through all of this I was really tired and rested a lot, but I did not feel so bad that I could not get out and at least try to walk, swim, or ride my bike on the stationary trainer some even if I usually did not feel up to it as I did before.
I think this is really important to do even though I did not always feel up to it. I was concerned that if I simply stayed in house and bed all day I would have deteriorated even further and gotten depressed. During the stem cell transplant the most exercise I could do was walking four laps around the hospital floor.
In the months after the SCT and when I was not on Velcade, Revlimid or dexamethasone I started recovering my strength pretty quickly over the course of the next few months. I was doing 25 plus mile rides in February and was skiing in March. By that summer I was doing 80 plus mile bike rides and swimming about 10,000 yards a week.
I found that recovery after going through all this is not something that happens in weeks but over the course of months. I still feel the need for an afternoon naps but that did not keep me from hiking to the top of Half Dome last summer.
Neuropathy however can be permanent, I still have some. That is something to stay on top of and manage with your father’s doctors. It is an important factor in treatment decisions.
I think your father will find, as many others, have that myeloma is a new reality and things will not ever be the same as they once were, there is no cure at this time. But the disease is treatable and while it is in a treatable state there can be a good quality and you can still do many of the things you did before.
As you know by now, fatigue is a real common side effect of myeloma and many of the drugs used to treat it. I would be surprised if your father did not have some fatigue even having been off Revlimid and Velcade for a month.
I did not take Revlimid for my initial therapy, just Velcade. I was off Velcade for three months before my stem cell transplant in Oct 2011. Through all of this I was really tired and rested a lot, but I did not feel so bad that I could not get out and at least try to walk, swim, or ride my bike on the stationary trainer some even if I usually did not feel up to it as I did before.
I think this is really important to do even though I did not always feel up to it. I was concerned that if I simply stayed in house and bed all day I would have deteriorated even further and gotten depressed. During the stem cell transplant the most exercise I could do was walking four laps around the hospital floor.
In the months after the SCT and when I was not on Velcade, Revlimid or dexamethasone I started recovering my strength pretty quickly over the course of the next few months. I was doing 25 plus mile rides in February and was skiing in March. By that summer I was doing 80 plus mile bike rides and swimming about 10,000 yards a week.
I found that recovery after going through all this is not something that happens in weeks but over the course of months. I still feel the need for an afternoon naps but that did not keep me from hiking to the top of Half Dome last summer.
Neuropathy however can be permanent, I still have some. That is something to stay on top of and manage with your father’s doctors. It is an important factor in treatment decisions.
I think your father will find, as many others, have that myeloma is a new reality and things will not ever be the same as they once were, there is no cure at this time. But the disease is treatable and while it is in a treatable state there can be a good quality and you can still do many of the things you did before.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Prolonged fatigue after first induction?
Thanks Eric H and Wayne for your responses. It's good to hear other stories, even if you wish there weren't so many. Seems like everyone has a different experience, especially with the meds.
Getting a handle on the 'new reality' is tough, I suppose it's a moving target initially and all this is new to us. My dad was also very active--he was hiking 4000 footers every weekend a year and a half ago, so to get wiped out going up a flight of stairs is definitely a reality check.
One thing we didn't (and don't) understand is how much myeloma does cause fatigue, and I'm wondering if anyone has any comments on this, and just how much that is related to age.
I had supposed that it was the symptoms (or the fixes) that cause the fatigue -- the anemia, or even the drugs. But if the disease is not detectable (although we do know it's still there), how much of a toll is it taking? And when you are in remission, do you still "feel" it all the time, or, without symptoms, are you able to forget (for a while at least)?
Again, any comments or advice from you all out there are welcome,
Jessica
Getting a handle on the 'new reality' is tough, I suppose it's a moving target initially and all this is new to us. My dad was also very active--he was hiking 4000 footers every weekend a year and a half ago, so to get wiped out going up a flight of stairs is definitely a reality check.
One thing we didn't (and don't) understand is how much myeloma does cause fatigue, and I'm wondering if anyone has any comments on this, and just how much that is related to age.
I had supposed that it was the symptoms (or the fixes) that cause the fatigue -- the anemia, or even the drugs. But if the disease is not detectable (although we do know it's still there), how much of a toll is it taking? And when you are in remission, do you still "feel" it all the time, or, without symptoms, are you able to forget (for a while at least)?
Again, any comments or advice from you all out there are welcome,
Jessica
Re: Prolonged fatigue after first induction?
Hi Jessica,
If it's any reassurance, I did induction (no transplant) in 2012 aged 33 and also no SCT just a harvest at that point: and I was definitely whacked for a long time afterwards. Not necessarily tired by climbing stairs, but then again I live in a flat so who knows! At Xmas two months after harvest, staying with relatives I certainly still _noticed_ stairs.
And I'm young, otherwise healthy, slim, fit, 5'6
To your dad: It does get better, just listen to your body, give it time, take it easy. It's a lot to process emotionally when treatment ends and a classic time to feel low. But don't worry about how you 'should' feel, just give yourself a massive pat on the back for getting this far.
I remember my mum at some point having read that exercise was important for myeloma patients, and although that's spot on, some days are just not that day. I think she was thinking of suggesting I should go out for a walk or something, a bit blind to the current state of play... She swiftly got the message! I loved going out to the park by my flat whenever I could, and I've been hiking in France since, but Rome wasn't built in a day. It'll all work out.
Then again, whenever you're truly concerned do push the doctors for tests and answers, it's a great thing to do.
I've definitely been fatigued when not anaemic: in fact I just started treatment again yesterday ( remission over) and all my bloods, blood pressure, etc etc are like a model healthy patient. I look the picture of good health too. But my myeloma numbers are creeping up and I've been feeling it physically a lot, fatigue included: full blood count doesn't capture how you feel always.
Right, rant over (blame the dex for the length...)
Well done & good luck to your dad!
Helga
If it's any reassurance, I did induction (no transplant) in 2012 aged 33 and also no SCT just a harvest at that point: and I was definitely whacked for a long time afterwards. Not necessarily tired by climbing stairs, but then again I live in a flat so who knows! At Xmas two months after harvest, staying with relatives I certainly still _noticed_ stairs.
And I'm young, otherwise healthy, slim, fit, 5'6
To your dad: It does get better, just listen to your body, give it time, take it easy. It's a lot to process emotionally when treatment ends and a classic time to feel low. But don't worry about how you 'should' feel, just give yourself a massive pat on the back for getting this far.
I remember my mum at some point having read that exercise was important for myeloma patients, and although that's spot on, some days are just not that day. I think she was thinking of suggesting I should go out for a walk or something, a bit blind to the current state of play... She swiftly got the message! I loved going out to the park by my flat whenever I could, and I've been hiking in France since, but Rome wasn't built in a day. It'll all work out.
Then again, whenever you're truly concerned do push the doctors for tests and answers, it's a great thing to do.
I've definitely been fatigued when not anaemic: in fact I just started treatment again yesterday ( remission over) and all my bloods, blood pressure, etc etc are like a model healthy patient. I look the picture of good health too. But my myeloma numbers are creeping up and I've been feeling it physically a lot, fatigue included: full blood count doesn't capture how you feel always.
Right, rant over (blame the dex for the length...)
Well done & good luck to your dad!
Helga
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Helga - Name: Helga
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May/June 2012
- Age at diagnosis: 32
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