An older member of our support group was being treated with bortezomib [Velcade], melphalan and dexamethasone after being diagnosed in the fall of 2014. She began experiencing quite severe shaking of her hands and feels like "everything is shaking except her feet" She has experienced marked weakness as well.
Her doctor has taken her off all chemo for the last week, but she has noticed no improvement in her symptoms. Her blood work was improving on the chemo to the point that the doctor was OK with discontinuing the drugs, but she is wondering if any other patients have had similar experiences and whether the shaking did go away and they were put back on chemo.
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Shaking during Velcade, melphalan, and dex treatment?
Mary, I had a noticeable shake in my right arm and hand during my six cycles of VRD (Velcade, Revlimid, dexamethasone) induction therapy. It went away about a month after I stopped the treatments.
Hope this helps.
Kully
Hope this helps.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Shaking during Velcade, melphalan, and dex treatment?
Thanks, Kully, I will pass this on to our support group member and give her hope that it will end. She has only been off the chemo for 10 days now.
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Shaking during Velcade, melphalan, and dex treatment?
Mary,
I have not heard of this kind of shaking before, at least not to the degree you are describing.
I had some trouble with my hand writing at one point and also had a restless leg syndrome type of problem from neuropathy that went away. But, again, what you are describing with your friend seems different than this. Even with Kully’s experience, I do not know how common this is.
Has your friend’s doctor said anything about this being a rare occurrence or not? If it continues, maybe recommend your friend see a neurologist. Sometimes an oncologist does not have all the answers for these kind of things. A neurologist may not be able to cure the problem, but they may help identify what the root cause is or what led to this.
There is always a possibility it is something more complex than it appears to be.
I have not heard of this kind of shaking before, at least not to the degree you are describing.
I had some trouble with my hand writing at one point and also had a restless leg syndrome type of problem from neuropathy that went away. But, again, what you are describing with your friend seems different than this. Even with Kully’s experience, I do not know how common this is.
Has your friend’s doctor said anything about this being a rare occurrence or not? If it continues, maybe recommend your friend see a neurologist. Sometimes an oncologist does not have all the answers for these kind of things. A neurologist may not be able to cure the problem, but they may help identify what the root cause is or what led to this.
There is always a possibility it is something more complex than it appears to be.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: Shaking during Velcade, melphalan, and dex treatment?
Fortunately, your friend has kept her doctor informed of the shaking problem and he has responded by taking her off treatment. And thank you for being a resource for your friend through this forum.
It often takes a while for the effects of the drugs that we are taking to resolve. If the shaking is from one of the medications, hopefully she'll begin to see subtle changes soon. I would bet that the shaking is from the dex, especially if she has been on 40 mg of dex one, or more, times per week. I'm taking 20 mg a week and have shaking in my hands when I try to do things that require fine motor coordination often during the week. On some days I can feel my whole body quivering. I have cut my caffeine consumption drastically because caffeine hypes me up and causes me to shake and quiver, also. I miss my coffee, cola and chocolate.
Let us know how things evolve for your friend. This is an interesting topic.
Nancy in Phila
It often takes a while for the effects of the drugs that we are taking to resolve. If the shaking is from one of the medications, hopefully she'll begin to see subtle changes soon. I would bet that the shaking is from the dex, especially if she has been on 40 mg of dex one, or more, times per week. I'm taking 20 mg a week and have shaking in my hands when I try to do things that require fine motor coordination often during the week. On some days I can feel my whole body quivering. I have cut my caffeine consumption drastically because caffeine hypes me up and causes me to shake and quiver, also. I miss my coffee, cola and chocolate.
Let us know how things evolve for your friend. This is an interesting topic.
Nancy in Phila
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NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Shaking during Velcade, melphalan, and dex treatment?
Thank you all for your input. I was suspecting the dex could be the cause, but am not a patient and, when my husband (the patient) was on dex, he was also on massive doses of hydromorphone for his fractured vertebrae, so I think that masked a lot of possible side effects.
I will pass on the info to the woman involved and her husband and also mention the possibility of her asking for a neurological consult.
I love that we have this forum to draw on so many others who have "been there, done that".
Thanks again.
Mary
I will pass on the info to the woman involved and her husband and also mention the possibility of her asking for a neurological consult.
I love that we have this forum to draw on so many others who have "been there, done that".
Thanks again.
Mary
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Shaking during Velcade, melphalan, and dex treatment?
My Dad also had the same shaking, though it went away after a few cycles.
We were once at a standing wedding dinner. My dad's hands were visibly shaking – so much so that the food fell from the plate he was holding.
Those were tough times, but it went away after two months or so.
We were once at a standing wedding dinner. My dad's hands were visibly shaking – so much so that the food fell from the plate he was holding.
Those were tough times, but it went away after two months or so.
Re: Shaking during Velcade, melphalan, and dex treatment?
maryk,
I agree with you. The most common cause of this symptom while on this treatment is the dexamethasone. While dexamethasone is very effective, it is also associated with significant side effects. Options include lowering the dose, or switching to the often better tolerated corticosteroid, prednisone.
I wish you and your fellow support group member my best,
Jlk
I agree with you. The most common cause of this symptom while on this treatment is the dexamethasone. While dexamethasone is very effective, it is also associated with significant side effects. Options include lowering the dose, or switching to the often better tolerated corticosteroid, prednisone.
I wish you and your fellow support group member my best,
Jlk
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Dr. Jonathan Kaufman - Name: Jonathan Kaufman, M.D.
Beacon Medical Advisor
Re: Shaking during Velcade, melphalan, and dex treatment?
Thanks, Dr. Kaufman. I will pass on this info to the patient and her husband. Right now, she is off all chemo, so I don't know what is coming in the future, but it may help if she needs to go back on some drug cocktail.
MK
MK
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maryk - Name: maryk
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: July 2012
Re: Shaking during Velcade, melphalan, and dex treatment?
I was on thalidomide and dex for 10 months, and while I was taking the dex, I would initially get the jangles and could not sleep for the entire day that I was taking it. Gradually, I got more used to it and was able to sleep for short naps, but I continued with the shaking (although somewhat reduced) for a period of time till I quit taking the dex after 10 months.
I think It took about a month to clear out my system, then the trembling stopped. But, by that time, my weight dropped from around 200 lbs (91 kg) to about 140 (64 kg). I at no time stopped my medication till my oncologist told me that my blood work looked good and he was taking me off .
Good luck on your treatment. N.G.
I think It took about a month to clear out my system, then the trembling stopped. But, by that time, my weight dropped from around 200 lbs (91 kg) to about 140 (64 kg). I at no time stopped my medication till my oncologist told me that my blood work looked good and he was taking me off .
Good luck on your treatment. N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
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