My husband is 83. He was diagnosed with Stage 3 multiple myeloma in July. He has gone through dex and Velcade for three months. He has suffered with severe leg cramps and is now in a rehabilitation center so that he can get his leg muscle strength back.
What can we expect? He is not longer on chemo or dex. He just was not tolerating it well. Our doctor is reluctant to give us much information. Is this the way the disease plays out? Reduced muscles in his legs?
Due to his age, he is not a candidate for transplant.
Searching for answers.
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Re: Diagnosed as stage 3 - off treatment after Velcade & dex
Hi,
Why was he taken off treatment? There are many other treatments that he might tolerate well. I would seek a different medical opinion ASAP. Unless he has reached complete remission (CR) or made the decision to not seek medical intervention then he should not be off treatment.
Why was he taken off treatment? There are many other treatments that he might tolerate well. I would seek a different medical opinion ASAP. Unless he has reached complete remission (CR) or made the decision to not seek medical intervention then he should not be off treatment.
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blair77 - Who do you know with myeloma?: My husband
- When were you/they diagnosed?: April 2013
- Age at diagnosis: 43
Re: Diagnosed as stage 3 - off treatment after Velcade & dex
It sounds like the Velcade has been a problem, as it is with many patients. There are alternatives such as Kyprolis, which is related to Velcade, but has fewer side effects. You also did not mention that he has tried Revlimid. Many patients do well on Revlimid alone or Revlimid combined with dex or Kyprolis.
As blair77 indicated, there are a lot of options, and with Stage 3, he should not be off treatment for very long.
I hope his doctors can find the right combination for him.
Ron
As blair77 indicated, there are a lot of options, and with Stage 3, he should not be off treatment for very long.
I hope his doctors can find the right combination for him.
Ron
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Diagnosed as stage 3 - off treatment after Velcade & dex
Is your husband being seen by a myeloma specialist? This is very important. As the others have said, Velcade and dex aren't the only treatments available.
What dose of dex was your husband on and how often? I found that when I was taking 40 mg of dex once a week, I had terrible cramping in my legs, thighs, abdomen, back and hands. Often they would occur at night and last for 10-15 minutes at a time and reoccur on a 60 minute cycle throughout the night. I am now taking 20 mg once a week and rarely have cramping.
Dex also is notorious for affecting the muscles around the pelvic girdle and the shoulder girdle. So, if he is having problems with muscle strength in his hips, this can be from the dex.
Unless your husband reached a complete response with the 3 rounds of Velcade and dex, he should be getting some kind of treatment.
All the best to your husband and to you,
Nancy in Phila
What dose of dex was your husband on and how often? I found that when I was taking 40 mg of dex once a week, I had terrible cramping in my legs, thighs, abdomen, back and hands. Often they would occur at night and last for 10-15 minutes at a time and reoccur on a 60 minute cycle throughout the night. I am now taking 20 mg once a week and rarely have cramping.
Dex also is notorious for affecting the muscles around the pelvic girdle and the shoulder girdle. So, if he is having problems with muscle strength in his hips, this can be from the dex.
Unless your husband reached a complete response with the 3 rounds of Velcade and dex, he should be getting some kind of treatment.
All the best to your husband and to you,
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
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