Please keep in mind, since people are so different, that your dad could have any of the side effects mentioned.
Things to keep in mind with any of the possible treatment options:
Use your nausea meds. Don't wait until nausea sets in, assume it will happen and work to prevent it. Doing this will help with this other helpful trick, eat and hydrate. And try using something like Ensure. My husband was very ill and frail when he started treatment. Once we were a month in, things really started to improve. With the exception of one time that he refused my efforts to get him to eat and drink, all treatment went well. And neuropathy is treatable!
Proceed carefully of course, but it's probably not as bad as you're imagining.
Forums
Re: What are the worst side effects of Velcade?
Thank you so much for all the replies. It makes my family and I have a more positive view towards my father's treatment. God bless. 
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Tina28 - Name: Tina28
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 61
Re: What are the worst side effects of Velcade?
Forgot, diarrhea. Had a bad case of it after my last shot. Just watch what you eat.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: What are the worst side effects of Velcade?
About a month ago, they increased my dad's Velcade (bortezomib) 20%. Since then he has been having a massive hot flash in his face and ears the day after chemo. My mom is concerned that this might bring on a stroke.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: What are the worst side effects of Velcade?
I wish your dad the best and my thoughts are with him. I too had hot flashes after the Velcade, along with bone pain in my shin. Every now and then, I would have trouble thinking on the day right after the injection.
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Aclinkboca - Name: AC
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2015
- Age at diagnosis: 46
Re: What are the worst side effects of Velcade?
Thanks Boca.
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Little Monkey - Name: Little Monkey
- Who do you know with myeloma?: Father-stage 1 multiple myeloma
- When were you/they diagnosed?: March/April of 2015
Re: What are the worst side effects of Velcade?
I must have been very lucky with Velcade, which I have been receiving subcutaneously now for a year, along with dex. The worst side effect I have occasionally is a red streak down my abdomen from the injection. Some of the chemo nurses seem to have a special touch and I get no marks at all. I have not lost my hair or appetite and seem to have actually no side effects from the Velcade itself at all.
The dex, on the other hand, has a couple of mild side effects: two nights of insomnia, and a flushed face the next day, and that's it.
Don't expect to have a terrible time with the Velcade. I know that some people do have unpleasant side effects, but hopefully you will not be one of them. Good Luck.
The dex, on the other hand, has a couple of mild side effects: two nights of insomnia, and a flushed face the next day, and that's it.
Don't expect to have a terrible time with the Velcade. I know that some people do have unpleasant side effects, but hopefully you will not be one of them. Good Luck.
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barbaramh - Name: Barbara Hoffman
- Who do you know with myeloma?: me
- When were you/they diagnosed?: 1/5/2015
- Age at diagnosis: 75
Re: What are the worst side effects of Velcade?
Hi,
My experience with Velcade over nearly 12 months ( 2 weekly subcutaneous injections, then one week off) ...
For the most part, the side effects of peripheral neuropathy have been manageable. Numbness in the lower legs below knee and fingertips. You kind of 'learn to live with it'. I was taking Lyrica (pregabalin), but recently stopped it because of twitching.
Then all of a sudden a couple of weeks ago the numbness in the legs became more intense and they became very heavy. Apparently if peripheral neuropathy progresses this quickly it can lead to paralysis. Very frightening, especially since in combination with pomalidomide (Pomalyst) and dexamethasone it has managed to keep the multiple myeloma at bay for a while. It is different for everyone.
My experience with Velcade over nearly 12 months ( 2 weekly subcutaneous injections, then one week off) ...
For the most part, the side effects of peripheral neuropathy have been manageable. Numbness in the lower legs below knee and fingertips. You kind of 'learn to live with it'. I was taking Lyrica (pregabalin), but recently stopped it because of twitching.
Then all of a sudden a couple of weeks ago the numbness in the legs became more intense and they became very heavy. Apparently if peripheral neuropathy progresses this quickly it can lead to paralysis. Very frightening, especially since in combination with pomalidomide (Pomalyst) and dexamethasone it has managed to keep the multiple myeloma at bay for a while. It is different for everyone.
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skippy - Who do you know with myeloma?: self
- When were you/they diagnosed?: Jan 2013
- Age at diagnosis: 50
Re: What are the worst side effects of Velcade?
Hi All,
It has been a while; I hope you are all in best state of health.
Just to share with you. My father has just started his Velcade and dex. He has completed his first cycle, but he experienced extreme weakness and low hemoglobin (5.5).
He is doing a blood transfusion right now, but the his hemoglobin only went up to 8.7. Doc said low counts could be a side effect of Velcade. And also we saw a few bumps appears at his chest and ribs area, but somehow it disappear overnight. Are these common side effects?
Nausea not too bad, but very poor appetite.
Will my father's condition improve gradually after few cycles? Or will it continue the same during treatment?
Thank you
It has been a while; I hope you are all in best state of health.
Just to share with you. My father has just started his Velcade and dex. He has completed his first cycle, but he experienced extreme weakness and low hemoglobin (5.5).
He is doing a blood transfusion right now, but the his hemoglobin only went up to 8.7. Doc said low counts could be a side effect of Velcade. And also we saw a few bumps appears at his chest and ribs area, but somehow it disappear overnight. Are these common side effects?
Nausea not too bad, but very poor appetite.
Will my father's condition improve gradually after few cycles? Or will it continue the same during treatment?
Thank you
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Tina28 - Name: Tina28
- Who do you know with myeloma?: My father
- When were you/they diagnosed?: September 2015
- Age at diagnosis: 61
Re: What are the worst side effects of Velcade?
Hello Tina:
Generally, the first cycle and into the second cycle is the worst. The myeloma has not yet come down, but the side effects kick in before they do. Generally, after the second cycle, for most people, the myeloma has come down to the point of starting to feel better, and it's then more managing the side effects, which in some cases the body adjusts to, and if not the doctor can tweak things to make the treatment regimen more tolerable. The hemoglobin should recover as the myeloma markers go down.
Although there are typical or average answers, the individual cases can vary significantly. Most people would not necessarily need the transfusion at this point, but it is not uncommon. Good luck to your dad.
Generally, the first cycle and into the second cycle is the worst. The myeloma has not yet come down, but the side effects kick in before they do. Generally, after the second cycle, for most people, the myeloma has come down to the point of starting to feel better, and it's then more managing the side effects, which in some cases the body adjusts to, and if not the doctor can tweak things to make the treatment regimen more tolerable. The hemoglobin should recover as the myeloma markers go down.
Although there are typical or average answers, the individual cases can vary significantly. Most people would not necessarily need the transfusion at this point, but it is not uncommon. Good luck to your dad.
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JPC - Name: JPC
28 posts
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