I'm hoping those of you who have used Velcade could share your experiences, particularly the side effects. Are there any that are particularly intolerable? What are the warning signs? Are there any prevention techniques or treatments for the side effects? Anything else I should know about taking Velcade?
Moderator's Note:
For the latest news about Velcade, including updates about Velcade side effects, see this link here at The Beacon:
https://myelomabeacon.org/tag/Velcade/
Also, subcutaneous ("sub q") administration of Velcade is believed to be one way to reduce the side effects associated with the drug. See this article and the discussion in its comments for more information:
https://myelomabeacon.org/news/2011/09/02/subcutaneous-velcade-bortezomib-information-for-multiple-myeloma-patients/
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Re: Velcade side effects
Hi Jack,
First let me say that I think you are very lucky that your doctor has prescribed Velcade for you. It is a very effective novel agent in your fight against multiple myeloma. The only side effect I have from it is peripheral neuropathy. Mostly, for me, it means that I am aware of my feet when I am not wearing socks and/or shoes. If you should start becoming aware of your fingers and/or toes tell your doctor. It has been found that the dose can be lowered and the Velcade will still be effective.
For many people the peripheral neuropathy goes away after you stop taking the Velcade.
The very best of luck to you.
First let me say that I think you are very lucky that your doctor has prescribed Velcade for you. It is a very effective novel agent in your fight against multiple myeloma. The only side effect I have from it is peripheral neuropathy. Mostly, for me, it means that I am aware of my feet when I am not wearing socks and/or shoes. If you should start becoming aware of your fingers and/or toes tell your doctor. It has been found that the dose can be lowered and the Velcade will still be effective.
For many people the peripheral neuropathy goes away after you stop taking the Velcade.
The very best of luck to you.
-
lin
Re: Velcade side effects
I have been on Velcade for over 2 years now and have very minimal side effects. When my Dr. started me on the treatment she recommended that I take Alpha-Lipoic Acid to help prevent or at least minimalize the neuropathy. I had treatment 4 times a week at the beginning then went down to 2 times a week and now only have it once a week and still have very little problems with the neuropathy. You might want to ask your Dr. about it. I take 200mg 3x a day. I have Multiple Myeloma and Amyloidosis so I don't know if that makes a difference in the treatment and dosage.. Thank You and All The Best...
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Eva..
Re: Velcade side effects
Jack, Velcade/Dex was very successful for my husband. As others have said peripheral neuropathy is a problem - he takes gabebentin (not sure that's spelled correctly) 400 mg 3 times a day - helps some. He was very sick the second month of treatment - dehydration and anemic - Doc also reduced the dosage and that, in my opinion, made a lot of difference. Had a lot of the other side affects -- rash (treated with perscription pill and lotion) but all side affects were manageable. Best to you in your treatment.
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Kansas - Name: Rex
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2010
- Age at diagnosis: 61
Re: Velcade side effects
I'm a bit surprised to hear so many comments suggesting that Velcade has been a relatively easy drug for people to take. Maybe it's because people are taking lower doses more frequently in the past. I don't know.
But I'm surprised because, when you check the prescribing information for Velcade,
http://www.Velcade.com/Files/PDFs/VELCADE_PRESCRIBING_INFORMATION.pdf
and compare how often people in the clinical trials got various side effects, Velcade doesn't seem like all that easy a drug to take.
A couple of examples. In the trial where Velcade was tested in previously untreated multiple myeloma patients, almost half of all the patients taking Velcade reported having either nausea or diarrhea, almost 40 percent reported being constipated, and one third reported vomiting.
There were also the expected issues with peripheral neuropathy and unexplainable nerve pain ("neuralgia"). One issue I had not heard before: 13 percent of the patients on Velcade got shingles ("Herpes Zoster").
Maybe people just expect these sort of problems when taking a cancer drug. I don't know. I guess that, given the statistics I just mentioned, I would have expected more people to be saying things like "The drug was really helpful to me, but, boy, it really did a number on my stomach" or "I definitely like the way the drug helped me, but I definitely don't like the case of shingles I got while on it."
But I'm surprised because, when you check the prescribing information for Velcade,
http://www.Velcade.com/Files/PDFs/VELCADE_PRESCRIBING_INFORMATION.pdf
and compare how often people in the clinical trials got various side effects, Velcade doesn't seem like all that easy a drug to take.
A couple of examples. In the trial where Velcade was tested in previously untreated multiple myeloma patients, almost half of all the patients taking Velcade reported having either nausea or diarrhea, almost 40 percent reported being constipated, and one third reported vomiting.
There were also the expected issues with peripheral neuropathy and unexplainable nerve pain ("neuralgia"). One issue I had not heard before: 13 percent of the patients on Velcade got shingles ("Herpes Zoster").
Maybe people just expect these sort of problems when taking a cancer drug. I don't know. I guess that, given the statistics I just mentioned, I would have expected more people to be saying things like "The drug was really helpful to me, but, boy, it really did a number on my stomach" or "I definitely like the way the drug helped me, but I definitely don't like the case of shingles I got while on it."
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Chuck
Re: Velcade side effects
Doctors prescribe acyclovir to prevent shingles when a patient is taking Velcade. It is taken twice a day every day and is very effective.
-
lin
Re: Velcade side effects
Chuck wrote:I'm a bit surprised to hear so many comments suggesting that Velcade has been a relatively easy drug for people to take. Maybe it's because people are taking lower doses more frequently in the past. I don't know.
But I'm surprised because, when you check the prescribing information for Velcade,
http://www.Velcade.com/Files/PDFs/VELCADE_PRESCRIBING_INFORMATION.pdf
and compare how often people in the clinical trials got various side effects, Velcade doesn't seem like all that easy a drug to take.
A couple of examples. In the trial where Velcade was tested in previously untreated multiple myeloma patients, almost half of all the patients taking Velcade reported having either nausea or diarrhea, almost 40 percent reported being constipated, and one third reported vomiting.
There were also the expected issues with peripheral neuropathy and unexplainable nerve pain ("neuralgia"). One issue I had not heard before: 13 percent of the patients on Velcade got shingles ("Herpes Zoster").
Maybe people just expect these sort of problems when taking a cancer drug. I don't know. I guess that, given the statistics I just mentioned, I would have expected more people to be saying things like "The drug was really helpful to me, but, boy, it really did a number on my stomach" or "I definitely like the way the drug helped me, but I definitely don't like the case of shingles I got while on it."
Whay being surprised? it is well known that side-effects are varied from one person to the other, I assume that other factors like age, other illnesses amy also have effect. I'm 49 years old and after 1/2 (8 cycels) of Velcade have no side effects at all (cross my fingers). But I also know that this may change any time.
Good luck all,
Shay
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Shay Tina
Re: Velcade side effects
What I found interesting is how many drugs in the combinations my husband was on, have the SAME side effects!
There are no 100% safe drugs to take, period. I think it is reasonable to say that ALL drugs have some form of side effects that patients need to be aware of. Communicating the severity of the side effects to your healthcare team is so important for them to be able to know when to cease a particular regimen they have you on. Expecting no side effects or eventual toxicity is a hopeful goal, but not always realistic, with the current medical intervention for treatment. Working to manage the side effects often becomes the focus and sometimes that doesn't work either, but many times it can be managed effectively.
All in all, our maintenance regimen, that includes Velcade, has been tolerable. Certainly we wish we could have continued to live our lives never having heard of multiple myeloma, but it is not our reality anymore. We are personally effected by it and all that goes with it.
Shay is quite right that chemotherapy in general, effects people differently, why that is, is often still a mystery to the medicos who research, create and administer what they hope will be live saving drugs.
There are no 100% safe drugs to take, period. I think it is reasonable to say that ALL drugs have some form of side effects that patients need to be aware of. Communicating the severity of the side effects to your healthcare team is so important for them to be able to know when to cease a particular regimen they have you on. Expecting no side effects or eventual toxicity is a hopeful goal, but not always realistic, with the current medical intervention for treatment. Working to manage the side effects often becomes the focus and sometimes that doesn't work either, but many times it can be managed effectively.
All in all, our maintenance regimen, that includes Velcade, has been tolerable. Certainly we wish we could have continued to live our lives never having heard of multiple myeloma, but it is not our reality anymore. We are personally effected by it and all that goes with it.
Shay is quite right that chemotherapy in general, effects people differently, why that is, is often still a mystery to the medicos who research, create and administer what they hope will be live saving drugs.
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habubrat - Name: Lori
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 2008
- Age at diagnosis: 48
Re: Velcade side effects
My daughter was diagnosed at 33. She was put on Velcade & dex at diagnosis. She did 4 cycles and they discovered it had given her an irregular heartbeat, which she did not have before. They stopped it. Fortunately, it had put her in CR and she went on to have a SCT.
While on Velcade she also developed neuropathy bad enough that she needed a cane. That did clear up after being off the Velcade.
While on Velcade she also developed neuropathy bad enough that she needed a cane. That did clear up after being off the Velcade.
Re: Velcade side effects
After 9 weeks of Velcade, 3 cycles of 3 weeks, initial treatment before ASCT, the side effects I experienced were indeed tolerable.
After the first 2-3 weeks, I got one day of more distinct neuropathy symptoms, slight stabbing like thin needles in my right heel. But it ceased after only one night. After that, only very mild effects: Like having silicone pads around the toes. To be honest, it is neither a good nor a bad feeling. It's just something I notice.
The physicians and the nurses was very alert: They said that if it became a problem or if it affected hands/fingers, they would reduce the doses or stop treatment with Velcade. This was not the case for me.
The pads became more distinct about 1-3 days after each injection. I only got 3 cycles, but it was not my experience that the side effects got worse from treatment to treatment - the level remained the same.
I am told that the side effects are reversible, at least for most people, when the treatment is ended. And I have read that subcutaneous injection is much safer than intravenous dispensation. Where I am only subcutaneous dispensation of Velcade is used.
2-3 weeks after the last treatment I can still feel the pads, but it's not something I think about every day.
Remember that some patients may not get any side effects and that probably nobody get all of them.
After the first 2-3 weeks, I got one day of more distinct neuropathy symptoms, slight stabbing like thin needles in my right heel. But it ceased after only one night. After that, only very mild effects: Like having silicone pads around the toes. To be honest, it is neither a good nor a bad feeling. It's just something I notice.
The physicians and the nurses was very alert: They said that if it became a problem or if it affected hands/fingers, they would reduce the doses or stop treatment with Velcade. This was not the case for me.
The pads became more distinct about 1-3 days after each injection. I only got 3 cycles, but it was not my experience that the side effects got worse from treatment to treatment - the level remained the same.
I am told that the side effects are reversible, at least for most people, when the treatment is ended. And I have read that subcutaneous injection is much safer than intravenous dispensation. Where I am only subcutaneous dispensation of Velcade is used.
2-3 weeks after the last treatment I can still feel the pads, but it's not something I think about every day.
Remember that some patients may not get any side effects and that probably nobody get all of them.
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Lev - Name: Lev
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: June 2014
- Age at diagnosis: 57
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