Hello Amo,
Like the others here, I'm glad to see you've started treatment.
Velcade does not always cause vomiting. Just because it is injected or infused does not mean that it has the same sort of side effects as older cancer treatments, which often do cause vomiting.
According to the side effects information in Table 10 of the prescribing information for Velcade, only about a third of myeloma patients taking Velcade in clinical trials experienced vomiting while being treated with the drug. Here is a link to the FDA-approved prescribing information for Velcade.
(The "prescribing information" for a drug is the government approved document that describes the drug's effectiveness and side effects.)
I hope you respond well to the Velcade treatment. Please keep us posted on how you are doing.
Forums
Re: My story - diagnosed with multiple myeloma this week
I rarely post, but I can totally relate to your post. By the time I was finally diagnosed, I had 12 rib fractures and hadn't slept a good night's sleep for months. That being said, the doctor immediately started me on RVD [Revlimid, Velcade, and dexamethasone] and, shortly after that, I started feeling better. He also mercifully prescribed Ambien [zolpidem], which helped significantly during those very painful nights.
During the course of treatment, I developed neutropenic fever and was hospitalized for 4 days. My course of treatment was ultimately switched to CyBorD [cyclophosphamide, Velcade, and dexamethasone]. In the meantime, I freaked out because they took me off Revlimid and I was very, very concerned that I was only being "partially" treated. I wanted to get back to feeling myself.
The lesson I learned from all of that was that there will be many more highs and lows, and it is important to listen to your doctors and seek emotional assistance from people around you.
I achieved a complete response and I proceeded to a stem cell transplant after about 5 months, and I'm now a little over a year post transplant and still in remission.
I had no vomiting with any of the drugs, with the exception of the pre-transplant heavy dose of Cytoxan [cyclophosphamide] - only one incident. I did suffer from constipation from something and, after many different tries, found an appropriate remedy.
I am currently on Velcade maintenance and have no side effects.
During the initial period of diagnosis and treatment I was very emotional and cried a LOT! Accept the fact that it's okay to be emotional about this diagnosis, but also try to give yourself a time frame to re-group your thoughts.
I found that a few days after the dex I was most emotional. I told myself I was allowed one 24 hour period to have a pity party per week, then I needed to accept my situation, embrace my faith, and get on with life as I now know it.
During the course of treatment, I developed neutropenic fever and was hospitalized for 4 days. My course of treatment was ultimately switched to CyBorD [cyclophosphamide, Velcade, and dexamethasone]. In the meantime, I freaked out because they took me off Revlimid and I was very, very concerned that I was only being "partially" treated. I wanted to get back to feeling myself.
The lesson I learned from all of that was that there will be many more highs and lows, and it is important to listen to your doctors and seek emotional assistance from people around you.
I achieved a complete response and I proceeded to a stem cell transplant after about 5 months, and I'm now a little over a year post transplant and still in remission.
I had no vomiting with any of the drugs, with the exception of the pre-transplant heavy dose of Cytoxan [cyclophosphamide] - only one incident. I did suffer from constipation from something and, after many different tries, found an appropriate remedy.
I am currently on Velcade maintenance and have no side effects.
During the initial period of diagnosis and treatment I was very emotional and cried a LOT! Accept the fact that it's okay to be emotional about this diagnosis, but also try to give yourself a time frame to re-group your thoughts.
I found that a few days after the dex I was most emotional. I told myself I was allowed one 24 hour period to have a pity party per week, then I needed to accept my situation, embrace my faith, and get on with life as I now know it.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: My story - diagnosed with multiple myeloma this week
I forgot to add that I also had 90 percent plasma involvement with high risk cytogenic factors.
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Carol D. - Name: Carol D.
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: February 2013
- Age at diagnosis: 59
Re: My story - diagnosed with multiple myeloma this week
Thank you all for the support. I really appreciate it. I was just nauseated and no vomiting.
As far as treatment, I haven't started the complete RVD. I am waiting for the Revlimid to be shipped to me and had 40 mg dex last week and another 40 mg today, and only one shot of Velcade. So we have to wait and see.
I do get emotional, but my wife helps out and that is priceless.
As far as treatment, I haven't started the complete RVD. I am waiting for the Revlimid to be shipped to me and had 40 mg dex last week and another 40 mg today, and only one shot of Velcade. So we have to wait and see.
I do get emotional, but my wife helps out and that is priceless.
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Hey Arno, I'm glad to hear you've started treatment. As for side effects, I think the most common serious problem with Velcade is peripheral neuropathy. My advice is to let your doctor know immediately if you start to have tingling or numbness in your fingers or toes. There are things your medical team can do to try to minimize peripheral neuropathy if you get it.
Dex has its own interesting side effects. On days when you take dex, you may "want to paint the house," in my doctor's words. Tons of energy and insomnia. And then somewhat of a crash on the first couple of days when you're off the dex.
But I looked at these issues as mere annoyances. RVD and a transplant worked well for me against the myeloma. So it has been worth the annoyances! I hope it's that way for you too.
Dex has its own interesting side effects. On days when you take dex, you may "want to paint the house," in my doctor's words. Tons of energy and insomnia. And then somewhat of a crash on the first couple of days when you're off the dex.
But I looked at these issues as mere annoyances. RVD and a transplant worked well for me against the myeloma. So it has been worth the annoyances! I hope it's that way for you too.
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: My story - diagnosed with multiple myeloma this week
Hello Amo, you asked about tolerating treatment. Again, everyone is different.
I have been on RVD for 4 months and my major complaint is insomnia. I get Velcade twice weekly and go in for the shot during my lunch hour from work. I get a patchy red area around the sub-q (subcutaneous) injection, but it is not irritating or painful.
I have been on Revlimid for 6 months and have not experienced any side effects.
Dex is the devil for me. I take 80 mg a week in four divided doses. It causes insomnia, and some minor mood swings.
Overall, I consider myself lucky to have so few side effects from my RVD.
All the best!
I have been on RVD for 4 months and my major complaint is insomnia. I get Velcade twice weekly and go in for the shot during my lunch hour from work. I get a patchy red area around the sub-q (subcutaneous) injection, but it is not irritating or painful.
I have been on Revlimid for 6 months and have not experienced any side effects.
Dex is the devil for me. I take 80 mg a week in four divided doses. It causes insomnia, and some minor mood swings.
Overall, I consider myself lucky to have so few side effects from my RVD.
All the best!
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Dano - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Jan 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Thank you all. I have severe constipation and bone pain. I am schedule for radiation next couple of weeks to try to get rid of my pain. I am on RVD now and will wait couple of weeks to report the progress.
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
Re: My story - diagnosed with multiple myeloma this week
Hello Amo. Sorry to hear about your constipation and bone pain.
This forum discussion may give you some good tips for dealing with the constipation:
"Revlimid and constipation," Beacon forum discussion started August 22, 2014.
As you might expect, there are a number of forum threads that discuss pain and how to deal with it. You can find many of those discussions at this link.
We hope you respond well to the RVD treatment and that side effects you've been experiencing diminish soon.
This forum discussion may give you some good tips for dealing with the constipation:
"Revlimid and constipation," Beacon forum discussion started August 22, 2014.
As you might expect, there are a number of forum threads that discuss pain and how to deal with it. You can find many of those discussions at this link.
We hope you respond well to the RVD treatment and that side effects you've been experiencing diminish soon.
Re: My story - diagnosed with multiple myeloma this week
I do not know if you are taking any opiate pain killers, but with the back pain as bad as it is, I suspect that you are. Opiate pain killers are known to commonly cause constipation and this was made clear to me by the pharmacist during the consult every time I picked up my prescription, and I got it bad. I would recommend asking your doctor and/or pharmacist about it if you have not already had a discussion about it. There are other medications that can be given to help, and some do not need a prescription.
I suspect that if you are taking pain killers, that is likely more the source of constipation than the Revlimid, but taking both probably is not helpful for this. I hope you start to feel better soon.
I suspect that if you are taking pain killers, that is likely more the source of constipation than the Revlimid, but taking both probably is not helpful for this. I hope you start to feel better soon.
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Eric Hofacket - Name: Eric H
- When were you/they diagnosed?: 01 April 2011
- Age at diagnosis: 44
Re: My story - diagnosed with multiple myeloma this week
I have absolutely no energy and constantly falling asleep in my chair. Also, lots ringing in my right ear. What's going on?
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ethomas - Name: Emmanouel Thomas AKA Amo
- Who do you know with myeloma?: Yes
- When were you/they diagnosed?: August 14, 2014
- Age at diagnosis: 65
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