Hi, does anyone has information about the new Velcade treatment? I will start getting it twice a week. I have been on trials but no good results. Any side effects and is there good results on this new Velcade?
Thx,
Suzy
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suzyhosn - Name: snowie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 47
Re: New Velcade treatment
Hi Suzy. Can you explain what exactly you mean by "new Velcade"?
I'm guessing you mean the drug MLN9708 (ixazomib), which is very similar to Velcade. But MLN97078 can be taken orally instead of by injection. MLN9708 is still an investigational drug, so you can only take it in clinical trials. It's being developed by the same company that currently sells Velcade (Millennium).
I'm guessing you mean the drug MLN9708 (ixazomib), which is very similar to Velcade. But MLN97078 can be taken orally instead of by injection. MLN9708 is still an investigational drug, so you can only take it in clinical trials. It's being developed by the same company that currently sells Velcade (Millennium).
Re: New Velcade treatment
Hi Cheryl,
All I know is it is infusion twice a week for 2 weeks the u stop for 10 days and start again. I was told it is the new version of Velcade that has no side effects for neuropathy
All I know is it is infusion twice a week for 2 weeks the u stop for 10 days and start again. I was told it is the new version of Velcade that has no side effects for neuropathy
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suzyhosn - Name: snowie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 47
Re: New Velcade treatment
This is quite the mystery!
When I first read your most recent posting, Suzy, I thought maybe you were being given Kyprolis (carfilzomib). Kyprolis is in the same class of drugs as Velcade. They're called proteasome inhibitors. It's also sometimes called a newer version of Velcade, sort of like Revlimid is sometimes called a newer version of thalidomide.
Also, Kyprolis is often described as having a lower tendency to cause peripheral neuropathy.
But the dosing information you provided doesn't seem to fit with Kyprolis. Kyprolis is given twice a week for three weeks out of a four week cycle.
Are you sure you get the drug for two weeks, with a week off. Or do get it for three weeks, and then a week off?
If you are being given this as part of a trial, were you ever given a trial number, like "NCT01677858"? If you were, that would help us a lot.
Unfortunately, we can't really tell you about what sort of side effects to expect without knowing exactly what drug you're being given.
When I first read your most recent posting, Suzy, I thought maybe you were being given Kyprolis (carfilzomib). Kyprolis is in the same class of drugs as Velcade. They're called proteasome inhibitors. It's also sometimes called a newer version of Velcade, sort of like Revlimid is sometimes called a newer version of thalidomide.
Also, Kyprolis is often described as having a lower tendency to cause peripheral neuropathy.
But the dosing information you provided doesn't seem to fit with Kyprolis. Kyprolis is given twice a week for three weeks out of a four week cycle.
Are you sure you get the drug for two weeks, with a week off. Or do get it for three weeks, and then a week off?
If you are being given this as part of a trial, were you ever given a trial number, like "NCT01677858"? If you were, that would help us a lot.
Unfortunately, we can't really tell you about what sort of side effects to expect without knowing exactly what drug you're being given.
Re: New Velcade treatment
It may be called kyprolis. I am not quite sure about how many weeks but all I know it is the new Velcade and will take it 2 times a week. I will not start this sometime in February but just have little info.
I will ask my doctor more detalis but just wanted to find out about side effect.
Thx.
I will ask my doctor more detalis but just wanted to find out about side effect.
Thx.
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suzyhosn - Name: snowie
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: 2008
- Age at diagnosis: 47
Re: New Velcade treatment
You might find this insightful if you are talking about kyprolis.
https://myelomabeacon.org/news/2013/09/20/kyprolis-carfilzomib-revlimid-lenalidomide-dexamethasone-relapsed-multiple-myeloma-2/
There are definitely folks on this forum with first-hand knowledge of using kyprolis. It may be used as a single agent or in combo with other drugs like Revlimid and Dex
https://myelomabeacon.org/news/2013/09/20/kyprolis-carfilzomib-revlimid-lenalidomide-dexamethasone-relapsed-multiple-myeloma-2/
There are definitely folks on this forum with first-hand knowledge of using kyprolis. It may be used as a single agent or in combo with other drugs like Revlimid and Dex
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: New Velcade treatment
I am currently on a trial with MLN9708. It is a pill or capsule I am on 5.5mg plus 40 mg of dex given 1x per week. Only finished one cycle but my multiple myeloma has decreased 60 percent. I am shocked. There are many side effects, but one week off and recovery from meds are quick feeling good in 4th week.
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Mattie
Re: New Velcade treatment
Hey snowie.
Quick background:
I am a 45 y/o old, was in great shape prior to all this - I am a little bit softer and squishier now that I cannot exercise like normal.
So I am relatively new to all of this - my diagnoses was suspected in October/November after the anemia got bad and then confirmed by H/O in December, so I am in my 5th week of treatment. My doctors have determined that they will prep me for an ASCT in a few months depending on how I respond to treatment. The treatment began with a 4 day regimen of 40mg of dexamethasone and the next week they started me on a Monday once a week treatment of VCD - Velcade, cyclophosphamide (cytoxan), dexamethasone (reduced to 20mg 1x a week).
According to all I have gather from the team that treats me and my 2nd opinion, Velcade is better absorbed w a shot to the stomach. Its not painful and will be done in less than a minute so as long as you are not super fearful of needles you will do fine. The other drugs are cyclophosphamide (cytoxan) which I get via IV drip which lasts close to 2 hrs and dexamethasone which I take orally on Wednesday morning.
To date I have not experienced any neuropathy. The prevailing problem I have is with fatigue and some mental acuity. I still think normally but I notice that it is more taxing than it was in the past., napping is something I tend to do regularly now - sometimes I feel like a narcoleptic. The dexamethasone counters that and gives me insomnia for about 36 hours and causes me to have fits of hiccups. Its not a side effect listed on the main descriptions on the web but if you keep searching you will find an abstract about some patients that have experienced hiccups as well. Mine would last for 60-100 minutes when I was on the high dose regimen and came 3-5 at a time - like automatic fire, when they tapered the dosage down to 20mg it drop to maybe 15-25 minutes. I drink a lot of water already but I have found that sipping 36 oz slow will calm the contractions down a bit.
Quick background:
I am a 45 y/o old, was in great shape prior to all this - I am a little bit softer and squishier now that I cannot exercise like normal.
So I am relatively new to all of this - my diagnoses was suspected in October/November after the anemia got bad and then confirmed by H/O in December, so I am in my 5th week of treatment. My doctors have determined that they will prep me for an ASCT in a few months depending on how I respond to treatment. The treatment began with a 4 day regimen of 40mg of dexamethasone and the next week they started me on a Monday once a week treatment of VCD - Velcade, cyclophosphamide (cytoxan), dexamethasone (reduced to 20mg 1x a week).
According to all I have gather from the team that treats me and my 2nd opinion, Velcade is better absorbed w a shot to the stomach. Its not painful and will be done in less than a minute so as long as you are not super fearful of needles you will do fine. The other drugs are cyclophosphamide (cytoxan) which I get via IV drip which lasts close to 2 hrs and dexamethasone which I take orally on Wednesday morning.
To date I have not experienced any neuropathy. The prevailing problem I have is with fatigue and some mental acuity. I still think normally but I notice that it is more taxing than it was in the past., napping is something I tend to do regularly now - sometimes I feel like a narcoleptic. The dexamethasone counters that and gives me insomnia for about 36 hours and causes me to have fits of hiccups. Its not a side effect listed on the main descriptions on the web but if you keep searching you will find an abstract about some patients that have experienced hiccups as well. Mine would last for 60-100 minutes when I was on the high dose regimen and came 3-5 at a time - like automatic fire, when they tapered the dosage down to 20mg it drop to maybe 15-25 minutes. I drink a lot of water already but I have found that sipping 36 oz slow will calm the contractions down a bit.
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blayz - Who do you know with myeloma?: Self
- When were you/they diagnosed?: November 2013
- Age at diagnosis: 45
8 posts
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