Hi Everyone,
My brother is 46 and has been newly diagnosed with multiple myeloma. He was considered smoldering for a very short time until a couple of days ago, when he ended up in the hospital in kidney failure. Thankfully they were able to get his kidneys under control and have started chemo.
His doctor has him on Velcade and dex. The doctor is not a myeloma specialist - he does have an appointment with one in a couple of weeks.
My question is, don't doctors typically use Revlimid also?
I'm concerned he's not getting everything he should be getting, and I have told my sister-in-law to ask the doctor why he's not getting this.
Thanks!
Jen
Forums
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jlyurko - Name: Jen
- Who do you know with myeloma?: Brother
- When were you/they diagnosed?: 9/15
- Age at diagnosis: 46
Re: Newly diagnosed brother not getting Revlimid
I was diagnosed 5 weeks ago and they have me on Revlimid ... 14 days on, 7 days off, plus dex and Velcade.
The pain stopped after hospital but two days ago the pain in chest and hip are back. I have pain pills but try to avoid them.
Talked to a couple of patients with myeloma during my weekly chemo shot and they are on the same regimen.
Good luck and stay positive.
Tom
The pain stopped after hospital but two days ago the pain in chest and hip are back. I have pain pills but try to avoid them.
Talked to a couple of patients with myeloma during my weekly chemo shot and they are on the same regimen.
Good luck and stay positive.
Tom
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Tom74 - Name: Tom Meredith
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 9/5/15
- Age at diagnosis: 73
Re: Newly diagnosed brother not getting Revlimid
Hi Jen,
Sorry to hear about your brother's diagnosis.
It's good that your brother will be seeing a myeloma specialist soon, and it's also good that you're checking to make sure his current treatment makes sense.
I suspect the main reason that your brother's doctor may be holding off on Revlimid for now is because of the kidney failure your brother experienced. Velcade is considered the go-to treatment for newly diagnosed patients with kidney issues. Revlimid less so.
The issue with Revlimid is that it is removed from the body by the kidneys. So, by taking the drug, your brother would be putting some extra burden on his kidneys. Your brother's doctor may want to wait a bit until the kidneys have healed to add the Revlimid.
You are definitely correct that Revlimid, Velcade, and dex is the most common treatment regimen for newly diagnosed myeloma patients in the U.S. (which I'm assuming is where your brother is located).
One question: When was your brother first diagnosed with smoldering myeloma?
Also, how often is your brother receiving Velcade injections right now?
Sorry to hear about your brother's diagnosis.
It's good that your brother will be seeing a myeloma specialist soon, and it's also good that you're checking to make sure his current treatment makes sense.
I suspect the main reason that your brother's doctor may be holding off on Revlimid for now is because of the kidney failure your brother experienced. Velcade is considered the go-to treatment for newly diagnosed patients with kidney issues. Revlimid less so.
The issue with Revlimid is that it is removed from the body by the kidneys. So, by taking the drug, your brother would be putting some extra burden on his kidneys. Your brother's doctor may want to wait a bit until the kidneys have healed to add the Revlimid.
You are definitely correct that Revlimid, Velcade, and dex is the most common treatment regimen for newly diagnosed myeloma patients in the U.S. (which I'm assuming is where your brother is located).
One question: When was your brother first diagnosed with smoldering myeloma?
Also, how often is your brother receiving Velcade injections right now?
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JimNY
Re: Newly diagnosed brother not getting Revlimid
Hi,
I was in the hospital for a few weeks after being diagnosed. Oddly my insurance company would not approve Revlimid until I was discharged. My doc said he had seen this before. I'm not sure if this is what you are seeing but thought I would mention.
Wishing your bro the best and hope all goes well.
BN
I was in the hospital for a few weeks after being diagnosed. Oddly my insurance company would not approve Revlimid until I was discharged. My doc said he had seen this before. I'm not sure if this is what you are seeing but thought I would mention.
Wishing your bro the best and hope all goes well.
BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Newly diagnosed brother not getting Revlimid
Thank you everyone for your replies.
Jim - he was diagnosed with smoldering myeloma in mid September. His plasma cells were 50% but his other levels were not in the active range however, they were creeping ever closer every time they were checked.
He is receiving Velcade every 3 days and dex every day right now.
Jen
Jim - he was diagnosed with smoldering myeloma in mid September. His plasma cells were 50% but his other levels were not in the active range however, they were creeping ever closer every time they were checked.
He is receiving Velcade every 3 days and dex every day right now.
Jen
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jlyurko - Name: Jen
- Who do you know with myeloma?: Brother
- When were you/they diagnosed?: 9/15
- Age at diagnosis: 46
Re: Newly diagnosed brother not getting Revlimid
Bar-none wrote:
Confused: Is it not the doctor who is responsible for the patient who must decide which treatment the patient needs ... of course among those that are approved by the relevant government health authorities?
And then the insurance company can pay.
Best regards, lev
I was in the hospital for a few weeks after being diagnosed. Oddly, my insurance company would not approve Revlimid until I was discharged. My doc said he had seen this before. I'm not sure if this is what you are seeing but thought I would mention.
Confused: Is it not the doctor who is responsible for the patient who must decide which treatment the patient needs ... of course among those that are approved by the relevant government health authorities?
And then the insurance company can pay.
Best regards, lev
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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
Re: Newly diagnosed brother not getting Revlimid
Jen-
As was posted earlier, your brother's doctor probably didn't prescribe Revlimid because of the kidney failure that your brother experienced, But, I'm questioning Velcade every 3 days. I've never heard of that dosing schedule. Maybe it's a lower dose per time than the standard dose.
Not everyone is prescribed VRD as induction therapy. Some people are only on Revlimid and others are only on Velcade. I'm sure there are many reasons for choosing one over the other, but I couldn't comment on that. I had induction with Revlimid and dex and have now been on Revlimid and dex again following relapse 3 years ago. I respond very well to the Revlimid / dex regimen.
Lev-
Doctors can prescribe any approved drug that they want to treat something, but the insurance company decides whether it will pay, or not. That's one of the reasons that it's important to know what is covered in your prescription plan's formulary. I changed plans last year because one of the drugs that I use for chronic eye problems from shingles in the eye wasn't covered by my previous prescription plan. I also ended up paying cash for oxycodone several years ago when my arm broke from myeloma and the prescription plan would only pay for 3 days worth. Unfortunately it was a Friday evening so there was no way that I could get my doctor to apply for authorization of a 30 day supply of oxycodone.
Recently the pharmacist at the specialty pharmacy that fills my Revlimid prescription has asked me each month if I am currently in the hospital. When in the hospital your hospital insurance is supposed to pay for the drugs that you take while there. The whole prescription drug scene and insurance scene is so complicated.
Nancy in Phila
As was posted earlier, your brother's doctor probably didn't prescribe Revlimid because of the kidney failure that your brother experienced, But, I'm questioning Velcade every 3 days. I've never heard of that dosing schedule. Maybe it's a lower dose per time than the standard dose.
Not everyone is prescribed VRD as induction therapy. Some people are only on Revlimid and others are only on Velcade. I'm sure there are many reasons for choosing one over the other, but I couldn't comment on that. I had induction with Revlimid and dex and have now been on Revlimid and dex again following relapse 3 years ago. I respond very well to the Revlimid / dex regimen.
Lev-
Doctors can prescribe any approved drug that they want to treat something, but the insurance company decides whether it will pay, or not. That's one of the reasons that it's important to know what is covered in your prescription plan's formulary. I changed plans last year because one of the drugs that I use for chronic eye problems from shingles in the eye wasn't covered by my previous prescription plan. I also ended up paying cash for oxycodone several years ago when my arm broke from myeloma and the prescription plan would only pay for 3 days worth. Unfortunately it was a Friday evening so there was no way that I could get my doctor to apply for authorization of a 30 day supply of oxycodone.
Recently the pharmacist at the specialty pharmacy that fills my Revlimid prescription has asked me each month if I am currently in the hospital. When in the hospital your hospital insurance is supposed to pay for the drugs that you take while there. The whole prescription drug scene and insurance scene is so complicated.
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
Re: Newly diagnosed brother not getting Revlimid
Hi Y'all,
Well it s complicated for sure. So the way it works for specialty meds for me is that the insurance company must approve before the pharmacy will fill.
While in the hospital, they would not approve Revlimid but did approve Velcade.
Best! BN
Well it s complicated for sure. So the way it works for specialty meds for me is that the insurance company must approve before the pharmacy will fill.
While in the hospital, they would not approve Revlimid but did approve Velcade.
Best! BN
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Bar-none - Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3/14
Re: Newly diagnosed brother not getting Revlimid
Nancy -
You said that
When Jen wrote that her brother is getting Velcade every 3 days, I figured it was her interpretation of what is actually a twice per week dosing schedule (Jen - correct me if I'm wrong). If that's the case, that wouldn't really be strange. While it's common these days to see once a week dosing for Velcade, the original recommended Velcade dose was twice a week for two weeks, followed by a week off.
The doctor in this case may have opted for the twice a week Velcade dosing to achieve a more intensive treatment while waiting to introduce Revlimid into the treatment regimen when the brother's kidneys become healthier.
You said that
I'm questioning Velcade every 3 days. I've never heard of that dosing schedule."
When Jen wrote that her brother is getting Velcade every 3 days, I figured it was her interpretation of what is actually a twice per week dosing schedule (Jen - correct me if I'm wrong). If that's the case, that wouldn't really be strange. While it's common these days to see once a week dosing for Velcade, the original recommended Velcade dose was twice a week for two weeks, followed by a week off.
The doctor in this case may have opted for the twice a week Velcade dosing to achieve a more intensive treatment while waiting to introduce Revlimid into the treatment regimen when the brother's kidneys become healthier.
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Jonah
Re: Newly diagnosed brother not getting Revlimid
Velcade administration on days 1, 4, 8, 11 is a common induction dosing schedule.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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