Hey Mike,
What were the side effects with daratumumab?
Forums
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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: Daratumumab (Darzalex) is working for me
I am heartened to hear that daratumumab is working for you. My husband starts it on Thursday. He last tried elotuzumab (before it was FDA approved), but can no longer tolerate the Revlimid that goes with it. He also tried Kyprolis and Pomalyst. They'd work for a few months, and then his light chains would start to climb and his platelets tanked. We are hoping for the best.
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skeface01 - Name: Karen
- Who do you know with myeloma?: Partner
- When were you/they diagnosed?: 08/10
- Age at diagnosis: 64
Re: Daratumumab (Darzalex) is working for me
Daratumumab pricing - expensive.
Per the Myeloma Beacon article on the approval of Darzalex and using suggested dosing, a patient weighing 176 pound will cost $23,400 per month for the first two months, $11,700 per month for the next 4 months, and $5,850 for each month thereafter. The protocol is for weekly infusions for the first 8 weeks, then once every two weeks for the next 9 weeks, and once a month thereafter. To summarize, the cost is $5,840 per infusion.
The key for patients is how will insurance and medicare cover this? Since it is an infusion it should not fall under Medicare Part D which, is less comprehensive and primarily for oral prescriptions. Otherwise it should be handled the same as Kyprolis and Velcade are now.
Per the Myeloma Beacon article on the approval of Darzalex and using suggested dosing, a patient weighing 176 pound will cost $23,400 per month for the first two months, $11,700 per month for the next 4 months, and $5,850 for each month thereafter. The protocol is for weekly infusions for the first 8 weeks, then once every two weeks for the next 9 weeks, and once a month thereafter. To summarize, the cost is $5,840 per infusion.
The key for patients is how will insurance and medicare cover this? Since it is an infusion it should not fall under Medicare Part D which, is less comprehensive and primarily for oral prescriptions. Otherwise it should be handled the same as Kyprolis and Velcade are now.
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Ron Harvot - Name: Ron Harvot
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2009
- Age at diagnosis: 56
Re: Daratumumab (Darzalex) is working for me
Worked for my wife. After two weeks, IgG went from 5800 to 1680. Wife has had 2 transplants and multiple combination treatments. She is considered high-risk relapse refractory.
Things were getting real bad before the daratumumab / Pomalyst / dex treatment. IgG was doubling each week and the PET scan shows myeloma clusters and lesions throughout her body. She also needs radiation for a deteriorating hip.
Now that the numbers are down, the doctor wants her to talk to transplant doctor for an allogeneic (donor) stem cell transplant.
Things were getting real bad before the daratumumab / Pomalyst / dex treatment. IgG was doubling each week and the PET scan shows myeloma clusters and lesions throughout her body. She also needs radiation for a deteriorating hip.
Now that the numbers are down, the doctor wants her to talk to transplant doctor for an allogeneic (donor) stem cell transplant.
Re: Daratumumab (Darzalex) is working for me
Mike thanks for posting about your results so far on daratumumab. I may be going on daratumumab next month and wondered how your first couple of treatments went. I understand the first treatment takes about 8 hours, but the next two speed up a bit (as long as there are no major reactions). Did you have any reactions or problems with those infusions?
Any side effects as the week goes on?
I've been on Velcade + dex + Revlimid seemingly forever and most recently Kyprolis + dex + Revlimid, so I've gotten used to those side effects.
Any side effects as the week goes on?
I've been on Velcade + dex + Revlimid seemingly forever and most recently Kyprolis + dex + Revlimid, so I've gotten used to those side effects.
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MGLarson - Name: Marvin
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Oct 2011
- Age at diagnosis: 40
Re: Daratumumab (Darzalex) is working for me
Marvin:
My husband just had his 3rd daratumumab infusion yesterday, over about 5 hours. We went out to dinner afterwards. His first infusion was given VERY slowly. I think it ended up being over 9 hours. He developed a stuffy nose; they gave him some Benadryl, and slowed the infusion for a bit. No reactions the second or third time.
The only side effect he has had is that his platelets are starting to drop. He was put back on Pomalyst at the same time daratumumab was started, so don't know which of the drugs is causing that.
My husband just had his 3rd daratumumab infusion yesterday, over about 5 hours. We went out to dinner afterwards. His first infusion was given VERY slowly. I think it ended up being over 9 hours. He developed a stuffy nose; they gave him some Benadryl, and slowed the infusion for a bit. No reactions the second or third time.
The only side effect he has had is that his platelets are starting to drop. He was put back on Pomalyst at the same time daratumumab was started, so don't know which of the drugs is causing that.
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rumnting - Who do you know with myeloma?: husband
- When were you/they diagnosed?: 4/9/11
- Age at diagnosis: 54
Re: Daratumumab (Darzalex) is working for me
It's a terrific add to the myeloma arsenal for most. Our experience to date was no side effects during infusion. Starting with infusion day, feeling really good for days 1 through 4. Day 5 is iffy (flu like symptoms - maybe a delayed infusion reaction?) and harder day 6 and day 7. That profile is way better than the prior infusions using the imid drugs. Rinse and repeat. Light chain testing showed significant progression over 4 infusions. back to the drawing board for us.
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philatour - Who do you know with myeloma?: spouse
Re: Daratumumab (Darzalex) is working for me
Hey Mike,
I'm a fellow North Carolinian on the Darzalex diet. I had my second infusion on Thursday. Because I had the reaction during my first, I had to have the full bag again. Good news was no more reaction, so next week it's a half dose.
One other note: I intend to discuss with my onc on next visit the fact that I believe my peripheral neuropathy is more intense since I started on Darzalex. No indications of that side effect in any of the literature, but I plan to call the Janssen and FDA reporting number to discuss.
Good luck to all,
Jack
I'm a fellow North Carolinian on the Darzalex diet. I had my second infusion on Thursday. Because I had the reaction during my first, I had to have the full bag again. Good news was no more reaction, so next week it's a half dose.
One other note: I intend to discuss with my onc on next visit the fact that I believe my peripheral neuropathy is more intense since I started on Darzalex. No indications of that side effect in any of the literature, but I plan to call the Janssen and FDA reporting number to discuss.
Good luck to all,
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Daratumumab (Darzalex) is working for me
Hi Mike,
I had my third treatment last Thursday. It was the short bag and a 5-hour day. Seems quite tolerable if the stuff works as advertised! I continue to have more intense neuropathy and have yet to check that out with the FDA, but will next week.
Question: Are they taking complete (light chain and M-spike included) blood work samples from you on each visit?
So far they have only taken a CBC from me except for first visit. I was labeled a nonsecretor after my transplant in 2011 and, except for one or two minor (0.1-0.2 g/dL) M-spike results, most always show no measurable protein. My light chain ratio is always in balance. So unless you are being measured for some other marker of which I am unaware, I guess my progress or lack thereof will have to await the quarterly PET/CT exams on my schedule.
I'd appreciate any of your or anyone else's thoughts. My best wishes for everyone.
Jack
I had my third treatment last Thursday. It was the short bag and a 5-hour day. Seems quite tolerable if the stuff works as advertised! I continue to have more intense neuropathy and have yet to check that out with the FDA, but will next week.
Question: Are they taking complete (light chain and M-spike included) blood work samples from you on each visit?
So far they have only taken a CBC from me except for first visit. I was labeled a nonsecretor after my transplant in 2011 and, except for one or two minor (0.1-0.2 g/dL) M-spike results, most always show no measurable protein. My light chain ratio is always in balance. So unless you are being measured for some other marker of which I am unaware, I guess my progress or lack thereof will have to await the quarterly PET/CT exams on my schedule.
I'd appreciate any of your or anyone else's thoughts. My best wishes for everyone.
Jack
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Jackbo1 - Name: Jack Bowman
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 2011
- Age at diagnosis: 69
Re: Daratumumab (Darzalex) is working for me
I am on my 6th treatment as I write this. Long day, 6-7 hours. I get a lab test done every 4 cycles. I get a CBC done each week, but the lab once a month. First lab result numbers went down, so I am happy it's working.
I have rarely had side effects with any of the treatment drugs over the years so can't comment on that.
Good luck.
I have rarely had side effects with any of the treatment drugs over the years so can't comment on that.
Good luck.
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