My husband started Darzalex last Friday. The first hour at 50 ml/hour went fine and so the dose was upped to 100 ml/hour. After about ten minutes, my husband began to feel hot and his head hurt. We called the nurse and they stopped the infusion and began working on getting him a breathing treatment. While they were waiting for the doctor to be contacted to approve medication, his breathing got much worse. They called the doctor again but had to call for a rapid response team a minute later.
The rapid response team had to administer several doses of epinephrine (IV push and breathing treatment). I think they also gave him heparin but I am not sure as the nurse navigator and chaplain shepherded me out of the way and kept me from seeing what was happening.
Once he was partially stabilized, they rushed him to the ER. When I got there, he was doing better, but his blood pressure was very high and his pulse was 513 (atrial fibrillation). We had to stay in the ER for 12 hours to make sure there wasn't going to be another episode and then went home with epinephrine pens, steroids, and Benadryl (diphenhydramine). He had episodes of atrial fibrillation through Monday.
We saw the oncologist again today and he said with such a life-threatening reaction, Darzalex was not an option. He was also reluctant to try any other antibody treatment such as Empliciti for fear that it would also trigger a reaction.
These meds are so new that I am not sure anyone can answer this question yet, but has anyone experienced reactions from multiple antibody treatments, or experienced a reaction with one and not with another?
I hate to close the door on this whole line of treatment because it does seem to be more promising that anything else out there right now. Oncologist didn't close the door tight – just didn't want to try another so soon after the first reaction both because my husband has not quite recovered from the effects physically and because he has not recovered mentally either.
Looks like we are heading toward Pomalyst (pomalidomide, Imnovid) and another stem cell transplant if the doctors are willing to do one given his COPD and atrial fibrillation. We are waiting for that appointment to get set up with UPMC in Pittsburgh.
WV Farmgirl
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WV Farmgirl - Name: WV Farmgirl
- Who do you know with myeloma?: Husband
- When were you/they diagnosed?: 01/03/2014
- Age at diagnosis: 62
Re: Severe Darzalex infusion reaction
Very sorry to hear of your husband's reaction, Farmgirl. I do think your read on the situation is right on target. The doctors would want to be prudent and not put your husband through that episode again – at least for a good long while.
For other drugs, there is more of a history on how to dose reduce in the event of problems. For instance, you see that with Revlimid. When a new drug is approved, there is a phase where they study the maximum tolerable dose. When they establish that level, it does not mean that there are no grade 3/4 reactions, only a small amount. At the established dosing level, there is still the possibility of high grade reactions for a small percentage of the patients, and unfortunately, your husband fell into that category.
On the other side, however, the reports are that people who experience reactions the first time with Darzalex almost always have the reactions go down on subsequent treatments. So I think at some point in the future there may be more information on how to deal with adverse reactions.
From a common sense point of view, slowly ramping up the dosages and durations, could in theory work. Of course, the medical team would not want to do that solely on a "trial and error" basis. As the medical community gets more experience, they may learn how to dose reduce for Darzelex and, in theory, I think your husband may be able to use it down the road.
For other drugs, there is more of a history on how to dose reduce in the event of problems. For instance, you see that with Revlimid. When a new drug is approved, there is a phase where they study the maximum tolerable dose. When they establish that level, it does not mean that there are no grade 3/4 reactions, only a small amount. At the established dosing level, there is still the possibility of high grade reactions for a small percentage of the patients, and unfortunately, your husband fell into that category.
On the other side, however, the reports are that people who experience reactions the first time with Darzalex almost always have the reactions go down on subsequent treatments. So I think at some point in the future there may be more information on how to deal with adverse reactions.
From a common sense point of view, slowly ramping up the dosages and durations, could in theory work. Of course, the medical team would not want to do that solely on a "trial and error" basis. As the medical community gets more experience, they may learn how to dose reduce for Darzelex and, in theory, I think your husband may be able to use it down the road.
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JPC - Name: JPC
Re: Severe Darzalex infusion reaction
Farmgirl,
This is by far the most extreme reaction to Darzalex I've seen reported! While I would not want to have been in your husband's shoes, it must have been absolutely terrifying to have been in yours.
I couldn't help but notice that you mention that he has COPD. Since there are CD38 positive cells in the lung tissue and especially in the bronchial lining, why did they even decide to try Darzalex? Why not start with Empliciti, which primarily affects cells with SLAMF7 (the second most prevalent marker on myeloma cells)?
I also can't help but wonder what premeds they gave your husband?
Aloha
Daniel
This is by far the most extreme reaction to Darzalex I've seen reported! While I would not want to have been in your husband's shoes, it must have been absolutely terrifying to have been in yours.
I couldn't help but notice that you mention that he has COPD. Since there are CD38 positive cells in the lung tissue and especially in the bronchial lining, why did they even decide to try Darzalex? Why not start with Empliciti, which primarily affects cells with SLAMF7 (the second most prevalent marker on myeloma cells)?
I also can't help but wonder what premeds they gave your husband?
Aloha
Daniel
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DanielR - Name: Daniel Riebow
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: 12/2012
- Age at diagnosis: 59
Re: Severe Darzalex infusion reaction
Hi Farmgirl,
Sorry about your husband's reaction to Darzalex. I have had my sixth infusion and had just a problem with my first treatment. Rate was at 50 and into 15 min when I started coughing very severe, but they gave me medication and stopped treatment for half hour, started again, and I was fine.
The company say 50 percent get reactions, but my nurse says it's higher then 50 percent. I know they have a new trial testing Darzalex injection into the belly. Maybe that would help your husband to cope with the drug,
Best of health to all. May we find a myeloma cure for all and a cure for all that suffer with any kind of cancer.
Sorry about your husband's reaction to Darzalex. I have had my sixth infusion and had just a problem with my first treatment. Rate was at 50 and into 15 min when I started coughing very severe, but they gave me medication and stopped treatment for half hour, started again, and I was fine.
The company say 50 percent get reactions, but my nurse says it's higher then 50 percent. I know they have a new trial testing Darzalex injection into the belly. Maybe that would help your husband to cope with the drug,
Best of health to all. May we find a myeloma cure for all and a cure for all that suffer with any kind of cancer.
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