How severe are the side effects of Darzalex? I know patients' responses are different, but in general what is common?
I'm heading to a regional cancer center in two weeks for my first infusion of Darzalex along with my normal Kyprolis and dexamethasone. They'll do the first infusion over a two-day period to see my reaction to the Darzalex. After that, I'll go on the weekly Darzalex in my home town. Just curious if I'll need anything else to counter my reaction to get through this.
Any help or advice would be appreciated.
Forums
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Darzalex (daratumumab) side effects?
Hi coop223,
Like you, I started Darzalex as an addition to Kyprolis and dexamethasone. In my case, I experienced spikes of high blood pressure that lasted 10-20 minutes. These kinds of reactions are much more common during the first few infusions and tend to dissipate with subsequent infusions.
The nurses dealt with my blood pressure spikes by slowing the rate of infusion. When I first started Darzalex, I was switched from dexamethasone to methylprednisolone. I also received Benadryl (diphenhydramine). By my fourth infusion, the spikes disappeared. After about six infusions I was back on dexamethasone instead of methylprednisolone.
Beyond the spikes in blood pressure as reactions to my first few infusions, I experienced a slight decrease in my white blood cell count (neutropenia, specifically). I already had mild anemia that was at least partially caused by Kyprolis.
In my case, and I believe in most cases, infusion reactions and side effects tend not to be serious with Darzalex. I has been a very effective drug in my case; it deepened the decrease in my kappa free light chains (I have kappa light chain myeloma) substantially on top of what had been achieved with Kyprolis.
In fact, the reason my oncologist gave me for the addition of Darzalex was that my response to Kyprolis was beginning to falter.
I hope the drug works as well for you as it has for me and many others.
Good luck and smooth sailing!
Like you, I started Darzalex as an addition to Kyprolis and dexamethasone. In my case, I experienced spikes of high blood pressure that lasted 10-20 minutes. These kinds of reactions are much more common during the first few infusions and tend to dissipate with subsequent infusions.
The nurses dealt with my blood pressure spikes by slowing the rate of infusion. When I first started Darzalex, I was switched from dexamethasone to methylprednisolone. I also received Benadryl (diphenhydramine). By my fourth infusion, the spikes disappeared. After about six infusions I was back on dexamethasone instead of methylprednisolone.
Beyond the spikes in blood pressure as reactions to my first few infusions, I experienced a slight decrease in my white blood cell count (neutropenia, specifically). I already had mild anemia that was at least partially caused by Kyprolis.
In my case, and I believe in most cases, infusion reactions and side effects tend not to be serious with Darzalex. I has been a very effective drug in my case; it deepened the decrease in my kappa free light chains (I have kappa light chain myeloma) substantially on top of what had been achieved with Kyprolis.
In fact, the reason my oncologist gave me for the addition of Darzalex was that my response to Kyprolis was beginning to falter.
I hope the drug works as well for you as it has for me and many others.
Good luck and smooth sailing!
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MrPotatohead - Name: MrPotatohead
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: March, 2015
- Age at diagnosis: 65
Re: Darzalex (daratumumab) side effects?
Thank you very much. I'm also getting it for the same reason you are and I also have kappa light chain. They're doing the induction over a two-day period just to see how I tolerate it. Sounds to me from your response that they'll be adjusting the rate of infusion and amount. No biggie.
Thanks again. I'll carry on my journey. Wish I could take a sail sometime with Capt Morgan.
Best of luck to you also.
Coop
Thanks again. I'll carry on my journey. Wish I could take a sail sometime with Capt Morgan.
Best of luck to you also.
Coop
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Darzalex (daratumumab) side effects?
My husband started Darzalex (daratumumab) last week on December 8 and had his second treatment today. It took a little over 8 hours for his first infusion and he only had one small reaction, a small rash and itch on the top of his head. All they had to do was stop the infusion for a minute and give additional Benadryl (diphenhydramine). Today the second treatment took about 6 hours and he had no problems at all.
We are keeping our fingers crossed that it works so we can proceed with a stem cell transplant the end of January.
We are keeping our fingers crossed that it works so we can proceed with a stem cell transplant the end of January.
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Kandi307
Re: Darzalex (daratumumab) side effects?
Sounds like being bored for 8 hours is the worst side effect. Thank you very much.
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coop223 - Name: derek cooper
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: November 2011
- Age at diagnosis: 57
Re: Darzalex (daratumumab) side effects?
I'm also interested in this topic.
Revlimid has stopped working and my oncologist is recommending Darzalex infusions for my kappa light chain myeloma. I had a very rough time when I had chemotherapy for colon cancer (FOLFOX4 with oxaliplatin). Having been almost promised that the neuropathy would be a temporary thing, here I am nearly ten years later with neuropathy that is always with me and frequently barely tolerable.
The thought of more infusions scares me. Before I agree to taking Darzalex, I'd hope for assurance that the side effects go away and that they are not as long-lasting as those of the colon cancer chemotherapy. It is difficult to believe that the FOLFOX did not cause the myeloma, but I will never know.
Any thoughts? Thank you.
Revlimid has stopped working and my oncologist is recommending Darzalex infusions for my kappa light chain myeloma. I had a very rough time when I had chemotherapy for colon cancer (FOLFOX4 with oxaliplatin). Having been almost promised that the neuropathy would be a temporary thing, here I am nearly ten years later with neuropathy that is always with me and frequently barely tolerable.
The thought of more infusions scares me. Before I agree to taking Darzalex, I'd hope for assurance that the side effects go away and that they are not as long-lasting as those of the colon cancer chemotherapy. It is difficult to believe that the FOLFOX did not cause the myeloma, but I will never know.
Any thoughts? Thank you.
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dbrr - Name: Michael
- Who do you know with myeloma?: self and my stepmother
- When were you/they diagnosed?: 3/22/17
- Age at diagnosis: 67
Re: Darzalex (daratumumab) side effects?
Michael -
I'm no expert on this, but I think the way oxaliplatin works is very different from how Darzalex works. Oxaliplatin is very non-specific - it attacks many types of cells besides the cancerous ones, causing all sorts of difficult side effects. Darzalex is much more specific to myeloma cells, attacking very few other types. This generally makes the side effects (if there are any) much more tolerable. Of course, everyone responds differently, but the Darzalex experience should be a heck of a lot easier on the body than the oxaliplatin experience.
I'm no expert on this, but I think the way oxaliplatin works is very different from how Darzalex works. Oxaliplatin is very non-specific - it attacks many types of cells besides the cancerous ones, causing all sorts of difficult side effects. Darzalex is much more specific to myeloma cells, attacking very few other types. This generally makes the side effects (if there are any) much more tolerable. Of course, everyone responds differently, but the Darzalex experience should be a heck of a lot easier on the body than the oxaliplatin experience.
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Mike F - Name: Mike F
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: May 18, 2012
- Age at diagnosis: 53
Re: Darzalex (daratumumab) side effects?
I was diagnosed with multiple myeloma on November 4, 2017, and admitted to the hospital for 3 weeks because I had no immune system. My numbers were so bad they didn’t think I was going to make it. After giving me 3 different kinds of treatment at once, I can now say I’m out of the hospital and in remission and my numbers are great.
I am now on a regimen of thalidomide, Darzalex, and Velcade. They all seem to be working well. This is the second month on the thalidomide and I am experiencing hair loss, blurry vision, some lower leg pain, anxiety, wheezing, and swollen ankles. Some of these side effects occurred before I started the thalidomide, so it makes it difficult to determine which is causing what. The hair loss and anxiety definitely started with this medication, but looking at all the information it does not say that these are side effects.
So I'm wondering if the hair loss and blurry vision are a result of the Darzalex.
I am now on a regimen of thalidomide, Darzalex, and Velcade. They all seem to be working well. This is the second month on the thalidomide and I am experiencing hair loss, blurry vision, some lower leg pain, anxiety, wheezing, and swollen ankles. Some of these side effects occurred before I started the thalidomide, so it makes it difficult to determine which is causing what. The hair loss and anxiety definitely started with this medication, but looking at all the information it does not say that these are side effects.
So I'm wondering if the hair loss and blurry vision are a result of the Darzalex.
Re: Darzalex (daratumumab) side effects?
My first infusion of Darzalex was not at all unpleasant, with only a few extremely mild side effects. As can often be the case, apprehension and dread were far worse than the actual event. I was given plenty of Benadryl and managed to sleep through much of the 9-hour treatment. Several days later, I have had headaches and my nausea has been extreme, but I don't know if those things are related to the Darzalex. No neuropathy!
In case there are others who have concerns about this treatment, I thought my experience might be encouraging. In a month or so, we will know if it is working.
In case there are others who have concerns about this treatment, I thought my experience might be encouraging. In a month or so, we will know if it is working.
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dbrr - Name: Michael
- Who do you know with myeloma?: self and my stepmother
- When were you/they diagnosed?: 3/22/17
- Age at diagnosis: 67
Re: Darzalex (daratumumab) side effects?
I was diagnosed with stage 1 multiple myeloma in November 2017 and am having induction treatment at the moment. The treatment regimen is weekly CyBorD (cyclophosphamide, Velcade, and dexamethasone) with daratumumab (Darzalex) infusions.
A strong antihistamine, Piriton (chlorphenamine), is given intravenously an hour before the Darzalex infusion, and that sends me off to sleep for a couple of hours. This all happens on a weekly basis, and the day after the infusion, I take dexamethasone again.
Side effects are nausea and fatigue, with a dex high, and then low. After 8 weeks of this regimen, the Darzalex infusion was reduced to every second week, and the dex dose was reduced also. I have the same side effects of nausea and fatigue each time, whether I have the infusion or not, so I think maybe the Darzalex has minimal side effects for me. I have noticed as time goes on, though, that my eyes are sensitive and a little blurry.
Round 14 of 16 tomorrow, and then two more weeks will see the induction phase finished. My results are very good, numbers down to almost undetectable.
Wish you all the best with the treatment. Hope it has minimal side effects for you.
A strong antihistamine, Piriton (chlorphenamine), is given intravenously an hour before the Darzalex infusion, and that sends me off to sleep for a couple of hours. This all happens on a weekly basis, and the day after the infusion, I take dexamethasone again.
Side effects are nausea and fatigue, with a dex high, and then low. After 8 weeks of this regimen, the Darzalex infusion was reduced to every second week, and the dex dose was reduced also. I have the same side effects of nausea and fatigue each time, whether I have the infusion or not, so I think maybe the Darzalex has minimal side effects for me. I have noticed as time goes on, though, that my eyes are sensitive and a little blurry.
Round 14 of 16 tomorrow, and then two more weeks will see the induction phase finished. My results are very good, numbers down to almost undetectable.
Wish you all the best with the treatment. Hope it has minimal side effects for you.
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Sinead50 - Name: Sinéad Ní Ghuidhir
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: 3November 2017
- Age at diagnosis: 50
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