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Re: Darzalex (daratumumab) side effects?
I just had my first infusion with Darzalex (daratumumab). It actually went quite well. Took 7 hours. Feel totally fine now. I am curious if over several infusions one gets side effects such as fatigue, etc. I do believe that some of the counts are affected.
Re: Darzalex (daratumumab) side effects?
My husband has taken Darzalex for about eighteen months now, starting off weekly and now monthly. It has been the most side-effect free of the anti-myeloma drugs he has taken.
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vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Darzalex (daratumumab) side effects?
Yesterday I completed the 9-week weekly infusions of Darzalex,and now it will be biweekly for a bit.
The side effects have been minimal for me, and nothing compared to the lethargy and other side effects of Revlimid, dexamethasone, and Ninlaro, and withstanding the autologous stem cell transplant (ASCT). I had my doctor prescribe a refill of Zofran (ondansetron) to get me through some mild bouts of nausea, and I take OTC Prilosec (omeprazole) to ward of any stomach issues. If it's your first time, start taking those a few days before your first treatment.
I had a metallic taste in my mouth a few days after each infusion, so foods didn't taste normal except for hot fudge sundaes and sweets. Nausea was worse on my empty stomach, so I always kept crackers in my car. Soups and sugar-free popsicles helped. They also recommended plastic wear instead of metalware.
My RBC and WBCs were low, but not as low as they were with my other treatments. Now they are normalizing.
I work full time and found it impossible to work remote for my first few infusions due to the 50 mg of Benadryl (diphenhydramine), so I took only a few days off. My first day, I had an extreme asthma attack and it resolved instantly when the nurse put more Benadryl in my IV. If you feel anything out of the normal, call the nurse before it gets worse!
Once I had a few infusions without any reactions, my doctor let me discontinue the Benadryl and steroid pre-medications and now I only take Tylenol. Now I feel 100% during treatments, with no tiredness.
The first two infusions were 8 hours long, and now the IVs have been reprogrammed to do the "Darzalex fast infusions," so they only last 1.5 hours now! When you start, thee infusions are administered slowly so they can minimize the strength of reactions you may have.
I've been fighting multiple myeloma while living in 3 different states, and all cancer centers let you bring creature comforts (i.e., I still take my travel roller bag, small electric blanket, pillow, comfy socks, favorite snacks with my own lunch). It looks like you're moving in, but who cares
Hopefully everyone experiences this, but in the past two weeks, I've had more energy than I've had in years. I now realize how the Revlimid and steroids negatively impacted my mood and energy levels and only being on Darzalex now has cleared the darkest clouds. There is a light at the end of the cytotoxic medication tunnel.
The side effects have been minimal for me, and nothing compared to the lethargy and other side effects of Revlimid, dexamethasone, and Ninlaro, and withstanding the autologous stem cell transplant (ASCT). I had my doctor prescribe a refill of Zofran (ondansetron) to get me through some mild bouts of nausea, and I take OTC Prilosec (omeprazole) to ward of any stomach issues. If it's your first time, start taking those a few days before your first treatment.
I had a metallic taste in my mouth a few days after each infusion, so foods didn't taste normal except for hot fudge sundaes and sweets. Nausea was worse on my empty stomach, so I always kept crackers in my car. Soups and sugar-free popsicles helped. They also recommended plastic wear instead of metalware.
My RBC and WBCs were low, but not as low as they were with my other treatments. Now they are normalizing.
I work full time and found it impossible to work remote for my first few infusions due to the 50 mg of Benadryl (diphenhydramine), so I took only a few days off. My first day, I had an extreme asthma attack and it resolved instantly when the nurse put more Benadryl in my IV. If you feel anything out of the normal, call the nurse before it gets worse!
Once I had a few infusions without any reactions, my doctor let me discontinue the Benadryl and steroid pre-medications and now I only take Tylenol. Now I feel 100% during treatments, with no tiredness.
The first two infusions were 8 hours long, and now the IVs have been reprogrammed to do the "Darzalex fast infusions," so they only last 1.5 hours now! When you start, thee infusions are administered slowly so they can minimize the strength of reactions you may have.
I've been fighting multiple myeloma while living in 3 different states, and all cancer centers let you bring creature comforts (i.e., I still take my travel roller bag, small electric blanket, pillow, comfy socks, favorite snacks with my own lunch). It looks like you're moving in, but who cares
Hopefully everyone experiences this, but in the past two weeks, I've had more energy than I've had in years. I now realize how the Revlimid and steroids negatively impacted my mood and energy levels and only being on Darzalex now has cleared the darkest clouds. There is a light at the end of the cytotoxic medication tunnel.
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Ninebluemoons - Name: Jayne
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Dec 2014
- Age at diagnosis: 42
Re: Darzalex (daratumumab) side effects?
Hi Jayne!
Thank you so much for writing!
I start Darzalex in a few days and your detailed post gives me the information I need to prepare.
I'm very excited about what I've been reading concerning Darzalex, but your post is the first really informative "what to expect" I've seen from someone who has been there.
My nurse says they don't use the accelerated 1.5-hour infusion yet, so I will be anxious to see if that continues to work for you.
Please update us from time to time. Once again this forum comes through for all of us!
Thank you so much for writing!
I start Darzalex in a few days and your detailed post gives me the information I need to prepare.
I'm very excited about what I've been reading concerning Darzalex, but your post is the first really informative "what to expect" I've seen from someone who has been there.
My nurse says they don't use the accelerated 1.5-hour infusion yet, so I will be anxious to see if that continues to work for you.
Please update us from time to time. Once again this forum comes through for all of us!
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Pepperink - Name: Jimmie
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: June 16, 2017
- Age at diagnosis: 66
Re: Darzalex (daratumumab) side effects?
I'm on biweekly Darzalex now for 3 more times, then monthly. Best I've felt in a long time. Only side effect is from the dexamethasone. Labs are much better. Be careful, though, as I've had bronchitis twice since being on Darzalex. I wear a mask when needed and do my errands early to avoid crowds. Can't wait till I only have to do once a month.
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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?
Daratumumab has worked well for me. The kappa / lambda light chains have dropped a lot. So much so I asked if we could stop treatment altogether, to which he replied sternly, "No!" No harm in trying.
I take the infusions every other week now and the time has been reduced from six or seven hours down to five. Some of that waiting is for the Benadryl (diphenhydramine), steroids, and Tylenol (paracetamol / acetaminophen) to take effect.
For the following two days I take prednisone, which I hate, as it fires up my neuropathy, but it seems to be one of those things that can't be omitted.
The only effects that I find troublesome after all these months are the nausea and relentless fatigue. My wife tells me I am accomplishing more, but it is such a drag that it is easy to feel discouraged, that it will never end.
I have quite a few food allergies: sugar, wheat, corn, and a number of others, but the exciting thing about these treatment days is that I can eat eggs, English muffins, cream cheese and everything else that makes me feel deprived because the steroids knock the allergic reactions flat. So it was a sad thing moving to every other week, and I wonder how I will cope when they become monthly.
Another thing that should not be left out of this success story is that I have been giving myself mistletoe extract injections every other day. Unfortunately I began those injections at the same time as the Darzalex and there is no way to know what if any effect they have been having. I wish I had been more scientific and had isolated the two.
I take the infusions every other week now and the time has been reduced from six or seven hours down to five. Some of that waiting is for the Benadryl (diphenhydramine), steroids, and Tylenol (paracetamol / acetaminophen) to take effect.
For the following two days I take prednisone, which I hate, as it fires up my neuropathy, but it seems to be one of those things that can't be omitted.
The only effects that I find troublesome after all these months are the nausea and relentless fatigue. My wife tells me I am accomplishing more, but it is such a drag that it is easy to feel discouraged, that it will never end.
I have quite a few food allergies: sugar, wheat, corn, and a number of others, but the exciting thing about these treatment days is that I can eat eggs, English muffins, cream cheese and everything else that makes me feel deprived because the steroids knock the allergic reactions flat. So it was a sad thing moving to every other week, and I wonder how I will cope when they become monthly.
Another thing that should not be left out of this success story is that I have been giving myself mistletoe extract injections every other day. Unfortunately I began those injections at the same time as the Darzalex and there is no way to know what if any effect they have been having. I wish I had been more scientific and had isolated the two.
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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
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