Hello,
My mother, diagnosed with multiple myeloma with light chain amyloidosis, just received her first Darzalex infusion in combination with steroids. Although she did not experience infusion reactions, the next morning she woke up with a severely distended (bloated) belly, to the point where her breathing has started to feel restricted. There has been no improvement for three days, nor have any of her doctors claimed to have seen this reaction from Darzalex before. We don't know if it's the steroid or the Darzalex causing this reaction, although we believe it's more likely to be the Darzalex.
Does anyone know if this reaction is common, or have any experience or insight that might help us?
Any help is appreciated, thanks so much.
Miles
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Re: Severe abdominal bloating after Darzalex infusion
Miles,
I am so sorry your mother is having trouble. Are the doctors doing anything to relieve the bloating? I have never heard of Darzalex doing that either, but that's not to say it isn't. I didn't see it listed as a side effect.
Is your mother new to steroid infusions too? I get moderate abdominal bloating every week when I take 20 mg dexamethasone. (I also get it on Darzalex infusion days, but it seems clear to me it's the dexamethasone.) I usually gain at least 2.5 pounds in weight very quickly, mostly in my lower abdomen, which then dissipates over the next few days. Perhaps your mother's body is just reacting more severely. I did have severe bloating to the tune of 30 pounds over a weekend when doctors pumped too much fluid in me. Then, doctors prescribed a diuretic to relieve the bloating and my breathing.
Good luck, and I hope your mother's feeling better today. By the way, never ever hesitate to call your doctor on a Sunday!
I am so sorry your mother is having trouble. Are the doctors doing anything to relieve the bloating? I have never heard of Darzalex doing that either, but that's not to say it isn't. I didn't see it listed as a side effect.
Is your mother new to steroid infusions too? I get moderate abdominal bloating every week when I take 20 mg dexamethasone. (I also get it on Darzalex infusion days, but it seems clear to me it's the dexamethasone.) I usually gain at least 2.5 pounds in weight very quickly, mostly in my lower abdomen, which then dissipates over the next few days. Perhaps your mother's body is just reacting more severely. I did have severe bloating to the tune of 30 pounds over a weekend when doctors pumped too much fluid in me. Then, doctors prescribed a diuretic to relieve the bloating and my breathing.
Good luck, and I hope your mother's feeling better today. By the way, never ever hesitate to call your doctor on a Sunday!
Re: Severe abdominal bloating after Darzalex infusion
This interests me, because my husband has been on Darzalex for a year and nine months. He had at least two lengthy episodes of serious fluid retention during his first six months on the drug.
When he had the first, he was taking oral prednisone for relief from irritation by a plasmacytoma in his femur. We all thought the fluid retention was from that. He weaned off the prednisone, took diuretics, and tried to increase his water intake, and it did go away.
The last time he had it he gained 19 pounds over two weeks, spread out over his whole body, but his legs and feet were the worst. He was not taking any steroids at that time except the IV one during his Darzalex infusion. His doctor was sure it was a drug reaction, but couldn't figure out what he was reacting to. He put him on a long-term diuretic and he did lose the fluid, but I have a slight caution. My husband was not told to stop taking the diuretic after he returned to his normal weight, and when he had to go to the ER in June 2017 with a femur fracture (tumor-related; you guessed it), his potassium was so low that it was a separate emergency that kept him in the hospital an extra week.
He has had no fluid retention episodes since then, even though he's still taking Darzalex. We have never understood the whole thing, but there it is.
When he had the first, he was taking oral prednisone for relief from irritation by a plasmacytoma in his femur. We all thought the fluid retention was from that. He weaned off the prednisone, took diuretics, and tried to increase his water intake, and it did go away.
The last time he had it he gained 19 pounds over two weeks, spread out over his whole body, but his legs and feet were the worst. He was not taking any steroids at that time except the IV one during his Darzalex infusion. His doctor was sure it was a drug reaction, but couldn't figure out what he was reacting to. He put him on a long-term diuretic and he did lose the fluid, but I have a slight caution. My husband was not told to stop taking the diuretic after he returned to his normal weight, and when he had to go to the ER in June 2017 with a femur fracture (tumor-related; you guessed it), his potassium was so low that it was a separate emergency that kept him in the hospital an extra week.
He has had no fluid retention episodes since then, even though he's still taking Darzalex. We have never understood the whole thing, but there it is.
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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: Severe abdominal bloating after Darzalex infusion
I have been on Darzalex for 1.5 years. During this time, I've been on it every-week or every-other-week. Once a month was tried, but it does not keep my cancer down. Right now I am infused every-other-week.
The bloating and fluid retention is from the IV steroid. My steroid had to be cut to 40 mg IV as I could not tolerate the 60 mg methylprednisolone IV. On 60 mg, I had shortness of breath, chest pressure, weight gain up to 5 pounds over 3 to 4 days, and episodes of tachycardia and atrial fibrillation. Also, the chest pressure and increase in heart rate easily happens if the drug is injected quickly, so the steroid is always administered slowly in an IV bag, and this helps prevent the feeling of chest pressure and tachycardia. (After the hurricane in Puerto Rico, there was a shortage of the Baxter IV bags, as they are manufactured in Puerto Rico, so a nurse would sit by my side and very slowly inject the IV steroid into my arm vein over 10 to 15 minutes.)
Even with the reduction to 40 mg steroid, I will gain up to 4 pounds over the next 3 days, so I have to double my Lasix (furosemide) beginning on the day of Darzalex and steroid infusion. I find this helps keep down (but does not completely prevent) the bloating and weight gain and ankle swelling, and is very important to prevent fluid overload around the heart and abdomen that may cause an episode of atrial fibrillation. This took a while to figure out, but now I have a much better handle on side effects after infusion day. Also, I am on Revlimid, but take 10 mg every third day. I cannot tolerate high-doses of Revlimid or Pomalyst any longer, and I even have trouble tolerating lower doses every day (shortness of breath, swelling, chest pressure).
My advice would be to talk with your Mom's oncologist and see if a reduction in steroid, plus administering the steroid slowly, PLUS increasing the diuretic (Lasix in my case) for 3 to 4 days beginning day of infusion helps. Also, if she is on Revlimid or Pomalyst, you might have to look into changing the dose or switching from one to the other.
I know it is frustrating, but it takes patience and trial and error to figure out a balance between treatment, side effects, keeping cancer down, and quality of life. A good oncologist will work with you. By the way, I have amyloidosis too.
Living with myeloma and amyloidosis is certainly a challenge and my best wishes are with you.
The bloating and fluid retention is from the IV steroid. My steroid had to be cut to 40 mg IV as I could not tolerate the 60 mg methylprednisolone IV. On 60 mg, I had shortness of breath, chest pressure, weight gain up to 5 pounds over 3 to 4 days, and episodes of tachycardia and atrial fibrillation. Also, the chest pressure and increase in heart rate easily happens if the drug is injected quickly, so the steroid is always administered slowly in an IV bag, and this helps prevent the feeling of chest pressure and tachycardia. (After the hurricane in Puerto Rico, there was a shortage of the Baxter IV bags, as they are manufactured in Puerto Rico, so a nurse would sit by my side and very slowly inject the IV steroid into my arm vein over 10 to 15 minutes.)
Even with the reduction to 40 mg steroid, I will gain up to 4 pounds over the next 3 days, so I have to double my Lasix (furosemide) beginning on the day of Darzalex and steroid infusion. I find this helps keep down (but does not completely prevent) the bloating and weight gain and ankle swelling, and is very important to prevent fluid overload around the heart and abdomen that may cause an episode of atrial fibrillation. This took a while to figure out, but now I have a much better handle on side effects after infusion day. Also, I am on Revlimid, but take 10 mg every third day. I cannot tolerate high-doses of Revlimid or Pomalyst any longer, and I even have trouble tolerating lower doses every day (shortness of breath, swelling, chest pressure).
My advice would be to talk with your Mom's oncologist and see if a reduction in steroid, plus administering the steroid slowly, PLUS increasing the diuretic (Lasix in my case) for 3 to 4 days beginning day of infusion helps. Also, if she is on Revlimid or Pomalyst, you might have to look into changing the dose or switching from one to the other.
I know it is frustrating, but it takes patience and trial and error to figure out a balance between treatment, side effects, keeping cancer down, and quality of life. A good oncologist will work with you. By the way, I have amyloidosis too.
Living with myeloma and amyloidosis is certainly a challenge and my best wishes are with you.
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Melpen - Name: Melissa
- Who do you know with myeloma?: myself
- When were you/they diagnosed?: Feb 5, 2014
- Age at diagnosis: 57
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