Hi, everyone,
My husband is on his third type of medications for multiple myeloma since his diagnosis in March 2016. He was on Revlimid, Velcade, and dexamethasone (RVD), which caused a brief response, Empliciti with Revlimid and dex (no response), and is now on Darzalex with dex. His M-spike has dropped to less than half and seems to have stabilized. He has pain in his right hip / thigh from a tumor there, and takes Norco (acetaminophen / paracetamol + hydrocodone) every 4 hours for pain relief.
However, for the last couple of months he has been retaining what seems to me like an alarming amount of fluid. He is about 14 pounds above his normal, very stable weight. With diuretics, that sometimes comes down about 6 pounds, but no farther.
His doctor has halved his dex so that he takes 5 mg IV with the Darzalex infusion and 4 mg for two days following. On the dex he feels good and has good pain control. Off the dex, his pain and fatigue increase as time goes on till by about day 4-5 without dex he is just sleeping all the time and feeling truly lousy. At that point, he takes another dex because he knows it works. Things get better, except for the fluid retention.
His always-low blood pressure is starting to creep up. At his last doctor's visit it was 140/80.
He has always had shortness of breath on Darzalex and has had two episodes of upper respiratory infections (bronchitis/pneumonia) since starting it in January.
He also seems to have trouble with mental acuity/focus at times. Since he works as an electrician with high-voltage equipment, that kind of scares me.
His doctor doesn't seem to be concerned about any of this, but I'm not clear that his doctor is doing his job very well for other reasons. He has a good reputation here, but I think he may be suffering from burnout. He certainly acts very stressed whenever we go in for an appointment. Last time he never sat down, jiggled back and forth constantly, never looked us in the eye, misheard several things, and talked in half-sentences. He never communicated well, but it's not getting better!
Should I be concerned, or is this water retention something that goes with the territory?
Forums
4 posts
• Page 1 of 1
-
vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Fluid retention during Darzalex-dexamethasone treatment
First, I need to make a disclaimer that I am not a medical professional, but some thoughts came to mind while I was reading your post. My first thought was that he is retaining fluid because of the dexamethasone, but then you said that he's on quite low levels of dex when he gets his infusion. My other thought is that maybe something is going on with his kidneys, heart, and/or lungs. How are his blood levels for kidney function? Does he have his heart and lungs monitored by stethoscope to listen for possible fluid build up when he sees the doctor and when he gets his infusion? These are things to find out about if you don't know already.
As far as your doctor is concerned. If you have questions about his ability right now, consider going for a second opinion. You might also consider talking with the doctor and letting him know that you aren't completely comfortable with how he has been acting. That's a hard one.
I hope your husband gets relief. Has radiation or surgery been suggested to manage the lesion in his hip?
Nancy in Phila
As far as your doctor is concerned. If you have questions about his ability right now, consider going for a second opinion. You might also consider talking with the doctor and letting him know that you aren't completely comfortable with how he has been acting. That's a hard one.
I hope your husband gets relief. Has radiation or surgery been suggested to manage the lesion in his hip?
Nancy in Phila
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Fluid retention during Darzalex-dexamethasone treatment
Thanks for your reply, Nancy!
His blood work does not show any kidney problems. I believe they listen to his heart, etc., periodically during his biweekly infusion because of potential infusion reactions. My stethoscope has quit functioning for some reason, but his heart sounds fine with my ear to his chest. His bronchial tubes sound crackly and often wheezy.
He has a myeloma specialist at a university hospital managing his care from a distance and I am considering calling or emailing him. I do know that my husband is the first patient his doctor here has treated with Darzalex, so I'm not quite sure whether he is up to speed about it.
Yes, my husband had radiation on his hip/thigh in January. It did help the pain, which has since returned. I thought he should go back and see whether they could do it again, but I don't know whether more radiation would help or not. He seems to think the Darzalex will eventually make the pain go away, but I'm not sure it works that way.
When he got up this morning his legs and feet were so swollen I asked him to weigh himself. He had now gained 28 pounds overall, sixteen in the last month. His doctor is out of town, but his nurse said she'd leave a note for him.
His blood work does not show any kidney problems. I believe they listen to his heart, etc., periodically during his biweekly infusion because of potential infusion reactions. My stethoscope has quit functioning for some reason, but his heart sounds fine with my ear to his chest. His bronchial tubes sound crackly and often wheezy.
He has a myeloma specialist at a university hospital managing his care from a distance and I am considering calling or emailing him. I do know that my husband is the first patient his doctor here has treated with Darzalex, so I'm not quite sure whether he is up to speed about it.
Yes, my husband had radiation on his hip/thigh in January. It did help the pain, which has since returned. I thought he should go back and see whether they could do it again, but I don't know whether more radiation would help or not. He seems to think the Darzalex will eventually make the pain go away, but I'm not sure it works that way.
When he got up this morning his legs and feet were so swollen I asked him to weigh himself. He had now gained 28 pounds overall, sixteen in the last month. His doctor is out of town, but his nurse said she'd leave a note for him.
-
vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
Re: Fluid retention during Darzalex-dexamethasone treatment
Thought I'd update this!
After I called the nurse twice in a week, they gave him a second diuretic (metolazone). That worked so well that we could see the veins in his feet in about four days! As long as he takes it, he's fine! We still don't know why he's having the problem, but are glad it's resolved!
After I called the nurse twice in a week, they gave him a second diuretic (metolazone). That worked so well that we could see the veins in his feet in about four days! As long as he takes it, he's fine! We still don't know why he's having the problem, but are glad it's resolved!
-
vmeyer - Name: vmeyer
- Who do you know with myeloma?: my husband
- When were you/they diagnosed?: March 2016
- Age at diagnosis: 65
4 posts
• Page 1 of 1
Return to Treatments & Side Effects