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Discussion about multiple myeloma treatments, stem cell transplants, clinical trials, alternative medicines, supplements, and their benefits and side effects.

Delayed side effects from Darzalex treatment?

by vmeyer on Fri Aug 16, 2019 4:38 pm

My husband has been on single-agent Darzalex for 2.5 years. He has never been in remission, but his M-spike has been under 1.0 g/dL (10 g/L) the whole time. It has been creeping up to that point lately, though.

For the last month he has noticed increasing muscle and joint pain, pretty severe fatigue, memory problems, and some sleep issues (which we thought were conquered now). He also exhibits some shortness of breath, which is new. After his last infusion, he had diarrhea for about a day, which is also new. His blood work is largely okay except for hypogammaglobulinemia, which is not new.

I suggested a thyroid test, he had it done. The results were low normal, not out of range, though. The nurse at his oncologist's office said the memory thing was probably chemo brain. I didn't think immunotherapies like Darzalex could give you that, but of course I have been wrong before. ;) She said the other things were recognized side effects of Darzalex and that, yes, he could be reacting after 2.5 years of no reaction. It's true that they are, but they all could be symptoms of something else, as well.

We're left with the choice of continuing, though my husband dislikes the way he feels, stopping and trying the next thing, possibly taking a break?, checking other body systems to see whether some­thing new is causing this. Our cancer doctor is not usually a real help with stuff like this, to be honest.

Is it common for Darzalex-related side effects to occur with such a delay after starting treatment with the drug? How concerned should we be about the side effects occurring at this point?

vmeyer
Name: vmeyer
Who do you know with myeloma?: my husband
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Delayed side effects from Darzalex treatment?

by Arizonan on Sat Aug 17, 2019 7:04 pm

I didn’t have any of these side effects, but I didn’t take Darzalex (daratumumab) for as long as your husband.

I assume your husband is getting infusions once per month. If so, how long do the side effects last after the infusion? Does he feel better the rest of the month?

David

Arizonan
Name: Arizonan
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2010
Age at diagnosis: 54

Re: Delayed side effects from Darzalex treatment?

by vmeyer on Sun Aug 18, 2019 7:34 pm

His treatments are monthly. The symptoms seem to be gradually worsening, or at least have been worse this month than last. Nothing but the diarrhea coincides with treatments.

vmeyer
Name: vmeyer
Who do you know with myeloma?: my husband
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Delayed side effects from Darzalex treatment?

by Nancy Shamanna on Mon Aug 19, 2019 8:55 am

Has your husband had a check up with his family physician to see if any of these side effects could be due to other factors? For example, diarrhea can be caused by a change in gut flora, or aches and pains could be due to other problems, such as arthritis. Shortness of breath could also be due to other factors. It probably wouldn't hurt to check these out independently of the oncologist's office. Where I live, the results of tests are shared between doctors electronically, so any findings would be sent to the oncologist also for review. Hope that helps, and good luck!

Nancy Shamanna
Name: Nancy Shamanna
Who do you know with myeloma?: Self and others too
When were you/they diagnosed?: July 2009

Re: Delayed side effects from Darzalex treatment?

by Arizonan on Mon Aug 19, 2019 5:12 pm

Hello vmeyer,

It is tough decision, even for the doctor. You and your husband are in the best position to decide.

If it was me, I would stop the Darzalex for a while, see if I feel better, and, if so, switch to something else. Your husband can always go back to Darzalex at some later date.

Good luck,

David

Arizonan
Name: Arizonan
Who do you know with myeloma?: Self
When were you/they diagnosed?: April 2010
Age at diagnosis: 54

Re: Delayed side effects from Darzalex treatment?

by vmeyer on Mon Aug 19, 2019 9:08 pm

David, that's a good reminder. He could always restart the Darzalex if it wasn't the problem.

Nancy, that's exactly what his sister, a retired doctor, suggested, that he talk with a primary care physician about these problems. She also suggested he see a pulmonologist because almost all his symptoms can be traced to poor pulmonary function, everything but the GI stuff, which was only for a day and is the only thing we're pretty sure was a reaction to medication, since it occurred right after the treatment. We're pursuing appointments this week. He had an orthopedist one today, previously scheduled, and everything checks out there.

vmeyer
Name: vmeyer
Who do you know with myeloma?: my husband
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Delayed side effects from Darzalex treatment?

by vmeyer on Thu Aug 29, 2019 9:00 pm

His doctor is allowing him to take a treatment holiday to see if the situation resolves.

vmeyer
Name: vmeyer
Who do you know with myeloma?: my husband
When were you/they diagnosed?: March 2016
Age at diagnosis: 65

Re: Delayed side effects from Darzalex treatment?

by philget on Fri Aug 30, 2019 8:45 am

I believe the CD38 receptors that Darzalex attaches to on myeloma cells are also found in the lungs, unfortunately. A Darzalex break could be just the thing. Maybe he could go back on it later for another 2.5 years.

philget
Name: Larry Phillipps
Who do you know with myeloma?: I was diagnosed with SMM
When were you/they diagnosed?: 4/19/2019
Age at diagnosis: 72


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