[Dawn w]

Daratumumab monotherapy - what to expect?

by Dawn w on Sun Nov 29, 2015 2:55 pm

Hi all,

I've had kappa light chain multiple myeloma for 9 years. Had 2 stem cell transplants and all drugs available in the UK.

Recently I was given 2 cycles of bendamustine (Treanda), where I received a dramatic response, bringing my free light chain (FLC) down from 9,000 to 2800 approx. I couldn't believe I had such a response.

Unfortunately, after years of different treatments, my bone marrow has been really damaged and the bendamustine was continuing to damage my bone marrow. So my consultant was concerned about giving me further doses.

However, I was really really lucky that my consultant was able to get me access to daratumumab (Darzalex) as a monotherapy.

At the start of treatment, my FLC were around 2800 and remained stable, until half way through cycle 2 of mono daratumumab therapy my free light chains went up to 3,000.

There are concerns now that the drug may not be holding the multiple myeloma anymore. I've just finished cycle 2 but don't have any results yet.

And I may need to stop this treatment and go back to bendamustine, but on a lower dose.

Which is so disappointing as I was hoping the new drug would give me at least a few more months and a bit of a respite from the more toxic drug bendamustine.

So I'm really interested to find out what to expect with this treatment regimen, particularly given how heavily pretreated I am.

Any feedback would be really appreciated,
Dawn

[Cheryl G]

Re: Daratumumab monotherapy - what to expect?

by Cheryl G on Sun Nov 29, 2015 6:10 pm

Hi Dawn,

Welcome to the forum. You have been through quite a journey so far. Congratulations on making it this far; I hope your journey continues for many more years.

There was a posting recently by someone who has been on daratumumab (with dexamethasone) and has had a lot of success. You will probably find his posting both informative and somewhat amusing:

https://myelomabeacon.org/forum/daratumumab-is-working-for-me-t6340.html

There are other discussions here in the forum about daratumumab that also may be helpful to you; you can find them here:

https://myelomabeacon.org/forum/search.php?keywords=daratumumab&terms=all&author=&sc=1&sf=titleonly&sr=topics&sk=t&sd=d&st=0&ch=300&t=0&submit=Search

The Beacon also has a number of news articles about the drug; you can find them at this link:

https://myelomabeacon.org/tag/daratumumab/

Best wishes to you,
Cheryl

[KMZ]

Re: Daratumumab monotherapy - what to expect?

by KMZ on Wed Dec 16, 2015 2:27 am

Does anybody have an idea about the cost of the drug? Can it be administered at home? Or it needs a medical center?

[BeatMyeloma]

Re: Daratumumab monotherapy - what to expect?

by BeatMyeloma on Thu Dec 17, 2015 2:46 pm

Hi Dawn,

Would your doctor consider adding dex to the daratumumab? Or maybe another drug to make it a triplet?

[DexMed]

Re: Daratumumab monotherapy - what to expect?

by DexMed on Fri Mar 24, 2017 9:08 am

I have been only on Velcade maintenance (no stem cell transplant) for 2 years after induction therapy with cyclophosphamide, Velcade, and dexamethason (CyBorD) induction and harvesting. My oncologist is considering Darzalex as single agent once I relapse. The reason being: Multiple agents cause more cumulative toxicity (side effects).

So I'd also be interested in what to expect with Darzalex single agent treatment. What will the side effects be like? What about Infusion reactions?