Darzalex

[Camion]

Is anyone on Darzalex. New immune therapy drug to kill cancer cells. I have multiple myeloma and I'm on it. Just wanted to know how anyone else is coping with it.

[reviewer4]

I have been on this chemo for 6 weeks. I have had no infusion reactions but the first month I had very little energy except to eat and then rest again. I have had several blood transfusions and platelets to help and now the chemo seems to be starting to do its work as my blood results are showing much better numbers with no need for transfusions in the last 2 weeks. I have lost weight but am hungry and eating. I usually don't have trouble sleeping. How are you doing?

[Camion in reply to reviewer4]

Thank you for answering. I too have been on this for about 6 weeks but I've had a lot of side effects. Upper respiratory infection, shortness of breath is the big problem and some trouble sleeping. Only one transfusion so far. Blood work looks pretty good the tiredness and anxiety attacks are hard to deal with. It's like you have some energy for about a half an hour I'm going to take a nosedive. There are only two other people in my whole area that are on this I just wanted to reach out talk to someone else who was on it.

[reviewer4 in reply to Camion]

Have you had other chemo regimens before now? If so, what, and how did you do with it?

I don't know anyone else who is on daratumumab/lenilidomide/dexamethasone.

[Camion in reply to reviewer4]

The other chemo cocktails that I have had in the past did not bother me as much as a darzalex does. I just hope this is all worth it and it works.

[Camion in reply to Camion]

Yes I have have had 2 others before this. Was in partial remission and came back out. I am on the darzalex, pomalidomide and dexamethasone.i don't have any energy. And the oncologist said the side effects should diminish. They all pretty much have except the tiredness and shortness of breath. I have had multiple myeloma for 3 years.

[GregM]

I’ve been on it for 8 weeks. I’m tired the day of the infusion and a runny nose sometimes. The cocktail I’m on is Darzalex and Dex. So I have a couple of days of energy and then I crash. Darzalex cut my Light Chains numbers by 80% in one treatment.

I’m in my 8th year of fighting this disease so I’ve had just about all standards of care treatment. For me this by far has been the most effective.

[Camion in reply to GregM]

Greg, I've been on darzalex, dexamethasone, pomalidomide pill. I've been on this for about 7 weeks and had multiple myeloma for three years. Try to other cocktails went into partial remission and came back out and they put me on this. I have had my lungs checked my heart everything everything is good. But this combination is kicking my butt. I have no energy. I can't do anything but stay in the house and sit on the couch. The shortness of breath I can't take much more. I'm about ready to tell them I'm done! I've only had 2 blood transfusions but the blood work looks good now but I still feel like crap. I'm just wondering if another 4 weeks of a weekly dose is going to be worth it. Thank you for replying.

[Hidden]

Camion,

I have been on Darzalex/Pom/Dex for 32 weeks. I started it in February 2018. (8 weekly infusions, 8 bi-weekly and now have received 2 monthly infusions so far.) It is keeping my Kappa Light Chain myeloma under control. The side effects of fatigue, and shortness have breathe have been the biggest issues for me. My Dr. reduced the Pomalyst dose from 4mg to 3 mg, and that did help with the fatigue.

I hope the best of luck for you!!

[Camion]

Thank you for the info. You are the first I have heard from that has gone that far! I just finished the 8 week and starting on the by weekly next week. They reduced my pomalist to 2mg. I hope that's enough. The tiredness is the kicker. If they keep the blood transfusions up the shortness of breath isn't as bad. Iv had to learn to take deeper breaths when I breath and that really helps. I'm glad it is working for you! I hope I get as good as those results. I just needed to hear from someone that's been on it awhile to see what's down the road. Thank you so much and GOOD LUCK