Hi
I am new to the forum although have looked around the site many times.
My husband was diagnosed with Myeloma in June 2016. He was treated with Velcade (once a week) Cyclophosphamide and Dexamethasone and responded really well, no side effects at all to speak of. He was then very lucky to have had a successful stem celll transplant the following March. Again though very poorly he came through it with no complications and enjoyed 28 months of an almost normal life, if that is possible with such an illness hanging over you.
He relapsed in July this year and has subsequently been treated with Daratumumab, Velcade ( twice weekly) and Dexamethasone. We had just about finished the third cycle, and the only side effect he had had until 3 weeks ago was slight peripheral neuropathy and sleepless nights. Good news again, the Myeloma has apparently gone.
He was about to go on the 2 weekly cycle of daratumumab, and once weekly velcade, however the treatment has now had to be suspended (2 weeks ago) because of the side effects it is having on him. Though they are going to take his stem cells shortly.
The side effects include dramatic shortness of breath after the slightest activity, dizziness and extreme fatigue. He has had a chest X-ray, a ct scan an ECG and there is nothing to show any concern. They suspended treatment to give his body a rest so that he could recover, but he says if anything it seems to be getting worse, so today he has seen the consultant again and he is still on suspension!
We had hoped he could stay on this treatment until it was no longer effective, and then have another stem cell treatment but I'm unsure now if that will happen.
Has anyone else out there had similar experiences with daratumumab?
