And the Orange County Marathon in California last Sunday, my 95th since diagnosis, Whooee - still on track for 100 marathons this year.
This was also the third weekly Darzalex infusion at our local hospital. Arriving at the infusion center at 7:45 am, I left at 2:45 pm, total seven hours. That includes a blood draw for a CBC and metabolic panel, a visit with the doctor, the pre-medications (Tylenol, Benadryl, and prednisone), and finally the Darzalex itself.
No issues. In particular, I have never had any kind of infusion reaction from Darzalex. Apparently that makes me a lucky myelomiac, because the manufacturer's Dosage and Administration instructions suggest that about half of us may have a reaction, most of those occurring in the very first infusion. A reaction doesn't necessarily stop the infusion, but would slow it. A myelomiac may wish to discuss this with his/her doctor, as I am NOT a doctor, just a patient.
In three more weeks (and three more infusions) I'll make the trip to Mayo Clinic and get updated myeloma test results and an eagerly-anticipated visit with my doctor WG. Meanwhile, we hope that the spectacular 39% decrease we saw last week from the combination of Pomalyst, Darzalex, and DEX will be the prototype for these upcoming test results and other future results.
There is hope after diagnosis!
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Hi Don. I really enjoyed reading your blog. I am writing to in regards to my Father. He was diagnosed with smouldering multiple myeloma 4.5 years ago. He has been on Revlimid, Valcade, Kyprolis and now Pomalyst. His iGA numbers are around 2500 and do not seem to be dropping all that much lately. Our Doctor has suggested to put him on Darzalex (along with with Pomalyst) because of the incredible results that trails have shown. The reason I am writing is to ask if you think a 87 year old, who is in wonderful shape but has high blood pressure and anxiety issues, would be able to handle the initial infusion? I have read that the first treatment is administered in a hospital because of the side effects. My concern is the emotionally and physical impact that it will have on a 87 year old. He is currently feeling great and would hate to mess with it. Although this treatment I hear is remarkable. Thanks Don.
ReplyDeleteHi Vic,
ReplyDeleteYour questions are really ones for your father's doctor, I think. I'm 75 with no "comorbidities" (don't you love that word?) and I had no reaction to the initial infusion. Here is the blog post: https://myelomahope.blogspot.com/2016/04/pomalyst-and-darzalex.html
Even with no reaction, my first infusion took nine hours. It was done at an infusion center, not a hospital, but a hospital was nearby. I was happy that the infusion center nurses had prior experience in administering the initial infusion for other patients. According to the manufacturer's own prescribing information, about half of patients do experience some reaction, which of course would have made mine take longer.
High IgA, by itself, may not be enough to suggest a change in treatment. I assume that your father's doctor has a reason based on real CRAB symptoms, or a history of them, such as low kidney function or bone lesions. If you have questions about that doctor's judgment, I suggest getting a second opinion.
Don