March 1, 2017..  I am sorry I am so late posting tonight. We just now got home from UAMS and it is 10:20pm CDT. The doctor, nurse practitioner and an RN were there with us to make sure we understood the new diagnosis and what we need to do in the future. We were there over 12 hours today. We did have to make a stop by a CVS and that took about 30 minutes.

I don't know where to start but I will try to explain things the best I can. The news I got from the doctor today was not as good as I expected. The Darzalex was working with only mixed results. It was producing much better myeloma marker results (the tests for myeloma done from blood samples) but was allowing the myeloma to grow and do damage in the bones. In July 2016, I had no bone lesions and in late November 2016, I had two. This time I had five. These were visible on the PET scans and on the MRIs. Most of these were in my neck area with one in my ribs. 

One of the nurse practitioners told me Sunday to tell Dr. Van Rhee about the umbilical hernia I have. He examined it and fears that it might be myeloma instead of just a hernia. He was looking at it on the MRI and PET scans and could see nothing coming through the abdomen wall as it would on a hernia. We were planning to leave to come home tomorrow but we have an appointment for a biopsy from the navel to check to see if it is just a hernia. They will do that without the benefit of me being sedated. I do dread that. Tonight I even had two resident surgeons that were checking the hernia. 

Another bit of news that I didn't know but it was determined when I was here in November that I have gone from being low risk to high risk myeloma. This was determined by doing a gene array in November from my bone marrow biopsy. This test is not done very often. I guess the reason it was not mentioned in November was due to my doctor being gone to the ASH conference and I saw his replacement. 

I will stop the Darzalex/Pomalyst/Dexamethasone treatment and go on Cytoxan/Pomalyst/Dexamethasone. I will get the Cytoxan by IV every two weeks. 

This was not a day for good news, but there is always some good news hidden within even bad news. Thank you everyone for your continued prayers.