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.     

February 28, 2017..  We got an early start to get the PET scan done this morning and arrived there 30 minutes early. When we got there, we found out the new PET scanner was down. They were using the old scanner but there was a back log of people waiting. We waited in another part of the building and finally got a call 2 hours later saying the scanner was back up running again. I was finally able to get that part of the tests done. Later in the afternoon, I got the final tests of two MRIs. That wrapped up the testing that I will need to have done on this trip. Tomorrow morning, I will get a treatment of Darzalex. I normally get this treatment at KHO in Kingsport but since the schedule for it fell during this trip, I need to get this one here. It will be interesting to see if there is a difference in how it is done here and how they do it in Kingsport. 
As most of you know, the Kyprolis, that I was on for two and a half years, stopped working and I had to go on another treatment. The new treatment is Darzalex. It was FDA approved in December, 2015. It appears to me the Darzalex is working. It does not work for all patients so I was concerned yet hopeful that it would work for me. It appears, at least to me, that is is working. I will know more when the doctor goes over things tomorrow afternoon after he looks over the test results.
There were tornadoes in areas around Little Rock late this afternoon but so far, there have been none close to us. I am very thankful for that. 
Darlene, Kathy and Kent, thank you for the comment you left. They are much apprecated. 

February 27, 2017..  I completed the bone marrow biopsy procedure today. It went really well. I just don't mind it at all now since I get it while sedated. It sure does make a big difference. I think back at how bad it was when I was having it done without being put to sleep. It was just awful. Cutting through the bone was not all that bad but when they pulled it all out was just about unbearable for me. Some people don't seem to feel that pain but I sure did. Now, I am just asleep and feel nothing. 
The bone marrow procedure was the only test I had today but tomorrow will be a big day with PET and two MRI's. The PET starts at 9am and the last MRI starts at 5:30pm.
Thank you Darlene and Kathy for the nice comments you made on the blog. I sure do appreciate you doing that. Darlene is the leader of our myeloma support in Johnson City and Kathy is half of the couple Kathy and Steve that we do things with like trail riding on the ATV and go camping with.
I understand there is bad weather forecast for home and there is for here also. I hope none of us have any bad weather.    

February 26, 2017..  I had one appointment today (Sunday). It was for a physical exam in preparation for the bone marrow procedure tomorrow and for them to take blood samples. They collected 11 tubes of blood.
I have an umbilical hernia that I have had for a long time but it has not bothered me until recently. The nurse practitioner that examined me today was concerned about it causing me a serious problem. After hearing her explain what could happen with it, I got concerned too. I will soon call a general surgeon's office in Kingsport and see what I can do about getting scheduled to get it repaired.
Tomorrow, I have the sedated bone marrow procedure. We have to be there at 7:30am.

We Return to Little Rock on February 25, 2017

November 24, 25, 2017.. We left home on February 24th at 8:50am and headed for Little Rock. Our plan was to stop, take a break and spend some time with my brother in Memphis. We had an uneventful drive to Memphis and spent the night at my brothers house and left to complete the remainder of our trip at 12:45pm today. We are in an apartment at Fifth Avenue Lofts. We have stayed in apartments that are on the ground floor before but this time, we are on the fourth floor. It was harder getting everything unloaded from the car and into the apartment but we actually like this apartment better than the ones we have had in the past. We will enjoy our stay here. Tomorrow, I  have an apointment at UAMS/MIRT at 2:30pm.   

December 4, 2016.. We left Little Rock on Friday, December 2 at 10:50 am (CST) and arrived home at 11:30 (EST). We had an uneventful drive back home but had a couple of traffic delays along the way. The delays were not for a long duration. Hopefully I can start the new treatment this coming week. 

December 1, 2016.. We were at MIRT this afternoon for about 4 hours. Just about everyone was gone by the time we got out. I was correct in my thinking that my condition has changed a lot in a short time. Due to that, my treatment will also change completely. I will be going on a new antibody drug called Darzalex along with Pomalyst and Dexamethason. I have two myeloma friends back home that are on Darzalex and they are doing very well on it. Both are in remission now. I have never been in remission. I hope it works as well for me too. 
The PET and MRI scans showed two small new lesions. The old lesions were gone because of the Kyprolis when it was working. I go on Darzalex next week (hopefully). It is much more complicated getting it than it was Kyprolis. The first treatment is a pretty big deal since some people have reactions to it. It takes 8 hours for the first treatment as they start and stop the treatment to make sure all is ok. From the first treatment, I get them once a week for 8 weeks then I have to return to MIRT for a round of testing to see if it is working. If is working, I continue on but go for treatment every other week. I eventually work up to going just once a month for the infusion of Darzalex. I am so hopeful that it will work for me. It does not work for everybody, about 61% is what I have read. 
On our trip out west recently, I was squatted down and photographing a cactus, and lost my balance and fell backwards. I had really bad pain for a couple of days and thought I was going to have to immediately return home. It felt better after a couple of days but I feared I had broken a rib. The scans I had here did show that I had a broken rib in my upper rib cage.
That about sums up what I have learned today. I am going to cut this shorter than it could be in order to get it sent out earlier. Thank you so much for caring enough to follow this blog and thank you for your support. Thank you for your continued prayers. We appreciate it more than I can say.