- My Creatinine today was 3.6 and my BUN was 26. This is promising (about getting off dialysis) although not a slam dunk. Time will tell and more labs will need to be done in one week. Don’t be confused, no, I’m not off dialysis, but on a reduced schedule and no, it is not being stopped . . . yet. Keep praying!
- I’m in round three of chemotherapy. This week, things have been rough and, based on how I felt, put me back to almost the worst I have ever felt with this disease. I think the reason was getting 3 vaccines, doing my typical 3-drug chemo, and then adding a new, bone-building, infusion. All of the above list “flu-like syndrome” as one of their top side effects.
- The next big event is getting my labs a week from today, which may be the final word on if I can get off dialysis or not at this time. On that same day (4/18/19) I will get my next labs to tell me how the cancer is responding to treatment. Those results will not be back until about 4/21/19.
I completed my first week of “Dialysis Lite,” which is my term for reducing the time on the machine from 4 hours down to 3 hours and from 2 days down to two. So, I went down—by steps—from 12 hours per week to 6, so by half. As listed above, my creatinine today was 3.6 and my BUN was 26. As a reference, when I was diagnosed, my creatinine was 15.5 and my BUN was 125. Normal for creatinine is .6 – 1.2 mg / dl (meaning milligrams in 10 ml). Normal BUN is 7 – 20 mg/dl. Reminder, these are the two toxins related to protein waste, that my own kidneys have not been filtering well.
Today, I got my first labs since started this new program. My last labs were on 3/4/19 (last Monday). It was done after a week of three days of dialysis at 3.5 hours (the step-down from 4 hours). My creatinine at that time was 3.9 and the BUN was 33. So, the good, or maybe great news is that toxins were lower after less dialysis, which tells us that my kidneys are trying to function. It would have been nice if the levels were normal, as that may come.
The stretch from Thursday to Saturday was some of my roughest days so far. It was discouraging to be two months into this disease and to feel so much worse at this point. But you have to remember that the purpose of chemotherapy is to suppress the disease and save my life, not make me feel better. The only thing I have to “make me feel better” is a little plain Tylenol. But I think I felt so badly this past week end was because, 1) I had two hepatitis vaccines and one pneumonia vaccine (dialysis center protocol) and each of those were making me feel bad, 2) I had my routine chemo, 3 drugs on Monday and 1 on Thursday, and they always cause a flu-like syndrome. Then, on Thursday, I had a 4-hour infusion of a bone-hardening drug, which can cause a flu-like syndrome. It is a precaution as MM often dissolves the bones, causing “pathological” fractures.
I felt so bad on Thursday night that I started to think it wasn’t worth it. Friday was a little better and I was able to get up and to use a Bobcat, which I had rented to fix our muddy driveway. On Saturday morning I did dialysis and I was thinking, maybe I was feeling so bad because I was doing “Dialysis-lite.” Therefore, I would be feeling much better after. I did not, but felt much worse after dialysis and it continued for most of the day. Finally, by Sunday afternoon, I was able to go outside (and it was a glorious day).
This morning I worked a ½ day. I was concerned if I could, after this bad weekend. But it was a lite schedule and it went well. This afternoon I continued my next round of chemo.
I will do dialysis lite again tomorrow, work Wednesday morning, chemo on Thursday and then dialysis lite on Saturday. Labs will be drawn next Monday to check on my kidney function and the response of my cancer to chemo. I will update then or sooner if there is anything new.
Keep praying for my kidneys to heal. As I’ve said, it is not just the inconvenience of doing dialysis, but it puts me at greater risk (I was sitting in chemo with a lady with exactly what I have. She is a retired nurse. She chuckled and looked at me and said, “You know that multiple myeloma isn’t going to kill us, our renal failure is.”). Having to do dialysis may disqualify me from getting a stem-cell transplant, which would greatly impair my chances of survival. So this is important, please keep praying.
Denise is doing well, but not great. You can’t imagine the toil on her. We are having a garden-building party on the next two Saturdays. I am hoping that this will therapeutic for her. It is hard to describe how much my disease has impacted her and she needs your prayers as much as me.
Forgive any typos as it is getting late and I need to prepare dinner and I did not proof-read. Mike