Monday, December 17, 2018

Living "Month to Month"

I am coming up on my monthly trip back to the NIH. It is a biggie with all the extra testing done every 6 months (i.e., bone marrow biopsy, 2 CT scans, MRI, etc.); Merry Christmas to me!

I feel like every month I think, okay, next month things will have evened out and I'll be feeling consistently good, or more like myself. I am lucky that I have good days to counter balance the bad ones but am ready to have a longer string of good days. I need an end point and feel like right now I keep thinking next month will be when I get to a "going state". I have not reached that point and feel like I am living month to month getting through the changes for that month and we readjust the medication levels when I am back at the NIH.

I've been on a long slow taper off dexamethasone. I am finally down to my physiological level and my adrenal glands have turned back on (yeah). They are not back to normal yet and some days I feel like I can feel them trying to figure out what they should be doing and over adjusting one way or the other.

In January, when I am back at the NIH I'll have another cortisol stim test to check and see if they are working enough we can go down further on the steroids. I'd really like to get off them because the longer I am on them the more I learn about the negatives of long term use.  I'm on calcium supplements because the steroids apparently leech calcium from your bones. My calcium counts in my blood work have been totally normal, but the endocrinologists have informed me that is because it is getting pulled out of my bones.

Calcium supplements were probably in my future as an aging woman anyway but it adds another medication at another time of the day. My medication schedule feels like my part time job to remember to take everything on time with, or without, food and with other meds (e.g., calcium needs to go with Vitamin D and the levothyroxine has to be taken first thing in the morning on an empty stomach without any other medication, and on it goes).

As I've come down on the dex, some of the study med side effects have started to pop back up and I tend to wake up with swollen eyes, feet and hands. I've had more strange rashes to trouble shoot but no fevers yet.

The good news is the study meds are working against the leukemia and despite the fact we have cut the dosage of one of them in half because of the side effects my blood work does not indicate the cancer is growing. The bone marrow biopsy will be the big telltale.

The other crazy thing about long term steroid use is that they suppress your immune system and distort blood lab results. When I asked my oncologist for an example he said that you could have TB and test negative because of the steroids. So I am taking my good lab results with a grain of salt since they could be an illusion created by the dexamethasone!!

I've been researching what is next and am intrigued by a doctor in the LA area that does something called functional profiling. They take your live cancer cells and then test the approved cancer treatment drugs on them to identify which is most effective and the least toxic. This seems so intuitive to try the drugs on the cancer cells before having a person take them and go through the trial and error. I have no clue how much it costs but hoping this concept gets more developed.

I also think the whole area of immunotherapy and using a person's own immune system to help attack cancer makes a lot of sense. I have this feel that a hundred years from now people are going to look back on chemo as barbaric and they are not going to believe for so many years that we poisoned people to get rid of the cancer.

I wish I could say only one more month and I'll be done with treatment, or that I'm feeling great and no issues with these medications. Reality is I am taking each month (or week, or day) at a time and hopefully will hit that point before too long!