New Year, New Baseline.

Time for a quick update on Chelsa's battle with Multiple Myeloma. It's been a long day. First thing this morning Chelsa had a bone marrow biopsy... a fairly quick procedure, done under conscious sedation... meaning she's awake but pretty out of it. I felt really good about her doctor as he let me sit in the room with her while he performed the biopsy... and let me just say... he is a badass. Never had a bone marrow biopsy? Imagine a wine corkscrew with a little straw in the middle of it that you can suction the wine out with... only instead of a cork, it's your butt/hip, and instead of wine, it's bone marrow. I thought I was fine until the doctor was pouring the marrow on the slides and spilled it on his hands... thankfully I was sitting down. 

The reason for the biopsy was information gathering. We need to make some decisions about the next steps in Chelsa's treatment. She has been receiving chemo therapy treatments of Elotuzameb, but it is meant to be given with another drug in order to be effective, so currently only seems to be keeping the disease from progressing, but not reducing her cancer count... which we need to do in order for her to be eligible for any CAR-T Cell clinical trials that may open up. (We are currently on lists at Seattle Cancer Care / Fred Hutch in Seattle, Stanford in CA, and Sloan-Kettering in NYC).

The problem is that Chelsa has several (allergic?) reactions to most of the chemo drugs that we have tried. See all of our past posts about going the ER / ICU... poor girl has been there so many times, (6-8?) that it's becoming normal... terrifying every time though. We are afraid to try any other chemo drugs as barely a smell of them spikes Chelsa's fever to 106 degrees. We need to do something, however, and are trying to decide whether to return to trying a drug that she's done in the past, whether to try a much smaller dose of a drug she has had a reaction to (though our doc says that sometimes the dose strength doesn't matter much if it's an allergic reaction), or whether to do the "nuclear option" which is a three-drug combination (including melphaline, an agent orange ingredient which she did during the stem cell transplant and caused her a lot of suffering and hair-loss)... that's the standard protocol for others in her situation and what the docs thinks we should probably do... it would require her to be in the hospital and is a pretty scary option.

The biopsy results will help us better understand the DNA / genetic chromosomal changes of her specific case of Multiple Myeloma. This disease is a genetic mutation and recent research has resulted in defining a new word: the "suclonality" concept --a prevalence of wide heterogeneity at the molecular level-- which is a lot of doctor-talk to say that the disease is diverse in character and very hard to standardize treatment for. The good thing about that is the growing realization that we need a more targeted individualized treatment for this disease.

For most DNA alterations, there are not enough data to guide treatment decisions. An exception is t(4;14). This is one of a type of chromosomal abnormalities called translocation in which a chromosome breaks and a portion of it reattaches to a different chromosome. Studies have shown that patients with t(4;14) have better outcomes when treated with a proteasome inhibitor, such as Velcade.

We most likely will try Velcade again as it's a drug that Chelsa had some success with between 2012-2015. It put her in the ER in 2015, so we are hoping that will not happen again.

Some really good news is that in this quest to get a new baseline, Chelsa did a full body MRI last week to look for any bone lesions or tumors--and there are NONE!! That is pretty incredible, as she's been fighting this disease for 7 years now. We are beyond thankful for the scan results.

Chelsa is also still pursuing treatments with a Naturopathic doctor... much of which still needs a lot of research support, but has shown promising results... this includes Mistletoe Injections (we get these from Canada and I give them to her via a small needle about 2x week); PolyMVA + DCA (plus a ton of supplements) which has resulted in some severe reactions, most recently in the form of severe breakout and swelling on her face; and lastly a few basics -- B12 butt shots and a modified ketogenic diet, which we have not been strict about, but has at least lead to some reduced carbs and a bit less sugar.

While this has all continued to be pretty hard, we have still been finding lots of ways to have fun. We recently had an AMAZING 5-course dinner at Marine Hardware and tried a "Puzzle Room" in celebration of Chelsa's birthday. We had a wonderful Christmas, with Matt's mom visiting, hosted our family Christmas party and celebrated our 7 year wedding anniversary. 

Thanks for being in our lives. We couldn't do this without the love, support & prayers of our friends and family.