Reblog: Open letter from a person with chronic pain

I don’t talk a lot about the side effucks and issues that I carry every day. It’s not that I don’t think about it, all day, every day. As I type this, I’m sitting in the waiting room at a local imaging center ready to get my quarterly PET scan to see if my medication … Continue reading Reblog: Open letter from a person with chronic pain

Experimentation Update, June 2020

As some of you are aware, I embarked upon an oncologist directed experiment of one (1) person (me) about three (3) months ago when we added Kisquali (a/k/a ribociclib, a CDK4/6 inhibitor) to targeted therapy, Piqray (a/k/a Alpelisib), along with Faslodex (a/k/a Fulvestrant) and a rather lengthy list of medications to address side effects and … Continue reading Experimentation Update, June 2020

Medical Update, ONJ

About three weeks ago, I started to feel pain in the lower left quadrant of my mouth, tooth #18 to be exact. I’m one of those weird people with more alkaline than acidic salvia and at age 41, I’ve still never had a cavity. (knock on wood). Braces, yes, twice, and I struggle with tarter … Continue reading Medical Update, ONJ

Experimentation Update

I’ve now been on the experimental combination of Piqray (alpelisib) and Kisquali (ribociclib) for an entire 28 day cycle and a handful of days. I missed some doses in the first cycle of Kisquali when I was hospitalized and in my efforts to figure out the best time to take both. No PET yet to … Continue reading Experimentation Update

Medical Treatment during a Pandemic, Part II

My first post, Part I, was all about my admission to the hospital after I’d been tested for COVID-19 and how weird it was. Medical treatment during a pandemic is not fun at all. Impersonal medical facilities are even more so when everyone you encounter is scared of catching something from you, the patient. Plus, … Continue reading Medical Treatment during a Pandemic, Part II

Metabolic activity

As far as I understand it, increased metabolic activity creates higher SUV value on a PET scan. In more understandable terms, the places where there is more activity shows up brighter on the PET scan. Brighter images on the PET scan means the cancer has “woken up” or is starting to wake up; that the … Continue reading Metabolic activity

Medical Update, 2nd of 2020, part II

After I wrote such a long post on Monday, I realized that there were some rather humorous things that happened while I was in the hospital. Yes, even amongst the pain and misery and general yuckiness that happens when they wake you up every few hours to make sure your vitals are still in normal … Continue reading Medical Update, 2nd of 2020, part II

Medical update, 2nd of 2020, medical mysteries

I had not planned to post yet another medical update, nor do I really like having information to share that constitutes a medical update; however, such is the existence of those of us living with Metastatic Breast Cancer (MBC). So, here I am. Last week, as Elliot and I were preparing to head to Orlando … Continue reading Medical update, 2nd of 2020, medical mysteries

Medical Update, first of 2020

It's 2020 and I'm still marveling that the 90s were so long ago! 2019 ended on a not so great note medically as I've been dealing with increasing right leg pain for the last few months. I did not repeat the mistakes I made when I was initially diagnosed and definitely reported my pain, frequently … Continue reading Medical Update, first of 2020

Reflecting on 3 Cycles of Piqray

We're halfway through November, 2019, and I just picked up my fourth cycle of Piqray from the specialty pharmacy at my cancer center yesterday.  I also found out yesterday that my first PET scan since starting Piqray demonstrated that my cancer has had a partial response to the medication over the past three months. While … Continue reading Reflecting on 3 Cycles of Piqray