Tag: Targeted therapies for lung cancer

Chances Are

Photo by Anna Shvets on Pexels.com

February 6, 2024

Have you ever had that feeling when you just know that something good or bad is about to happen? That intuitive hunch of someone or something whispering in your ear….”hold on, it’s going to get bumpy” or “hold on, it’s about to get exciting.”     I’d venture to say that we’ve all had these intuitive hits at one time or another. It’s a reality of the human experience.

I’ve had a couple of experiences like this in my life, a premonition where I just knew the outcome of an event that was just about to happen. The first time that I can remember this feeling was when I was quite young. There was a carnival hosted by our town’s Lions Club and my siblings and I were each given a couple of dollar’s worth of tickets that we could spend on whatever games of chance the carnival had to offer. Knowing how much a dollar meant, I walked the floor searching for where to place my bets, tickets clutched tightly in my hand. I felt drawn to the roulette wheel and stood to watch how this game of luck and chance was played. Feeling like I understood the rules, I traded two of my tickets for a red paddle with a white number painted on both sides. I wish I could remember the number on that paddle but the surety escapes me. After the roulette wheel was spun, I had the experience of standing outside of myself. I watched as the roulette wheel spun around and around and I just knew that it would stop on my number. I felt knowing in a place that was calm, confident and very sure, as if it had already happened. This place had no time or space or age and yet if felt very much like me. 

The wheel landed on my paddle number and I had a choice of prizes. I picked a large beautiful plastic appaloosa horse. He (I knew it was a he) was prancing and majestic and I loved this horse for years, even though at some point his front leg broke and his shiny coating became scratched and faded. The adventures we would go on in my mind were wondrous and he became more than a toy, he was my friend who accompanied me on imaginary rides through far off lands, my friendly reminder that there is a place where knowingness resides and chance deems you worthy of taking a chance. My friend was eventually replaced by vinyl records, hair brushes, bobby pins and a diary, relegated to the toy box for future grandkids to enjoy. Eventually, I heard that he was discarded, his broken leg deemed a potential safety hazard.

The second time I remember this kind of experience happening I was again at a Lion’s Club event while visiting my parents as an adult and I won a chocolate cake. This time it was like “Hey! Remember me?” Again, I just knew my number would be called. Chance had once again appeared in my life and I was reacquainted with that profound sense of knowingness. I need to add that there have been other experiences mainly related to others or in conjunction with others. I think that most of us have had those moments when we thought about someone and then they called or we knew who was on the phone before we answered (obviously pre caller ID because we’re talking synchronicities here). When it came to my twenty-six years as a massage therapist and healer, I could often pick up on the energies surrounding someone else but these experiences were different, very different. They didn’t have the ‘this is for YOU, Peggy’ message engraved on a bright orange sticky note calmly existing in a space of serene certainty.

I’ve shared before that when I received my cancer diagnosis it felt like a cosmic sledgehammer had just sucker punched me from out of left field without any heads up. My knowingness seemed to have failed me, leaving me in the dark without an emotional roadmap. I truly believed that something as serious as stage four cancer could never sneak up on me. I had been doing my work of healing the deep dark places inside for many years and believed that I had an affinity for knowing the unknown. 

Without a road map and emotionally devastated, I had to rely on the people chance placed in my path. I began learning how to trust someone else’s knowingness which freed me up to begin looking at deeply buried fears and committing to living life (no matter how much I had left) on my terms. It can be terrifying when uncovering those fears. The worst part is just before the dirt comes off, right before light illuminates the totality of what’s been buried. I find it amazing that the fear of what has been buried is often much worse than the reality. I began by looking death in the face and asking ‘who are you and why am I afraid of you?’ For that matter, ‘who am I?’ My motto has been ‘I don’t want to leave before I’ve completed what I came here to complete.’ My prayer and what I know will happen is that I will know when that time has come… it’s just not today and probably not tomorrow or the next day because after twenty-eight days on treatment line number eight, we know that it’s working. 

Last week I had another brain MRI for radiation treatment planning. I also had the mold for my thermoplastic radiation mask done along with the CT simulation scan for SRS (stereotactic radiation surgery) which was to take place in 10-14 days. The trifecta was a follow-up Chest/Abdomen/Pelvis CT scan. The next day a call came in from one of the radiation oncology docs and within that split second before I answered my phone my old friend knowingness made a reappearance: “I’m baaack!” I knew Dr. Nasr would be sharing that after reviewing my scans, the consensus of my oncology team was to wait on SRS as the new treatment was working extremely well on the brain metastasis and the stable areas in my body remained stable to a bit better. 

Hello my old friend…and welcome.

I had an appointment with Dr. Patil this morning and the smile on his face was priceless when he walked into the room. He’s not only a gem of a human being, he’s brilliant and compassionate and a maverick in his chosen field. What I recognize in him that resonates with me is his willingness and ability to act using the knowledge he has and the inspiration he receives … and his being a musician which is the icing on the cake in my book. He was the one who suggested that taking a chance on Mobocertinib was worth pursuing once Enhertu failed. Mobo worked  for nineteen months, a good run when it comes to advanced lung cancer. He also was the one to suggest that Tagrisso might be worth a shot and made the necessary calls. Both times he looked at me and said, “I don’t know if this will work but there’s a chance that you could get a good response.” Then he waited to hear my decision for I get final say. Trust is imperative in a doctor patient relationship and he’s well aware of what I’ve experienced the past seven years and seven months. There is also honesty on both our parts as well as respect for the knowns and unknowns of this disease. I asked to see the MRI and CT images and the differences after twenty-eight days was nothing short of incredible. We will scan again in three months.

Knowingness takes many roads as it makes its way to our conscious awareness. Taking chances requires a change in course, red pill-blue pill,  choosing which road less traveled we will take into the unknown. Choices walk hand in hand with chances. As I shared, I truly believe that I will know when it’s my time. It might be within a split second or it might be, ‘I’m not doing this anymore. I’m ready for the next adventure.’ 

For an adventure it will surely be. I know this.

A Thing About Updates

May, 8, 2023

It’s a funny thing about updates. Writing was easier when I was getting treatment infusions every three weeks. To pass the down time and fill in the space left behind when singing was impossible, putting words to paper opened a needed avenue for creative expression. Like singing a good song though, my desire to write requires a bit of drama. Perhaps drama isn’t the correct word to use here, maybe communicating a shared emotion based on the human experience is more appropriate.  A bit of drama never hurts though when expressing a depth of feeling that validates our tears, our fears and our joys. Art truly does imitate life and my life these past eleven months has been blissfully calm. Peaceful subtleties are harder to write about but reading between the missing lines means wondering if the unshared news is good or bad.

Today’s health update is good. My April scans showed even more improvement in three watched lymph nodes, the only signs of (minimal) SUV uptake. When my SNMWO pulled up my PET/CT scans from May 5th of last year, the day I was admitted to the hospital for seven days with a partial small bowel obstruction, his comment was:

“It looks like a war zone in there.” 

Yes, it did. There were explosions of bright lights in both lungs and throughout my abdomen telling us that the cancer was active and progressing. A war zone that was becoming increasingly more dangerous with symptoms to match. Then he pulled up my PET/CT from April 11th – the war zone was dark. As we scrutinized my body’s landscape we were awestruck by my response to this treatment. Stable is the word used here and stable is a good word in lung cancer speak. My side effects from my current daily oral targeted treatment remain doable and I remain on the prescribed dosage. June 3rd will mark one year since I began taking Mobocertinib off label for compassionate use. 

Now for some really sad news, my SNMWO (super-ninja-most-wonderful- oncologist) has left Kaiser. I had one last appointment with him the day before he left which was tearful and yet full of gratitude for who he is and all he has done followed by well-wishes for his new and exciting opportunities. While I am sad, I am also grateful for the role he has played in my life the last almost seven years. He has been the strong and gentle bearer of good and bad news, the steady rock that understood my most fervent hopes and a realist who could think outside the box. He fought for me, comforted me and showed us that our doctors can also be cherished friends. Both Jim and I will miss him dearly. We’ve had a bit of time to process this news and consider next steps and I will see a new oncologist on Wednesday and see if we are a good fit.

“The only constant in life is change.” That used to be a frightening thought, familiarity is after all, just that; familiar, comfortable and knowable. But, change is inevitable and gives the opportunity to embrace the magic of resiliency as it is the key to riding the waves and flows of change. 

It’s quite the ride. And with that, my latest update is complete.

xo

No More Excuses

August 14, 2022

I’ve been delaying getting my teeth cleaned. Yes, I know, a healthy mouth means a healthy heart but my heart hasn’t been the number one concern. First, it was Covid and my March 2020 cleaning was cancelled. When I got the notice that it was once again safe to visit my dentist, my nausea was so awful that the thought of sitting with my mouth propped open for an hour brought on anxiety dreams. But six years of chemo caught up with my teeth and my two front uppers as well as the lowers began to chip. This was not a good look. I knew what was coming, they were going to take one look at my mouth and declare a massive overhaul. If I’m totally honest, I wasn’t sure how much longer I was going to need teeth so I’d need significant convincing for this to be a sound investment. I was ready for the “just make sure I can smile without embarrassment” discussion. Then I got my scan results from last Thursday’s PET/CT. 

First line from the IMPRESSIONS section:

“Excellent treatment response with near resolution of all FDG avid malignancy. “ 

The tears of relief were instantaneous as Jim and I embraced each other, shocked at the turn of events and overjoyed with the reality of the findings. “Near resolution” means that there are a few spots that show a bit bright but the vast majority of the metastasis is gone or shrank significantly with virtually no activity.

I’m still pinching myself, astounded by the significance of this report. My cancer symptoms had disappeared shortly after beginning the new treatment but the scan offers validation. Yes, I am still dealing with side effects but the scales most definitely tipped towards life and I am overwhelmed with gratitude.

It’s affirmative. I’m going to need my teeth for a while longer.

Sometimes a laxative just won’t fix what ails you. 

July 5, 2022

On May 5th, I was scheduled for a PET scan to see how things were going since starting back on Enhertu after February’s surgery. Prior to the scan, I told Melissa, my radiology tech, that I had been experiencing gripping abdominal cramps, nausea and vomiting for the past couple of days. Of all the scans I’ve had in the past six years, Melissa is probably the most familiar friendly face. Knowing that what I was experiencing was not normal for me, she requested a stat reading of my PET results which were questionable but inconclusive according to the radiologist. Feeling worse and already at the medical center, I checked into Urgent Care where a CT without contrast (meaning I didn’t have to pre-medicate with steroids, yay!) showed that I had an obstruction in my small bowel and I was auto admitted to the Hospital. I spent a very long six days (worst Mother’s Day ever) pacing the hospital floor with the occasional hall pass to walk outside with Jim and Tess keeping me company in the parking lot. For the most part, I didn’t have to deal with hospital food. IV fluids only for the first few days, progressing to a liquid diet followed by a soft diet of jello, pudding and yogurt. Eating, simply being able to eat anything solid and keep it down became the objective.

Small bowel obstructions that don’t resolve on their own are typically referred to surgery, and we consulted with three different surgeons. In my case, surgery was not an option. A reverse NG tube to drain gastric juices would have been the next step, buying more time with hopes that the blockage would still resolve on its own and making for less pain, nausea and vomiting. So what could they do if the blockage didn’t resolve on it’s own you ask? Keep me as comfortable as possible. I heard myself reprising the same old refrain that repeated like a stuck record in my brain when I was first diagnosed, “ARE YOU F&*^ING KIDDING ME!” Simply put, I didn’t feel sick enough to die but I also know that that’s not a prerequisite. It did feel like a sucker punch even though I’ve known that this could be a complication since the moment I found out that the cancer had metastasized to my abdomen. This part of the story has a happy ending, the obstruction resolved on its own. On the day that I was released, I kept down a half of a piece of toast and a few bites of cream of rice cereal which was beyond exciting! I left with instructions to follow a low fiber diet and promised to return to the hospital immediately if things changed.

To add another layer of uncertainty, disappointment and worry to the mix, scans also revealed that after 18 months on Enhertu (16 months in clinical trial) my cancer had progressed and I began the process of qualifying to try an oral targeted therapy, off label. This proved difficult from the standpoint that even though Dr. Patil at UC had first suggested I try this approach and Dr. Narayanan seconded his suggestion, Kaiser would not approve this drug’s use for my one of a kind mutation. After two denied insurer appeals, the drug manufacturer approved me for their financial assistance program and I am getting the drug delivered monthly at no cost.

Starting a new treatment as I’ve said before is challenging in many respects. Emotionally, I dealt with the changes it would mean when it came to drug delivery. My previous six lines of treatment have all been infusions. On treatment days, I would see my doctor and then head over to the infusion center where the room was full of other patients and nurses to watch over us, making sure there were’t any infusion reactions (of which I have had several) or any other problems. Being surrounded by professionals who knew how to handle any situations which might arise was always a comfort. I signed for and accepted this drug at my front door. Jim was saddled with the responsibility to watch over me, phone at the ready in case he had to call 911. We actually discussed driving to the hospital where we would wait in the parking lot as I swallowed my first dose, you know, just in case. It took me an hour and a half to muster the courage to take those first four pills and I’m happy to say that all went well. I understand this anxiety is reversed for patients who start out with an oral chemo and then need to switch to (or add on) infusions. I can say with authority that these changes are challenging and life altering. Every. Single. Time.

With my new oral targeted therapy I take four pills everyday. Instead of a big hit every two to three weeks (plus pre-meds), I get a smaller hit every day (without the pre-meds). Side effects are also different with this drug.  Diarrhea has been the most challenging, I didn’t even know this kind of diarrhea was possible. Constipation was one of my previous complaints with all the other treatments I had been on. Between the steroids and the anti nausea drugs, I became very familiar with stool softeners, magnesium and fiber. I have expanded my knowledge base to now include Imodium, Lomotil and Rice Crispy Treats (actually good for combatting the big “D” – who knew!). Luckily for me the low fiber diet I am on is also what they recommend for helping with diarrhea so there is a faint silver lining to this. For any cancer patients reading this, my nutritionist, Mary, recommended a product called Enterade, designed for cancer patients consisting of amino acids and electrolytes which I believe is helping a good deal. My SNMWO and his oncology nurse, Jamie, are keeping a close eye on me and I feel supported. As unpredictable and uncomfortable as the side effects are, I must also say that I have noticed a reduction in the cancer symptoms I had been experiencing making a strong case for continuing. 

I will see my SNMWO again in a couple of weeks with scans the end of July or first part of August. We are hoping to take our mini house on wheels for a few outings this summer once I can get the big “D”  a bit more under control. Time with Ben and his parents is always great for lifting our spirits and he is growing into a toddler force to be reckoned with. We are having so much fun 🙂 

As always, I am eternally grateful for the Love, prayers and good wishes coming my way. Truly the best medicine there is.