Tag: Mobocertinib

New Year – New News – New Plans

January 9, 2024

Did you see the fireworks? Did you feel the energy shift from one year to the next? Did you say goodbye to 2023 with gratitude or regret? Did you welcome the New Year with optimism or pessimism? Are you ready?

Ready for what? I’ve been gazing through the looking glass seeing a familiar world that is somehow, once again, turned inside out. 

There are many changes that culminated for me at the end of 2023. After spending hours on the phone over multiple days followed by three hours waiting in line at my local Social Security office, I am now officially a Medicare recipient! Turning sixty-five at one time seemed like an event that would take place in a distant future that I would somehow be better prepared for. While on the phone listening to irritating music and repeated messages telling me that I could always “go to the website” I wanted to yell at someone…anyone…so that I didn’t have to feel the emotions boiling up inside of me. I found my frustration morphing into anger at the unfairness that aging can at times seem to inflict upon us. All said and done, everything fell into right time and place and I re-committed to focusing my attention on living life to the best of my fluctuating abilities, whatever that looks like, grateful that I made it to sixty-five.

Big change number two – after over thirty years, I also am no longer a Kaiser Permanente member. As of January 1, I began receiving my care at the University of Colorado Cancer Center under the expert care of Dr. Tejas Patil who was my oncologist during my clinical trial on Enhertu. I am in excellent hands and I am comfortable with the decisions I have made. Embracing the unknown, as every cancer patient knows well, can take a toll on our mental and physical well being. Living with a cancer diagnosis has opened my awareness to the possibilities of what could and can be. Learning to look forward with awe to what is yet to be discovered and who I will meet along the way continues to be enlightening as well as fulfilling. I look forward to taking these next steps with my new team at UC Cancer Center.

Compounding the timing for this switch was a second brain MRI on November 27 confirming the cancer has metastasized to my brain. Life changing, yes, but it can be dealt with. I have come face to face with similar challenges in the past. Dr. Patil gave a referral to the amazing Dr. Sana Kamara, radiation oncologist and professor at UC, and a plan is being developed. I will be getting more scans in the next few weeks and we will go from there. Right now we know that the brain lesions are all sub-centimeter and hopefully can be addressed with SRS (Stereotactic Radiosurgery).

Another challenge has been that the drug I have been receiving for the past nineteen months is being discontinued by the drug company. This has been a shocking blow to those in the EGFR Exon20/HER2 community as a potential line of treatment will no longer be available. The drug company has promised that those who are currently taking Mobocertinib and doing well will have access through compassionate use for as long as needed. The good news is that there are new drugs in the clinical trial pipeline which will hopefully fill the newly created gaps in treatment options for this lung cancer sub-group, yet another example of living with the unknown.

Where do I fall in this scenario? I am now taking a chemo drug that has better known efficacy for passing through the blood brain barrier (BBB). We will continue PET/CT scans to determine how the new treatment is working and monitor available clinical trials that I might qualify for if/when I need other options. I find that resiliency is once again called for. I will see Dr. Patil next week and we will update plans. In the meantime, I want to thank my friends from all over the cancer community, research, pharma, patients and advocates who have offered advice, suggestions and overall support as I meet another obstacle. I am inspired by you and grateful for you.

So 2023 has ended with a BANG! All things considered, I think there is reason for hope. Seven and a half years ago, statistics said that I wouldn’t be here today, but medicine and magic are working beautifully! 

My best wishes for you and yours in the New Year!

Summer Lovin’

August 10, 2023

Photo by Markus Spiske on Pexels.com

I love summer. Not just because my birthday comes in summer but also because I have many wonderful memories of feeling healthy and vibrant in summer. From Memorial Day thru Labor Day, you could find me and my siblings at the town pool. Back in the day, teaching swimming lessons and lifeguarding took up most of my summers from the ages of twelve to twenty-two. Songs by Three Dog Night, The Eagles, The Bee Gees, America, Seals and Crofts, Elton John, Cornelius Brothers and Sister Rose, Wings, and the Commodores blasted over the loud speakers competing with the screams and splashing of town kiddos often dropped off in the morning and not picked up until dinnertime. Suffice it to say that the summer ‘family pool pass’ was well worth its price in gold and this summer job was not only coveted but formative. 

It was hot in the high desert of western Colorado during the summers and shade was hard to come by. My tan lines were strikingly inconsistent and the backs of my legs were always in sharp contrast to the tops of my baked to golden brown thighs and tops of feet as the lifeguard chair umbrella could only extend so far without obscuring our line of site. My brown hair, bleached by the sun and pool chemicals was almost blond when school started in the fall. The smell of chlorine, Coppertone, Bain de Soleil, zinc oxide and baby oil soothed my senses and I can find myself back in the 70’s when applying sunscreen today.

While our jobs demanded focused attention on the different areas of the pool, there was also time for reflection as we sat alone in our chairs or paced the perimeter of the pool, the sun’s heat reflecting off the water splashed cement. Today, I am reflecting on the past few months as there have been some exciting moments. There was a six day hospital stay in May complete with an emergency angiogram in the cath lab. The good news is that I didn’t have a typical heart attack as my arteries were free of blockages. I did experience a heart ‘event’ but my heart has fully recovered according to followup testing. 

On June 4th, I was asked to represent the patient voice on a three person panel at the reception Foundation Medicine hosts every year during the ASCO convention in Chicago which was a true highlight and cherished memory. In mid June, we met with family to spread my mother’s ashes amongst the meadows and trees of Pinon Mesa, a favorite camping and fishing area of our family’s. Covid found us, and Jim and I spent the remainder of June quarantining and sleeping, grateful for a well stocked pandemic pantry of soup. I was prescribed antivirals for five days which lessened my symptoms but Jim got to experience the full effect. Covid sucks.

June also marked one year of being on Mobocertinib. 

My July PET/CT revealed that Mobocertinib is still working spectacularly well for keeping the cancer under control. The scan did show some Covid related inflammation in my lungs which we will keep an eye on but no abnormal SUV uptake was noted. 

July 19th marked seven years since my lung cancer discovery. Seven years…

And earlier this week was my birthday which we celebrated with Ben and his parents. A SPECTACULAR birthday cake made with love baked into its lemony goodness followed lots of Mimi and Ben play time bringing joy to my heart and I was sad for the day to end. 

All in all, I’d say this has been an eventful spring/summer so far.

Question: Can one buy an orange candle that smells like Bain de Soleil? Sometimes I just need that visceral summer hit while listening to ‘Crocodile Rock’ and ‘The Hustle’.

Benjamin: Colorado Kid – Photo by Aliene McDaniel.

Benjamin – Age 2