OOPHOR…WHAT?

February 14, 2022 

Oophorectomy. Actually, a Salpingo Oophorectomy, that’s when they take out the fallopian tubes along with the ovaries. Not a hysterectomy, the uterus stays to stand guard over the nether parts. 

My ovaries…that’s where the cancer has been very slowly increasing for the past many months. Must mean that the treatment I’ve been on has stopped working, right? The answer is not necessarily that definitive.  Cancer care is complex, as much art and intuition as science. When what might be considered oglioprogressive disease presents, the idea is that just that area(s) can be treated with surgery or radiation therapy, like what we did with SBRT (stereotactic body radiotherapy) to a right lung nodule in January of 2019. Other areas remain stable and hence make this surgery a good option. Another very significant reason to have my ovaries removed is that they are still small enough to take out before they potentially cause further trouble. 

Two years ago, I began my clinical trial journey with UC Cancer Center, Lung Cancer Clinic.  Clinical trial number one was RAIN Therapeutics’ Tarloxotinib, under the watchful eyes of the imminent Dr. Ross Camidge, Candice Rossi, NP and clinical trial coordinator, Nikki Conti followed by clinical trial number two, DESTINYLung01, with the brilliant Dr. Tejas Patil and clinical trial coordinator, Josh Saginaw, RN.  My last appointment included not only thoroughly reviewed suggestions from Dr. Patil for ongoing treatment but a few tears as well.  I will miss them and am forever grateful for the compassion, empathy, dedicated care and friendship they have so generously extended. I’ve been assured that I can still consider them members of my oncology team and that has made this transition easier. 

Instead of totally changing gears with a new drug, (Number 7) we decided on treatment plan Number 6.5:  Salpingo Oophorectomy and continue with Enhertu (clinical trial drug which was granted Breakthrough Therapy Designation for NSCLC (HER2) by the FDA since I began the trial). What is true is that Enhertu has been very effective and we believe that I am still getting clinical benefit, despite the ovaries. I am once again back in the expert care of my SNMWO (for those new to the blog: Super Ninja Most Wonderful Oncologist) at Kaiser, Dr. Vignesh Narayanan.  Dr. Sarah Whittier, gynecological oncology surgeon and robotics and laparoscopic specialist, will be performing my surgery this Thursday, February 17 and I will resume treatment March 7.

I’ll have had a nice long break from treatment, my last infusion was on December 30 and my body is responding well.  Enhertu’s most troublesome side effects have been nausea, dehydration and vision issues. Acupuncture helps as does energy work and anti nausea meds. Most recently, I’ve added CBD oil daily.  Now that the side effects have mostly resolved, I’m gearing up for the restart of treatment with mixed emotions. One day at a time.

For now, I say goodby to my ovaries and thank them for a job well done.  Without them, we would not have been blessed with our incredible daughter who along with our loving son-in-law, gave us the gift of becoming grandparents! 

Yes, thank you. Thank you very, very much.

p.s. Look who just turned ONE year old!

BIG MAC ATTACK

September 9, 2020

“Two all beef patties special sauce lettuce cheese pickles onions on a sesame seed bun.”

I pretty much adhere to a plant based diet.  Fish and chicken will find their way onto my plate for additional protein which I must stay aware of as it tends to drop easily according to my bloodwork.  But red meat appears rarely on my menu. I don’t have a problem making it for my knight in shining armor and I don’t have a problem saying no to the aroma or the flavor. Drive through fast food however occurs only when there are no other options and I try very hard to make sure there are other options. Imagine my surprise when I had a craving, and I mean a CRAVING yesterday for a Big Mac, a dietary delight I haven’t ingested in over thirty years. The experience was delightful even if I only ate half of it.  I’ve decided it’s all about the special sauce which squishes into the melted cheese on the hamburger patty which squishes onto the sesame seed bun with just a hint of pickle.  Suffice it to say that my craving was well rewarded.

I passed all the pre-screening tests for clinical trial DS-8201a and on September 1, I received my first dose. For those in the Lung Cancer community, you can refer to the DESTINY-Lung01 interim results that were presented at ASCO 2020, pretty exciting findings for those with HER2 metastatic NSCLC. No pre-meds are given with the first dose which runs for ninety minutes followed by a blood draw and then three to five hours later, a final blood draw.  Blood is held in high esteem as eleven tubes were drawn before the excitement could begin and I found myself wishing for a glass of orange juice and a cookie as I left the lab to proceed with my ten hour day.  I left tired but encouraged as I didn’t experience any infusion reactions and other than the long day, all went well. 

 Dr. Tejas Patil is my oncologist for this trial. He is quite brilliant and I am not shy in asking him questions which he spends time answering and explaining with hand drawn pictures and study printouts he shares with me. Oh yes, we are getting along famously. I’m also happy to report that Candice (PA), Nikki (trial coordinator) and Dana (Dr. Camidge’s nurse) are following me with this trial as well so there is needed and appreciated consistency and concerted care.

On day two I noticed some nausea and fatigue, and with each subsequent day the nausea and fatigue increased until I was having a very difficult time eating, drinking and staying awake.  I tried all my magic; acupuncture, ginger, more ginger, THC and eventually Compazine which barely took the edge off.  Yesterday, five pounds down and fairly miserable, I had an appointment for more bloodwork and a quick appointment with Candice who ordered a liter of IV fluids, dex and Kytril (antiemetic) and on the way home, the CRAVING hit with a vengeance.  

“Honey, I need a Big Mac!”

“You’re kidding???”

“NOPE! Like I really need one!”

I could barely get home before I opened the bag.

I can go back for more IV fluids if needed and I have an Rx for Kytril which I took again this morning.  The nausea is low grade right now and is a very common side effect of this drug. Everyone responds differently but the info on the patient sites for this drug are full of antidotes and stories, I am in good company and far from unusual.  I’m not sure if Big Mac’s will be added on a regular basis, I might branch out to an occasional Whopper or Bud’s has a pretty spectacular burger I’m told.

  Let’s just say, nothing is off the table.

For your throwback viewing pleasure 🙂

https://www.youtube.com/watch?v=dK2qBbDn5W0

P.S. –  SURVIVEiT fundraising update:

The Indiegogo and private donation campaign was a great success!  Over $41,477.00 to date to help launch the Cancer COPiLOT.  If you would still like to make a donation, you can visit our website: www.surviveit.org.

I was also asked to write a guest blog about my experience participating in a clinical trial during the pandemic.  Here is the link: https://www.surviveit.org/newsroom/bending-without-breaking-cancer-covid-19-navigating-now/

It’s Raining, It’s Pouring

May 1, 2020

The RAIN 701 (Cohort C) phase 2 clinical trial at UCHealth is a GO.  I had all the tests; full body CT, chest CT, brain MRI, bone scans and labs to determine that I met all of the qualifications.  I am grateful beyond words that I have been included.  I’m also seeing how I have interwoven my interpretation of “failure” with the construct of control or the lack thereof.   Which once again bodes the question, “What is failure and how can one possibly fail at life and death?” This seems to be a theme for me.

I didn’t realize how unsettling this process can be.  This is evidence based medicine and there are rules to be followed.  The results must be measurable, meet the standards for replication and the rules complied with. The rules are stringent as this is where medical science meets a human being, a real living breathing person.  When my Dad worked in the lab for American Gilsonite and Standard Oil, he worked in the scientific sphere and I could grasp with my child’s understanding a tiny bit of what he found fascinating about chemistry. But my experiences have taught me that the Universe is fluid, constantly in flux, ever changing, ever morphing and there is a science to this as well.  I am mesmerized by the in-between but the fact remains that when conducting scientific medical trials, there are rules that govern outcomes.  

To throw fuel on the fire, Covid-19 has determined that everyone is now living with new rules. The rules at the medical center are strict.  Masks must be worn and unless you need someone to help you walk, only patients are admitted into the cancer center, at least for now.  

I didn’t have my person with me yesterday.  I didn’t have him with me last week when I experienced an infusion reaction during my first dose and ended up spending the night and most of the following day at University Hospital under observation. Cancer is hard to do alone on a good day and in the era of Covid-19, it can feel like even the good days take on a flavor of unfairness and heightened fear of the unknown. This is difficult for both of us. Jim has been with me for every appointment, scan, and infusion.  The disappointment and fear showed loud and clear in our eyes peaking above our masks as he dropped me at the door, spending his day waiting for phone updates. We are dealing with this new reality but it’s not been easy. I miss his steady presence, his watchful eyes and his comforting love beside me as I allow a study drug to drip into my veins.

My infusions are once per week and that day is extremely long.  I start the day with labs followed by waiting for the results.  This drug lowers potassium and so I take daily supplements and get my levels checked every week.  Next is a check in with my care team for symptom updates and a hands on once over followed by an EKG.  If everything checks out, I move to the infusion room for pre-meds followed by the study drug which runs for 90 minutes.  Then the waiting continues with EKG’s every hour for four hours to monitor any QT prolongation (interruption in heart rhythm) along with vitals.  Because of the infusion reaction from the first dose, we doubled my pre-meds, added another med and increased the duration.  It seems to have done the trick and 10 hours after Jim dropped me off he picked me up. I am impressed with everyone at UCHealth Cancer Center.  They have taken exceptional care with me and are as committed as I am to making sure I have the best outcome possible.  Scans will be done after 8 weeks to see how well the study drug is working.

During my waiting to qualify period, I decided to make cloth masks from fabric I have refused to part with. This box-o-fabric has moved with us to every new house for the past 35 years. Out came the sewing machine and I was reunited with my sewing table making retro fabric masks from the early 80’s and beyond. This has been a great escape and I think I’ve made close to 60 masks. Wearing a mask used to be for Halloween or bank heists, now you can’t go anywhere without one. What can be learned about our fellows by only looking into their eyes? It’s been said that the eyes are the windows to the soul. When we only have another’s eyes and body language to interpret what is being said, what do we see and hear? How comfortable are we with this intimate act? Better food for thought, how uncomfortable are we with either wearing a mask or looking at someone else with a mask? Do we hold the gaze or look away? I find that even eyes have masks that can attempt to hide what we are fearful of expressing. Eyes can also reveal the utter magic of a soul expressing itself in human form. Yes, this is a very intimate act.

And so fellow travelers, we continue to maneuver through our ever changing world. 

Stay safe, stay hopeful and stay loving.