Tag: clinical trials

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!

Stable

July 1, 2020

Cancer Terminology

Progression –  Means the cancer is spreading. This can be in the same area(s) seen at diagnosis or spread to other areas; i.e., organs, bones, brain, etc.

Remission – can be partial or complete. The cancer is shrinking.

Stable – the cancer hasn’t grown or shrunk, the disease in effect, has not changed.

NED – No Evidence of Disease. Can be short-lived or long-lived. If you remain NED for 5 years, you’re considered cured.

Mixed Response –  Some tumors have responded to treatment and others have not.  This can mean many things and is complex when it comes to treatment choices. 

The consensus from my latest scan is my disease is stable with one caveat, the two nodules my docs targeted for measurements each show a slight decrease in size.  While we were hoping for significant improvement I’ll happily take stable. Now what? Eight more weeks of treatment with tumor markers* checked in mid July and another followup CT scan in mid August. As long as I don’t have any new or worsening symptoms before then, and if markers and scans either remain stable or show improvement, I stay on trial unless side effects dictate otherwise.

That’s the down and dirty.  Going in for treatment every week does get old.  It’s a seven hour day between labs, EKG, care team appointment, pre-meds, infusion, followup vitals and another EKG. Side effects haven’t been too bad.  The initial rash, dry skin, fatigue, abdominal discomfort and diarrhea have improved and in the grand scheme of things, this is doable. 

In keeping with our new world of constant updates, UCHealth docs believe that what is driving my cancer is an EGFR ERBB4 fusion not a mutation. From a novel perspective, this EGFR ERBB4 fusion is a 10 on the 0-10 scale for novel. What this also means is that we have no roadmap.  I’m “Patient Zero”, either outstandingly unique or extremely unlucky. I’m going with outstandingly unique, mainly because I’m more of a glass-half-full type and extremely unlucky is just too negative and doesn’t fit with my “what you focus on expands” way of thinking. My daughter probably summed it up best; “Well Mom, conformity really isn’t your thing.” Not to fear, this could also suggest that new/old targeted treatments are back on the table and believe me, it’s good to still have options.

In other news, recently I joined with seven other Colorado lung cancer survivors and patient advocates sharing our stories, educating and pressing our elected officials to reinstate federal funds for lung cancer research at the 2008 level of $20 million dollars.  Currently, lung cancer is funded at $14 million, far-far too low for the cancer with the highest mortality rate in the world and $6 million less than was allocated in 2008. GO2 Foundation coordinated meetings with the offices of our US House Representatives and Senators with over 200 lung cancer survivors and advocates participating.  It was a memorable experience and I was glad to do my part.

Last week was also Turquoise Takeover sponsored by The American Lung Association – LUNG FORCE.  Myself and five other Colorado survivors shared stories and experiences which you can find on the American Lung Association Colorado FaceBook Page.

Also last week, Foundation Medicine re-mixed a previously recorded video with members of the Patient Community Council to celebrate Survivor Week. The link at the bottom of the page will take you to my Twitter feed if you would like to watch the video.

And lastly, July 19 will be four years to the day that I discovered I had something growing in my right lung.  Four years is significant in the stage four lung cancer world. Four years ago, we were talking about some day being able to treat lung cancer like a chronic disease instead of a terminal one. Today, we can say that within the last two years, more treatments have been approved by the FDA for the treatment of lung cancer than had been approved in the previous ten years! Yes, we are getting closer and we still have a long way to go.

The last four years have also revealed to me in ways previously unfathomable that resiliency, the ability to bend without breaking, holds within it’s sway a universe of boundless potential. I visualize my roots seeking the deep rich earth, creating the stability needed to counterbalance my ever swaying world above ground. My limbs are supple, my trunk is strong. My family, friends, medicine and magic have seen me through the past four years and I am resiliently stable, how about that for a dichotomy! I am also…eternally grateful.

Our New World

March 23, 2020

Surreal

sur·​re·​al | \ sə-ˈrē(-ə)l also -ˈrā-əl

Definition of surreal

: marked by the intense irrational reality of a dream

also : UNBELIEVABLE, FANTASTIC

*Merriam-Webster*

Trying times we find ourselves in. I’ve been working on my mental martial arts skills, rolling with the punches one could say. I wish this post could take on a broader, worldly “we can do this” tone but the wondering calls keep coming in and I must share my own personal update while knowing that we are all dealing with the surreal.

There could have been many updates I could have given since my surgery on February 27, but I was experiencing changes on a daily basis. The surgery itself went according to plan. Dr. S was able to take out the two largest tumors and neither was adhered to other organs so he was able to do what we set out to do laparoscopically.  I did so well that three hours after the surgery was completed, Jim and Lene brought me home.  There was one complication, however.  Most likely because of the antibiotics I needed to take for surgery, I developed an intestinal infection a week later.  The antibiotics destroyed all the good bacteria in my gut and the dangerous bacteria, that we all carry but normally are balanced with the good ones, led to the infection.  Not good at a time when there was a run on TP and cleaning products. Two weeks on a different drug and I am seemingly cured and repopulating with probiotics.  

There is good news as well. The research team at UCHealth was able to pick up a tissue sample and start a cell line, third time’s a charm. There was also more not so good news. I found out last week that I am not eligible for the two ADC clinical trials we were testing for. The specific proteins found on the surface of the cancer cells they were looking for fell below the 10% threshold.  Even if I was eligible, I was told that University is not screening new patients for trials because of the risks involved with COVID-19.  Double whammy.  

So now what?  Remember last year when I was hoping that a new cohort would open for an EGFR/PanHer trial?  On Tuesday, SNMWO messaged me to say that the next phase of the trial had been approved and my EGFR/ERBB4 fusion had been included. The best news I’ve had in 8 months and I don’t have any idea if/when I can start treatment.  This treatment requires weekly infusions at a medical facility where if the predictions come true, could become overwhelmed with COVID-19 patients and I am in the “high risk” demographic.

This is what “high risk” cancers patients are faced with:

  • What’s worse, disease progression or your chance of getting COVID-19?
  • If a patient goes in for treatment, could they be exposed to the virus at a time when the treatment itself is compromising their immune system, leaving them even more susceptible? 
  • In terms of new treatments, can the docs ethically expose patients to potential known and unknown side effects, risking hospitalization for a bed and medical equipment that might not be available?
  • Could we really be looking at:  “All we can do is hope our cancer doesn’t kill us before COVID-19 is under control?”  Are we talking weeks? Months? Years? Many don’t have that kind of time.
  • The reality is that the chance of survival drastically decreases for immunocompromised and at risk patients who do get the virus.
  • And here’s the kicker, at risk patients could fall to the end of the line when it comes to receiving treatment in a worst case scenario.  Choices might have to be made between them and someone who has a potentially better chance of survival. I truly hope it won’t come to this but the conversation is absolutely taking place.

Don’t believe me? 

https://www.forbes.com/sites/miriamknoll/2020/03/20/the-one-two-punch-cancer-and-coronavirus/?fbclid=IwAR3dyKSbQoNzPZwuSe9uf2AiPQiuobCTkEhLpBsiqvLfb4og7tq_-GY1SSg#3c4b5b8d58e6

I listened in on the web conference round table  mentioned in this article and it was sobering.

And from  © 2020 JNCCN—Journal of the National Comprehensive Cancer Network

…Ethical Considerations – “Beyond the care of the individual patient, oncology clinicians will face the heavy reality of rationing care. As the pandemic progresses, there will come a point when channeling a large amount of resources for an individual patient will be in direct conflict with the greater social  good.”…

I can’t get COVID-19, not now, not ever, so I’m isolating. Jim and Tess are the only ones I am in physical contact with. I no longer walk with my friends, but I am still walking. We wave at each other through open windows and utilize conference calls on ZOOM. I don’t go to the grocery store, my knight in shining armor has been but I’m strongly considering home delivery. We don’t do take out but we do take rides in the car. There is a spray bottle of bleach that lives on the kitchen counter and in the bathrooms, the house smells. Our hands are raw from washing but they are clean.  All this so that we can say we did everything we could to get me to the time when I can start the new treatment because life is still good, even with our current reality. In lieu of coffee dates, lunches and hugs, I’m spending lots of time emailing, texting and talking on the phone. I’m thrilled that the weather is warming up and I can be outside grounding myself in the garden. I try not to focus on the fact that the cancer could be growing. The surgery took care of our biggest emergency fears and my last PET/CT scan was “unimpressive” according to Dr. Camidge and unimpressive is good. I’m using all the tools in my self healing tool box, even the ones that I’ve shelved for the past 44 months. My years of study and practice in complementary medicine, which I have used alongside my medical treatment, give me a measure of continuity.

Jim continues to deal with the incredible and at times, overwhelming responsibility and believe me, I know that I am incredibly blessed by his love and devotion.  My prayers and good wishes go out to all of you for we are all connected in the grand scheme of things.  The interwoven Universal web reminds us that what we focus on – expands.  Let’s all do our utmost to envision the world we want, because the world we had will never be the same. We have an opportunity, let’s make the most of it.

Stay well.