Who Knew This Was a Leap Year?

Friends and Family,

Yesterday, Genevieve and I got the results of my first scan since starting this new clinical trial two months ago. I’m breathing easier and coughing less, so it was a massive relief but no surprise when we got great results! Many of my spots are stable, and many have shrunk a bunch. I no longer have enough spots to film a new 101 Dalmatians movie inside my chest.

The real magic happens when those spots disappear!

This is my third clinical trial, and my second one that has been successful. I would have died eight years ago without clinical trials. In fact, every survivor that I know of who has lived for at least ten years with lung cancer has been in at least one clinical trial, and some have been in five or six . This is my encouragement to all of you who haven’t considered clinical trials before. I hope you ask lots of questions and give it some thought. You might just live longer.

Every treatment stops working at some point, so the challenge is to have options when that time comes. My oncologist (Rachel Sanborn), whom we adore, is as proactive as we are. We jointly agreed that it made sense for me to get established in Denver at University of Colorado, where I almost ended up before Dr. Sanborn pulled a local trial out of her hat at the last minute. UC runs a lot of trials at once, so it’s a great place to consider. I tried for weeks to get UC to let me meet via Zoom to review and sign their Informed Consent, which had to be done before they could test my leftover biopsy tissue for their trials. Red tape won out in the end, so Genevieve and I flew to Denver to get established in their system. With that step out of the way, they are testing my biopsy tissue. This will save about six weeks (!) when the need for a new trial arises. Since for some people, like me, cancer tends to go wild once it finds a way around the current treatment, the ability to get into a new trial quickly could prevent the cancer from spreading much further. Never mind that I may not go there if something better comes up – My safety net is in place.

For many years I have felt like a frog that jumps from lily pad to lily pad, just as the one I am on starts to sink. The trick is to buy as much time on that lily pad as you can and have another one ready for that next leap. It’s what keeps me from croaking!

Here’s hoping every year is a possible Leap Year for you.

Love,

Dann

Surviving Another Clinical Trial

Friends and Family,

I’ve been on my trial for almost four weeks now, and the best part is that the drug seems to be working. Forget about the snow still melting in my yard; It’s another beautiful day in paradise.

I say this even though we got off to a rough start. Most trials involve a “washout period.” Scientists who clearly aren’t living with a disease that is trying to eat you alive decide that you must be off a drug like Tagrisso, which has a 48-hour half-life, for two weeks before starting the new drug. During that time, the cancer is free to grow and metastasize as it pleases for the sake of scientific purity. For a week before the trial began and for two weeks after, my breathing got progressively worse, which meant the cancer was growing. That led to a quick X-ray to find out if fluid was building up in my lungs again. And no, I have absolutely no feelings about washout periods.

Sorry - this is a No Smoking zone.

Thankfully, fluid wasn’t building up, and my breathing got easier again over time. This is the important part – the drug seems to be working. Success!

I think I had every symptom listed as a possible side effect and maybe added a couple of new ones to the list in the first couple of weeks. If the symptoms were on a Bingo board, I would have won Bingo Blackout in the first week. I’ll spare you the details but suffice it to say that large doses of pain killers, meds for itching and nausea, and creams and lotions were involved. I don’t remember much of that time because I slept through most of it.

Now, almost four weeks in, I can climb hills and stairs easier. Many of the side effects have faded away, which I understand is typical for amivantamab. I’m left with just a handful of side effects. Most are manageable except an uncommon one, which is throat sores.  That one caused a ten-pound weight loss before Genevieve and I got a better idea of what foods I could eat.

The hope is that the sores will go away soon. If not, we may have to reduce the dose and hope the drug works anyway. Timing could be better, since the dose is scheduled to double and move from weekly to monthly starting on Tuesday.

We don’t know if the harsher symptoms will come back with the higher dose, or if the throat sores will go away with less frequent dosing. What we do know is that amivantamab is buying me time, and that’s what it’s all about.

I hope you are doing well.

Love,

Dann

Sticking the Landing: A New Option Appears

Friends and Family,

 Things are going far better than we could have hoped, and we’re excited! Once again, I have fallen and landed on my feet.

I must be on about my 16th life.

Genevieve and I were expecting to travel to LA or Denver for a clinical trial until my oncologist got me into a closed trial in Portland. She put me on the wait list fast enough so that when an opening came up, I was at the top of the list. Since the list could include people in South Korea, the UK, and many sites across the US, her speed made the difference. I only wish it didn’t mean others don’t get in.

The trial is for amivantamab, a drug that has already proven effective for my mutation (EGFR exon 19). The trial is to see if injecting the drug into belly fat is just as effective, while causing less side effects, than an infusion. There’s no guarantee the drug will work, but there never is.

 I’ll start the trial on Valentine’s Day. Almost fifteen months ago I started chemo on Genevieve’s birthday, which didn’t thrill me. She saw it differently. She said, “what a wonderful birthday present.” Chemo pulled me back from the brink. I’m hoping this trial turns out to be an even bigger gift.

Thank you to everyone for all of your support.

 Love,

 Dann