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