Carboplatin Alimta and Keytruda Treatment: What's your experience?

@dougmck, I hope you are recovering from the biopsy. There's a lot of waiting through the diagnosis process, which isn't easy, but it can be beneficial.
I can share my own story but remember that it's just one example. My original biopsy was also taken from just a lymph node. There were enough cancerous cells in the lymph node to confirm that it was cancer. The pulmonologist felt there was no need to put me through the risk of going into the lung to get access to the mass. The results from my liquid biopsy did take two weeks to come back. At the time, I wasn't sure that waiting was a good idea. I even questioned if I should have some chemo while we waited. I was symptomatic and getting sicker. Now, I can appreciate the wait because I did have a targetable mutation. Because of that, I was able to avoid chemo and radiation. When I've had a few scares since then, I try to remind myself that unless I'm in the Emergency Department, I have some time to take a breath, review options, get second opinions, and wait (just a bit) for tests.
Do you know if molecular testing/biomarker testing was completed when you were diagnosed in 2008, or with any of your other nodules?

@lls8000 Hi. It sounds like you were feeling pretty much the same way I am tonight. The nodule in question was radiated in 2008 and then became malignant again in 2018. We re-radiated it, and did a needle biopsy before doing so. It's now malignant again and spreading. I have questions now as to whether they actually correctly radiated the targeted area or else it's possibly become radiation resistant, which is rare. It turned out that there wasn't sufficient enough tissue to get an accurate molecular reading from the 2018 biopsy, and we tried it again in December when it became malignant again, with the same response from pathology... not enough tissue! We were able to get a PD-L1 reading, however, which was 0. So it's possible that it may have mutated more since December and have a higher PD-L1 reading now, but highly unlikely. I was able to talk my oncologist into ordering a liquid biopsy for tomorrow... the results should be back in a week-10 days. Maybe he'll be willing to to start tx then, because we'll have some sort of confirmation that it's cancer.

This combo is the exactly what I was put on for Stage IV non-small cell lung cancer (adenocarcinoma).

The first week totally sucked! I mainly had really bad fatigue and chemo brain. Kind of felt like I've been hit over the head with a baseball bat! Wasn't nauseous, so that was a surprise.

I think the worst side of that was the one that I didn't know existed on chemo, and that was mouth sores. It got so it was painful to my mouth to even drink water! We called the doctor, and he told me that it was not an uncommon side effect, and that there at Mayo (one of the smaller clinics), they had developed something that they called magic mouthwash. It changed my life. I was on that regime of every 3 weeks for five infusions. The other four infusions we're a little better, mostly because I had a better idea of what to expect. I knew when it was almost time for my infusion because I almost started feeling human again!

They sent me to get a PET scan, and my nodules had reduced by over a half, which I thought was pretty cool. They changed my regime by pulling the Alimta. 90 percent of my symptoms just vanished. I've had two infusions like that, and other than some moderate fatigue ,I'm feeling pretty good. I've read all kinds of terrible stuff about Keytruda as well, but I don't seem to be having any negative side effects from it, that seemed to all come from the Alimta.

I meant to send this as a reply to the original post. Didn't mean to bother you Doug!

So, there's my experience. Your mileage may vary.

Sandy

@asongofhands I'm replying to myself again. I misspoke. I'm still taking the Alimta and keytruda, but the carboplatin was the one that was really giving you trouble. Consuming Platinum just seems like a bad idea!

Thanks for your reply. I'm glad you've adjusted to the treatment and they stopped the carboplatin. How many infusions have you had so far, and do you know what your PD-L1 level was before starting keytruda?

My husband had stage iv NSCLC. Did Chemo. Now doing Keytruda. After approx 24 every 3 wks infusions, he started having side effects — Afibs >had ablation, hypothyroidism >now taking meds. Now has skin rash on chest and back, loss of appetite, sneezing after eating, fatigue, foggy brain . Trying to address all these issues but they keep mounting, I hope he can finish out the 2 years.

@abob What kind of cancer response has he had so far from the keytruda?

NSCLC mass was removed by Lobectomy. Told it was a clean cut but there was Metastasis to adrenal gland which was resolved/eliminated during chemotherapy. He has not had any recurrence during Immunitherapy and blood dna tests show 0% cancer in blood.