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    Lung cancer patient/survivor
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    Hiking, biking, reading, journalling, blogging

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Wyde1340's Achievements


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  1. Yeah, it was awesome insurance too.
  2. Oh, I am... Its amazing to see how far I've come...I really thought April of 2019 was the end of me.
  3. Unfortunately, they did. They shut down the refinery and went bankrupt.
  4. Our insurance is not employer-based. We brought it separately from a broker, because my husband was laid off and the company decided to only allow COBRA for a month. I'll call my insurance company.
  5. I'm thinking about coming off of SSDI just so I don't have to go on Medicare. We have private insurance that pays all of my targeted therapy, except for my deductible (which is an easy $500). The premiums are expensive, but I'd end up paying more if I roll over to Medicare. Thank you for letting me know about that bill. I had no idea there was one out there.
  6. Quick question (not sure where this would go)... I'm supposed to start using Medicare in August. The problem is the co-pay for my Tier 5 medication (Crizotinib) is INSANE!! I'm in Pennsylvania, if that makes a difference. The question is: why can't the manufacturer (Pfizer) help if you have Medicare? Their paperwork for the co-pay help specifically says this. Thank you!
  7. I was dx with Stage 4 non-small cell squamous lung cancer in December 2018 (on my birthday) at 47 years old. My only symptom was a swollen lymph node in my neck that didn't go away after a month. Blood work only showed a slightly elevated calcium level (should be between 8.6 and 10.4mg - I was 10.6)...normally wouldn't raise the alarm. However, I had a history of smoking, so my doc suggested a CT scan. The CT scan was from my neck to top of lungs. It showed a mass in my right lung. Doc then sent me for a biopsy of the lymph node & it showed NSCLC squamous. Next up, PET scan...was only in my lung and lymph mode. Onco put me on Keytruda because my PDL1 was 100%. Oh, the side effects were terrible. I lost 30 lbs and believed that I was close to death. At the end of 3 months, my onco did another PET scan. Now, my cancer was on my skull, shoulder, lymph nodes, adrenal glands, ovaries, hips, femurs and foot. By this time, he had gotten back my biomarker testing. I had MET amplification with 3 others, but MET amplification was high, so he put me on Crizotinib (Xalkori). During this time, I had radiation on my hips, femurs and foot. In the middle of radiation, I broke my femur (left) and foot (right). I was unable to have my femur repaired for 3 weeks. There were no painkillers to help this pain. I didn't take a shower for 3 months, because I couldn't get upstairs. I finally had my femur fixed (had rod installed) and foot was in a boot. Crizotinib started working within a week. The lump on my skull went away. I could breathe better and my lymph node was gone. I had to cut down from 2 tablets a day to one, as I did have some side effects. I had SBRT to my lung lesion and had no side effects. It shrunk my lung lesion. In 2020, my rod in my femur failed and I had to have a partial hip replacement. I'm happy to say, I have no pain anymore & wish I would have been given that option in the beginning. I also had cryoablation done on my adrenal gland. As of today, I am 22+ months stable and I'm still on Crizotinib. I only light up some in my lung and one adrenal gland. They both may still be residual inflammation from the SBRT and cryoablation. In between these past 2 years, I had pneumonia once, pain in adrenals and c-diff which required a weeks stay in the hospital. So, hold on to hope!! Get a great onco and team (preferably a bigger university hospital or cancer only center). Do as much research as you can and advocate for yourself!!
  8. I never answered back. I believe I talked to a few of you at the Hope Summit. Anyway, Keytruda failed miserably (caused hyper-progression). However, I found out that I have the MET amplification mutation. I've been on Crizotinib for 2 years and have been stable. Sorry for leaving like that.
  9. Little late in getting to this party Im am (squamous) MET amplification and have been taking Crizotinib for 2 years...I've been stable that long as well.
  10. It all started with a flu shot in November 2018. A week after that, a funky lymph node popped up in a strange place on my neck. I waited a month before seeing my GP. GP sent me for a CT scan and from there, PET scan,biopsy, and MRI. Then the diagnosis (NSCLC Stage IV Squamous with Mets to femurs) I started Keytruda on Monday, January 14th. I am 47 years old, previous smoker (quit 5 years ago), worked in chemical plants and refineries for most of my life. I am hoping to receive support here and give support. Thanks for listening!
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