Tylalla Posted December 15, 2016 Share Posted December 15, 2016 Hello. My name is Michelle and I am new to this forum. I am a 3 1/2 year survivor of non-small cell squamous cell lung cancer, and 1 year since recurrence at stage 4 with mets to my pelvic bone, spine, kidney, a couple lymph nodes, and 2 nodules in my lung again. I've been through chemo twice, radiation, surgery, Opdivo, Tarceva, and now getting ready to start Keytruda.I take each day as it comes, thankful for another sunrise. I've lost my hair twice, (as well as my eyebrows and eyelashes), but I didn't let it get me down. I just learned how to crochet hats and waited for it to grow back! The side effects have been rough, and they have taken a lot out of me but with the help of a couple great caregivers (my husband and my son, and my puppy), I have managed.I look forward to reading and sharing with others on the forum!Sent from my SAMSUNG-SM-G890A using Tapatalk ViviAnn, Michele and LindaD 3 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted December 15, 2016 Author Share Posted December 15, 2016 [emoji4] Quote Link to comment Share on other sites More sharing options...
Susan Cornett Posted December 16, 2016 Share Posted December 16, 2016 Hi, Michelle. Wow - you've had quite the adventure with lung cancer. How did your doctor find the mets to your bones? I'm a stage 4 also. I had mets to the thyroid and, after that was discovered, my doctor requested a pet scan that was thankfully clear. I've since had a clear chest CT. His plan is to go forward with chest CTs unless I have some pain or other oddity that requires a different view. I know that this nasty cancer has a tendency to go to the brain and the bones. My fear is having a seizure and that would be my first indication of brain mets. I consider myself otherwise very fortunate as I approach one year from my surgery and diagnosis. Each and every day is a gift and I continue to make long term plans. My motto is cancer be damned. Blessing to you and yours! LaurenH 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted December 16, 2016 Author Share Posted December 16, 2016 Hi skmcornett, the met to the kidney was found during a routine chest CT. The scan went a little further south than usual and caught the top of my kidneys, and there was a spot. The Dr thought maybe it was a kidney cancer and ordered a PET to check for any other spots. That's when the pelvic bone met was found, along with the 2 nodules in the lung and the couple lymph nodes. The spine met wasnt found until just recently. My last oncologist missed it. I had a biopsy on both the pelvic met and the kidney met. It was my original lung cancer come back to bother me again.It's so great to hear you have clear CT's! I really hope that continues for you!I wish a happy holiday season to you and yours!Sent from my SAMSUNG-SM-G890A using Tapatalk Quote Link to comment Share on other sites More sharing options...
LaurenH Posted December 16, 2016 Share Posted December 16, 2016 Hi, Michelle, Welcome to LCSC! I am glad that you found us and I look forward to getting to know you. I work for LUNGevity as the Digital Community Manager. I became involved with the organization as a volunteer in 2011 when my uncle was diagnosed with Stage IV NSCLC. We just celebrated five years of survival with him this past fall. Like you and Susan, he has a positive attitude and is grateful for each new day. I hope that you make many meaningful connections on this forum. Please feel free to explore the discussion boards and join in on any conversations that resonate with you. This is a great place to ask questions and our members are happy to share their experiences and (non-medical) advice. There are also community blogs, photo galleries, and a calendar with lung cancer events. Please let me know if you are looking for any types of specific support or resources and I will be glad to help. With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Quote Link to comment Share on other sites More sharing options...
Tylalla Posted December 16, 2016 Author Share Posted December 16, 2016 Hi Lauren, thank you so much for the warm welcome and all the helpful information! I look forward to exploring everything and meeting new people!Happy Holidays to you and yours!Sent from my SAMSUNG-SM-G890A using Tapatalk Quote Link to comment Share on other sites More sharing options...
Tom Galli Posted December 16, 2016 Share Posted December 16, 2016 Michelle, We share a type (squamous) and treatments: surgery - check; radiation - check; chemo - check; and Tarceva - check. Check also on hair, eyebrows and eyelashes. But, I am now at the survival stage where hair loss is old age balding rather than infused chemicals! Good to have you here and wonderful that you are persevering with your treatment. If I can live, so can you, and we've got a lot in common. Stay the course. Tom Michele 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted December 17, 2016 Author Share Posted December 17, 2016 Hi Tom, we certainly have both been through a lot. You give me hope though. I'm going to be starting Keytruda at the end of the month. I really hope it works well for me.Happy Holidays!Sent from my SAMSUNG-SM-G890A using Tapatalk Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted May 9, 2017 Author Share Posted May 9, 2017 Hello all,We'll it's been a while, and things have changed. I had 4 rounds of Keytruda. A scan following that showed my cancer was still progressing. It was decided a clinical trial was my next option. We decided that the MATCH trial was "the one", and I was scheduled for another biopsy.During that time, the tumors on my pelvic bone and spine were causing unbearable pain, so some palliative radiation to the bones was set up. After the first session, I became very ill with nausea and vomiting. I ended up being hospitalized over the weekend for dehydration related to the vomiting.I was released on Sunday and felt good. On Monday I started the radiation again. Tuesdays radiation had me feeling queasy. On Wednesday's appointment I was fighting to keep from vomiting. This time I was in for a week. The radiation oncologist insists that the radiation couldn't be the cause, but I am not convinced. I have not returned for the remaining sessions.I have finally been "matched" in the clinical trial and started my new medication last week. So far there hasn't been any side effects, (other than fatigue, which could be caused by another med i take) and I feel great! I really hope the trial continues this way and the results are positive. Even though I feel good and things seem to be on track, I keep waiting for the other shoe to drop. I have advanced lung cancer, I'm not supposed to feel this good. I'm taking a new med that hasn't been approved for my cancer. Why am I not suffering from side effects? That's what my mind tends to occupy it's self with lately. I still have a few more weeks before my first scan on the first of June, and hopefully it will be good news, and hopefully I will continue to feel good with no issues. I'm really tired of changing treatments.Blessings to allMichelleSent from my SAMSUNG-SM-G890A using Tapatalk Tom Galli 1 Quote Link to comment Share on other sites More sharing options...
LaurenH Posted May 12, 2017 Share Posted May 12, 2017 Hi, Michelle, Thank you for the update! That is great news! Please continue to keep us posted. We're hoping for great scans next month! With gratitude, Lauren -- Digital Community Manager LUNGevity Foundation Tylalla 1 Quote Link to comment Share on other sites More sharing options...
Tylalla Posted May 16, 2017 Author Share Posted May 16, 2017 Thank you for your kind word for you Lauren and Katie. And Katie, I like your friend's wisdom about "borrowing trouble", and I will definitely keep that thought in mind.I'm on day 12 of the first 28 day cycle of the drug. 9 more days on the drug and I'm off for a week. I hope things continue to work out!Blessings,MichelleSent from my SAMSUNG-SM-G890A using Tapatalk LaurenH 1 Quote Link to comment Share on other sites More sharing options...
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