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74 year old male, Diagnosed early June with NSCLC Adeno Stage 3 B, negative RET, ROS 1, BRAF, EGFR, ALK, PD-L1 0%. Review of imaging (PET and MRI) showed extensive tumor in the right lung, supraclavicular nodes on the right. This is worrisome for Stage IIIB disease. However, it is too extensive for concurrent chemoradiotherapy. Malignant neoplasm of overlapping sites of right lung. 

 

I call my case plain vanilla because of the lack of PD-L1 positive and target therapy but I am sure many lung cancer patients are in the same boat.Will start on first cycle tomorrow (Ketruda, Carboplatin and Alimta). Cycle = one week on, 3 weeks off,.Second cycle in 4 weeks.Then CT scan and Oncologist decision  how to proceed.

I don't know what to expect but choosing between  hope and  resigning to failure is an easy choice. I will go with the first.

So far I am very impressed with my medical team. They are very organized and prepared.\I will have my blood work done today (one day early). Also I am already started on some medication to minimize side effects. Medication prescribed Prochlorperazine 10 mg (nausea), Dexamethasone 4 mg (inflamation), Folic acid, Ondansetron ( also for nausea).

Sorry for the boring details but I want to provide new comers with my complete story down the road. I am very grateful for all those who helped educate me since I first joined.

I feel lucky and blessed to have found this site and hope I can do the same for others.

Gary.

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Gary-

I'm happy to hear that you have a plan of attack.  My mom did the triplet for 6 sessions before going onto keytruda alone.  The 6 sessions reduced her tumor to where it was unable to be seen and she could have her tracheal stent removed (her tumor was on the back of her trachea).  People have seen great outcomes with this triplet now that it is a standard of care for those with our without PD-L1.  I hope this does the trick for you too!

Take Care,

Steff 

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Steff: With encouragement from kind people like you, I feel the wind at my back. Thank you  always for your kind words. They mean a lot. I am really happy for you and your mom and I will take any number of sessions if it works.

I finally got my Molecular Pathology Final Report today. To my surprise there is only mention of PD-L1 22C3  (< 1%} and ALK D5F3 (negative). There are no mention of KRAS, MET, ROS1 and so forth.  I plan to ask my oncologist  of course and can only assume those tests are not important at the time being.

Gary

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My side effects from the triplet: The 3rd day brought in a constant dry cough that won't quit. I am up to 6 mucinex per day and starting to fee a slight relief. The cough brings with it a very unpleasant rib cage pain. I also  lost my appetite completely after enjoying some good meals while the steroid was still in effect .Oddly enough I can't sleep  at night but manage to do so during the day. All and all I don't have it too bad  compared to what I read on the forum so I am thankful and aware this is a marathon .

For those who discovered a better way to fight the cough, please share the wealth.

Today is the 6th day after chemo and i am sitting here wondering which one of my unwelcome friends will give up first. Regardless I am staying the  course.

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Hi Gary,

I had one of those terrible coughs that the triplet exacerbated.  Sleep was even more elusive.  It was a side effect from the Keytruda.  Two things kinda sorta  helped- an opiate based cough syrup administered every four hours (hubby did the 2am dose) and a wedge pillow.  It elevated my chest and proved enough relief to sleep.   Do let your doctor know about the sleep and cough, they will have some type of magic cocktail available.   Let us know how you do.  
Michelle

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  • 2 weeks later...

Well it is that  time again. Tomorrow  I will have my first scan after 2 treatments. It feels like an eternity since I first joined or better yet I feel like an experienced pro. I was a scared puppy when I joined and become a concerned  but hopeful geezer. I had some very difficult days from side effects after the first treatment, cough, loss of appetite, loss of sleep, excessive weight loss, headaches and so forth. Every time I was ready to give up I reached out to the board for help and got energized again by "stay the course" or "my mom did very well on the same treatment" or " now I moved to the maintenance phase". Strangely enough the side effects from the second infusion were very mild. The cough was minimal and thanks to medication I am eating well and even gained 10 pounds.   I almost feel guilty for my good fortune. Let's pray and hope the trend continues.

When I read posters describe their tumors size as 7mm ,  12mm or 3cm I can't help but refer to mine that reads:  "Malignant neoplasm of overlapping sites of right lung" meaning the tumor overlaps the boundaries of two or more categories or subcategories and its point of origin cannot be determined. In other words, it can't even be measured in dm. The CT scan shows red cloud formation  wall to wall in the middle of my lung. While I never bothered to measure  the length nor do I care (because I was still diagnosed as stage IIIB) ,  I am very intrigued to see the changes, if any, but frankly I am not scared because I remain hopeful that a solution is out there for all of us so stay tuned.

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Hey, Gary, I'll look forward to hearing a good report from your scan. I appreciate your sharing about your experience with the triplet and side effects. I know everyone responds differently, but it's still helpful to hear what strategies worked for different people. 

Hopefully next week we can nail down my treatment. I have an appointment with oncologist on Tuesday (presumably to discuss results of molecular studies). I have a consult tomorrow with a radiation oncologist at MD Anderson-Cooper (it always makes me smile when I see "Anderson Cooper"--it's at Cooper Hospital in Camden), where I've been having my treatment since my initial diagnosis/surgery in 2017. A week from Friday I have a consult with a radiation oncologist at Penn Medicine. They have a bigger radiation oncology program there, including proton therapy, so it will be good to get another take on things, especially since I should have all my test results by then.

I'm anxious to get going with my treatment but overall glad I won't be starting till after my son's visit next week. Both kiddos driving out this weekend from Colorado--son is staying for a week to visit and my daughter is gonna stay with me at least through the end of the year. 

Good luck with your scan and keep us posted! Sending positive vibes.

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Thanks so much, Gary, for sharing your experience along the way.  I am expecting to learn what my treatment options are on Monday- supposedly, molecular results will be in before then, although have only seen PDL-1 (40%) so far.  If no useful mutations, I will likely be on the same path that you are.  
 

Keeping everything crossed for a great scan tomorrow!!!

Susan

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Hi all,

Looks like we are all in the midst of receiving treatment, starting treatment and/or finding out what the plan is.  Good luck to everybody!

I have a question that I feel I should know.  When you refer to a “triplet”, is it any combo of chemo/immunotherapy or specific drugs?  I had my first treatment of Carbo/taxol and Keytruda last Friday. Is that considered a triplet?
 

Gary - glad to hear that your 2nd infusion side effects were mild compared to the 1st? I also find it interesting that they want to do a scan after infusion 2.  My ONC here wants to do one after #2, but the ONC at the Mayo Clinic wants to wait until after #3.  He said he wants to look at SBRT after the 3rd.  
 

Sending everyone positive thoughts going forward ...

We can do this! Many before us have,

 

Babs

 

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Babs: What I call triplet consists od 2 chemos and one immunotherapy drug (Ketruda, Carboplatin and Alimta). I called it triplet for short.   I actually don't know how important to have a scan after just 2 applications. Maybe it differs from case to case and drug to drug. Regardless I am already scheduled for a third infusion.

 

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LexieCat: I am sure you have a fine team and you will be put on the fastest and safest track to getting better. Please post what ever new coming your way.

Suzan:  My oncologist refused to put me on any treatment till the mutation test results were known. Not all of them but especially ALK. Some of them preder to put you on the pill first if you qualify.

Good luck and tnx.

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Hi Gang,

Yes Gary is correct, the medical community actually refers to the triplet for Carboplatinum, Alimta, and Keytruda.   Gary's doctor was very wise to hold off on the treatment until the biomarker results were in.   For ALK this is critically important as the targeted therapy (also called a TKI) can not be administered with immunotherapy. It can cause a severe adverse reaction, including death.   Sadly, one of the members of the ALK community had a doctor that didn't understand this concept.   I really do appreciate the information shared in our community here, as there are lots of things doctors don't tell you.....  

Good luck with the scans!  Carry on... 

Michelle 

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