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Navigating a Stage IV Metastatic NSCLC Diagnosis

Here for Dad

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I have been reading through discussions and posts on here for the last week and it has been a fantastic resource - so much caring and first hand experience and knowledge... it's really a great place. 

I am here because my father was diagnosed with Stage iv NSCLC with mets to the brain, back on October 25th. He is 67 years old and the diagnosis came quite by accident. He had fallen off of an unstable ladder while changing a light fixture and both his chest and head were impacted from the fall so an X-ray and CT scan were done to rule out breaks. Turned out that they found a lesion on the lung and a spot on his brain. We were all surprised as he had not been experiencing any symptoms.  

Please bear with me and excuse the lengthy write up - so much has happened in the 9 weeks ... 

He had a lung biopsy done week of October 24th and in the meantime, we started consultations for Stereotactic Radiation for the small brain tumour (as this needed to be treated right away).

Nov. 4th - we met with his general oncologist to review the biopsy results only to be met with the news that they had not been able to gather a good enough sample in order to get the information required to put together a treatment plan. Since we were going to treat the brain first, the biopsy result was not so urgent (as he would not start any chemo until after the brain radiation. 

Nov. 16th - he underwent the stereotactic radiation treatment. He will go back for a follow up MRI on January 16th to see how the tumour was affected.

Dec. 2nd - another meeting with his oncologist to review biopsy results and also review a recent chest scan that had been done earlier in the week. Biopsy confirmed NSCLC Adenocarcinoma (assumed to be wild type, but hey were still awaiting genetic testing results). The review of the scan showed very little change in the size of the tumour. Due to the imaging, the fact that my dad was still not experiencing symptoms and the fact that we were still waiting on some of the biopsy results, the decision was made to not proceed with any treatment, but to wait another two weeks until we had all results in. 

Dec.16th - Latest testing confirms that there is no presence of EGFR mutation but shows that the tumour does have a PDL-1 expression of greater than 50%, which meant that aside from standard chemotherapy,  Ketruda was also an option for treatment. Although, not available under healthcare until a 2nd line setting. Again, seeing as Dad was not experiencing symptoms and it being so close to the holidays, we decided to wait until the new year to decide on the best approach to treatment. (Note: we were considering the private route for first line treatment with Keytruda). We were not due to see the doctor again until January 10th

Dec. 20th - My Dad coughed up blood for the first time since being diagnosed.

Dec. 22nd - Back to see the doctor to  let him know that we felt it necessary to start a treatment right away and based on details from the previous appt., (treatment being more tolerable, outcomes a little more favourable) felt that Keytruda was the right approach and planned to access it via a private infusion clinic.  The doctor recommended Cisplatin/ Alimta as a first attempt at treatment based on having the resources of the hospital team available to him and also knowing that Keytruda would be an option for 2nd line. Note: This is the only dr. appointment that I was not able to attend so I did not have the opportunity to ask all of the questions that I wish I could have. 

To Come- My Dad will have a first round chemotherapy treatment (of Cisplatin and Alimta) on January 6th. Based on my reading, I see that Cisplatin is of the more aggressive/ harsher/ less tolerated treatments. I would be interested in hearing of anyones experience with it. 

Has anyone here had Keytruda as a first line treatment and what was your experience with that? 

Also - it's been a long time since the lung cancer diagnosis ... without treatment - Has anyone else had a similar experience where treatment has been delayed due to other circumstances and what was your outcome?

I wish you all a happy and healthy 2017. 

Thank you for your time and input. 


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Hi Stephanie.  I was diagnosed with Stage IV in February of this year with mets to the thyroid.  I had an upper left lobectomy on February 22nd and started Cisplatin/Alimta in March.  I had four courses of chemo and I tolerated the side effects fairly well.  My issues were nausea, neuropathy, fatigue and tinnitus.  I had chemo on Fridays, with a side of steroids, so I usually felt good until Sunday afternoons.  My oncologist did a fantastic job of managing my nausea by giving me 2 different meds to alternate.  I did not lose my hair with this treatment.  I have not had any experience with Keytruda but I know that others on this forum have and will likely share their experience.  

Always ask questions of your father's providers.  Ask until you get answers.  Keep us posted and let us know how he, and you, are doing.  

Happy 2017.

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Welcome here. This response will be brief because I am visiting family and constrained to an iPhone keyboard. 

To your Cesplatin - Alimta and Keyteuda treatment questions: the former is a first line (first treatment) "standard of care." That means it is proven to have the best response for people with adenocarcenoma as a first treatment. Keyteuda is a new immunotherapy drug and again has been shown to be most effective as second line (second treatment). 

You expressed concern about Cesplatin side effects. They can be harsh but there are ways to counter them. They are cyclic and arrive the same number of hours after infusion and if you chart their timing, your dad can start mitigating medication slightly ahead of arrival. This approach lessons side effect troubles. 

Treatment delay -- I've had more than a few. It took me about a month of diagnostic delay and treatment design. Your dad is slightly more than two.  After a diagnostic reoccurrence, we delayed treatment for a month to participate in a booked vacation. This delay did not effect my outcome. 

Your dad is in the system now and treatment should settle down to a schedule. More when I can use a keyboard. 

Stay the course. 


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Hi Stephanie

I was first diagnosed with stage 3b NSCLC squamous cell in May of 2014. My first treatment was Cisplatin along with Etoposide. The main side effect from the Cisplatin I experienced was fatigue, and neuropathy in my hands and feet. I was given steroids before each treatment to stop the nausea, and had some prescription meds at home, though I didn't use them that often.

I did develop Type 2 diabetes during treatment due to the steroids which raise blood sugar levels. I also developed cataracts (I was only 55) in both eyes and have had cataract surgery on both eyes).

The neuropathy is still hanging around, though that may be due to the fact that I had more chemo (Carboplatin and Taxel) after my cancer came back after remission.

I am currently stage 4 metastatic with mets to my spine and pelvis, and my kidney, some lymph nodes, and two nodules in my lung again. I was on Opdivo when I had to change oncologists due to insurance. My next Dr ordered gene testing and it turned out I did have an abnormal EGFR mutation (along with a whole bunch of other strange mutations), so I was put on Tarceva. I didn't tolerate it and it didn't work and I looked for a new doctor.

My new oncologist ordered PDL testing and it showed a very strong expression so this Friday I will be starting Keytruda. I really hope it works well.

I hope what ever treatment your dad gets will be very successful!

Sent from my SAMSUNG-SM-G890A using Tapatalk

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Thank you for your responses. 

I am very thankful to have found this forum. 

Tylalla, best of luck to you with starting the Keytruda. Please do keep me posted on how you do. 

Happy New Year to all. 


On December 27, 2016 at 3:57 PM, Tylalla said:







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Hi, Stephanie,

Welcome to LCSC! I am happy that you've already connected with some of our most active members. This is a great forum to ask questions and share experiences. Here is a link to LUNGevity's Lung Cancer 101 website, which provides comprehensive information about types of lung cancer and treatment options: https://www.lungevity.org/about-lung-cancer/lung-cancer-101/types-of-lung-cancer/lung-adenocarcinoma. Please keep us posted on your dad's MRI results.

Happy New Year!

With gratitude,

Lauren Humphries
Digital Community Manager
LUNGevity Foundation

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  • 1 month later...

The MRI results showed that the radiation was effective, and seem to have stopped the progression of the brain tumour. And there aren't any news spots!

Dad has;t done too well on the Alimta/ Cisplatin though. The treatment made his incredibly fatigued, so much that he was hardly able to get out of bed. After the first round, Onc reduced the dosage for round 2. The side effects have been a LITTLE better, but he is still incredibly tired. 

We went for a meeting with the doctor today and dad went for an X-ray before the appt. so that we would have something to look and and discuss. 

X-ray showed that the tumour had grown or at least that is what is presumed given that dad's lung had collapsed. based on this, the doctor is confident that the chemo treatment is not working. 

he is going to start keytruda next friday and hoping for some better results from that treatment. 

Tylalla - how is the Ketruda treating you? 

Best wishes, 



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Hi Stephanie

So far the only side effects I've had have been some fatigue and some constipation. It is a much kinder treatment than chemotherapy. I pray things go well for your father.


Sent from my SAMSUNG-SM-G890A using Tapatalk

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