Choosing Treatment for Dad (Stage IV Adenocarcinoma)

[MimiP]

Hello,

My dad (66) has just been diagnosed with NSCLC Stage IV Adenocarcinoma. He's being treated at Memorial Sloan Kettering in NYC. He has a 3cm mass in his right lung, with metastasis on his T5 spine, iliac bone, two lymph nodes in his right lung, and one lymph node above his clavicle. A brain MRI revealed a "wedge shaped, cortically based, enhancing lesion within left parietal lobe", though they aren't sure if it's an old blood clot or metastasis so we will get another scan next month. We will also see an ENT next week to investigate "asymmetrical thickening and hyper-metabolism" of his right vocal cord 😔... He is otherwise fit for his age and no other health conditions.

After a biopsy of the enlarged clavicle lymph node, no genetic mutations were found. They will continue testing that tissue sample for mutations but didn't sound hopeful of finding anything because he's a former smoker. He's not a candidate for surgery due to the advanced stage, and they didn't offer to include him in any clinical trials due to the uncertainty of the MRI findings. 

Below are the two treatment protocols that have been offered as first line, I'm searching for insight here from anyone who's endured similar treatments themselves or via loved ones:

Treatment option 1) Pembrolizumab + Pemetrexed + Carboplatin // Two Chemo + One Immunotherapy 

Treatment option 2) Nivolumab + Ipilimumab + Chemotherapy (not sure which chemo drug is being recommended) // Two Immunotherapy + One Chemotherapy

He will receive radiation treatment on his spine and iliac bones for pain relief. Radiation therapy on the other metastasized areas was not offered. I don't understand why radiation on those areas (lung mass and lymph nodes) wasn't offered.

Thank you in advance for reading and any input. 

[GaryG]

Hi and welcome to our blog.  I am 74 and was diagnosed with stage 3 inoperable Adenocarcinoma NCLS. I was devastated for not having mutations but my oncologists and the helpful friends on the board  put me at ease because they had success being treated with option 1 that you mentioned. Of course we are all different but one should not loose hope. As for radiotherapy my oncologist explains that the placement of the tumor in the long  and/or the size does not give them a clear target to radiate. However if the tumor shrinks after chem treatment that options opens up.

You are at a great cancer center so on't loose hope,  be positive  and hopefully things will workout.

[Steff]

Hi MimiP,

I'm sorry to hear about your dad's advanced stage diagnosis.  I understand that he had been tested for various mutations, but has he had his PD-1 or PD-L1 levels tested?  This can be an indicator of how well the cancer might respond to immunotherapy.  However, first line treatment for advanced stage is often immunotherapy and 2 chemos.  My mom was on the same treatment protocol for her NSCLC recurrence - Keytruda/Pembrolizumab + Carbo + Alimta/Pemetrexed.  This treatment "cocktail" is often referred to as a triplet.  My mom had very good results with this treatment, as had many others no matter what their PD-L1 percentage is.  You can find my documentation of her first year in treatment  here.

She received 6 infusions of the triplet and then went on to Keytruda only for about 1 year.  She did have some side effects from Keytruda (rash, GI issues, fatigue) and the usual side effects with chemo.  My mom saw immediate results, but that isn't always the case.  I am a big fan of the triplet and know it to be effective with many advanced stage NSCLC folks.  

Hope this helps a bit.

Take Care,

Steff

[MimiP]

Thank you Steff and GaryG! 
 

We just got a call from the oncologist. They said that new results came in from his biopsy: an EGFR mutation was found, so they are going to give him Tagrisso as a first line treatment. They said if it helps him, they'll give him Tagrisso + chemotherapy which is part of a clinical trial.
 

They said he can't start the Tagrisso until he does his radiation treatment on his spine for the pain so I'm hoping those treatments move along quickly. 
 

Thanks again for reading and sharing. 

[Rower Michelle]

All sounds like good news!   You might want to check out Facebook to join the other EGFR communities available to learn more.  You might actually find someone else who has enrolled in the trial as well.   Time to get the show on the road.  Hopefully, your Dad will be back to his normal daily activities very soon.   

[MimiP]

Thank you Rower Michelle. I just requested access to the EGFR facebook 👍 

[MimiP]

Below is an in-depth update in case it helps anyone else embarking on a similar journey: 

I joined the EGFR groups on Facebook and couldn't recommend those enough to anyone else with EGFR mutation trying to navigate their treatments and discussions with doctors! 

The doctor prescribed Tagrisso and is strongly in favor of this as a first line treatment as opposed to using 1st or 2nd generations as first line. The reasoning for this is over my head but I understand it has something to do with a) the potential chance that my dad has mets to the brain given his uncertain MRI results, b) the 50% gamble of my dad developing a T790 mutation following a 1st or 2nd generation TKI (again, very much over my head so apologies if this is inaccurate). I found this video on Youtube of Dr. Helena Yu (a colleague of our oncologist, Dr. Jamie Chaft) explaining all of this very helpful: https://www.youtube.com/watch?v=6J164sofapU 

After a liquid biopsy following the initial 2 weeks of Tagrisso treatment, if my dad still has the EGFR mutation in his DNA, the doctor suggested this means his cancer may be more aggressive and less receptive to Tagrisso on it’s own, so she would suggest starting him on the chemo + Tagrisso clinical trial. Here is a link to that trial: https://clinicaltrials.gov/ct2/show/NCT04035486

My dad will receive Xgeva shots with the Tagrisso after he receives radiation. I pray this protocol helps his pain, nothing he takes helps! He has two lesions on his T5 spine. In addition to ibuprofen and acetaminophen, he’s tried oxycodone, steroids, gabapentin… Nothing really works except sometimes 800mg of ibuprofen. I also give him THC and CBD oil sublingually, and CBD oil topically, which helps a bit (if anything, it helps calm his anxiety).. Someone on the FB group suggested we stop the ibuprofen before Tagrisso in case it effects is liver enzymes. 

One of my biggest fears is the potential for the NSCLC to transform into SCLC. Regardless of which TKI generation treatment is given, it sounds like this is a risk associated with having EGFR. The doctor said there is a small study at MSK currently that she would try to include him in if this happened, and that the results of his pending Tumor Genomics test would help shed light on the likelihood of this happening with him.

I’ll continue updating as we move along, and searching for others participating in this chemo + Tagrisso study 👍

Thank you

[gem]

Hello MimiP! 

How is your dad doing? I hope he is doing good and taking his treatments very well. 

My dad has also been recently diagnosed and has been taking Tagrisso for a month. We’re going in for his 2nd CT/PET scan to see how he is doing after 5 weeks on Tagrisso.

I am very interested to know how his liquid biopsy went and if you have taken the path of chemo+tagrisso. Usually I’ve read people take chemo after progression and remain on Tagrisso to prevent brain mets  I did not know 2 weeks on Tagrisso could eliminate EGFR mutation, or have I misunderstood it?

Looking forward to your update! Thanks!