NSCLC stage lv - first line treatment didn’t work

[Strongmamaof3]

Hi I’m a 35 year old female, non smoker diagnosed with NSCLC in May. I was pregnant when I was diagnosed and so it was based off an MRI which found a mass in my right lung and swollen lymph nodes. During pregnancy my only treatment option was taxol and carboplatin. I was allergic to the taxol and so we decided to wait until I delivered a few weeks later to do treatment after a ct and pet were done. After the scans they also found a spot on my hip and some nodules in my left lung and that classified me as stage lv. I just finished 4 rounds of cisplatin, pemetrexed, and keytruda done every 3 weeks. My scans after round two showed stability and even decreases. My scans now after round 4 shows increases as well as a few more spots on my hip. My doctor is looking for a clinical trial that might match one of the mutations I have before we have another regimen. I am currently being treated at MSK in NJ but this week while we are on a break from treatment we have decided to get second opinions from jersey shore and UPENN. 
 

Just wondering if anyone has had any experience with this regimen of chemo not working or any other types of chemo not working and what they did after it. I have read one story on here that was been truly inspiring. Any help, insight, or advice is greatly appreciated. 

[LouT]

StrongMama,

Welcome to our forums.  There is a lot of information to be found as well as a number of our family that will share experiences with you.  My lung cancer was treated surgically so I have not firsthand experience with any chemo or immunotherapy.  But if you could tell us what your biomarkers showed folks will be able to better match their experience to your situation and offer counsel.  In addition we have a number of forums focused on various mutations and they can be found here.  I look forward to hearing more about  your journey and any updates you have.  Again, welcome.

Lou

[Rower Michelle]

Hi,

Although I live in KS, I was born & raised in North Jersey.  (Exit 150).   My stage IV diagnosis came as a complete shock as I had no known risk factors and was very ill by the time we finally got it all sorted out.  That was four years ago, I’ve been in remission most of that time after the ALK mutation was discovered.  
I had a similar chemo regiment- Carboplatin, Pemetrexed & Keytruda.  I had one round that showed the lung tumor shrinking but the lesion on my spine increased. I was also allergic to the chemo- in addition it triggered a all things maple allergy.  Fortunately the biomarker test came in just before round 2 of chemo.  The second opinion physician sent biomarker testing that was pretty sophisticated because the first round totally missed the ALK mutation.  
 

Do you know what mutation you have? Obtaining a second opinion is a great idea as that MSK location patients have reported mixed satisfaction and many end up at UPenn or Fox Chase.  
 

Lung Cancer is very sophisticated and going to a big name cancer center isn’t always the best choice, many physicians specialize in mutations.  You might want to consider contacting the Go2Foundation to learn about The Lung Match Program.  
 

I’m so sorry you find yourself here- there are a number of young mothers you can also learn from at www.thewhiteribbonproject.com.   For reasons unknown young women are being diagnosed with lung cancer- some are in their 20s.   Google around for the story of Emily Daniels in Denver.   
 

You might also find a dedicated Facebook page of young women too.  Hold onto your hope and leave no stone unturned.  There are many long term survivors and it’s up to us to stay on top of the research-there’s too much for the doctors to stay on top of.  Dr Google as we call it is not our friend.  
 

If you’re on Twitter you might want to follow Steven V Liu MD, Christine Lovly MD and Drew Moganaki MD.   Twitter is a pretty good resource for research.   Many pages are dedicated to biomarkers.   

Let us know how we can help and keep us posted.  You can do this…

Michelle
 

[Tom Galli]

Welcome here.

Michelle has sage advice on a second opinion and engaging with Doctors Liu, Lovly and Moganaki. You haven't given us information about mutations but I assume you have a laboratory analysis of your biopsy because you report combination chemotherapy including Keytruda--an immunotherapy drug. Your PD-L1 markers must have pointed to immunotherapy suitability. You report your tumors increased and sometimes those receiving immunotherapy (Keytruda) exhibit an increase attributed to swelling as the immunotherapy properties take hold.

Michelle's mentioning Drew Moganaki opens up another possible treatment modality. Drew is a radiation oncologist and uses precision radiation (explained here) as a form of treatment. It may be possible for a radiation oncologist to eradicate the spots on your hip and perhaps your lung nodules using stereotactic body precision radiation therapy (SBRT). This holds the advantage of eliminating those spots while chemotherapy treats cells in the blood and lymphatic systems. I progressed to stage IV and SBRT "fried" a troublesome tumor in my left lung which allowed me a long period of extended life (nearly 18 years). This is called treating multi-focal tumors and this method is not a standard of care. That does not mean it is not effective.

At this juncture, it is important to point out that there are two kinds of oncologists that treat us: medical oncologists and radiation oncologists. They use vastly different tools but both have very effective methods. If you seek a second opinion, include separate second opinion with a radiation oncologist about the possibility of treating multi-focal disease with precision radiation methods. A medical oncologist will likely not have insight into this method.

There is a lady who has stage IV disease in our Forum and her only treatment is SBRT. Here is a blog about her experience. 

Stay the course.

Tom

[Justin1970]

Hi

Sorry to hear about what's happening to you, I had cisplatin and vinorelbine combo I didn't see much difference in my follow up scans so please don't despair, I hope you get some good news soon 

Goodluck and take care Justin x 

[Strongmamaof3]

i appreciate all of the responses above, words of encouragement, and advice. I just finished with my appointment at MSK to discuss options and driver mutations. She said the team recommends Yervoy and Opdivo, two immunotherapy drugs because they have shown a higher success rate for people who have a higher estimated tumor mutation burden (TMB) and my number is 9.9 out of 10. The issue she said is getting this treatment approved through insurance. Has anyone had any success or failure with this treatment option? 

The identified driver mutation is CDKN2Ap16INK4A which currently has no approved treatment. Their is a clinical study for that and some other mutations I have but it is only in phase 1 and now it’s not necessary to consider phase 1. 
 

As far as radiation she said that we can do it at any time but since I am having no crazy symptoms besides a minimal cough (which could be from treatment) it isn’t necessary to do it right now. 
 

I am still going to two more doctors this week, which she is aware of and I have her blessing. It will be interesting to see their approach. 
 

If anyone has any thoughts to this it is appreciated! 
 

 

[Rower Michelle]

The insurance company!!! We all know too well.  The only course is to fight back.  First off your doctor can file an appeal and if your insurance is employer based then you will need a file a complaint with Human Resources.   Most of the time when HR gets involved the insurance company backs down.  If all else fails then file a complaint with the State Department of Insurance.  The treatment combo proposed is totally reasonable.  
 

If by any chance your insurance company uses a vendor called EviCore, we call it EvilCore and complaining on social mediapart of the wall of shame also works. It shouldn’t have to be this hard but sometimes is.  Generally it all works itself out so try not to stress too much about it   

 

[Susan Cornett]

Hi - 

The last treatment I had was in 2018 and was SBRT. I've been cancer free (as stage iv) for 4 years. That said, I'm going to respectfully disagree with the physician's wait approach for radiation. An old high school friend was diagnosed with stage IV after doctors found a spot on her hip. The radiation eliminated the spot and the pain she was having. Radiation can knock back/knock out the spot on your hip, perhaps even inhibit a return. 

Keep asking questions and pushing for answers. Also, definitely keep Michelle's insurance advice in mind. I'm a 31 year veteran of the industry; the squeaky wheel gets the grease. Always!

Please keep us posted and feel free to ask anything.