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Hello fellow survivors and caregivers. I have a difficult decision to make and would appreciate your feedback.  Can I avoid more Chemo?  Advice appreciated, details below...

This summer I was diagnosed with NSCLC lung cancer (Stage 3B), and I've since been through chemo, radiation and successful surgery to remove my upper left lobe. 

My oncologist initially said he would be okay with just doing observation (CT scans every 3 months) as a next step rather than adjuvant chemo after my surgery.  He said the Tumor Board was split on their opinion of doing more chemo vs observation, and I was within "national guidelines" to just observe since I was re-staged to 2A after surgery.  I'm 53, never smoked, and am generally fit and healthy.

My oncologist then shared my case with Dana-Farber. They recommended adjuvant chemo (2 treatments) with Carboplatin plus a new chemical I did not have before - Taxol - which will have more side effects that what I've experienced (hair loss) and would set me back in my recovery in some ways.  I'm not currently employed and aiming to get back in the job market so losing my hair and looking like a cancer patient is not going to help. See below for details on my case:

Diagnosis pre-treatment (June 2019):

  • 5.5 cm tumor in my upper left lobe - Adenocarcinoma NSCLC.  Growing for at least 3 years prior to my bronchoscopy.
  • Lymph node detected with cancerous cell during bronchoscopy
  • MRIs and PET scans were negative - no spreading outside the lungs

Treatment completed (July-August 2019):

  • 3 doses of Chemo total.  2 doses of Cisplatin + Alimta/pemetrexed, and 1 dose of Carboplatin + Alimta/pemetrexed
  • 30 rounds of radiation - 54 Grey Doses total. Aimed at tumor and lymph nodes.

Surgery completed Oct 7th:

  • Upper left lobe resection along with removal of all local lymph nodes. VATS technique. Went well.
  • Results: Tumor margins were clear. All lymph nodes negative. Tumor shrank from 5.5 cm to 4.2 due to treatment.

Genetic testing: EGFR Exon 20 mutation found, no others present.

Aftercare - Dec 2019: Oncologist says it's "my option" if I want to get more chemo "just in case" it helps a prevent recurrence.  However, he can offer NO data on if more chemo will help or not. It's a leap of faith. The reason for switching to Taxol is my tumor only shrank from 5.5 cm to 4.2 cm after chemo/radiation. Also, the tumor was more than 10% alive upon resection.  

I already have side effects of tinnitus from the Cisplatin (which is why they switched me to Carboplatin for the 3rd cycle), plus neuropathy in my feet.  I really don't want to suffer hair loss (which Taxol causes) as I'm looking for a job and don't want to look like a cancer patient while interviewing. I believe 2 treatments of Taxol+Carboplatin would set me back 4-5 months before I get back to "normal". Plus it could increase my existing neuropathy.

TLDR I want to get back to my normal life and avoid additional chemo (especially Taxol) if possible. I also don't want to relapse, but my oncologist says there is no data on the effectiveness of doing more chemo. It's my option. I need to decide soon - it's about 2 months after surgery.  What would you do?

 

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Hi Jay Gee,

Welcome to the Forum, it’s nice to meet you. It’s always hard to make these decisions in the absence of data.  Fortunately we are on the cutting-edge of lung cancer treatment with more advances in the last three years than in the last fifty years.  
 

The EGFR Exon 20 is fairly unusual and I understand the rationale for the proposed treatment plan by Dana Farber.  Have you considered a second opinion at MD Anderson where they are running Exon 20 clinical trials as part of their “Moonshot Program”?  
 

Another resource is to contact the GO2FOUNDATION in San Francisco where they can put you in contact with the Nation’s leading EGFR experts.  I’d be inclined to possibly get a third opinion given how quickly the science is moving.  I suspect there might be some other options available, it’s certainly worth your time to explore before making a decision about additional treatment. 
 

Let us know how it goes. 
Michelle

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Hi Michelle!  Thank you so much for your feedback. Appreciate the info on the "Moonshot Program". Not sure I qualify yet since technically I've been re-staged to 2B. While the tumor had the Exon 20 mutation, it's been removed along with my upper left lobe and I currently have no traces of cancer (it's only been 2 months).

Thanks for the info on the GO2FOUNDATION. I'm on the east coast (CT) so can't easily see them, but it I ever relapse then I think I qualify for targeted therapy. It's all been a bit confusing - when I saw my oncologist he said that any other therapies would only occur if I relapse, otherwise there is nothing to "target". The additional adjuvant chemo is a "just in case" to clean up any microscopic traces post-surgery. 

After initially being told that observation was okay, my oncologist ran my case by Dana-Farber and they recommended 2 more doses with a Taxol+Carbo combo.  I did get another opinion at Yale/Smilow and they agreed, but seemed to give me some contradictory info.

In one conversation, I was told if I didn't want to do the Taxol/Carbo combo, I could do 2 additional doses of my last treatment (which I tolerated okay) which was Carbo+Alimta.  I was all ready to choose that "middle ground" option - which would not cause hair loss.  Then in a subsequent conversation they said since my tumor didn't shrink dramatically or die with that combo, they prefer switching to Taxol.  Ugh.  If I have to I will, but the opinions seem to shift and it's doing a number on my emotions. 

I'm seeing my oncologist tomorrow and unfortunately leaning towards doing the more toxic Taxol treament...not sure if it's avoidable.  Thanks again for your feedback!

Best,
JayGee

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On 12/9/2019 at 9:18 AM, Rower Michelle said:

Let us know how it goes. 

Michelle

Hi Michelle - I provided an update on my chemo decision in another thread on the forum. To avoid duplication, I'll paste in the link below.  Basically after a lot of back-and-forth and mixed opinions from various oncologists and their support staff, I'm going to do 2 adjuvant doses of Carbo+Alimta.  See below for details:

https://forums.lungevity.org/topic/46448-advice-needed-chemo-or-observation/?tab=comments

 

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