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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 4.2cm 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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JayGee,

Can you avoid more chemo? I restate your question to should you avoid more chemo? If it were me, I would not.  I note your statement "the tumor was more than 10% alive upon resection." This to me indicates your pre-surgical chemoradiation reduced the tumor size but did not kill the beast. I had pre-surgical chemoradiation also (30 rounds of conventional fractional radiation and 18 weeks of once weekly Taxol and Carboplatin). When my right lung was removed, pathology indicated the very large tumor in my right main stem bronchus was completely scarred down. I was to receive post surgical chemotherapy (Taxol and Carboplatin) but surgical complications made that impossible. After the complications were resolved, new metastasis were discovered in my remaining lung.

Lung cancer is so dangerous because it is persistent and frequently recurs.  I've experienced four in my treatment history. Here is the summary of an interesting report on lung cancer recurrence by stage. Your dose of adjuvant chemotherapy will likely be lower than that used to attack tumors. The adjuvant purpose is to attack cancer cells in the blood and lymphatic system and lower doses are effective in that application. I've experienced the misery of recurrence and therefore recommend you do everything you can to ensure one is not in your future. The taxol in reduced dose rate may not cause your hair loss.

I'd take the chemo.

Stay the course.

Tom

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Hi Jay Gee, 

 I understand wanting to avoid chemo. . You've gotten some good info and suggestions from Tom and from Mchelle on the other forum. I suggest two things; first, if you haven't received the actual report from the Tumor Board, so you can see their reasoning; second, go for the second opinion. Prior to my lung cancer I had a different one that was stage 3. I had chemoradiation and surgery and the tumor board differed on whether additional chemo was  needed. I was also in a "no data" situation.I sought a second opinion from an oncologist who had a lot of experience with my type of cancer. She agreed that there was no data, but she had a lot of experience treating this cancer and she advised chemo. I followed that advise and I'm glad I did because I've had no evidence of disease for 8 years.

Taxol can definitely cause or worsen neuropathy. I'd be more concerned about that than hair loss. I understand your reason for concern about hair, though. I had an acquaintance who had similar concerns.  Prior to losing her hair, she bought a high-quality wig that matched her hair color  and texture and got wig and  real hair styled  to match. So when she began to lose her hair she could pop on the wig. It worked pretty well for her.

 

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6 hours ago, Tom Galli said:

JayGee,

Can you avoid more chemo? I restate your question to should you avoid more chemo? If it were me, I would not.

Tom

Hi Tom,

Thanks for your feedback and insights. From your history, I see you have been through a lot. Congrats on your perseverance!

Before this diagnosis, I was healthy and active (and a non-smoker). Pre-surgery I went to the gym to prepare for my lobectomy.  No issues. I really had no symptoms despite my stage 3B diagnosis. The only evidence of an issue was a very slight wheeze - which I didn't even realize was there (my girlfriend only noticed it in bed in a silent room, sleeping). Barely detectable.

Apparently, the tumor had been growing for more than 3 years. An old chest x-ray from 2016 revealed a 2cm growth. The reason it was not detected back then was due to pneumonia which obscured the image. The pneumonia was unrelated to cancer - I was just overworked - and antibiotics solved it back then.

Fast forward 3 years, when I had a CT scan to uncover the reason for the "wheeze" and was told they saw a "mysterious mass". I retrieved a copy of the old x-ray and asked if it might be related to the 2016 pneumonia. They said, yes, it was possible the mass was just old scar tissue but ordered a biopsy. The subsequent bronchoscopy revealed a 5.5cm  tumor and a positive lymph node. What a shock!  And here I am...

After reading many stories here, I can see that I'm lucky even though it doesn't feel like it. I just want to get back to "normal" but don't want to ignore the seriousness of this illness. Mentally, I was ready to move on after surgery as I'm feeling about 75-80% of my old self now.  When I see my oncologist, I'll ask about the dosage of Taxol...won't get my hopes up but maybe it won't cause hair loss if the adjuvant dose is lower.

It's not about vanity - I really kept a positive outlook and powered though chemo, radiation, and surgery by convincing myself I was fine - there was no external evidence of my disease. Attitude can mean everything, and I was in the "F-Cancer" mindset. Looking in the mirror and seeing friends and family, I looked like myself. Maybe even better as I was going to the gym after the diagnosis to strengthen my reserves.

Taking Taxol and dealing with more side effects feels like going backwards, so I'm going to need prepare myself mentally. Job-hunting will need to be put on hold too, but what can you do. Thanks again for your encouraging words and advice!

-JayGee

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3 hours ago, BridgetO said:

...I suggest two things; first, if you haven't received the actual report from the Tumor Board, so you can see their reasoning; second, go for the second opinion...

Taxol can definitely cause or worsen neuropathy. I'd be more concerned about that than hair loss. I understand your reason for concern about hair, though..

 

Hi Bridget!  Thank you for sharing your insights - it looks like you've faced a similar decision in the past.  Also congrats on your 8 years of NED!

Good suggestion on getting the original Tumor Board report. So far, I just got a verbal description from my oncologist, not the written report. The Dana-Farber feedback was a "pseudo-2nd opinion".

It came after the local Tumor Board was split in their opinion, and my oncologist sided with the "observation okay" side...but then he ran my case past Dana-Farber to get their feedback. It was more informal as I believe my oncologist forwarded my case to a colleague at Dana-Farber for review, and then they had a phone call afterwards so there is no written report.

For a week, I thought I was good to go with just observation, then had my spirits drop when their opinion differed and more chemo was recommended.

I went to Yale/Smilo for another opinion to "break the tie" and they gave me a little bit of confusing feedback. During one phone call, they also suggested adding Taxol, but said I could do 2 more doses of the previous chemo treatment (Carbo+Alimta) if I wanted to avoid the Taxol+Carbo combo. Then in subsequent call, they reverted to the Taxol option as the recommendation. Ugh. I had already decided to "split the difference" and do the Carbo+Alimta option which I had already experienced this summer. I'm waiting to hear back for clarification (the actual oncologist didn't call me, it was his support team), but am pretty sure the recommendation will remain as Taxol.

Agree that neuropathy is also a concern - I'm already experiencing that in my feet, along with tinnitus which supposedly was caused by Cisplatin. Really wanted to avoid more chemo for a variety of reasons...but also want to avoid a relapse.  Wish there was data available.

I'm a guy, so the no-hair look is more acceptable and I won't be getting a wig, but appreciate your suggestions. It just delays getting back to normal and hurts my job search. The last 6 months have been life-changing and I just want to put it all behind, but may have more to endure.  Thanks again for you insights!

-JayGee

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Hi Jay.  I had an upper right lobe lobectomy at the end of February.  I was Stage 1.  I didn’t have any prE or post treatments.  I asked about a round of chemo to clean up anything they couldn’t see but the doctors wouldn’t do it.  If they would have offered it I would have had it done.  
 

I see that there was a mass on your lung from three years ago that was not identified.  The pneumonia thing sounds like a bit of an excuse. My father had a chest X-ray a little under a year before he was diagnosed.  He was diagnosed at Stage IV.  When his doctors went back to that XRay they pointed out the tumor that the previous doctors missed.  It was considerably smaller.  He unfortunately  passed away from his disease.  His widow won a pretty substantial lawsuit that he started when he was alive and was settled after he passed.  I am not a proponent of frivolous malpractice lawsuits but in my fathers case those months between the original XRay and his diagnosis could have been the difference for him.  You might at the very least want to let the doctors who read those original scans know what they missed.   This disease is often missed or assumed to be something else.  

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I'd take more chemo.

Taxol + Carboplatin isn't that bad. I had no hairloss.

I had 12 cycles of Folfox ( Oxaliplatin + Fluorouracil) for Stage 3 Colon Cancer in 2007. That was really nasty.

I counted them up and I have now done 26 cycles of 4 different chemo regimes.

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UPDATE: Thanks for all your feedback. This week, I saw my oncologist and made a decision - opted for more chemo, and took the middle ground of Carbo+Alimta. Two more cycles. It was a tough choice and came down to the wire.

I had already accepted that I probably would opt for Carbo+Taxol (the stronger option) but was waiting to hear back to get more details on the 2nd opinion at Yale/Smilow after the Tumor Board review.  Up until now, I had only heard from the Yale support team on what they said (2nd hand), but I had not spoken to the oncologist directly. He was at Tumor Board so I felt it was critical to get the info first-hand.

When he called me he said there was some debate on "observation vs chemo" during Tumor Board and ultimately they recommended additional chemo. When I asked about Taxol vs Alitma, he said that was not a big focus of their discussion and that "either would be fine". Wow. It seems like I got a different story each time I spoke to them. On two previous discussions with his team, they made it seem the the board recommended Taxol but when I asked questions they didn't have any context because they were not there. Very confusing!

So, after speaking with the Yale oncologist directly I felt more comfortable choosing Alimta instead of Taxol, and he validated that choice. Later that day I was scheduled to see my local oncologist in person to let him know my decision, and the Yale oncologist said he would call and share his opinion with my oncologist.

Fast-forward to my appt with local oncologist, and he reiterated the reasons for the Taxol recommendation. I told him about the Yale discussion, and in the middle of my appt we tried to reach the Yale oncologist so they could confer.

He took the call in private so I don't know what was said/debated but he came back and said either chemical would be fine and it was my choice. Taxol would be the first preference, Alimta the second, and observation last. Ugh. I asked about neuropathy (which I already have) and he confirmed that would be likely with Taxol. Sitting there feeling my feet tingling, I had to make a final decision and went with Alimta as I really just want to move on with as little additional damage as possible.

So, there you have it. There is no data on if more chemo will prevent a relapse, or whether Taxol or Alimta will make a difference or which is "better" - it's all a leap of faith. And mixed opinions. Well, I'm doing more chemo just in case. Keeping my fingers crossed. Thanks to everyone for all your input!

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On 12/10/2019 at 10:25 PM, Curt said:

I am not a proponent of frivolous malpractice lawsuits but in my fathers case those months between the original XRay and his diagnosis could have been the difference for him.  You might at the very least want to let the doctors who read those original scans know what they missed.   This disease is often missed or assumed to be something else.  

Hi Curt - thanks for the info and so sorry to hear about your father.  I did run the situation by a lawyer to see if not detecting the tumor 3 years ago was worth pursuing. 

In my case, I went to a hospital ER on a weekend (in 2016) when I had a fever and they did an x-ray and discovered pneumonia. They were not looking for a tumor. Everything cleared up with antibiotics and I was feeling fine after a couple of days and went back to work. Continued to feel fine and had no symptoms for years.

When the law firm considered the case, they reviewed the discharge papers and noted the instructions recommended getting another x-ray as follow-up. That clause protected the hospital legally. Most people don't bother getting an x-ray once pneumonia goes away unless they are still feeling symptoms.  So that was that, no case since I felt fine and didn't get more x-rays.

FYI, there was also a 3 year statute of limitations in my state so I was able to get the case reviewed just under the deadline. It was worth a shot. At least I have  some context on my tumor growth...it was 2 cm in 2016, and grew to 5.5cm in 2019.  At least it's gone now.

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From my experience, side effectswise, Gemcitibine,Taxol, and Alimta are all fairly comparable.

They all really do a number on haemoglobin levels.

Carboplatin has an affect on neutrophils and platelets though nothing like oxaliplatin.

Wayne

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