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Found 3 results

  1. 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?
  2. 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?
  3. I do believe that Taxol was formulated by the devil's pharmacist! I had six "light" rounds of Taxol and Carboplatin during radiation in April and May, and I've had two additional full-strength doses of chemo since mid-June. I'm not giving up, but after these last two rounds of chemo, I certainly understand why people suspend or quit treatment. Super Doc warned me that it would be bad, but he said it wouldn't be as bad as last year's cisplatin/alimta combo. I love Super Doc but he lies! Taxol brought some of the usual side effects (fatigue, neuropathy, tinnitus) but it also brought total hair loss, insomnia, GI issues, steroid bloat, weight gain (!!) and a couple of others. It has just about wiped me out mentally and physically, and that's tough for me to admit. I know that there are others who have fared so much worse and I try to always keep that in mind. That said, I'm finished with chemo and will scan again in a couple of weeks. Ready for another reprieve from treatment and resuming life 90 days at a time between scans.
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