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Found 5 results

  1. I would like to request for help and support for my father who’s just been recently diagnosed with Non-small Cell Lung Cancer. We’ve been told we are at Stage 3B and has been prescribed with Tagrisso. We’re already one month in with this treatment and we are scheduled to have another PET scan on Jan 7, 2021 and meet with our medical oncologist on Jan 11, 2021. I have tried to read and absorb as much as I can regarding my father’s disease and found that given that my father is at stage 3b, I was wondering if we should have pursued surgery or a more aggressive treatment like chemo or radiation for him. I am also trying to understand because on his first PET scan besides his main tumor on right lung and some lymph node involvement, it also indicated the following: “Stable nodular right pleural thickening with hypermetabolic activity, suggestive of metastasis.” He does not have mets anywhere else besides what is in his right lung, lymph nodes and this pleural thickening. I have read and read a lot and most with pleural involvement say it’s Stage 4. But we’ve seen 2 oncologists and both did say Stage 3B. I guess what I think now is if we’re really stage 3B, we should be more aggressive with treatments if we can tolerate those. But I’m not really sure if we are staged “correctly”. I was advised to seek 3rd opinion from US (we’re based in the Philippines), I would love to do that but I’ve seen costs for remote consultation in Dana Farber and it’s USD 2000 - that’s equivalent to 1 month of Tagrisso here. It may seem much less than 16k cost of Tagrisso in US but taking into account our currency value, 2K USD is already a lot of money. So, I’m not sure if 3rd opinion from US can be an option for us. I’ve also read some studies wherein those on Tagrisso also receive local therapy. I’m not sure if this is an option we can pursue given that we’ve already started Tagrisso. I am just so overwhelmed and all I really want so badly now is to get the best treatment option for my father so we’ll have him for a long long time or better, he gets the best chance for remission or even cure. I’m not really sure what my question here is but if you have the same experience, and can give us much needed advice on next steps, or what to ask our oncologist next week with our 2nd PET scan results, that would be great. Thank you so much!
  2. After 3 weeks of research, my take on "standard" treatments for limited-stage SCLC is as follows: (surgery not possible) 1st-line treatment - Concurrent chemoradiation with Cisplatin + Etoposide (CE) + local radiation. Prophylactic Cranial Irradiation ( PCI) is called soon after treatment if complete or partial response is noted. 2d-line treatment - Original chemotherapy (CE) for relapse > 6 months. Topotecan chemotherapy for relapse < 6 months. A possible alternative to Topotecan is CE + Irinotecan chemotherapy but additional toxicities occur; individuals must be in very good health. 3rd-line treatment and beyond - Nivolumab (OPDIVO) or Nivolumab + Ipilimumab (YERVOY) or Pembrolizumab (KEYTRUDA) immunotherapy. Please note that I put quotes around the word standard. There are no standards after 1st-line treatment, only FDA approvals and typical recommendations. My personal opinion of Topotecan is not good based on literature comments about poor response rates. My hope is that my wife has a complete or partial response for greater than 6 months where Topotecan appears to fall by the wayside. For 2nd-line treatment < 6 months, I hope my wife's onc is thinking immunotherapy. Note that all post 1st-line treatments above appear suitable for extensive-stage SCLC. I'm not a doctor and my research may be flawed so please don't take my comments above as gospel. I believe I can now talk somewhat intelligently about "standard" treatments with my wife's onc. I will certainly put the burden on him to explain why or why not. I can always ask for a second and third opinion. 2 other things are fascinating to me - Stereotactic Body Radiation Therapy (SBRT) ... thx Tom ... and Lurbinectedin. However, there appears to be very little discussion on realistic use of SBRT and stage III SCLC (>5cm). It may be a hard sell to my wife's onc and radiation doctors. Lurbinectedin is only in trial stage. If you spot something that is incorrect or you believe the literature says otherwise, please comment. Any thoughts on the various treatments would be welcomed. Steve
  3. 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?
  4. 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?
  5. Is anyone struggling with the concept of Chemo? And the tremendous toxins they want to inject in my body....verses possibly changing lifestyle and going the nutrition route? Of course every family member and friend wants me to go Chemo/Rad. I had 2 nodules removed from my left lung and a lymph node that it apparently spread to... The lymph node resting so close to my vocal cord nerve that I developed a "laryngitis" that caused the need to determine cause when standard measures proved to fail to solve. I felt great, short of the noticeable voice impact, and still do after surgery, short of obvious surgical pain. And to the best of my knowledge... Cancer free... I guess that's not true for quite a while... But I am not interested in the horrible odds of "5 year survival" and to endure all that Chemo and radiation subject you to... for that?? I have been reading up a lot on nutrition and juicing and Organics and GMO and of course I asked my Oncologist if nutrition mattered... "Of course not"... I am meeting with my Thoracic surgeon this coming Friday, Oct 20...I have preliminarily/generically been diagnosed with Adenocarcinoma NSCLC. The mutation not yet determined, awaiting results. The surgery was a secondary change of mind, initially they were considering Chemo/Rad first then surgery, but changed direction when they... and They being the Cleveland Clinic in OHIO...didn't feel they had enough of a sample to determine Chemo route... The surgery was basically a wedge biopsy of the lungs having done a biopsy of the lymph node 2 weeks prior. And even though it's in the Lymph node, they are not referring to it as metastatic....yet I suppose... I'm sorry this may be all over the board...but the surgery has bought me time to look over solutions and I'm on info overload. Initially, the Oncologist was suggesting Cisplatin and ALIMTA, but this may possibly change with further diagnosis.... Heard Cisplatin is more worse than C I am scared that I'm adding insult to injury with Chemo. There are sooooo many side affects that all I see is misery before death. Has ANYONE found anything else ... that does not have such a barbaric approach to finding a cure or reversal of our dianosis'. I do not mean to offend anyone who is choosing Chemo/Radiation...
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