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Found 5 results

  1. Meant with the witch doctor today to review the nasty brew of chemicals I will be getting and the oncologist mentioned that the second and third doses is Cisplatin could be taken in pill form versus IV. Curious why doesn't everyone go with the pill? Nurse told me it was about 50 50. Her only reason why some do IV is the doctor doesn't trust them to take all the nausea drugs and chemo correctly. Thinking there must be another reason. Any advice? Peace Tom
  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 4.2cm 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?
  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 4.2 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?
  4. 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...
  5. Hello, I have been reading through discussions and posts on here for the last week and it has been a fantastic resource - so much caring and first hand experience and knowledge... it's really a great place. I am here because my father was diagnosed with Stage iv NSCLC with mets to the brain, back on October 25th. He is 67 years old and the diagnosis came quite by accident. He had fallen off of an unstable ladder while changing a light fixture and both his chest and head were impacted from the fall so an X-ray and CT scan were done to rule out breaks. Turned out that they found a lesion on the lung and a spot on his brain. We were all surprised as he had not been experiencing any symptoms. Please bear with me and excuse the lengthy write up - so much has happened in the 9 weeks ... He had a lung biopsy done week of October 24th and in the meantime, we started consultations for Stereotactic Radiation for the small brain tumour (as this needed to be treated right away). Nov. 4th - we met with his general oncologist to review the biopsy results only to be met with the news that they had not been able to gather a good enough sample in order to get the information required to put together a treatment plan. Since we were going to treat the brain first, the biopsy result was not so urgent (as he would not start any chemo until after the brain radiation. Nov. 16th - he underwent the stereotactic radiation treatment. He will go back for a follow up MRI on January 16th to see how the tumour was affected. Dec. 2nd - another meeting with his oncologist to review biopsy results and also review a recent chest scan that had been done earlier in the week. Biopsy confirmed NSCLC Adenocarcinoma (assumed to be wild type, but hey were still awaiting genetic testing results). The review of the scan showed very little change in the size of the tumour. Due to the imaging, the fact that my dad was still not experiencing symptoms and the fact that we were still waiting on some of the biopsy results, the decision was made to not proceed with any treatment, but to wait another two weeks until we had all results in. Dec.16th - Latest testing confirms that there is no presence of EGFR mutation but shows that the tumour does have a PDL-1 expression of greater than 50%, which meant that aside from standard chemotherapy, Ketruda was also an option for treatment. Although, not available under healthcare until a 2nd line setting. Again, seeing as Dad was not experiencing symptoms and it being so close to the holidays, we decided to wait until the new year to decide on the best approach to treatment. (Note: we were considering the private route for first line treatment with Keytruda). We were not due to see the doctor again until January 10th Dec. 20th - My Dad coughed up blood for the first time since being diagnosed. Dec. 22nd - Back to see the doctor to let him know that we felt it necessary to start a treatment right away and based on details from the previous appt., (treatment being more tolerable, outcomes a little more favourable) felt that Keytruda was the right approach and planned to access it via a private infusion clinic. The doctor recommended Cisplatin/ Alimta as a first attempt at treatment based on having the resources of the hospital team available to him and also knowing that Keytruda would be an option for 2nd line. Note: This is the only dr. appointment that I was not able to attend so I did not have the opportunity to ask all of the questions that I wish I could have. To Come- My Dad will have a first round chemotherapy treatment (of Cisplatin and Alimta) on January 6th. Based on my reading, I see that Cisplatin is of the more aggressive/ harsher/ less tolerated treatments. I would be interested in hearing of anyones experience with it. Has anyone here had Keytruda as a first line treatment and what was your experience with that? Also - it's been a long time since the lung cancer diagnosis ... without treatment - Has anyone else had a similar experience where treatment has been delayed due to other circumstances and what was your outcome? I wish you all a happy and healthy 2017. Thank you for your time and input. Stephanie
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