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Found 4 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. My name is Eugenia and my mom, Theresa (Terry), has very recently been diagnosed with Stage 4 Lung Cancer. She is only 72 and stopped smoking over 40 years ago. She worked in a laboratory doing cancer research for 40 years before retiring 10+ years ago and was handling chemicals for cancer research her entire career at NIH and Human Genome in the DC Area. She started having back pain in October and it took almost 2 months to determine what was wrong. First they thought she had pulled her back picking up her grandson, my 10 month old son, and the doctors gave her muscle relaxers. Then, the doctors thought she had pneumonia and she was given antibiotics. Then, she went back to the hospital because the antibiotics were not working and they did a CT scan and found a mass in her left lung. It has been a long and awfully slow process and after multiple hospital visits, biopsies, scans, etc. and us pushing things along, they found that the cancer spread to her bones - spine, chest, and head. Her spine is covered, which is what is causing her back pain but she is now on pain medication to keep her comfortable and help her get stronger. She starts cancer treatment next week and she has a positive state of mind so far - she is ready to fight this! What can I do to help her stay positive and get healthy and strong? I live in DC but was there for 2 weeks over the holiday helping take care of her and my dad and working with doctors to come up with a plan quickly. She is being treated at Zimmer Cancer Center in Wilmington, North Carolina and they live one hour south. The oncologist wants to treat her with 3 drugs - 2 chemo drugs plus keytruda - every 3 weeks x 4 rounds. We are still waiting for her gene marker testing to come back to know if there are other drugs that might work better for her situation. Does anyone know if Zimmer is a reputable cancer center? Should I be looking for a second opinion or clinical trials at a research institute and if yes, how do I go about doing that? What alternative treatments, food, medicine, should we be considering? I don't want to miss any opportunities for treatment and will do anything to help her fight this. Thank you for any advice you might have for me and my family. Happy New Year :)
  4. "Hindsight is 20/20!" "You know, in retrospect..." "Looking back now, I'd..." "If I had it all to do over again..." "If I had known then what I know now..." Chances are, if you're a caregiver, you're guilty of saying at least one of these catchphrases at least a little bit often. I know I am. A LOT a bit often! Why is that? Why is it that we never feel prepared to be a caregiver, and always feel like a little of our well-earned wisdom would have been useful at the beginning of our experience? Here's what I think: our loved one's diagnosis knocks us for a loop; we stumble, we grasp, we stand back up, we take action, and then we can usually coast for a while--and occasionally, the cycle repeats. But: we were never given a chance to study for this test. We weren't given a warning. We catch the curveball using the only skill sets we already have, and we run with it. Stumble: What the **** just happened? Where do we go from here? Grasp: Get our heads back in focus, get info, get a plan. Stand back up: We go through our days--every day--as best we can. Somehow, stuff gets done. If it doesn't, we move on. Take action: Take the info we found and start acting on the plan: a testing plan, a treatment plan, a scheduling plan, a support plan, any plan. Coast: The plans in place gradually become blessedly routine. The less work we have to do to establish the plans as the plans settle, the more surprised we are that our days do still revolve--but they just revolve around something we never would have expected. (This is sometimes referred to as the "new normal.") Any caregiver is familiar with this basic framework. But: Finding the way that this paradigm can shift and meld onto any particular family, situation, or lifestyle? There's the rub. That's the part that's not so simple. The GOOD news is: that's the part where other caregivers are the best and most helpful resource. What calendaring app do you use? What foods help with nausea? What do you say to your kids? How do you organize medical information? Which chores should I prioritize? How can I draw boundaries with my family? How can I ask my friends for the support I need? How can I communicate better with my loved one's medical team? Where can I go for reliable supplemental information? How do I find self-care time? And, by the way, what IS self-care? At the end of the day, one thing is patently obvious: with most new life experiences, you may not even know what resource/help/knowledge you need (or needed!) until you are well on your way. Caregiving is a prime example. To that end: the best and most helpful source--the reference with the breadth and depth of life experience to draw upon--are your fellow caregivers. LUNGevity has TONS of ways to connect with a network of folks with similar experiences. Just to name a few: the LUNGevity Caregivers Facebook group (http://facebook.com/groups/1009865522379898), the LifeLine mentorship program (http://lungevity.org/for-patients-caregivers/support-services/peer-to-peer-mentoring), and the Caregivers message boards here on the Lung Cancer Support Community (http://lungevity.org/for-patients-caregivers/support-services/lung-cancer-support-community). (Not to mention the Caregiver materials library at http://lungevity.org/for-patients-caregivers/caregiver-resource-center). Also: LUNGevity hosts the only regular caregiver-focused Twitter chat in the lung cancer advocacy field. We meet on Twitter under the hashtag #LCCaregiver every first Wednesday of the month, starting at 8:00pm Eastern time. This is a sort of live chat room, addressing issues that caregivers want and need addressed. All are welcome! This month, we will be discussing this exact conundrum: what do you wish you had known before you became a caregiver? What can your fellow advocates (and advocacy organizations like LUNGevity) do to help you learn what you need to know at the front end? How can we help you "grasp" the info you need in order to make a smooth transition into your role, and get settled as quickly as possible in a somewhat comfortable routine? How can you be supported in your role by being given notice ahead of time of what you may need or want to know, do, or think of? How can you catch the signals ahead of other curveballs? To assist in answering these questions, and to continue this conversation, we'll be hosting a sort of "Caregiving 101" for our chat this Wednesday. Several experienced caregivers will offer their best advice--the things they wished they had known before starting their work of supporting their loved ones through a lung cancer diagnosis. Please join us to learn together; to hear from others who understand the ups and downs of what you're going through; to share your stories and your advice; and to help us understand how we can better help each other. Wednesday, June 6th, 8pmET, on Twitter, at #LCCaregiver. I can't wait to "see" you there! Thank you, my friends!
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