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Found 7 results

  1. So my mother who is stage iv with metastasis to liver finally told me the truth about her diagnosis. she originally told me there was one tumor in one lung and a small spot in her liver and they didn't give her any idea of her survival rate. today she told me there are several small spots on 1 lung and then the small one in her liver. she has had 4 treatments of keytruda and the first scan looked good. her doc only did a scan this early because he was concerned because her voice had become hoarse, but he said nothing more is concerning him right now. she is due for another scan in a few weeks and has finally agreed to let me go with her and ask questions. What are some things I should be asking? one thing I want to ask, but maybe it's a stupid question is If the cancer is primarily the small spot in her liver and the small one in her kidney, why isn't surgery an option in the future? if the keytruda can get rid of the cancer in her liver, is a lung removal an option? Why isnt she beng given traditional chemo along with the keytruda as that seems like a common treatment option?She truly feels like she only has 2 years because he mentioned that he can't promise she will be here longer. I've tried to tell her this isn't an expiration date and that he told her that before she was ever tested for keytruda. Am I wrong to give her hope at this stage? She is only 53. She is still very healthy. she goes to work every day and aside from feeling tired after treatment, she seems fine right now. she even gained all her weight back in the last few weeks. Thank you in advance for any suggestions.
  2. Hello - My mom (non-smoker, 75 years old, otherwise in perfect health) was diagnosed with stage 4 NSCLC in mid-April. She was extremely active, in great shape and only discovered her cancer because she started becoming extremely short of breath and lightheaded while playing tennis (which she had recently picked back up). After all the tests, biopsy and scans, we found out the tumor was small (two centimeters) in her right lung and two nearby lymph nodes in the hilar region. She also had moderate pericardial effusion (fluid around her heart) and her PET scan showed a small spot on her liver (again, about 2 cm). She started chemotherapy (carboplatin and alimta) on May 1st and has had five treatments so far. Scans after the first three treatments showed a minor shrinkage of the lung tumor, lymph nodes and fluid around her heart and a dramatic decrease in the liver spot (reduced by half). That was all good news! After her fourth chemo treatment, she suffered from a very low platelet count and had to take an additional week to recover. Then after her fifth treatment her hemoglobin and platelets dropped so low that she was extremely lightheaded and short of breath after only being on her feet for a few minutes at a time. After telling her doctor several times and not getting a response, I finally put my foot down and called and insisted he do something since it sure sounds like she was anemic (based on my google research). Sure enough he agreed and she received two units of blood on Friday and feels much better, also, the doctor ordered another CT scan of her chest that same day to make sure there wasn't a clot or infection that might be causing this. The doctor called and said there is no clot but the mass on her lung looks one centimeter larger. He is not sure if the larger mass is the tumor growing or inflammation. Now his plan moving forward is to take her off the Carboplatin since it's wrecking her bone marrow and keep her on the Alimta that they call "maintenance" and then rescan after a few treatments. I asked why keep her on this if the tumor could be growing and asked about Keytruda (again... see below). He said he is going to take this issue to the tumor board but that he wants to do one thing at a time because older patients can have harder times with immunotherapy. (i can't help but feel he is giving up on her because she is 75 years old). When Keytruda was recently FDA approved as a first line treatment for all adenocarcinoma patients regardless of their PD-L1 (my mom tested positive for PD-L1 at 30%), she had just started chemo. I called him and asked if he would add this to her second treatment and at the time he said he probably would, but on the day of her labs, he told us he decided not to add Keytruda to her treatment plan because the side effects could be too much. He also claimed the study that caused Keytruda to get FDA approval in combination with chemotherapy was just a small study and the data was not strong enough. He said this to me again today when I asked if we could add Keytruda. I have been watching these boards since my mom was diagnosed and I would welcome any feedback or suggestions anyone has that can help me advocate for my mom, who I know has a lot more life left in her. The chemo is beating her up, but she's not ready to just go into maintenance mode and succumb to the cancer. What else can be done? Should I push the doctor to come up with another plan that might include an immunotherapy drug? Thank you so much for any advice you have!
  3. Hi. My mom was recently diagnosed with lung cancer, well, they did a biopsy and found cancer in her lung. we don't know yet the stage or origin. she is a long time smoker, but only 53. I am really hoping they found it early, even though I know that is rarely the case. My question today is she has an appointment set and it lists 3 different departments she is meeting with. Radiation/Oncology, Hematology/Oncology, and behavioral medicine. the radiation oncology is obvious , but can anyone tell me what roles the other 2 have in treatment of lung cancer ?
  4. 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
  5. Hi all and thank you in advance for the information and support. My 74 year old mother was diagnosed in June 2016 with stage 4 NSCLC. (Adeno-C, no mutations) upper left lobe tumor with a small lesion in the brain. Because the objective of care was palliative she did not take platinum based chemo and instead went on Alimta (only). She had targeted radiation to the brain (cyberknife) Oct scans were stable, additional scans in December showed progression. Lungs and now liver. She just started keytruda this week. Her pDL =80% She's quite frail and sleeping a ton. I would be interested in hearing from others on Keytruda. I have done all the research and hear promising things but fear her cancer has spread too much/too far. Just looking for any hope or inspiration here. Thank you all so much stephanie
  6. Edward Garon, MD, of UCLA joins the LUNGevity Foundation Scientific Advisory Board Dr. Garon brings expertise in clinical trials and other key areas to LUNGevity’s research program FOR IMMEDIATE RELEASE Media Contact: Austin Courtney acourtney@susandavis.com (202) 414-0791 WASHINGTON, DC (January 13, 2017) – LUNGevity Foundation, the nation’s preeminent lung cancer research foundation, today announced that Edward Garon, MD, has joined LUNGevity’s Scientific Advisory Board, a group of 19 world-renowned scientists and researchers who guide LUNGevity’s scientific strategy and research program. The Scientific Advisory Board is integral to the Foundation, overseeing the scientific approach and ensuring that grants are awarded to the researchers whose proposals demonstrate the greatest potential for finding lung cancer at its earliest, most treatable phase, as well as extending and improving lives for lung cancer survivors. LUNGevity is the only lung cancer organization with programmatic focuses on early detection and Career Development Awards. LUNGevity-funded researchers are working on finding a better way to detect lung cancer, and to better diagnose, treat, and prevent its recurrence. The research program is a crucial factor in moving the science forward to improve outcomes for people living with lung cancer. Dr. Garon is the Director of the Thoracic Oncology Program at the Jonsson Comprehensive Cancer Center at UCLA and Associate Professor of Medicine in the Division of Hematology-Oncology at David Geffen School of Medicine at UCLA. He has been the principal investigator of peer-reviewed grants from various funding organizations, including the National Cancer Institute. His focus is on clinical research and biomarker development. He has served as the principal investigator on national and international phase I, II, and III clinical trials. Among these are trials that have led to the approval of drugs for the treatment of non-small cell lung cancer, including ramucirumab (Cyramza®) and the immunotherapy pembrolizumab (Keytruda®). “We are honored that Dr. Garon has joined our Scientific Advisory Board,” said Andrea Ferris, President and Chairman of LUNGevity Foundation. “His expertise and advice will be invaluable to furthering LUNGevity’s goal to improve outcomes for lung cancer patients.” Click here to read the complete press release on LUNGevity.org.
  7. On August 17, LUNGevity hosted a webinar with Dr. Julie Brahmer to discuss recent clinical trials in immunotherapy drugs. These trials have stimulated a lot of discussion in the lung cancer community. The webinar was moderated by LUNGevity's Vice President of Support & Surivivorship, Katie Brown. Dr. Julie Brahmer is an immunotherapy expert at Johns Hopkins and a member of LUNGevity Scientific Advisory Board. Dr. Brahmer is an expert in the use of immunotherapies to treat lung cancer. She has spearheaded numerous clinical trials for the immunotherapy of lung cancer, including the pioneering trial that led to the approval of nivolumab in the second-line setting for advanced-stage lung cancer. Dr. Brahmer is the director of the Thoracic Oncology Program at the Johns Hopkins Kimmel Cancer Center. She is also a member of LUNGevity’s Scientific Advisory Board. To listen to the webinar and to read the follow-up blog written by LUNGevity's Director of Science Communications, Dr. Upal Basu Roy, please click here.
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