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  3. So sorry to hear about your dad's diagnosis. Just know that there are many treatment options available! If you have any specific questions, just ask. I also have stage IV NSCLC (adenocarcinoma-KRAS mutation).. I have had two lobes removed (2017), followed by chemo, and then it recurred. So, I begin immunotherapy treatment on a clinical trial on Tuesday. Best of luck to you and your dad. He is lucky to have your support!! Ro
  4. Thanx Barb and Tomm, will post again when I read the report and get #7, later
  5. Open lobectomy surgery does have a longer recovery time and I have heard from people that have experienced pain for longer than seven months afterwards. I don’t think it’s out for he ordinary but you should let your doctor know. Did the doctors give you any physical therapy exercises? How about other pain management techniques? Acupuncture, meditation, etc?
  6. Fauna, Sometimes after surgery, a.course of chemo is prescribed but, sometimes it is not. I’d say if no more treatment is prescribed, do the NED dance. Stay the course. Tom
  7. Hi and welcome. I'm sorry, too, about your dad's diagnosis. I never smoked and I was diagnosed with adenocarcinoma. Fortunately, mine was discovered early on a CT scan for something else, so surgery and ongoing surveillance was all I needed. Curt is right that the advances in lung cancer treatment in the last few years are amazing and a lot of people with advanced cancer are living long and well. I'm sure you'll be hearing from some of them on these forums.Let us know what questions you have and how we can support you. Your dad is lucky to have you as his supporter and advocate. Bridget O
  8. Hello @Kwally3. I’m sorry to hear about your dad’s diagnosis. Cancer is a roller coaster. It’s important to know that there will be plenty of downs but as your dad settles into a treatment plan there can be lots of ups as well. Be sure to enjoy those tot he fullest. It will help get you and your dad through the tougher times. My dad was diagnosed years ago at Stage IV. Unfortunately today’s treatment options were not available to him. I am a never smoker and was diagnosed a few months ago and was really surprised to see how treatment options have changed for the better. It was disappointing when thinking about my dad, but encouraging when thinking about myself. It’s good he had comprehensive genomic testing.. It’s pretty standard protocol now but I’m often surprised that all places don’t do it as standard practice. Knowing the specific genetic make up of the tumor and whether or not there are any genetic mutations can help in creating an affective treatment plan. Hang in there You and your dad aren’t alone in this.
  9. Hi friends, I have been prowling this forums the the days leading up to the diagnosis and have learned a lot about my dad's disease through lungevity. I am officially joining now that my dad's biopsy results are back. We are waiting for the results of bone scan, MRI, and the comprehensive genomic testing but he is currently stage iv nsclc adencarcinoma (age 58 and smoked 1 cigarette a day for just 1 year 20+ years ago). Here's to hoping his tumor was the lame student during cancer school and learned nothing useful. I am hoping to reach out to other caregivers and patients to learn how you coped and what processes you set up to track everything, investigate cancer literature, and navigating the health system. I am really hoping that my dad (and your loved ones and yourselves) make it through this. Also, for other newcomers, I'd want to say that Dr. Lynn Eldridge's articles on lung cancer on verywellhealth have tremendously helped me. They touch on topics such as the emotional rolelr coaster cancer patients experience, lung cancer treatment info, what the survival numbers mean (and how they're outdated), progress in current research, and more.
  10. Was the surgery done via VATS or open lobectomy?
  11. All biomarker testing isn’t created equal. Some panels test for more mutations than others. It could be that your moms testing didn’t find any mutations, which is why it was irrelevant. I’d ask to review the results with a geneticist. The jury is out on whether certain mutations have a higher risk of recurrence, but it’s good to know if/what she has as that information becomes more clear.
  12. Isabelle your pulmonologist does not have to be in the same network. It does make transferring reports a bit easier, but if you don’t have or like the options it’s perfectly reasonable to find a pulmonologist outside of their hospital network. I was originally diagnosed at a teaching hospital and found them good. The pulmonologist in my primary care physicians network wanted me to wait six weeks for an appointment. I went to a cancer screening center at a teaching hospital instead. I’d find another option to have in your pocket if you need it. Now that your done with vacation the sooner you can get to this the better the outcomes can be. Don’t let the inherent inefficiencies in the medical field slow you down.
  13. Hi Jen, I am stage IV with mets to brain, diagnosed 4-11-19. Start my PDL1 immunotherapy on monday, 5-20-2019. Glad to hear you are feeling great and staying optimistic. Take care now, Susanna
  14. Hi Isabelle- It sounds reasonable to me to explore an evaluation at a major academic center. I believe they would have more experience in initial diagnostics that could provide clarity for the proposed treatment plan. I was diagnosed by a wonderful pulmonologist at a top local hospital (not a teaching facility). I almost stayed there however once I learned about the importance of a NCI, I was transferred. I’m so grateful we did as my onc got my diagnosis right from day one. Keep advocating for yourself.... Michelle
  15. Update. Still have not been scheduled with another pulmo doc and found out today the reason is there aren’t really any others at this huge facility. Most are fellows and some are part time only. Sounds like they might have only one full time pulmo on staff!!! The facility is Ochsner in New Orleans. Considering how wide spread they are its pretty hard to believe they are strapped for pulmo docs. So still waiting for a call tho see who they might be able to set me up with. That’s a far cry from the first pulmo who was in such a rush to biopsy that she scheduled without seeing or talking to me. Of course that had to be delayed for travel to Europe. So we just wait. The alternative will be to get set up with one of the pulmo docs connected to a teaching institution such as Tulane or LSU Medical center.
  16. Charles, That's great news, you give us hope with your posts enjoy your great news... we are
  17. Last week
  18. Hi Curt, thank you for sending some questions. I knew about bio-markers but had no idea they could provide information regarding recurrence. Thank you for that info. It is strange as they tested her for all of the bio-markers but didn't even review the report with us. We've asked numerous times but they keep saying it is currently irrelevant as chemorad and surgery are the best options. Thanks again.
  19. I had a right upper lobectomy to remove my pancoast tumor 7 months ago and I'm still having shoulder pain that seems to be getting worse. Isn't the pain supposed to go away?
  20. Thyroid dysfunctions secondary to cancer immunotherapy ...this is something we need to get checked.. this is a link to a govt. study https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5953760/
  21. Just got my chest CT Scan and disk and popped the disk in the old PC and it does appear that we do have pretty good shrinkage, just how much I don't know exactly but it is definately smaller in volume and shape. will know more when I get the report from the radiologist as to the particulars but the thing is ragged and tattered looking and smaller .This to me makes taking the Durvalumab with side effects worth it at this time. Now I just hope no new mets or anything or plueral effusions but won't know for sure until after the reports but lungs actually feel better than they have in a couple years. So hallejuhah for now
  22. Thanks a lot Hope! Or doctors have not told us of any CT's so I think there might not be any. God luck for your husband, hope he gets fully cured.
  23. It sounds like the treatments are affective. That’s good news. I would ask. 1. What kind of lung cancer was it if you don’t already know? 2. Were there specific bio markers of the tumor? That helps predict the potential for recurrence and follow up treatment if necessary. 3. If it does recur what are the treatment options? 4. If they put her in three month scan follow ups ask if there is any symptoms that would require calling and moving the scans up. Pain, shortness of breath, fever, etc.
  24. Barb .. I'm not hungry at all ... guess everyone is different
  25. fever gone.. I asked the oncology doc about my thyroid and he told me to see whoever takes care of that. I have a naturopathic physician and she is changing my dose. I found out that about 2 years after chemo there can be a thyroid issue and i was already on a small dose but now my numbers are more out of normal so will adjust.
  26. Hello all, I have posted before but will give a brief summary in case anyone wants it. My mom was diagnosed with lung cancer in November of 2018. Her tumor was approximately 3.5 by 5 cm and in the middle lobe. She had regional lymph node involvement. She was otherwise in good health. Ultimately she has concurrent chemoradiation followed by surgery to remove the lobe. Her body handled the chemoradiation well (she did have a few trips to the ER but all in all, it went well). She was able to have two courses with no extreme side effects. Surgery was without complications. On removal all involved lymph nodes and the tumor looked dead. The pathology report confirmed that this was the case. Scans show no cancer elsewhere. Monday the 20th will be a follow up appointment with her medical oncologist and radiologist. We are so lucky and thankful that things have gone so well for her. However, we still want to make sure that we ask any important questions when we meet with the doctors on Monday. I researched this treatment options extensively but have found little on this topic. Can any one advise what they think we should ask at this point? Perhaps anyone can share what they wish they has asked, but didn't know at the time to ask? Any insight would be greatly appreciated. Thank you!
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