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  4. Scusa, lei ha solo metastasi pleurica, un Lc infiltrated on pleura with pleural effuction care with talco...never have pleural effuction then... thanks

  5. Tom, thanks for the info re GI effects and skin issues, much appreciated. Colleen, thanks.
  6. Hi Tom,  I'm italian and sorry for my english...my mother have Lc Egfr exone 21 with only pleural mets, she have a talc in october and have Tarceva 100mg from dicember. In march have a tc that says a parzial remission...I have a question for you: for you is it possible a complete remission on pleural mets?? Because she have only this.... thanks thanks!!

    1. Tom Galli

      Tom Galli

       Ciao Ale,

      Non preoccuparti per il tuo inglese. Scrivi in italiano Userò la traduzione di Google per leggere il tuo post.

      Comprendi che tua madre ha un NSCLC con una mutazione di EGFR Exon 21. Sta ricevendo il trattamento mirato alla terapia Tarceva. Ho ragione?

      La tua domanda è che ci può essere una remissione completa per la sua metastasi plurale con questo trattamento. Sì, questo è un possibile risultato. Ma spesso il cancro del polmone si ripete, quindi non usiamo termini come la remissione completa o la cura. Usiamo il termine senza evidenza di malattia (NED).

      Il NED è possibile, infatti, il NED è possibile. Conoscevo una donna che viveva da 10 anni prendendo Tarceva e sarebbe vissuta più a lungo, ma ha subito un ictus che ha interrotto la sua vita. Spero che il trattamento di tua madre abbia successo.

      Mantenere la rotta.

      Tom

  7. Diana, I'm sorry for your news... I can only imagine how upsetting the diagnosis was. That's understandable. I don't have experience in this to share with you (recent lobectomy only) but hope that someone can share info with you. I'd be curious - as I have been curious if this type of situation arises very often. It sounds as if your follow-up care has been thorough which is a good thing, as well as getting immediate treatment to address this. Thinking of you and hope you'll get some answers here...
  8. Isabelle, Just read all of the posts for this thread and wanted to let you know one more of "us" is thinking of you and wishing you well. I, too, am a lung cancer survivor (although I'm still grappling with this) but have only undergone lobectomy (right upper lobe last October). My second scan is approaching (late August). My first post-op scan was in February... The radiologist from the imaging center reported a tumor on the left upper lobe that he believes to be "another slow growing malignancy". My surgeon did not agree and believes it is benign and unchanged for the past two years. Another cancer center reviewed the February scan and they agree with my surgeon. But my local pulmonologist agrees with radiology and is convinced this is another cancerous tumor. I'm not sure who to believe, so basically trying to ignore all of this until the next scan... I had to wait and watch for almost two years with the first nodule. You'd think I'd be used to this! I'm glad to see you have utilized this site and the support of some great people here... It was / has been a blessing for me. I am not as knowledgeable like so many others here... They have probably been one of the best resources / sources of help that I've found in my cancer journey. I'd just like to throw my two bits in regarding telling family about your "new"... My father is now deceased. In the mid-1990's I believe it was suspected that he had lung cancer and/or esophageal cancer. I never did find out. He kept this information private. The only way I found out something was up was that he called me very early one morning from a hospital in Seattle to tell me he was having surgery in a matter of hours and might not be able to speak with me again. I was upset and I was pissed at him for not letting me know in advance. To make a long story a bit shorter, all went well from what I could gather. He did not lose his ability to speak. Outwardly, he seemed fine when I was able to see him again - although I saw the red "burn" from radiation on his neck. He refused to talk about the situation. I suspected he possibly had throat cancer but I never knew if they found lung cancer. Whatever treatment he had appeared to be quite brief and he had resumed his regular activities. He passed away about 10 years later from a stroke. I'm not sure why he chose to keep his medical information private from me (and the rest of my siblings; I was the only one he called from the hospital). I was pregnant at the time - this would have been the first grandchild - so maybe that had something to do with it. In any case, there are many reasons why I wish he would have let me know about his diagnosis... I was his daughter. I loved him and would have wanted to help in any way I could if he needed it. Now that I have experienced cancer myself, I wish I knew what kind of cancer he had... what doctors he went to, etc. I completely understand the reasons why you weren't going to tell your family. I think we've all learned that cancer does not wait for an invitation and there will never be a good time for it to show up. Our own lives and those of our loved ones will all be affected by this. I have one child, an adult disabled son who lives with me. I had to tell him right away due to our living situation. It was difficult but sharing this experience together brought us even closer in many ways. I needed his support more than I realized Hoping you obtain the best care and support possible, Isabelle...
  9. Isabelle, Yes unfortunately two types of skin issues: a sunburn like redness during treatment that was painful and scarring in the form of radiation dermatitis. I also had a sore throat during treatment but no difficulty swallowing or GI issues. These were from conventional radiation. I had no side effects from CyberKnife. Stay the course. Tom
  10. Tom did you have any skin issues with radiation or GI problems, such as inability to swallow? Curious as a good friend had the inability to swallow for a very long time.
  11. DC area only: If you live in the DC area or will be there in the two weeks: Repost: " The Henne Group is looking for one person diagnosed with Stage III Non-Small Cell Lung Cancer for a research interview in the Washington D.C. area in the next 2 weeks. We are offering compensation for a 1-hour in-person interview. Anyone interested may contact me directly. Thank you, Janelle Commins 415-348-2931 "
  12. Hi Ale, There is a Lung Cancer Living Room on YouTube today- maybe they will have an EGFR update. Nothing new for now. 🙁 At least not that I’m aware of. I hope your Mom is doing well. Michelle
  13. Hi Michelle, how are you? Have you got news about therapy after tagrisso or new drugs for EGFR+? My mother have only pleural mets and I hope that this mets go away with any therapy.... thanks and kiss
  14. Thanks Tom. On further thought, I think maybe the doc was negative because this is not a positive situation and he could not have been aware of background or whether I had done any research on the condition. Granted the inter webs isn’t always correct but I do try to locate research papers on subjects related to health conditions rather than just general information. That’s an RN thing. Oh the onc doc was surprised at the end of our visit when I mentioned to him that I had been and RN for 33 years. I do appreciate your input and feel it’s always good to gather information from those who have been there. Nothing like “hands on” experience!!! Thanks.
  15. Marie, Oh my, June has not been a good month for you! I'm not sure I have suggestions for speeding your medical care in Canada. I'm a retired US Army soldier and still know a number of Canadian Forces soldiers and all complain about having to get in line for medical treatment. And, adding insult to injury, now brain mets! I do hope you can make the Duke connection work. Stay the course. Tom
  16. Isabelle, Sorry I missed your post about the latest consult. I was visiting my granddaughter over father's day. So, let's address your questions or concerns. Fast growing NSCLC--yes it happens. My tumor didn't show on a chest x-ray and 4 weeks later, it was large enough to fill my main stem bronchus causing me to cough up blood. My cancer type was NSCLC, squamous cell. Seeing Radiology and consider chemo--might be a good plan. A radiation oncologist has a different approach to killing tumors. He or she uses either conventional radiation or precision radiation, often paired with chemotherapy. My first treatment was conventional radiation with weekly chemotherapy for six weeks and it dramatically shank my tumor. Later, when after several recurrences showed the chemo effect waning, a radiation oncologist used a form of precision radiation (CyberKnife) to fry my remaining reluctant tumor. So I'd see a radiation oncologist as a next step. Shortness of breath--again we share a symptom. I had no shortness of breath till I started coughing up blood, then I could hardly breathe and suffered a lot of wheezing and coughing. I thought my cause was the rigid bronchoscope used to biopsy my tumor. My doctors told me that might have irritated things but the cause was the tumor's pressure on my trachea. I suffered wheezing, congestion and shortness of breath till I was midway through my first line treatment. Then the radiation took hold and reduced the tumor minimizing these symptoms. A negative answer to your questions--could the answer have been realistic and not negative? Lung cancer is very hard to arrest and a large mass is harder still. That doesn't mean impossible, just hard. Could this have been the essence of your doctor's answers? I'd engage a radiation oncologist and see if precision radiation can "blast the mass." This might be paired with chemotherapy. The radiation and chemo will cause side effects but don't forget, one of the principal side effects of this treatment is eliminating tumors. Stay the course. Tom
  17. Dr Google is a really scary place. Here’s the real deal: there have been more advances in LC treatment in the last 3 years than the last 30. All of those on line stats are wrong as they can not account for these discoveries. The CDC’s last years of data go from 1975 to 2010 according to a report I saw yesterday. Here in this forum there are many long term survivors. The science is moving fast- it’s so hard to do however the internet is just flat out wrong.
  18. Thank you Michelle. Looking at the prognosis online, the numbers seem grim, I'm hoping that's changing.
  19. Hi Martin, Welcome to the forum; sorry you need to be here, but glad you posted. This cancer journey is unique to the disease and also the individual. I don't have your wife's type of cancer, but others do and you'll get some super counsel and information from them. For my part I'll keep your wife, family and yourself in my prayers. Lou
  20. Hello Diana, So sorry to hear that you having to face this again but, as others have already said, there have been many advances of late. Please keep us updated and know that you have folks here to share or ask anything you wish. You've come through this before and you can do it again. Lou
  21. Danielle, My day is always a bit brighter with every bit of good news I read in this forum and you've brightened my day. Thanks for sharing the updates and congratulations on the great news. Lou
  22. Loren, You are not alone. Everyone here has heard some diagnosis and, regardless of the stage or type of cancer, felt the shock, despair and loneliness that comes with such news. But know that you are not alone in this and that your story isn't written until you write it. I won't tell you to "suck it up" or "tough it out" because I wasn't good at either, but I shared with people both here and with my family and friends and that was a real help for me. You can also choose to see a doctor about depression, panic or anxiety and treat that as well. Susan is correct that your mindset matters. This disease needs to be fought on many levels. Let us know where we can help you out as there is a lot of experience here in this forum and some of it speaks to wonderful outcomes from terrible circumstances. You'll also be in my thoughts and prayers (two things I happen to believe in). Lou
  23. Marie, I've only been online occasionally lately so I didn't get to see your update until now. I'm sorry for the news, but it is all the more reason to get a a responsive and resourceful medical team around you. I was blessed with the folks that I had and you deserve that type of treatment as well. Please continue to update and know that we are all pulling for you. Lou
  24. Isabelle, I agree with Michelle. You would benefit from a second opinion. I'm not sure what the doctor means by "quality of life will not be good". This is antithetical to so much of what I have read here from other people. I only had surgery, not chemo or radiation, but many others have told of tumor reduction, even to remission so please see someone else. Lou
  25. Hello there and Welcome. It’s nice to meet you! While I do not have the EGFR mutation , I have ALK and lead a support group with a number of EGFR peeps. 1st- once identified as EGFR then it’s not necessary to test for KRAS as you can really only have one mutation upon diagnosis. 2nd the folks in my support group are taking Tagrisso in their 70s. The oldest one is 75, all of whom are tolerating the inhibitor quite well with good quality of lives. They are out there living their lives. 3rd- generally chemo isn’t combined with targeted therapy, Tagrisso. It’s a very effective drug which works very quickly. It passes the blood brain barrier and will heal the bone metastases. I wouldn’t be too worried about the PDL-1. With mutations even if there is some PDL-1 expression, for some unknown reason immunotherapy doesn’t work in these gene mutations. The researchers do not understand the underlying cause. While there is no cure for Stage IV NSCLC, with these inhibitors, this is managed as a chronic condition with a high quality of life. What is tricky about this is how long the inhibitor is effective, it’s different for everyone which is generally years and counting. There’s a growing number of long term EGFR survivors. I’d recommend purchasing Diana Lindsay’s book. “Something More Than Hope”. She’s 13+ years. There are over 900 clinical trials for EGFR today and growing; there’s hope on the horizon. Michelle
  26. I think negative doctors need to be shown the door. Maybe a second opinion?
  27. My dad was recently diagnosed with Stage IV Metastatic Adenocarcinoma with cancer in his lungs, bone, and a tumor near his spine. He's currently getting radiation for that tumor. He is in his early 70s (although most people think he's much younger), he smoked in his teens for about 5-6 years, but quit in the 1970s. Six years ago, he had his right middle lobe removed because it was malignant. He hadn't had any symptoms since, we just recently learned about this. He has been tested and the results are negative for PD-L1, ALK, BRAF, and ROS1, but positive for the EGFR analysis (Exon 19 & T790M). He will be starting Tagrisso (osimertinib) as soon as the prescription is ready: 1. Is it worth inquiring about the KRAS test? 2. Is there anyone out there as old as he is? Has osimertinib been working for you? 3. Should we combine chemo with the osimertinib? 4. What has been your prognosis? I was devastated to learn his PD-L1 levels didn't qualify for immunotherapy, I believe that shortens his life expectancy significantly.
  28. Last week
  29. Tom, no proof that chemo works for everyone but it does for some, there are some clinical trials on these that I know we all hope will find the way for all of us.. thanks for being here for us, you have been a great help to me with this site and your knowledge and personal life that you share . best regards,Tomm
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