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  2. Hi Candy, I live in Tulsa Ok. I have not been diagnosed with LC but I have a nodule that is being monitored. I found this site in December and I was a scared terrified wreck and the people on here are so wonderful they make you feel as though you are not alone. If you are ever in Tulsa you can message me and I would love to have a coffee with you. Love & Light ❤️ Lisa
  3. Hello! I was diagnosed with stage 4 adenocarcinoma (both lungs, lymph nodes and bones) 6 months ago and after a scary few weeks, found I have the EGFR T790M mutation and was started on Tagrisso. I have responded very well to the meds, however, I know Tagrisso stops working after some period of time which differs for everyone. I am feeling better, but feel like I have a black cloud hanging over me waiting for the medicine to stop working. I know small progression can be treated with radiation. I also have 60% PD-L1, but was told that EGFR mutations don't respond to Keytruda though perhaps Keytruda and chemo is a possible treatment. Have any of you had Tagrisso stop working? If not and you are on Tagrisso, how do you deal with the knowledge that it will stop working? Thank you in advance for you help. Marie
  4. Today
  5. Barb What i read last year geting over 10mg of Predisone while receiving Durvalumab the drug is then halted, Way better to get it cleared as the docs mentioned
  6. Hi Candy and welcome. I’m also an EGFR mutant. Currently NED after a lobectomy. This group is a great place to find support. I did a google search and found a support service in OKC through the Integris Health Care System. I don’t know anything about Integris or this particular group but it may be worth a shot. Contact info is below Here is a link https://integrisok.com/locations/specialty-clinic/troy-and-dollie-smith-wellness-center/services/patient-and-support-groups Lung Cancer Survivors and Caregivers Network Pam Billings, 405-748-4674 or 405-414-6907 Meets the second Monday of each month at various location I also, thanks to @Rower Michelle, find the Bonnie Addario Foundation Living Room sessions helpful. They can be watched online. The next one is the end of May https://www.lungcancerfoundation.org/patients/support/
  7. Hi Candy, I'm italian and live in Roma, my mother (age 73) is in Tarceva 100mg from 6 dicember; she is EGFR+esone 21 with pleural mets...kisses to every One
  8. Hi Candi, I also want to welcome you to the site. I don't live near you, but I can tell you that there are a lot of supportive people here and while I'm six days away from a probable lobectomy, they have helped me greatly with their knowledge, support and prayers. I hope you do find a local group, but also that you'll find this group a place to come to share and receive support from some pretty nice folks. Hopefully I'll have more to offer as I progress on my own journey. Lou
  9. Hope everyone at the conference has a FANTASTIC time. We expect PICS!
  10. Hi Candi an welcome. I'm glad you found us. I live in Portland Oregon and haven't found a support group here, either. I rely on this site a lot for info and support. It's a great group! Bridget O
  11. Barb, I wish you a full recovery.
  12. On the “bright” side, the pneumonitis was caught very early & you avoided an inpatient stay. Waiting for a few more days is a far better deal. You put that cancer on notice big time!
  13. Hi Candy, Welcome to your new set of friends! I’m an ALK mutant taking Alectinib which is very similar to Tarceva & Tagrisso. I live with the uncertainty of how long my ride is going to be before I need to switch to a new drug too. Key word here is LIVE. I’m located in the KC Metro. When I was diagnosed at Stage IV in September, 2018 there were NO support groups for lung cancer survivors. I am (by ancient history) also a clinical social worker. I found it so appalling that I started my own group with my awesome team at Kansas University. With the advances in lung cancer treatment we are now LIVING with a chronic disease. I wanted a group to help me do that. As an adopted mid-westerner, I sorta consider OKC in my backyard. Before I was diagnosed, I was a competitive rower making a few trips a year down to OKC Riversport. You’re more than welcome to come up to our group which is listed at www.turningpointkc.org (Last page of the calendar). We meet the second Friday of each month. There is also a free restorative yoga class (see page 7 of the calendar) immediately following . The social worker who manages our group is a ROCK STAR. We are just getting off the ground now with 5 members, two people are EGFR mutants. KC might be a haul- however we did the drive to OKC for a 4 minute race. 🤪 If KC is too far, then I could also recommend Facebook, they have a robust EGFR community on line. There’s a number of EGFR peeps in this forum as well. This is a wonderful community where the Beatles “with a little help from my friends” brings on a whole new meaning! Michelle
  14. The dose was 20mg 2x a day for 5 days then 1 a day for 5 days
  15. Barb, Aint that just a kick in the dang head? If I might ask, what mg is the prednisone they have you on? You didn't mention them saying anything about a "taper off" of the prednisone or anything so I would guess 10 mg?
  16. I am thankful I found this sight, I am starting my Tagrisso today and got this info in the mail. April of 2018 i was diagnosed with stage 4 nsclc and started on Tarceva, but April 2019 the Tarcev a quit working and it started growing again. I have it in my right lung and it went to both hips. I am very optimistic about this new drug my doctor is giving me, I'm not going to lie, I am worried but I am still thankful that they are always finding something to help cancer patients! I live in Moore Oklahoma, is there anyone out there close to me? I have checked for support groups in OKC area and have never found one.
  17. Well that sucks all around! I hope they can address the port issue. Mine never worked from the beginning thus I was thrilled when it came out! Hang in there!
  18. Yesterday
  19. Just as I thought, no Imfinzi today. Finishing 4 more days of prednisone. But I get to go to the hospital tomorrow to have my port checked with dye because of the shoulder and neck issue. If it’s the port will change it then. So no eating breakfast. Waiting, waiting, waiting.
  20. Just as I thought, no Imfinzi today. Finishing 4 more days of prednisone. But I get to go to the hospital tomorrow to have my port checked with due because of the shoulder and neck issue. If it’s the port will change it then. So no eating breakfast. Waiting, waiting, waiting.
  21. Isabelle, Transatlantic to England (Southampton). Stopping at Bermuda, the Azores, Lisbon, Bilbao Spain, and Le Harve France. Can't wait to leave.... Stay the course. Tom
  22. Tom, where are you cruising? We are too, along the Rhine.
  23. Hi Tom, thank you, the First...sorry I have not write in english...I'd like know the news about the lung cancer...thanks and kiss from Italy!
  24. Ale, You asked: "Ciao a tutti, poi ci aggiornerete sulla conferenza, vero? Grazie mille"? or "Hi everyone, then you will update us on the conference, right? thanks a lot." Information should be available after the conference on Facebook and on the Lungevity Web Page. Additionally forum members may post information about their personal experience on this forum. Translated: Le informazioni dovrebbero essere disponibili dopo la conferenza su Facebook e sulla Lungevity Web Page. Inoltre i membri del forum possono pubblicare informazioni sulla loro esperienza personale su questo forum. Stay the course. Tom
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  27. Hi Forum gang! Who's going to the Lungevity Survivorship Conference in Washington DC on April 26-28? I'll be there, and I think Lexie and Steff (and Steff's mom) will be there, too. Anybody who's going and wants to exchange contact info so we can meet up there, let me know. For private info like phone numbers or where you'll be staying, best to message me rather than posting. If you do message me, let me know if it's OK to share info with others who are going. BridgetO
  28. Just found out the new drug I will be receiving shortly and wonder if anyone is presently on this type of treatment.
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