RonH

Hi Mike, As a former Durvalumab user, I wanted to ask if you had your biomarker testing done before starting on the Immunotherapy? I too had the chemo and radiation and was then started on Durvalumab. After receiving 18 infusions, a CT/PET indicated a possible progression, so my ONC had a lung needle biopsy sample sent off for Biomarker testing. This testing confirmed that I was PDL1 negative, and ALK positive, so the Durvalumab had little or no chance of working. About the only good thing from the Durvalumab treatments was that I got to meet many great people here in the Lungevity Forums

By all means get a LDCT. Two and a half years ago, my PCP had me get one. I had one two or three years before then and all was clear, but I went ahead and had another which lead me to being diagnosed with stage 3A NSCLC. While not a great diagnosis to receive, especially since I still had no symptoms, its still a lot better than waiting for symptoms to appear and being found to be Stage 3B or Stage 4. Just saying the earlier you find out, the better the likely outcome.

SteveD, It "might" be a temporary reaction. Back in late 2018 I was placed on Durvalumab after my Chemo, but then after 4 weeks (2 infusions of Durvaluamab) my treatment had to be temporally suspended due to elevated liver function test results. After 5 weeks of no infusions all my blood tests returned to normal range and I was restarted on the Durvalumab. It seemed to have little or no affect on my liver function tests the second time. Just FYI, I eventually had 16 more infusions until I had my biomarker tests performed and found out that I was PDL1 Negative and ALK+ at which time I stop

Hi Jim. As others have noted, there is a specific forum for the Durvalumab (Imfinzi) users. I've been a member of the Durva Club for well over a year, in fact almost two. Although not currently quite as active as it had been at one time, if you read through all the posts, you will find a lot of useful information (and encouragement). I myself after the chemo and radiation I was started on the Durvalumab. However after 18 of the 26 planned infusions, a biomarker test of a biopsy tissue sample determined that I was PDL1 Negative, and had the ALK Positive gene mutation, for which the immunot

I see a lot of new names here and not many of the old "Durva Club" members which I hope is a good sign that Durvalumab worked for many. I did do a member update elsewhere in the Lungevity forums, but I wanted to post here as well as I spent so much time here over the past 2 years and met so many great people here. I still stop by here from time to time to check on you all. I would name names, but I don't want to leave anyone out because so many have been an inspiration and provided support, even during those "dark times". You know who you are! My Update: Diagnosed NSCLC 3a in May of

First of all I would like to sincerely thank everyone who messaged me regarding my last post. Secondly I would like to apologize for not responding back sooner, however between the March CT Scan results that my ONC implied showed probable reoccurrence in my right lobe and likely progression to additional lymph nodes, and then being told that in his opinion that I should seek a second opinion consult elsewhere on possible treatments going forward, including clinical trials, sent me to a very dark place in my mind. It was somewhere that I have rarely ever visited. As a result, I just needed

So very pleased to hear of those having or nearing completing their time in the Durva club and with so many resulting with a finding of NED. Wonderful news and truly an inspiration for many that this gives hope to. A sincere happiness for all of you. My updates: After my last CT Scan in early March indicated probable reoccurrence/progression of a tumor in my right upper lobe, and a possible new tumor in my middle lobe, my Medical Oncologist who has been treating me for the past two years has now suggested that I obtain a "Second Opinion". He arranged for this second opinion at the Ohio St

Sorry I can't be of much help, I never experienced nausea with any of my treatments, not during the chemo, nor during the immunotherapy nor now with the TKI. In fact I actually gained weight during each. There were a few times I didn't feel quite right, but I would not say I was ever nauseous. But I've always heard not to take the TKI's on an empty stomach, one because the food helps with absorption of the meds and two because it reduces the chance of nausea. I would agree with you, follow what the manufacturer says. I have heard that sometimes one needs to take a short break from the meds to

Terry, Good to hear that your meds made it. As much difficultly as I have sometimes getting some of my meds mailed to me, I can only imagine having to get them across international borders, especially with the ongoing COVID-19 Virus. Your wife Sherry probably saw the attached link on the ALK Positive Facebook site, but if not it is a very good paper on the various TKIs available for ALK Positive patients. Hope the link works. https://www.uptodate.com/contents/anaplastic-lymphoma-kinase-alk-fusion-oncogene-positive-non-small-cell-lung-cancer?fbclid=IwAR0G1DwN_TImnsug5GLOHVbn_Ge2i

Yea Terry, sounds like some fishing might be in order while you wait for your meds! 🐟

Hi Terry, Perfectly understand the time zone issue. Regarding the MRI's, it probably varies greatly between patients and cancers, but I've only had two. The first during my initial diagnosis and staging determination in early 2018. The second was over a year later when I showed signs on a CT scan and a PET Scan of progression. A lung tumor that was thought to be eliminated by the chemo and radiation, started to grow again (per a CT and then confirmed by a PET Scan), and a new lymph node became involved (but the original ones regressed). The second brain MRI indicated still no brain metast

Terry - By the time I was found to be ALK+, Alectinib had already been approved by the US FDA as a First Line Treatment in 2017 for ALK+ NSCLC here in the United States. Also as of May 26, 2017 the FDA also approved Ceritinib for first line use here. Therefore for at least myself, the ONC's were already prescribing these second generation TKI's so the clinical trials were already over. (I believe there are some clinical trials ongoing where they combine these TKI's with other treatments to see if that improves survival rates). There is also a third generation TKI available if or when thes

Terry- Michelle will be able to provide a better answer, however these ALK+ TKI medications are a Maintenance Medication, not a cure. While the tumors may shrink and even disappear it is not normally considered that you will be or are cured. Typically you must take these TKI's until you show progression, which many will do so after some time period. Some have been on them for years with no progression, and some, only months before progression. Stopping the TKI's will very likely result in a very quick progression of the cancer. The ALK+ cancers also tend to mutate and find a way around the cur

Hi Terry, when she goes to sign up for the Facebook Alk+ page, make sure she identifies herself as a caregiver. The membership is screened and limited strictly to ALK+ patients and their caregivers only. Like I say, most seem to create a new facebook page with very limited info on it, for confidentially reasons I suspect. Although obviously a social media, this Facebook page is tightly controlled and the "social aspects" of it are extremely limited. It is primarily an exchange of medical information, advice, recommendations and experiences. Much of it is so technical that it makes my head spin

Welcome Terry, I was diagnosed Stage 3A NSCLC (AdenoSquamous) in the Spring of 2018. After all the chemoradiation, and then being put on Immunotherapy (Durvalumab) for 8 or 9 months and then showing signs of progression, I convinced my ONC to have me biomarker tested. This resulted in finding out that I was PDL-1 Negative and ALK+. I was then switched over to the Targeted Therapy TKI Alectinib. Some side effects such as fatigue and shortness of breath I still have, along with constipation being my major complaint. I also have become very anemic while on Alectinib, and had two recent iron