Eagle13 Posted March 31, 2019 Share Posted March 31, 2019 Hello Opal, The Durvalamb did not work for me. Even though I was given 8 infusions before they stopped due to my Pleural Effusion. I had no PD-L1 test before the immunotherapy. It would shown from the beginning it would not have worked. That switched me from stage 3b to stage 4. Biomarker tests were done on the fluid that was pulled via Thoracentisis. I went to a specialists with the biomarker test results and they put me on Tagrisso. My mutation is EGFR exxon 19 deletion per the tests. I have been on Tagrisso now for 218 days (~7 months). I have had several CTs and 2 MRIs and the results have shown no progression, the pleural effusion is gone, there is reduction in size of some of the lymph nodes and I am considered stable. Yes, there are some side effects from the Tagrisso but, I feel better every day. I am also aware that the type of cancer I have will eventually figure out the Tagrisso and will progress again. Discoveries are being made everyday. I am hopeful that there will be some other advancement for my treatment when the Tagrisso’s time is up. There are several different mutations that can come back from the biomarker testing. I am fortunate enough to have been EGFR that has several options for treatment. Stay positive, don’t be afraid to ask a true specialist for their opinion, never stop believing in the power of prayer. 🦅 Rower Michelle and Robert Macaulay 2 Link to comment Share on other sites More sharing options...
Opal Posted April 1, 2019 Share Posted April 1, 2019 Hi Barb1260, don't be nervous, it could very well work for you! Think positive and I will keep positive thoughts for you too. Good luck. T/P exit 2 Rower Michelle and Barb1260 2 Link to comment Share on other sites More sharing options...
BridgetO Posted April 1, 2019 Share Posted April 1, 2019 Where is Kleo? Kleo, come in please! Link to comment Share on other sites More sharing options...
Tomm Posted April 3, 2019 Share Posted April 3, 2019 (edited) Hello explorers of Durvalumab, I am about to join on April 18th. I had stage 3c lung cancer and finished chemoradiation treatment 6 weeks ago going NED (again). Questions for users of durvalumab: Were you in remission when you started this? did you go into remission? did you stay in remission? did you have progression and if so how long after treatment started? Any hair loss? side effect that is a bother? fatigue? thanks and good luck on your journey Edited April 7, 2019 by Tomm change remission to NED Link to comment Share on other sites More sharing options...
Eagle13 Posted April 3, 2019 Share Posted April 3, 2019 Have you had a PDL1 test to determine if Durva will work for you? Get a biomarker test done to see what mutation you are if possible. I had 8 treatments of Durva and learned it was not working for me. Biomarker test revealed the mutation I have and have been on another treatment for ~7 months with favorable results. 🦅 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 3, 2019 Author Share Posted April 3, 2019 Tomm No idea about remission if showing progression on Durvalumab treatment stops, Side effects for me Faitgue and chest inflammation that is how it works on existing tumors, All my hair has grown back in, Think #16 next week Link to comment Share on other sites More sharing options...
Tomm Posted April 3, 2019 Share Posted April 3, 2019 Eagle 13 I have the gene mutations of the PDL-1 with 95%> positive.What is your mutation and what are you on now? Robert ..I'll add the fatigue to what I already have.... I'm going to get an iv of Vit c (50 grams) this week, it may help with that. Glad to hear not to expect more hair loss. thanks for the feedback Link to comment Share on other sites More sharing options...
Charles Posted April 3, 2019 Share Posted April 3, 2019 Tomm 3b here, chemo and radiation knocked a lot of the stuffing out of my tumor as it has shrunk considerably but cannot claim remission at this time. As of 1st initial CT and PET's, no new metastasis with uptake 19 less than first PET. Have had 5th infusion of Durva today and so far, no new side effects. Side effects so far have been fatigue, vision a little blurry at times (very little) and minor twinges here and there with inflammation and cough that comes and goes with the help of Ibuprofen and generic mucinex. I did have to visit the E.R. and take prednisone a week after the 2nd infusion because of a nagging pain in the liver area and under the right arm but turned out to be inflammation so the prednisone took care of it without having to take it enough to taper off. Very glad to hear your remission story and pray I will be able to stake my claim in that department very soon, and no hair loss here either. Curt 1 Link to comment Share on other sites More sharing options...
Eagle13 Posted April 3, 2019 Share Posted April 3, 2019 8 hours ago, Tomm said: Eagle 13 I have the gene mutations of the PDL-1 with 95%> positive.What is your mutation and what are you on now? I am EGFR exxon 19 deletion. I have been on Tagrisso for ~7 months now. I pray that the Durva works for you. Glad they tested you. 🦅 Link to comment Share on other sites More sharing options...
Tomm Posted April 4, 2019 Share Posted April 4, 2019 (edited) I am NED and will start Duvalumab in a few weeks. Is anyone getting Duvalumab NED? Charles ...thanks very much for sharing the effects and side effects that go with this drug. Keep posting here with any new information and I will do the same to report how it's going. Egal 13 ..I hope Tagrisso works for you, I've read good things about it's success. Remission is on the way... Edited April 6, 2019 by Tomm not clear I'm ned when starting Link to comment Share on other sites More sharing options...
Charles Posted April 4, 2019 Share Posted April 4, 2019 Tomm, I haven't heard or read of anyone here on imfinzi as of yet being NED as the drug was just FDA approved in Feb of 2018 for stage 3 so I would guess it is still in it's "infancy" I, like you, have a million questions myself about it as I am new to it also. I have come to the seeming reality that there just isn't tons of folks to ask about their "successful Imfinzi journeys" as of yet. All I can say at this point is I am very much in hopes and prayers that the antibodies in the stuff prevent the pd-1 and the pd-l1 from joining together and my T-cells can destroy the tumor and all residuals therefrom, as they are supposed to do. As far as reapplying the "brakes" on the t-cells when it comes time is just another one of those zillions of questions that seem to be building in a large repertoire within myself. In Jan, when I felt I needed to go to the ER about "possible serious side effects" (pain in the liver area) The ER staff, to include the Dr who treated me, was very hungry for technical info on Imfinzi, what it really is, and the possible side effects and how to treat them, so I interpreted this at the time as not enough is really known in the medical world either, The research that I have done says that only now medical institutions are beginning to educate their staff about "our reality" and we (Durvy's) are on a growing list of people who I suppose would be classified as "pioneers" on Durvalumab. All they still have to go by it seems is the Pacific trials results in which the FDA's approval was given due to those. Tomm, it sounds like your regimen is second to none though having killed several tumors with CBD, Cannabis and vitamin C which fscinates me and maybe in the future I could pick your brain about those if I can, Thanx, Charles Tomm 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 4, 2019 Author Share Posted April 4, 2019 Intresting article and comment One concern is that patients with less than 1% PD-L1 expression may not derive the same benefit with consolidation durvalumab." — Karen L. Reckamp, MD, http://www.ascopost.com/issues/january-25-2019/pacific-trial-of-durvalumab-in-stage-iii-unresectable-nsclc/ Link to comment Share on other sites More sharing options...
Barb1260 Posted April 5, 2019 Share Posted April 5, 2019 I’m having 2nd thoughts about getting Imfinzi because of all the unknowns. I’m feeling better than before dx and it seems this will make quality of life suffer. Charles 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 5, 2019 Share Posted April 5, 2019 Hi Barb, I read your post this morning and thought about the book by Diana Lindsay, "Something More Than Hope". She is a 13+ year Stage IV LC survivor. When asked about her miraculous recovery, she responded, " I would say that I don't know. I entered into the world of not knowing and I remain in the world of not knowing. You have to be willing to hope and take the risk of hope." I totally understand your reservations about treatment unknowns- however- with our cancer therapies we are literally trailblazing the way forward. Essentially, I think of our group as the 1st generation of hope. You might want to ask the doc what happens if you don't elect to proceed with immunotherapy. You can weigh out the pros and cons. Let us know what the scan results show. Michelle Tomm and Charles 2 Link to comment Share on other sites More sharing options...
Tomm Posted April 5, 2019 Share Posted April 5, 2019 Charles ..I have some of the same thoughts about our unknown journey. I will be getting my infusion (on april 18th) at a cancer clinic in Oregon that treats over 125 per day with chemo and only 6 are getting Duvalumab. I would be glad to share my regimen that killed 4 tumors 2 years ago and killed another last month. I got chemoradiation, I eat CBD in the morning, cbd/thc at dinner and THC at bed time. 50 Grams of Vit C in an IV and 12 supplements from my naturopathic oncologist. Let us know how you progress when you get a CT, I am very positive about the new treatment and that is an important part of health .. being an optimist. Robert ..thanks for the link ..I'm 95%> positive for PDL-1 Barb.. I'm having 3rd thoughts too as I'm in remission and can't find anyone else in remission getting this. The theory is it will find the tiny cancer that the scan can't see and stop a recurrence. Keep posting as you decide what to do. thanks very much for the feedback and I wish you all good health Charles 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 5, 2019 Author Share Posted April 5, 2019 This is from earlier post this year Durvalumab (Imfinzi) also targets the PD-L1 protein. This drug is used a little differently than the other immunotherapy drugs. It is used in people with certain types of NSCLC whose cancer has not gotten worse after they have already received chemotherapy along with radiation (chemoradiation). The goal of treatment with this drug is to keep the cancer from getting worse for as long as possible. IMO If you stop progression that is one battle won Link to comment Share on other sites More sharing options...
Charles Posted April 5, 2019 Share Posted April 5, 2019 Tomm, Okay , thanx, and welcome Rower Michelle, Most elloquently put and very true, Kudos! Link to comment Share on other sites More sharing options...
Charles Posted April 5, 2019 Share Posted April 5, 2019 Hey Robert, here is a link published just in march and it is from canada https://cadth.ca/imfinzi-non-small-cell-lung-cancer-details It is about the most up to date info on Durvalumab I have found, once there , click on the pdf at the top in the right column Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 6, 2019 Author Share Posted April 6, 2019 Charles Excellent information for anyone going on this drug. I was the only one last year at the private clinic receiving this drug now five last week in my area in Canada Charles 1 Link to comment Share on other sites More sharing options...
Tomm Posted April 6, 2019 Share Posted April 6, 2019 Charles this is a great bit of informaitionThanks, it was a long read but I picked a few short quotes: Effectiveness: The two co-primary endpoints of PACIFIC, OS and PFS, were both statistically and clinically meaningfully superior for patients who received durvalumab compared to placebo. With a median follow-up of 25.2 months, OS was improved by 32% (HR 0.68), and two year OS was improved from 55% to 66%. Progression free survival was improved by 48%, with a median of 6 months in the control arm and 17 months in the durvalumab group, with 18 months PFS improved from 27% to 44%. Quote ,https://cadth.ca/imfinzi-non-small-cell-lung-cancer-details Charles 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted April 6, 2019 Author Share Posted April 6, 2019 Most of the information i found was in Intial recommendation. as per link below https://cadth.ca/sites/default/files/pcodr/Reviews2019/10131DurvalumabNSCLC_inRec_approvedbyChair_06Mar2019_Post_07Mar2019_final.pdf Charles 1 Link to comment Share on other sites More sharing options...
Tomm Posted April 7, 2019 Share Posted April 7, 2019 this link is from The American Lung Association forum on Duvalumab .. More folks sharing thier journey https://www.inspire.com/groups/american-lung-association-lung-cancer-survivors/discussion/duravalumab-imfinzi-patients-support-group/?origin=freshen&page=1#replies Charles 1 Link to comment Share on other sites More sharing options...
Tomm Posted April 12, 2019 Share Posted April 12, 2019 (edited) I start Durvalumab next thrusday and will get it once every two weeks. I also get an IV of Vit C (50 grams) from my Nature Doctor, she does not know if it will interfere with Durvalumab, does anyone here know? She suggested I get it on the week I don't get Duva. thanks, Tomm update: was told not to take 50 grams of iv of C until Duva treatment is over Edited June 2, 2019 by Tomm update to treatment Link to comment Share on other sites More sharing options...
Charles Posted April 12, 2019 Share Posted April 12, 2019 Tomm, I don't know but good luck with that one. Link to comment Share on other sites More sharing options...
Rower Michelle Posted April 13, 2019 Share Posted April 13, 2019 Hi Tomm- Sort if related- when I was first diagnosed the treatment plan included Keytruda. We had a long talk with the medical oncologist about IVC. His thinking was IVC had to be spaced out to the mid point of the immunotherapy cycle. His concern was for the potential for an immune system overreaction. I don’t think anyone really knows. 🤷🏼♀️ Link to comment Share on other sites More sharing options...
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