yenlilly Posted July 1, 2022 Share Posted July 1, 2022 DURVALUMAB NOT WORKING, BASED ON GUARDANT 360 TEST... Hello All, I've been a frequent reader/follower of this discussion forum, albeit never poster (until now), but just want to let everyone know I'm very appreciative of all the technical advice and positive supportive messages that are shared on a daily basis here. I've finally decided to jump in and share my story: After ~5 months of primary care and pulmonologist appointments/scans/incorrect diagnoses of pneumonia, my never smoker 64 year old mother was diagnosed with Stage 3 Squamous Cell lung cancer in OCT 2021. The tumor biopsy revealed a CDKN2A Deletion mutation, with a high PD-L1 of 90%; and low Tumor Mutation Burden. Once the doc confirmed the best past forward, in DEC 2021, we commenced the chemoradiation sequence of 7 weeks of daily radiation + weekly low dosage chemo treatments of Carbotaxol. In FEB 2022, 16 days after the last radiation dose was administered, we immediately began her monthly immunotherapy regimen of Durvalumab (Imfinzi). We did a CT scan at that point that revealed a marked improvement from the PET/CT that was conducted in SEP 2021. The onc also ordered a Guardant 360 test contemporaneously, and we received a baseline tumor response map that indicated she still had relatively low levels 4 separate biomarkers present. These past 5 months have been (fortunately) mainly uneventful, with the only symptoms presenting being coughing and shortness of breath, likely attributed to a mild to moderate case of pneumonitis from either the chemoradiation of Durvalumab treatment. During this period, I was feverishly researching stats on my mothers case; stats on Durva, and became more and more hopeful that she was going to have a very positive response from the treatment, especially due to her high 90% PD-L1 expression. Last month, the onc ordered the another CT scan, which came back very positive, as interpreted by the onc - he said they did not see any additional growth and there was no mention of any masses present - merely increasing consolidative opacity in the perihilar with air bronchograms and moderate pleural effusion, which we assume can be chalked up to the pneumonitis. But the doc's consensus was that this was something to celebrate, as it appears the treatments are working based on the scans alone. To be sure though, he ordered another Guardant 360 test to confirm that, on a molecular level, the treatment is directionally working as intended (ie. we would expect the percentages of each biomarker present in the last test to be trending downwards as the treatment progresses). We have not yet had the appointment with the doc to discuss the results of this second Guardant 360 test (will be next week), however, I was able to log on and retrieve the reports on my own and was devastated to see that the biomarker percentages have increased substantially from the FEB 2022 baseline test (see image attached). This directional change would seem to indicate that the Durvalumab treatment is not working for her in the 5 months since she began. My question is, can anyone who has done this test please confirm that that is the accurate interpretation of the results? I have not yet discussed with my mom as I do not know what to even tell her. She has been very pragmatic through this whole ordeal, and only just after the last doctor's appointment with the positive CT scan, did she begin to have hope and talk about travel plans for next year, and potentially beyond. This is truly even more devastating to me than the initial diagnosis, as I had such high hopes for this treatment - I was sure that she was going to beat it and be one of the lucky survivors that would last beyond the 5 year mark. Next question here is, what are the next steps for a Stage 3 Squamous Cell (she has not been restaged since initial) chemoradiation patient who, currently only based on the Guardant 360 testing as her tumors have not reappeared yet via scans, does not appear to be responding to Durva? Apologies for the long long post here 😌 Appreciate any feedback that I can solicit, and appreciate you all! Regards, Lilly Justin1970 1 Link to comment Share on other sites More sharing options...
Tom Galli Posted July 2, 2022 Share Posted July 2, 2022 Lilly, I guess you found the suggested Durva resource. Your other blog announced the Guardant result. Press for a CT or PET scan. Stay the course. Tom Justin1970 and yenlilly 2 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted July 29, 2022 Share Posted July 29, 2022 Hi guys my mom is about to start this treatment and would like some words of encouragement! Justin1970, Tom Galli and LouT 3 Link to comment Share on other sites More sharing options...
Justin1970 Posted July 29, 2022 Share Posted July 29, 2022 Hi kelvin I'm sorry I don't really understand all the medical jargon all I can say is I wish your mum all the luck possible and really hope she will get through the treatment without to many problems All the best Take care Justin Izzy and LouT 2 Link to comment Share on other sites More sharing options...
Tomm Posted July 29, 2022 Share Posted July 29, 2022 Hi Kelvin.. The good news is your mother is getting the 1st new lung cancer treatment in decades. Before Durva the only treatment after Chemo/Radiation was wait and see (when the cancer returns). It came out of clinic trials in May 2017 and is given the best chance for long-term survival in a curative intent setting. I have been cancer free for over two years since my treatment. Don't look at old information about survival rates as most are from 5+ years ago. Be here now. Eat healthy and know that it works for most people. Ask or vent anything here. best wishes for you mom and now a joke... “Thoughts are great, but Ativan and pot are better.” LouT and Justin1970 2 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted July 30, 2022 Share Posted July 30, 2022 9 hours ago, Tomm said: Hi Kelvin.. The good news is your mother is getting the 1st new lung cancer treatment in decades. Before Durva the only treatment after Chemo/Radiation was wait and see (when the cancer returns). It came out of clinic trials in May 2017 and is given the best chance for long-term survival in a curative intent setting. I have been cancer free for over two years since my treatment. Don't look at old information about survival rates as most are from 5+ years ago. Be here now. Eat healthy and know that it works for most people. Ask or vent anything here. best wishes for you mom and now a joke... “Thoughts are great, but Ativan and pot are better.” Hey Tomm thabks for the info do you mind telling me your cancer story would love to learn more about ur treatment plan LouT and Justin1970 2 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted July 30, 2022 Share Posted July 30, 2022 23 hours ago, Justin1970 said: Hi kelvin I'm sorry I don't really understand all the medical jargon all I can say is I wish your mum all the luck possible and really hope she will get through the treatment without to many problems All the best Take care Justin Thanks Justin! Justin1970 and LouT 2 Link to comment Share on other sites More sharing options...
Tomm Posted July 30, 2022 Share Posted July 30, 2022 Hi Kelvin... Here is my story that I posted last September. After all the tests I was diagnosed with Stage 3a lung cancer in September 2016. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo , I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 1/2 years now. When I got my Durvalumab infusions I called it my picnic day and brought my ipad, earbuds and a nice lunch with a chocolate bar. I try to only eat Organic food. A joke... How do we know that the ocean is friendly? It waves! Justin1970 1 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted July 30, 2022 Share Posted July 30, 2022 58 minutes ago, Tomm said: Hi Kelvin... Here is my story that I posted last September. After all the tests I was diagnosed with Stage 3a lung cancer in September 2016. The oncologist's prognosis was 6-18 months. I didn't know if I could go into remission and added a Naturopath oncologist to my team. She helped me to use the correct supplements with chemo , I got the standard taxol-carboplatin and 30 days of radiation to 4 targets at the same time. I also used a lot of pure oil, 1 gram of CBD in the morning, 1 gram half THC and half CBD at dinner and a gram of THC at bedtime. I went into total remission for two years and then had a recurrence putting me at Stage 3c. I did a repeat, same chemo-radiation and oil. I went into remission again and lucky me after that I got to take Durva. I have been in remission for 3 1/2 years now. When I got my Durvalumab infusions I called it my picnic day and brought my ipad, earbuds and a nice lunch with a chocolate bar. I try to only eat Organic food. A joke... How do we know that the ocean is friendly? It waves! Did you jave any side effects during immuno? Link to comment Share on other sites More sharing options...
Tomm Posted July 30, 2022 Share Posted July 30, 2022 Kelvin ... My only side effect was fatigue, when Durva was new my oncologist was not checking my thyroid and my tsh went up to 139, I needed a cane in my house. When he did check it I was given Levothyroxine and that fixed it. It turns out Durva effects most peoples thyroid and the doctors now know this. No others side effects, I ate well, slept well and my hair grew fast. Joke Q: How are people during a heat wave like clothes? A: Their sweaters. Tom Galli and Justin1970 2 Link to comment Share on other sites More sharing options...
Opal Posted August 10, 2022 Share Posted August 10, 2022 Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!) Anyway like Tomm, I'm almost 3 years NED. Yay! Due for next 6 mos CT in September. Please tell your Mom to have faith and hope. At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!? I did it and survived (without a port no less). At this time, my husband was going on 3 years in doing treatments for PanCan. Life was a B_ _ _ _! My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough. If that's what I must deal with now, I feel blessed. The best to your Mom and you. BridgetO, Tomm and Justin1970 2 1 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted August 10, 2022 Share Posted August 10, 2022 5 minutes ago, Opal said: Hi Kelvinn, I read about your Mom and had to post as Tomm did. I was 3a and went thru the chemo, rad and 26 weeks of Durva finishing in Nov 2019 (if I remember correctly...I try to put that past behind me tho thankful for the treatment and wonderful doctors etc. And this forum for sure!!) Anyway like Tomm, I'm almost 3 years NED. Yay! Due for next 6 mos CT in September. Please tell your Mom to have faith and hope. At time of diagnosis, I was a zombie fearing how could I ever get thru that regiment of treatmemt!? I did it and survived (without a port no less). At this time, my husband was going on 3 years in doing treatments for PanCan. Life was a B_ _ _ _! My Rad doc was great! He told me "attitude is everything", keep smiling, and eat eat eat! So I did. Fatigue was a side effect and I still do not sleep as I did before treatments. I recently learned I have broncheiastasis and I have an annoying cough. If that's what I must deal with now, I feel blessed. The best to your Mom and you. Hey thanks for the reply how did u feel during immunotherepy my mom hasn't been feeling the best 1 week in had a fever yesterday and mostly no appitite was like this since chemo and radiation but she told me it's worse now Justin1970 1 Link to comment Share on other sites More sharing options...
RonH Posted August 10, 2022 Share Posted August 10, 2022 Kelvin, my story of my Durvalumab experience is likely already buried in this forum, but to summarize: I received 17 or 18 Durvalumab infusions before it was determined that I was ALK+ and IO Therapy would not help me. While the Durvlumab did not change my appetite any it certainly changed my taste. I became extremely sensitive to any spices, even salt and pepper. I was always a heavy salt user but there was about an 8-month period that I could not tolerate any on my food at all. Catsup for French fries was also out of the question as it felt like my mouth was on fire. In the end I actually gained weight. Other items were a skin rash, back, chest and legs, and a moderate level of shortness of breath and fatigue. Although not always listed in the published side effects, but the Immunotherapy Drugs have been found that they can affect and/or damage the Thyroid. My TSH levels were normal after chemo, but then after several months on Durvalumab, they went through the roof due to drug induced hypothyroidism. I have been on Thyroid hormone replacement meds ever since. My ONC believes that I will now be for the rest of my life. Recommend that your mother make sure that they monitor her TSH levels. Just based on my experience, the Durvalumab period was no worse, but not much better, than the chemo. The itching from the skin rashes were the worst side effect for me back then. Currently my Targeted Therapy Alectinib so doing its job of keeping me NED (at least for the time being). I've been it for almost 3 years now and am quickly approaching the Mean PFS duration. Tom Galli, Opal, Justin1970 and 1 other 4 Link to comment Share on other sites More sharing options...
Opal Posted August 11, 2022 Share Posted August 11, 2022 Kelvin- I didn't feel really bad during immunotherapy. Worst side effect was the rash, head to toe. It didnt itch or anything just red blotches head to toe. As it appeared in one new area it disappeared in the last. Dermatologists couldn't figure it just said from immuno. Also fatigue and lack of sleep. I found eating many small meals a day worked better. I got hooked on Ramen noodle soup. And milkshakes to keep my weight on. Justin1970 1 Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 14, 2022 Share Posted August 14, 2022 OPAL!!!!! So nice to hear that you are doing well. We "walked" side by side through the scariest of times (plus the pandemic was rearing it's ugly head). Yes, you are the perfect example that there is life on the other side of this. Jersey girls are tough!!! Love and hugs... Michelle Justin1970, Opal and Tomm 2 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted August 14, 2022 Share Posted August 14, 2022 Another CT tomorrow to see if all is still good. 2 1/2 years since last Imfinzi. hey Jersey girls, great to see you both still going strong. We are a tough breed. hugs and kisses 😘 Rower Michelle, Tomm, Justin1970 and 1 other 4 Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 14, 2022 Share Posted August 14, 2022 Hi Barb!!! Same for me-scans on Tuesday, coming up to the four year mark… hard to believe that most days I don’t think about lung cancer at all on some days… just carry on as best I can! Michelle Tom Galli, Opal, RonH and 1 other 4 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted August 14, 2022 Share Posted August 14, 2022 Glad to see all you guys doing well after infimzi give me hope for my mom! Justin1970 and Rower Michelle 2 Link to comment Share on other sites More sharing options...
Barb1260 Posted August 14, 2022 Share Posted August 14, 2022 Michelle-me either! Rower Michelle, Justin1970 and Opal 3 Link to comment Share on other sites More sharing options...
Kelvin4426 Posted August 17, 2022 Share Posted August 17, 2022 Hey guys was wondering was treatment bad evertime u went in or did they get better throughout each treatment. My mom has treatments once a month and was wondering If she would feel better after each treatment or will she be tired/symptomatic after each session BridgetO 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted August 21, 2022 Share Posted August 21, 2022 Kelvin. I never felt better or worse through treatment, it was always tired about 4 days after then for a few days. Then I would feel normal until the next infusion. Still waiting on test results tomorrow, which I’m nervous about because I always get them 2 days after. It’s been a week and nothing in my inbox. Tom Galli 1 Link to comment Share on other sites More sharing options...
Tomm Posted August 22, 2022 Share Posted August 22, 2022 Barb and Rower I'm on the same train your two are. Scan this friday, 2 1/2 years since last durva... Scanxiety time until results are known... What did the beach say to the tide when it came in? Long time, no sea. Tom Galli, Opal and Rower Michelle 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted August 23, 2022 Share Posted August 23, 2022 Tom-we ended Durva about the same time. I’m thrilled to report that I am still NED!!! I’m sure you will do well too! michelle-how was yours? Opal, Tom Galli, RonH and 1 other 4 Link to comment Share on other sites More sharing options...
Tomm Posted August 23, 2022 Share Posted August 23, 2022 Barb..I remember when we started at the same time just a week apart great news to hear you are still NED!! In what state does the Willamette River flow?… Liquid Tom Galli, Opal and Barb1260 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted August 24, 2022 Share Posted August 24, 2022 Still NED here too! RonH, Opal, Tomm and 1 other 4 Link to comment Share on other sites More sharing options...
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