Tomm Posted July 10, 2019 Share Posted July 10, 2019 Robert thanks, I'll ask for a full check of those on july 18th when I get blood and chair again..hope your doing well as you near the end of this time in your healing Charles 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted July 10, 2019 Share Posted July 10, 2019 Tomm-so far my thyroid numbers are good. I nap during my infusion with a warm blanket because it’s a refrigerator in the infusion room. Then I treat myself to Starbucks for a large iced coffee and a snack on my ride to work. Link to comment Share on other sites More sharing options...
Barb1260 Posted July 10, 2019 Share Posted July 10, 2019 Tomm-what is Amor? Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 10, 2019 Author Share Posted July 10, 2019 Tom I am doing ok except for the chest infection and the cough that comes with it, Antibiotics will on my list come August-14 last infusion and yes i feel more of the effects since #18 onwards. The key for me has been the focus on getting to #26 and dealing with the side effects along the way it does drag out for me now but sure glad i stuck it out. Link to comment Share on other sites More sharing options...
Tomm Posted July 10, 2019 Share Posted July 10, 2019 Barb ..Armour Thyroid (thyroid tablets) are used to treat hypothyroidism due to many causes. Robert .. I'm a long way from #18 but we are all different, maybe side effect happen as the cancer is being attacked and killed when durva exposes it? Stay as strong as you sound, your part of the reason I decided to take this stuff after reading your journey from the beginning and your positive attitude that it will help us. We really are with a great group to pioneers.. Link to comment Share on other sites More sharing options...
Charles Posted July 10, 2019 Share Posted July 10, 2019 Great advice Tomm, my thyroid counts have been low since chemo and just recently my tsh level was at 45 so I have been put on hormone replacement pills once a day. The thyroids count has led to a brain scan with orbitals and massive side effects to include complete muscle axacerbation with menial tasking, energy levels and strength nill , weight gain of ten pounds in 1 week ( hypothyroidism and the eye thang was all due to that) so maybe we nip that one in the bud. can still take Imfinzi during this hormone replacement. Sorry to interrupt the conversation, Charles Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 10, 2019 Author Share Posted July 10, 2019 Yes and it seems you missed out on the dreaded itch and rash. Everyone will have different side effects and did not have to many come to think about it now one ER visit. I should have taken more care in my energy levels due to the fatigue.Bit late now. Link to comment Share on other sites More sharing options...
Charles Posted July 10, 2019 Share Posted July 10, 2019 Tomm, Levothyroxine 0.05 mg tabs once a day for me Link to comment Share on other sites More sharing options...
Charles Posted July 10, 2019 Share Posted July 10, 2019 I would like to convey a public apology to Eagle13, Robert Macauley, and all who read and were offended by some comments I made a few posts ago in this forum. I was contacted by Tom Galli about these posts and chose to edit them for content but also wish to go a step further by issuing this apology to all concerned and hope that I will be allowed again in the good graces of my fellow Imfinzi pioneers older and newer. Thank you, Charles...... PaulaC, Rower Michelle and Tom Galli 3 Link to comment Share on other sites More sharing options...
Tomm Posted July 10, 2019 Share Posted July 10, 2019 Charles you did not interrupt the conversation, you are a very important part of it and you have show us all how your mental strength can carry us past the physical issues we have. The TSH you have makes mine look small. We are all allowed days of low blood sugar, you have gone through some really hard side effects. I'm glad to see your feeling better today. Tom Galli and Charles 2 Link to comment Share on other sites More sharing options...
Charles Posted July 11, 2019 Share Posted July 11, 2019 Tomm. Thank you for that but I must confess that my mental strength sometimes makes my typing fingers "say" things they ought not to say, Thank you for your inspirational words and techniques, as we all go into our different battles to slay our many dragons on our road to the defeat of the beast! Charles.... PaulaC, Tomm and Tom Galli 3 Link to comment Share on other sites More sharing options...
Rower Michelle Posted July 11, 2019 Share Posted July 11, 2019 Hi Tomm- Thanks so much for asking! I really appreciate our family here, more than you will ever know. Most of the other ALKs are over on FB, which I am not a member (long story). Overall, I’m doing pretty well thanks to the targeted therapy, now I’m in “the countdown” for the next scan on 7-23. A $5 Starbucks gift card goes a long way with the scheduler as I only have to wait one day for the result. Evidently bribery works outside of NJ! Oh- another thing I learned in IAC this week, for cancer patients the ideal Vitamin D level is between 40-50. Evidently there were some NIH studies about this. Who knew! I’ve also ditched my selenium tablets in favor of 3 Brazil nuts a day. The Integrative Team we saw (4 hour appointment with nurses, medical students and attending, pays to be a mutant I guess!!) was really big on Food as Medicine so I can spend less money on supplements and more on acupuncture/Message instead. I’ll have blood work in two months to re-evaluate. Will keep you posted! Michelle Tomm 1 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 11, 2019 Author Share Posted July 11, 2019 Michelle Yes the Brazil nuts work as i have been taking 2 a day for last six months. I liked your statement the other day not what IF but What is next. Goes right along with my Que Sera Sera cannot get it out of my head now. lol Bob Rower Michelle 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted July 11, 2019 Share Posted July 11, 2019 Robert-how have your scans been? Link to comment Share on other sites More sharing options...
Barb1260 Posted July 11, 2019 Share Posted July 11, 2019 Well the onc is so pleased with the PET results that I just have to keep going for the infusions and see her after the next CT end of September. Asked her if the Durvalumab causes weight gain, she said no but being cancer free can. Don’t think she means I’m NED yet, I think she’s referring to the little activity left in the tumor. Anybody have head pain that comes and goes or a feeling of pressure in your head? I’m getting a CT on Monday to check it out PaulaC, Robert Macaulay and Tomm 3 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 11, 2019 Author Share Posted July 11, 2019 1 hour ago, Barb1260 said: Robert-how have your scans been? Sept-3 after the last infusion August-14 #26 and meet the doc on Sept-6. I have had pressure in my ears for weeks and if not cleared up she will add neck and head to my upcoming Ct. That is excellent news when they tell you to keep going to the next CT. and number #26 gets closer and closer. Rower Michelle and Barb1260 2 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 14, 2019 Author Share Posted July 14, 2019 Intresting trial news April 2019 Trial design PACIFIC-R is an international, observational study that will enroll ∼1200 NSCLC pts who have received durvalumab as part of early access programs (EAPs) between Sept 2017 and Dec 2018. In the EAP, eligible pts are adults with histologically or cytologically documented unresectable, Stage III NSCLC, regardless of tumor PD-L1 expression, who have not progressed after definitive CRT. Pts received durvalumab (10 mg/kg intravenously) every two weeks. Pts will be enrolled in the PACIFIC-R study after discontinuation of the EAP in participating countries. Data will be abstracted from pts’ medical records at several time points within the 5 year study period. Primary endpoints are PFS (investigator assessed) and OS. Secondary endpoints include PFS and OS in pt subgroups; time to distant metastases; sites of disease progression; adverse events of special interest leading to treatment interruption, discontinuation or medical intervention; and descriptive analyses of demographic and clinical characteristics of pts treated with durvalumab in a real-world setting. Recruitment for this study is ongoing. https://oncologypro.esmo.org/Meeting-Resources/European-Lung-Cancer-Congress-2019/PACIFIC-R-first-real-world-study-of-patients-with-unresectable-stage-III-NSCLC-treated-with-durvalumab-after-chemoradiotherapy Tom Galli 1 Link to comment Share on other sites More sharing options...
Charles Posted July 16, 2019 Share Posted July 16, 2019 #9 gone for me, Pet/ct scan results in= Shrinkage, SUV less. mediastinal node gone, with small plueral effusion, and small pericardial effusion, no new C ANYWHERE, Hoorah! Great scan! Steff, Rower Michelle, Tom Galli and 1 other 4 Link to comment Share on other sites More sharing options...
Steff Posted July 16, 2019 Share Posted July 16, 2019 Nice Job Charles! Link to comment Share on other sites More sharing options...
Tom Galli Posted July 16, 2019 Share Posted July 16, 2019 Charles, WONDERFUL! Your tumors are heading the right direction. Stay the course. Tom Link to comment Share on other sites More sharing options...
Charles Posted July 16, 2019 Share Posted July 16, 2019 Thanks Tom and Steph, Also answers questions whether prednisone stops the imfinzi from working, NO it doesn't, even the maximum dosage of prednisone (1mg per kg of body weight per day) and even when on 50 mcg of thyroid hormone replacement pills, and even low PDL-1 (10%) THANK YOU LORD! PaulaC, Steff and Tom Galli 3 Link to comment Share on other sites More sharing options...
Barb1260 Posted July 16, 2019 Share Posted July 16, 2019 Yay! Congrats! Charles 1 Link to comment Share on other sites More sharing options...
Charles Posted July 17, 2019 Share Posted July 17, 2019 Yep, and even after not having a treatment for 2 weeks, then a month the second time, and now this time,6 weeks since any new Imfinzi has entered my body. I do have the best oncologist in the universe working my case though, his name is GOD and the other one, one of the best in the world inasmuch as what to do next about all the adverse reactions and side effects I have experienced while on this treacherous journey that we all walk on Imfinzi. I can hardly imagine that all this started out with a tumor larger than a grapefruit and LITERALLY took up my whole lung, had my right lung partially collapsed and now is about the area of a WALNUT, 2 1/2 inches x 1.5 inches and the radiologist doesn't use the word LARGE anymore in his description of it in the latest PET/CT, it is now a "masslike conglomeration" I would say this is grounds for a celebration in my household but our work is not yet finished, we have a walnut to eat! Talk at yall later.;...... Charles Tomm, Steff and Tom Galli 3 Link to comment Share on other sites More sharing options...
Robert Macaulay Posted July 18, 2019 Author Share Posted July 18, 2019 Implications of Durvalumab Following PACIFIC Update This is from the update. I think there’s no doubt in my mind that the results of the PACIFIC trial really bring us to a new standard of care in stage III disease in that the potential benefit in long-term survival and overall cure rates is so significant that the risks are really quite minimal in my opinion with regard to that thinking about the risk/benefits sort of thing. I think the investment, from the patient’s perspective, of committing to a year of therapy is not insignificant, but that investment does translate into a 32% reduction in the risk of death. That is very significant, and most patients with stage III non–small cell lung cancer, with a good performance status, their goal is to be cured. And when you say to them that they have a slightly greater than 30% reduction in the risk of death, that is significant to patients, and certainly the risk that we put them at with regard to use of checkpoint inhibition, I think, is minimal relative to that 30%, 30-plus percent reduction in the risk of death. https://www.targetedonc.com/investigator-perspectives/socinski-consolidation-nsclc/implications-of-durvalumab-following-pacific-update Tomm 1 Link to comment Share on other sites More sharing options...
Barb1260 Posted July 18, 2019 Share Posted July 18, 2019 Thank you sir. That is wonderful news! Charles 1 Link to comment Share on other sites More sharing options...
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