Robert Macaulay

Opal Thanks
Yes time just flies when your having fun and overTwenty two thousand views in one year and growing.The intresting part for me is just starting once you stop the drug. 
What next  Que Sera Sera😎
Just back in from one hour great walk on the trails with the dog

RonH
Come to think about the ONC test MY onclogist ordered that test and it was a once only never did see the results.As soon as my thyroid went ballistic the doc ordered blood tests done for t3 and t4 and still monitors those to this day for my thyroid tsh which is now back to normal.It will be intresting once i stop this drug if all my blood work goes back to normal whatever that might be now.

DFK
Your well on your way with the drug and i like this statement stands out for me.
A wise MD told me to let the drugs take care of my cancer, my job is to take care of my body. I try to eat nutritiously, exercise and most of all, drink 8-9 glasses of water a day.
I also follow the above r regime and have my last infusion in 11 days.
Bob

P.S. to Bob......I don’t drink any alcohol but I think I would make an exception for champagne in 11 days when you receive your last Durvalumab dose.....WoooooHooooo....Congratulations. All the best to you and keep in touch with this baby you birthed😀
DFK

A beautiful morning to be grateful.
Bob-Thank you for initiating this very valuable forum where dialogue is free flowing, informational and a venue for objective data as well as our subjective experiences. Online Durvalumab support and anecdotes were skimpy at best. I was not interested in pharmaceutical data, I wanted to hear from real people who were trudging thru the immunotherapy fields.
Charles-Yes, everyone is different. Of course you had to pick one of my fav all time books/movies to quote. I have been an outlier since my diagnosis. My oncologist radiologist told me on my last and 30th radiation, "Get out of here, you always looked like you didn't belong here, like you popped in looking for directions". I was and am very fortunate to have experienced  minimal adverse reactions and side effects.
Ron H-Thank you for your insightful thoughts on your journey with Cancer and the impact it has had on your family. Regarding the two week lab draws of Cortisol and TSH. This is the standard of practice my Cancer Center has adopted for Durvalumab. Opinions vary widely on the necessity of Glucocorticosteroid screening but there is no argument that Immunotherapy adverse effects are primarily of endocrine related toxicities; Thyroid, Pituitary and Adrenal. ACTH (Adrenal monitoring) currently is not utilized in routine screening. Diabetes Mellitus being another hormone related adverse effect, is screened with the glucose levels. Without getting into the pathophysiology of Prednisone, remember, it is a glucocorticoid to combat the adverse effects of immunotherapy. A month of high dose Prednisone resolved my grade III pneumonitis and permitted me to restart my Durvalumab dose #9.
We all know our body better than anyone else and reporting unusual occurrences FOR US, is key in warding off serious complications that may develop later.......that"s my two cents for today......thank you for listening.
DFK
 
 
 

Bob - 
Like Opal, and I am sure many others here, I thank you for starting and keeping this "Durva Club" active. It is now one of my favorite places to visit when online and one of the ones I check first.
Although I also do not get copies of the actual scans but the CT Scan readings and interpretations by the Radiologist MD are posted (normally by the next day) where I can access and read his/her report. Sometimes I get to them even before the ONC. Normally the ONC offers to pull the actual scan up and show them to me, of which I usually take him up on his offer. Obviously looking at it tells me little or nothing as I can barely tell whet I am looking at so he has to spend most of the time pointing out things. In the past I did teach myself to read my own EKG's after all my heart issues, at least enough to see if it looked "normal", but the CT, PET and MRI's are way too complex for this Mechanical Engineer to comprehend. The EKG techs didn't much appreciate me wanting to see my EKG strip before the Cardiologist, but normally relented and let me take a peak. Normally the Cardiologist walks in and tells me that my EKG looks good but that I am still in A-Fib, and I tell him I know, I already checked the EKG. By the way, my Cardiologist is by far the best doctor I ever met, and if he told me to go stand on my head in the corner, I would do it. So if anyone is near central Ohio and needs what I consider a great Cardiologist, contact me and I will pass along his name. 
Rather than just go along for the ride on this journey, I want/demand to be an active participant in it and with my treatments. I imagine the Doctors and Nurses deem me as sometimes a difficult patient, but my ONC says he appreciates my direct involvement, questions and input. (I even was asked to proof read and comment on a chapter in book he is writing). I do listen to what he says, and then the questions flow and I tell him what I think. Even the Infusion Nurses know that before I will let them start the IV, that I will want to personally see the lab results first. Just telling me that they are good to go, is not sufficient, so they now just bring me the printout along with the IV. Having now have had 28 infusions (Chemo & Immunotherapy) I know all the Infusions Nurses on a first name basis and they know me. I am always polite and respectful to them, but that is a two-way street and that I expect the same.
Anyway thanks again for this forum.
AND please do keep us posted on the post-Durvalumab events. I am not far behind you and that is starting to weigh heavily on my mind. The wait and see approach bothers me a little as I have always liked to be pro-active and plan things ahead.
-Ron

RonH
I can understand your involvement as i worked closely with many Mechanical Engineers over the years young and old in the oil and gas industry.
Each individual handles there treatment and doctors visits differently, I prefer to let the doctor do all the talking as i have had limited speech since my cancer operation in 2003 Larengectomy  and usually i  am happy with that. I get my treatment done at private clinic as Imfinzi are paying for all my treatment but my doctor at the local hospital is the one that approves my infusions after viewing my blood work. I see Onc  every three months with Teleconference for scan results and direction going forward saves 400 mile round trip and she has set one up for Sep-6 at the local heath center it does not bother waiting for results not much i can change.But i do plan ahead due to my stint in planning dept for three years at work.😎

Opal Thanks
Yes time just flies when your having fun and overTwenty two thousand views in one year and growing.The intresting part for me is just starting once you stop the drug. 
What next  Que Sera Sera😎
Just back in from one hour great walk on the trails with the dog

Opal
Yes 22,000 Views
Yes i will update on my condition as time goes on. in Canada we do not get copies of our scans not that i want them anyway. And i can only go what the doc says if she is happy so am i.
The more people that complete the full treatment and report there condition good or whatever will help those still in treatment going forward.
Bob

Opal
Yes 22,000 Views
Yes i will update on my condition as time goes on. in Canada we do not get copies of our scans not that i want them anyway. And i can only go what the doc says if she is happy so am i.
The more people that complete the full treatment and report there condition good or whatever will help those still in treatment going forward.
Bob

I think that is 22,000 views!!!
So then please keep us posted on that interesting part.  
Yeah, for the dogs too! Got to love 'em.

Welcome DFR
I am also a "newbie" here, but have been in this NSCLC fight for almost 16 months now. It's been a long and sometimes difficult journey, but when I start to get depressed I just remember that I am not the first nor the only one to fight this fight (as evidenced here). I am thankful for all the research that is ongoing and for the potential treatments such as immunotherapy that are being developed. I keep remembering that those with this same diagnosis 30 or 40 years ago would have likely passed by now. I know back in the 70's my uncle was diagnosed with cancer (don't know type or stage), was sent to the hospital for radiation treatments and never checked out as he died a few days later before being able to check out. My mother always believed that it was an overdose of radiation that actually killed him so quick. (By coincidence, it is exactly the same hospital that I normally go into now). As far as I am concerned, a great medical staff there and good facilities, but their "Business Office" and "Pre-Registration" people leave a lot to be desired as they have only $$ on their minds. My uncles father (my maternal Grandfather) also passed from cancer back in the 1940's. I can't help thinking, and thanking God, that I now have such a better chance at beating this than they did. At the very least, Durvalumab typically increases the PFS so it has given me time to prepare for what is inevitable at sometime for everyone.
As soon as I read you posting this morning I thought to myself wow, there is someone who follows their treatment closely and is very articulate. Only later did I read your intro and discover that you are a RN which explains a lot. Apparently we have several medical professionals on here having joined the "Durvalumab club" themselves. 
I did notice on your post that you mentioned that your Cortisol level is routinely tested as part of your bloodwork. I am curious of the others here, does your ONC test for that as well? I just went back through 18 months of blood tests and did not find my Cortisol or ACTH level ever being tested. I will be inquiring with the ONC my next visit (or I may just call him before hand) and inquire, but I am curious if most people do or don't have that test performed. With just finding out that I should have had my TSH levels checked long before they started to, I am very curious if this one should be routinely checked as well.
Again welcome DFR. My first job out of college (back in the late 70's) was down in your neck of the woods near New Orleans. Always hoped to visit the area again and maybe will do so once my treatments are over. One of my bucket list goals is to revisit one more time every state/city that I have ever worked and lived in over the past 60+ years (and maybe throw a few new ones in for good measure). I can hardly wait to retire next year!
Ron

Bob😎,    it is coming up on the one year anniversary in a few days, of YOU starting this forum.  I just want to say THANK YOU!!   
You have shared so much and been an inspiration. I'm counting down infusions not far behind you I pray. Time sure has flown by.
Thanks to all posting and connecting here.
 

First post here. 
Utilizing forum for comparison of my experience with Durvalumab to others and find your comments and experiences invaluable. 
As we navigate this "new" life, it's comforting to know, we are not alone. Diagnosed with Lung Cancer Stage IIIA September 2018. Radiation and Chemo completed late December 2018. Started Durvalumab January 2019.
Labs are done every two weeks, usual CBC, CMP, TSH, Cortisol. So far, all my labs have been within normal values. I am 7 months in but have missed two doses of Durvalumab secondary to pneumonitis. I have received #14 doses so far. 
MD appointments every four weeks. MD available online should I have any questions or concerns. Had a bout of infectious bronchitis and was able to procure antibiotics online with a status report while receiving Durvalumab.
Cat Scan done 2 weeks after last radiation and chemo treatment in January 2019 which showed a 35% reduction of my tumor.
Cat Scan repeated in April 2019 for my complaints of shortness of breath. Revealed Grade 3 pneumonitis. Durvalumab x2 doses held and high dose Prednisone ordered. 
Cat Scan repeated after Prednisone completed May 2019, pneumonitis resolved and Durvalumab restarted. Tumor almost non existent. Measures 1cm (original tumor measured 5cm). My oncologist believes my pneumonitis was a result of my radiation therapy and my Radiation Oncologist believes my pneumonitis was a result of Durvalumab. Both had solid data to base their findings on, but it didn't really matter as treatment is high dose Prednisone regardless of genesis.
Pulmonary function tests completed at the time of my diagnosis was within normal limits for my age and gender, 65/female. Pulmonary function tests completed in April with pneumonitis diagnosis showed a 50% lung function reduction. As I relayed to my MD, my lungs are shot! And I don't expect any real improvement due to radiation pulmonary fibrosis.
My primary side effect is localized itching to my back area after a one time breakout of tiny white pustule rash. My capacity for physical activity has decreased significantly due to my poor pulmonary function but I push myself to be active with hiking and biking.....it just takes me a little longer. I also find fatigue is my new friend. Fatigue used to visit me every now and then but recently, fatigue has been a faithful daily companion. I currently am experiencing a sore throat with some hoarseness to my voice as well as a loss of volume and pitch. I was diagnosed from my symptoms as having acid reflux (post radiation to my esophagus) and was started on Prilosec. If after being on Prilosec for two weeks and there is no improvement in my symptoms, I will request a diagnostic visual scope of my vocal chords and throat for a more definitive diagnosis. 
During chemo and radiation, I was able to maintain walking as my main physical exercise. Three months after chemo and radiation, I started to ride my bike for 15 minutes (that's all I could tolerate) and am currently up to 8 miles/1 hour with a slight incline, 3x/week. I do push myself but I believe I need to contribute as much as I can to my pulmonary health and the views are beautiful on our bike path.
A wise MD told me to let the drugs take care of my cancer, my job is to take care of my body. I try to eat nutritiously, exercise and most of all, drink 8-9 glasses of water a day. Previously I was lucky if I drank a couple glasses of water a day. I believe increasing my water intake to 8-9 glasses a day has kept a lot of the side effects at bay.....my opinion of course, but anecdotally, it has worked for me. I'm no fanatic with my diet but I am cognitive that nutritional food choices is the best way. 
Physical side effects have been nominal starting with chemo, radiation and now Durvalumab.
Emotional challenges are present. I have chosen to disclose my diagnosis only to my spouse and adult children. I am inundated with love and support and feel gratitude for every single day I am living. I am very involved with my three grandchildren, ages 8, 7 and 5. They are active and they help to keep me moving and on my toes even when I feel fatigued. I am very involved socially with my friends and I rather like the fact that they do not know about my diagnosis.
I was preliminarily diagnosed during a visit in the Emergency Room. After that visit I met with my primary care physician and decided that I would have more faith and trust in receiving care in another city which currently requires me to fly to every two weeks. During my chemo and radiation, my husband and I were fortunate to stay at the American Cancer Hope Lodge and we commuted back home on weekends to keep up with our "normal" lives. Sure it’s costly and expensive and puts a real dent in our budget, but I feel I made the right decision and all that money that I spent on cigarets, are now directed to taxi's and plane fare.
Yes, I am an addict and smoked from the age of 14 and quit 6 months before my diagnosis. I say I am an addict because smoking has been a lifestyle for me and though I have no intention of ever smoking again, I still remember how my anxiousness was alleviated, how calming that cigaret could be. Enough said.
I do feel overwhelming sadness at times when I think about my "cancer" diagnosis and how much my life has changed BUT I am very fortunate to feel an immense amount of gratitude for how well and on track my cancer treatment is and has been. I tend to go to "dark" places if I start to feel new pain, new symptoms. My mind is convinced that a new cancer is growing. My burden to bear, my burden to not go there. It is a work in progress. I am getting better at not visiting those "dark" places.
Reading this forum has validated that I am on track and that my medical care is on par with others. I thank each and every one of you for taking the time to share your experiences. 
 
 
 

I accidentally posted this as a new topic on another page, sorry for the double post..
Thanks ALL for the warm welcome. Can’t say that I’m overly thrilled to find myself here, but very happy that this group exists to share our journeys, experiences and suggestions.
A few return comments to those that inquired or sent me a note:
Tom G - I appreciate the tips on the dry mouth and loss of taste. I will certainly give them a try. I had made it through the chemo and radiation without that side effect, and it just recently started while half way through the Durvalumab program.
Bob – Regarding the number of Infusions: Yes I understand that the approved current standard protocol is an infusion every 2 weeks for 12 months maximum (which works out to potentially 26 infusions), however my ONC stated that he prescribes only 24 in that 12 month period, and that is also what my Medical Insurance Company has pre-authorized me for, specifically 24 Infusions over the 12 month period (or until disease progression or unacceptable toxicity/side effects). My ONC stated that they don’t have enough data yet to determine if the every 2 week schedule is the best one, or would a 3 week interval be better. He also stated that the 12 month period simply came from the trial(s) so that is what was used for the standard of care. He says once more data comes in over time (presumably data from some of us) that they may adjust the frequency, dosage and duration for improved results in the future. Whatever it is, I am grateful for the extended PFS and hopefully a significantly increased overall survival period. When I ask the ONC what is next, I am always told that I was “treated with the intent to cure”, so we have to wait and see. Yes, even my employer was shocked and dismayed when they added up my sick time over the past 18 months which included time off for the lung biopsy, the CTs, PET and MRI, the EBUS, the chemo port surgery, the Radiation Treatments, the concurrent and then consolidation chemotherapy, numerous blood tests, and now the immunotherapy infusions, only added up to 240 hours over a year and half period. My company (a Fortune 500 company), with the exception of one HR lady, has been very supportive of me.
Tomm – My highest TSH level was 44.03 back in late May. It was the first thyroid test that my ONC ordered after starting Durvalumab infusions last November. Prior to that, an earlier TSH test in March of 2018 (ordered by my Primary Care) was 3.17 which is in the normal range. My ONC knows that I know and he admitted the they dropped the ball on monitoring my thyroid after starting the Durvalumab. Getting hypothyroidism (and in some cases hyperthyroidism) is apparently fairly common and he knows that I know that. I can’t say how many months I was exhausted and continuing to gain weight before they tested me. I was immediately started on 50mcg Levothyroxine and then after a month, the dose was increased to 75mcg. The ONC says that he expects me to end up with a 125 to 150mcg dose being required, but needs to slowly work up to that dose. Meanwhile, after being on the Levothyroxine for 8 or 9 weeks, my TSH has dropped to 34.17. Still a long ways to go to get back down to under the upper normal limit, but it shows a continued improvement since starting that treatment and I definitely feel my energy levels have already increased. -
I have never had my PD-L1 Expression taken. I had inquired early on when starting the Durvalumab treatments about it and my ONC stated that the standard of care for unresectable Stage 3A NSCLC was Imfinzi (Durvalumab) regardless of PD-L1 or EGFR-mutation status and that he only orders those tests if there is an indication that the Durvalumab was not working (i.e., disease progression) or if I needed to stop the treatments due to the side effects. So I didn’t argue with him about it. -
My latest blood test indicates that my Glucose has just jumped up to 155 after being always in the normal range since the very beginning of treatments, so that is something new that I need to keep an eye on although the doctor and nurses didn’t even mention it as being high. I did see someone mention their Creatinine and HGB levels. My results have always been and still is near the middle of the normal range for those, however my Lymphocyte count has been on a steady decline for the past two months on Durvalumab and is now at LY# = 0.6.
Charles – Before starting the Durvalumab, I had read about all the side effects and that they can start at any time (even after the treatments have ended) and be of any severity, up and including death, so I definitely had my concerns. But then I thought, what is my option, Stage 3A NSCLC certainly has a very poor prognosis without treatment, so I just went back to the old saying of “what doesn’t kill you makes you stronger” and decided to proceed full speed ahead. Any new pains or ailments usually gets my attention pretty quick and I bring them to the attention of my ONC. Although I understand that the Prednisone can moderate the side effects if needed, my ONC says that this takes time to act (of which you may not have) and due to the massive doses of it required, it has its own serious side effects and he only prescribes it as a last resort on the more serious side effects and grades.
I also have numb and/or tingling toes but that started while I was in the Chemotherapy and still remains almost a year later. I believe that it may be permanent nerve damage due to either the Taxol or the Carboplatin chemo drugs. As far as the Durvalumab side effects, I seem to have quite a few of the more “normal” side effects, but none thankfully (so far) at any level that would have me discontinue my Durvalumab. I did have the AST & ALT Liver Function Tests go high initially but those returned to normal after temporarily withholding the Durvalumab for about 4 or 5 weeks and I haven’t had any repeat scares. I would say the itching was the most prevalent side effect for me and although I was prescribed hydrocortisone crème to help with it, I really didn’t care for it. My ONC then suggested that I take an OTC Claritin (Loratadine) antihistamine pill once a day in the morning, and then an OTC Benadryl (Diphenhydramine) antihistamine pill in the evening to help with the itching. This seems to moderate the itching to manageable levels such that I barely notice it anymore. I just add those two pills to all the others I take daily. I didn’t mention it in my intro but 7 years ago I had a heart attack and had 5 stents put in, and of course if that wasn’t bad enough, I went into V-Fib while in Recovery resulting in the nurses cracking a few ribs while doing chest compressions waiting on the crash cart to show up. Nothing like hearing a nurse to another nurse say ”Oh no we have a problem” and then the whole world goes dark. I woke up with a room full of nurses, technicians and doctors all around me and feeling like I had been beaten with a bat. Quite the adventure! A year later after I had completed my cardiac rehab program, I then suddenly went into Atrial Fibrillation and although I’ve tried cardioversions several times, the normal heart rhythm has never lasted more than a day or two afterwards, so my Cardiologist says that I will just have to live with it as best that I can. It doesn’t really slow me down any or bother me other than every time I get a new nurse taking my pulse or blood pressure, they notice something is amiss and immediately notify the doctors. Due to all this, I take anti-coagulants, blood thinners, cholesterol meds, high blood pressure meds, etc. After starting on the Durvalumab, my blood pressure started to drop to levels as low as 86/58, so my Oncologist, in consultation with my Cardiologist, had me completely stop taking the Amlodipine Besylate prescription  and reduced my dosage of Lisinopril by half. Now my BP runs typically in the 110/78 range. Not too bad for an out-of-shape, overweight soon to be 63 year old who is constantly in A-Fib that has Sleep Apnea and who is now fighting lung cancer. I do wonder if the fact that I wear a CPAP every night that filters and humidifies the air that I breath as well as “pressurizes” my lungs has helped with avoiding some of the lung issues that many experience after the radiation treatments and while in immunotherapy. I do get a little congestion after my infusions, but nothing to the level that evens have me consider calling the doctor or nurse.
One thing that I have learned while going through Chemo-Radiation, Chemotherapy and now Immunotherapy, is to keep an eye on your blood tests yourself and demand copies of all the results to look for changes from the previous results. Review them yourself and ask questions. The test results will definitely change over time and over the course of your treatments but watch for any abnormalities yourself as well and bring them to your doctors attention. My ONC knows me well enough by now that as soon as he gets my results, he has a nurse call me with them even if they’re perfectly normal because he knows I will be calling him if I see anything out of the normal. Also if you see  online discussions on certain tests such as thyroid TSH levels and your doctor is not having those checked, inquire as to why.
Thanks again all for being here. - Ron

RonH
Great to here things are settling down for you, and to be still working that is feat in itself, The standard procedure calls for 26 infusions to completion. Yes there is a high attrition rate with this drug and i was aware prior to starting last August, also i said to the doctor last week i would do it all over without hesitation despite the side effects, As long as this drug stops progression and i am stable and scans are good it can stay in my system for ever and ever.This  is now seventeen months of treatments /appointments and i will use your quote  I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. That has been my doctors statement from the beginning and i expect the same reply come Sept-7 when she gets my Ct results. Your on the home stretch to #26
Bob

So very important  to view your blood work, To see the changes this drug is making on your system.Creatine i had to alter my diet, Thyroid went ballastic, t3. t4 checked ect ect.My Hemoglobin is way down again, But one more to go and bring out the iron pills and the antibiotics. and maybe little blue pill for good measure, lol
Last week i had five items out of range but not enough to halt. It is not a walk in the park and i will be glad to take a break after August-14
Bob
 

So very important  to view your blood work, To see the changes this drug is making on your system.Creatine i had to alter my diet, Thyroid went ballastic, t3. t4 checked ect ect.My Hemoglobin is way down again, But one more to go and bring out the iron pills and the antibiotics. and maybe little blue pill for good measure, lol
Last week i had five items out of range but not enough to halt. It is not a walk in the park and i will be glad to take a break after August-14
Bob
 

My Experience:
Last year back in May/June of 2018 at the age of 61, I was diagnosed with Stage 3A NSCLC after a low dose CT scan indicated possible tumors. A full CT was next along with a Lung Needle Biopsy followed a few weeks later with a endobronchial ultrasound (EBUS) with needle aspiration that was used to confirm the diagnosis. I also had additional CT Scans, a Pet Scan and a Brain MRI to confirm the staging. In mid-June 2018, I started concurrent radiation and chemo treatments for 7 weeks (radiation daily and chemo once per week). Then there was a short month long break to recover some, then followed by of a higher dose consolidation chemotherapy weekly over the next 5 weeks. During this second chemotherapy is when my hair said enough is enough, we’re out of here and I lost every single hair on my body. I had always wondered what I would look like bald but was disappointed to discover that I would have an uncanny striking resemblance to Uncle Fester of the old Adams Family TV show. Although I had some other minor side effects from the radiation and chemo, I really didn’t experience anything really significant and little or no nausea. The chemo did significantly lower my white blood cell count and I was advised to avoid crowds as much as possible.  My ONC said that I handled the chemo better than 95% of his patients. Post chemo radiation CT’s indicated good shrinkage of all tumors and no new ones. Of course I was also developing radiation fibrosis so it is difficult to get good measurements due to all of the scar tissue from the radiation.
I then had another 4 week break and then at the beginning of November 2018, I was started on Durvalumab as my cancer had not progressed after the chemo-radiation therapy. The initial side effect I got was a minor rash and itching everywhere, but not to the degree that concerned my ONC. However after the second infusion, my liver function test results (AST & ALT) went up significantly, and I was pulled off of immunotherapy for the entire month of December. By the beginning of January 2019, my liver function tests returned to normal and my Durvlumab treatments resumed. This time, it had no impact on my liver and those blood tests remained and still are well within normal levels. Several CT scans over the year continued to show shrinkage with no new developing tumors. I also no longer get a rash, however I still itch some, especially for a few days after the infusion. Also I will be fatigued for about a week or so but was still able to continue working full time (office type work). While I do not experience anything in a significant amount, I do have muscle aches, some chest congestion, occasionally mild constipation, and of course the itching. After Infusion #12, they started checking my Thyroid TSH levels as part of my blood tests every other week before my infusion. As it turns out, my thyroid had virtually shut down and I now have Hypothyroidism, likely a side effect of the Durvalumab. This helps explain why  I was getting more and more fatigued every week, plus I was gaining a lot of weight. Also about 6 weeks ago I developed a dry mouth that the ONC also contributes to the Durvalumab treatments. I have now been started on a thyroid hormone replacement pill every day and after almost 6 or 7 weeks now, I can feel my energy levels significantly increasing. I won’t be running any marathons, but of course I didn’t do that before my diagnosis either. The ONC says he is working my thyroid medicine dosage up to the proper level over the next few months. Unfortunately I still have the dry mouth and have now lost being able to taste anything I eat but am very sensitive to anything spicy in my mouth. I can only barely sense sweet and salty, but no real taste remains.
My hair did manage to grow back this Spring, but now kind of curly and thicker than before. My entire life I had straight hair so this is a new look for me, and a whole lot better than the Uncle Fester look I had last winter.
This past Monday (7/29/2019) I received my 17th Durvalumab infusion and hope to be able to get all 24 approved treatments in. My ONC says that he and the others in his practice have had very few patients be able to receive the full course of treatments, with most being pulled off before half way due to the side effects, so I consider myself fortunate to make it this far. Here in another 3 weeks, I have another set of CT scans and another Brain MRI scheduled. I am really hoping for good news. Anyway, I just wanted to share my story and let those out there just beginning their journey into this, that there is hope. If all goes well, I will complete my Durvalumab treatments in late October.
I did ask my ONC what if anything is next and never received a very good answer other than we’ll see how things are at that time. I kind of got the impression that as long as the CTs / MRI indicated no progression, that we move on to a “wait and see” period. Anyone out there have any thoughts or experience with this?
Thanks, Ron

Some recent interesting news going forward
Imfinzi is the only immunotherapy to demonstrate overall survival at three years in unresectable Stage III non-small cell lung cancer.
Data presented at ASCO 2019 showed 57% of patients 
alive at three years vs. 43.5% on placebo
PUBLISHED 2 June 2019
https://www.astrazeneca.com/media-centre/press-releases/2019/imfinzi-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer02062019.html

Some recent interesting news going forward
Imfinzi is the only immunotherapy to demonstrate overall survival at three years in unresectable Stage III non-small cell lung cancer.
Data presented at ASCO 2019 showed 57% of patients 
alive at three years vs. 43.5% on placebo
PUBLISHED 2 June 2019
https://www.astrazeneca.com/media-centre/press-releases/2019/imfinzi-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer02062019.html

Some recent interesting news going forward
Imfinzi is the only immunotherapy to demonstrate overall survival at three years in unresectable Stage III non-small cell lung cancer.
Data presented at ASCO 2019 showed 57% of patients 
alive at three years vs. 43.5% on placebo
PUBLISHED 2 June 2019
https://www.astrazeneca.com/media-centre/press-releases/2019/imfinzi-is-the-only-immunotherapy-to-demonstrate-overall-survival-at-three-years-in-unresectable-stage-iii-non-small-cell-lung-cancer02062019.html

Hey Tomm. Yup #7 today. Not really having any side effects. Can’t even say I’m fatigued. I feel more tired from the Benadryl they give me before the Imfinzi than any other time in the 2 weeks between. Other than that I feel normal. How are you doing?  

Hi Barb,
I went to my outdoor event in the woods and after walking on trails for  1 1/2 miles I'm still recovering from the fatigue and better every day. I have an energy bank to use per day and I took an advance last week, still paying back. I feel fine and my human host will recover soon.  It's really good to hear you have no side effects as I know you were concerned before you started taking Durv..

Such great news to see The Durva Club kicking butt!