Sillycat1957

Roseann-I loved getting to know you via your writings. You have spunk, humor and spirit, thank you for sharing. I stopped smoking cold turkey after 50 years....it was hard but I was determined...Six months later I get my Stg 3A diagnosis.....talk about a WTF moment. I remember telling my doctor that dealing with the anxiety of my diagnosis was really hard without my trusty crutch...the cigaret. Oh well, seems like that was lifetimes ago. Sounds like you have been able to find a happy medium and balance with your support "drugs" to continue with your Durvalumab while quieting your other medical challenges....always a balancing act, but you're pulling it off.
RonH-Yeah, couple steps and time now added to the start of your treatment but I think, it's a smart move to get the EBUS and cover your bases thoroughly before going forward. You're in my prayers....hang tough🙏🏻
Take care everyone, Blessings to all, Gratitude for today
DFK

Ron H
So sorry, for the backward movements.... on the other hand, all of your results should come in together. Your Bio marker testing will have been have been completed. The lymph node/nodes will have been biopsied and hopefully a new treatment plan will be in place! We fight the fight! Thank you for your encouragement 😀
Namaste Roseann

Ron H
So sorry, for the backward movements.... on the other hand, all of your results should come in together. Your Bio marker testing will have been have been completed. The lymph node/nodes will have been biopsied and hopefully a new treatment plan will be in place! We fight the fight! Thank you for your encouragement 😀
Namaste Roseann

Ron H
So sorry, for the backward movements.... on the other hand, all of your results should come in together. Your Bio marker testing will have been have been completed. The lymph node/nodes will have been biopsied and hopefully a new treatment plan will be in place! We fight the fight! Thank you for your encouragement 😀
Namaste Roseann

Hello, I've been busy the last week! Thank goodness. My mind was really going dark. I think I have mentioned my Bipolar type l diagnosis along with my Epilepsy before? Well, I do take medication for both of these disabilities. However, since my Cancer diagnosis Stage lllA this past year my depression has kicked up a few notches! Ya think! And because of my stupid Epilepsy, which has been well controlled for 5 years now with medication, my selection of antidepressants are limited 😩 A little more history of myself to make this even more a kick in my patootie lol! I am also a recovering alcoholic sober since 01/06/1997 whoo hoo! I have lived a clean and sober life for over 22 years ate healthy did all the right and good things for my body. I managed all my disabilities on a daily basis with the help of my higher power whom I choose to call God, my kids, and some close friends and a few family members and a husband or 2 lol! And most importantly a positive attitude. Prayer and lots of Gratitude. You see the only thing that I could not do was stop smoking, well stay stopped I quit so many times but would always start up again. So I would pry "God please help me to stay stopped this time! I will do anything to not smoke anymore"
BAM!!! Went for my annual physical, PCP sent me for a low dose CT Scan because of my smoking history, found a suspicious looking neoplasm thing, next Pulmonologist, PET/CTscan, MRI Brain, MRI clear, PET scan SUV 15.1 "WTF" 2.1cm and hilar node 1.2cm Metastatic right hilar lymph node. No other evidence of metastatic disease identified. Doc said Stage 1A at this point. Scheduled for VATS surgery RUL. Surgeon said if Lymph node is positive there will be no surgery. I woke up in recovery Lymph node was positive RATS Stage lllA on to line 1 of treatment:            34 zaps of daily radiation 2 rounds of chemotherapy Cisplatin/Etoposide was their drugs of choice I did fairly well, I never had any drugs in my system for years other than my seizure meds and low dose depression meds the occasional pain pill for whatever minor surgical procedure I had. I didn't lose my hair But shaved my head in anticipation I didn't want to be traumatized, what an a-hole move that was, my hair grows very slowly hehe!! The Cisplatin made me pretty danged nauseous but Zofran helped, I had no desire to eat either had to drink Ensure shakes so I could maintain weight, lost my taste buds. Mild espohogiitis, but got some magic mouthwash, I did have to start taking pain pills for that plus a stomach pill the radiation was messing with my inards ugh! I didn't like any of it, was in denial thru most of it, I was in close contact with my counselor, still am. I had a CT Scan almost 20 days after my last radiation tx and my tumor shrank to 1.2cm Yay! the node didn't show up on the scan? so now that brings me to where I am now.... 2nd line of treatment:
Durvalumab I had my #3 infusion this past Monday 9/23 my onc is having me take a 5mg steroid daily to help with my side effects from my last 2 infusions so hopefully everything will just behave, Sorry for the long winded post, but I just wanted to let y'all know my history and I couldn't actually find a spot for it here, but hey I'm not shy. I did have my biomarker testing done when my biopsy was done, but that I will put in another post, because that in itself (the pathology report) is quite another animal, but one thing that did calm my nerves a bit is that my PD-L1  high expression is 90%
Good nite all Roseann
 
 
 

As it seems to always be the case, one or two steps forward, then comes a step backwards. The latest today was that my Radiation Onc spoke to her colleagues/practice partners, who decided that they want me to have a EBUS before any SBRT. The Radiologist reading my last PET scan had noted the following:
My Medical Onc was not overly concerned about it when I questioned him about it, but the Radiation Oncologists sure are, so now I have to wait for the Pulmonologist to schedule me for another EBUS with needle biopsy of that node at the hospital, meaning at least another week or two delay. Some days you just can't win!

Roseann,
For sure one of the most difficult parts of having a cancer diagnosis is the effect on ones mental state. Granted the physical hardships with both the disease as well as the treatments are difficult, but it is so hard to maintain a positive outlook on anything, especially when after a few steps in a positive direction all of a sudden there is a step backwards. In the end, I do believe it is critical to do whatever necessary to maintain a positive outlook and a willingness and desire to fight back.
Hoping and praying all the best for you and don't ever worry about venting here, that's why we're here, to help each other. By the way, I didn't loose my hair until the consolidation chemo after the initial 7 weeks of concurrent chemo/radiation. There was several weeks where I didn't have a meal without hair falling into it! I was kind of hoping for the Telly Savalas look, but ended up with an uncanny resemblance to Uncle Festor on the original Adams Family TV show. 😆So glad it grew back....even if it is curly now. 🙂

Barb-Kudo's on #11, and a plan to rescan in November. 
Tomm-Thank you, ordered my East Cape Te Araroa Manuka via Amazon. 
Charles-Kudo's on #13. I am dumbfounded that a shipment as in more than one dose of Imfinzi was wasted because of a delivery error. WHAT!!!! 
Bob-Interesting article on Durvalumab. Thank you for sharing. 
RonH-What to say, what to say.....I feel emphatically saddened with your biopsy results and yet, I am thrilled that no other progression was noted. Remarkable creatures that we are, adaptation to the new normal is already in a forward motion and you will be taken care of. Sorry for the detour. Please continue to update us on your progress and treatment plan as we all may be subject to post Durvalumab algorithms. Besides, simply stated, we care about your medical welfare and journey.
Waiting 3-4 weeks for molecular biomarker results is a case in point to have it done with original biopsy? Have heard different reasons why it's not done from no insurance coverage to not needed with Stage 3. Just saying.
Blood work ? Mishap. Even with all this checking and double checking, mistakes still happen. Unfortunate. Be an advocate for yourself and continue to speak up if you have an opinion about your care. It does matter and medical personnel do take note of a patient well invested in their care, well invested in their outcomes. 
Some thoughts from this past infusion:
I have elected to fly into another city to receive my care. It costs me, out of pocket, approx $300 in plane fare, taxi and incidentals for each infusion. I am up at 4am for a 6am flight, am getting my blood work by 8:30 and if I'm really lucky, I am receiving my Durvalumab by noon. I am usually back home by 5pm.... that's a good day with no kinks in the system. All my doctor visits and diagnostic testing are dovetailed on the day of my infusions. I have a nurse navigator that assists me in planning, should I need it. I rarely have contact with my PCP here in town but he was caring and gracious enough to give me his personal cell should I need to get in touch with him.
I share this because I don't know if the care that I am receiving is better than if I had stayed in my hometown, but what I know to be sure is that medicine is more than the technical aspect of diagnostic testing and procedures and standard of care protocols. Healing is also dependent on your trust in your medical team, and having the fortitude to fight for and be heard for what you believe is intrinsically right for your care. I pray that my medical team treat me with respect, understand that I am vulnerable and that I need their empathy and expertise to get thru this. With my current medical team, I feel nurtured and heard. I may not always know the right questions to ask, but I sure know how to say, I DON'T UNDERSTAND WHAT YOU'RE SAYING AND WHY.
Thank you for allowing me to share.
With Blessings and Gratitude, DFK

Well the biopsy results are in. I am officially off the Durvalumab Immunotherapy after 18 infusions. All the previous tumors and lymph nodes were clear except for one lousy spot. They are not sure if it is residual cancer that the chemo/radiation/more chemo/Durvalumab didn't quite get rid of and it started growing again, or its a recurrence in the same spot, but it's there and the Onc says it's time to move on to other potential treatments. He does not believe continuing with the Durvalumab to be beneficial for me. (He says I'm welcome to get a second opinion if I wish but I don't see much need to). 
The next step is unknown but the biopsy specimens from Monday along with blood samples taken today are being sent off for biomarker testing (by Tempus). Unfortunately it takes 3 to 4 weeks to get the results back. In the meanwhile, the Med Onc will be referring me back to the Radiation Onc that I used for my initial radiation treatments. He believes that they may be able to do stereotactic treatments on the one remaining active tumor but he isn't sure. I'm just waiting for the Rad Onc to call me back with available appointment days/times. If given the option and the Rad Onc thinks that she has a reasonable chance of getting it, I will elect to have that done next. At least the actively growing tumor in the right upper lobe is not near any other organs or critical spots that I know of. He didn't believe that actual surgical removal was a viable option after all the chemo and radiation that I've already had. Sounded like the Med Onc was thinking in the lines of targeted therapy dependent on the biomarker results if the stereotactic radiation is not an option or doesn't work.. 
Some days you just want to go to bed and pull the blankets over your head and forget about everything. But tomorrow is another day to resume the journey in fighting the cancer again. Wishing all the Durvalumab club members success!! I'll stick around and keep everyone posted.
Oh I forgot to write about the thyroid testing saga last month (which seems minor now, but irritated me greatly at the time): Although I had saw on the doctors orders that I was supposed to have all the normal blood tests but in addition a thyroid panel with TSH had been requested. I personally looked at the orders myself as the infusion nurse was accessing my port to draw the blood samples and confirmed that. Then when I saw the Onc later that day and he also confirmed to me the Thyroid panel test had been ordered. When no results came by Friday morning I emailed their office to inquire. That's when the finger pointing started. They first blamed the lab, who then blamed the infusion nurses, who then blamed the doctor, who then blamed the lab, and around and around it went but in the end, no one had sent the blood off to have the thyroid panel tests done. Needless to say, they then had one very upset patient on the phone. Initially they said that I needed to come back in to have more blood drawn but as it was Friday afternoon, it was too late. They then called me back a little while later and said that they still had a vial from Monday that they could use. I said okay and they rushed it off to the lab. When I was back in to see the Onc the following week, before arriving I saw the test results. The T3, T4 and the FTI results were there, but no TSH reading. Furthermore the results were virtually identical to the ones that I had received two tests before that. So when I saw the Onc I noted that the results were for all intents were identical to a previous one several months ago, he immediately caught on that I was implying that they had used a much older blood sample than what they said. He assured me that they only hold samples 1 week and what was tested was from the most recent blood draws. He had no explanation why there was no TSH reading, but with the T3/T4/FTI being the same as several months before, he expected that the TSH would be as well and went ahead and increased my thyroid med dosage. I think I kind of pissed him off with my implied accusation, but they are now very aware that I am checking everything they do and say, and will question anything that does not seem quite right. Oversights do happen and I understand that but I "suggested" that they needed better quality control to assure that what was ordered by the Onc was actually getting correctly done.
Well since I'm on my soapbox now, I might as well say that the worse part of the biopsy Monday was in Recovery. Apparently my biopsy was the least serious procedure in the recovery area that I was in. Across the isle, there was an frail elderly lady that was in a lot of pain and was convinced she was dying and was crying for her family. Her vitals were swinging everywhere and her body temperature was dropping. They even brought in a potable heater that had a hose to blow warm air under her blankets. The nurses were running around trying to help and get the doctor there stat. However by the time I was released, she was doing better and her son was there. I hope she made it. Then in the next room over there was an elderly man in his 70's that apparently had a heart attack and was being informed that that he needed a quadruple heart bypass and that it had been tentatively scheduled for tomorrow (Thursday). The doctor explained the procedure to him and his wife and what would happen and that the surgeon would be in the next morning to discuss further. Of course as soon as the MD left in comes the "financial people". Apparently he is on Medicare and it will only pay for 80% of the expected costs and the hospital wanted to know when they could expect payment of the balance and that they "request" payment upfront. (I've had that debate with them before on the "we request" vs "we require" upfront payment. Normally they request it, but don't actually require it, they just imply they do. I've heard that the financial people get a bonus if they obtain payment in advance and some are quite aggressive about it. Once I even got out of the chair and started for the door before they called me back and told me that they could wait to bill me for the balance after they received the insurance payment.) Anyway I then had to listen to his wife and family assure him that they would find the money somehow, but he didn't want to wipe out their savings so he was being reluctant to even agree to the bypass. It was a sad story and I hope and pray that it works out for them. The recovery area sort of made my miserable day on Monday seem very trivial in comparison.
Until later...……….
-Ron

Intresting update on Durvalumab this week
https://www.astro.org/News-and-Publications/News-and-Media-Center/News-Releases/2019/PACIFIC-survival-rates-explained-Lung-cancer-sprea

Hey Ron H, I had my initial lung biopsy exactly like yours, but I had to have drugs, lots of them, I have Epilepsy and one of my triggers for seizures is high stressful situations and for me I had to be put in a very relaxed mode then out with that twilight stuff 😃 so I felt no pain once that hit. I was lucky no lung collapse. It was after when I went home that the pain hit! Dr called in a few pain meds, I was ok after a couple days. Sorry they didn't give you adequate pre-admission instructions sucks to have to just hang around and wait. I'll keep you in my prayers, so when you go for your results they are clean!
Take care, Roseann

Hello all,
I finally found this Forum, I too am a Durvalumab baby! I had my 1st infusion on 8/12/19, no problems other than a lot of fatigue, 2nd infusion 2 weeks later (on Mondays) by that Wednesday it seemed by body said no, nope, it started a whole slew of things nothing drastic but enough to halt my 3rd treatment by my oncologist here's a list of what my side effects were:
Started out as pain in my left foot and right knee, slight cough with some blood in my phlegm, slight shortness of breath, muscle pain and pain in all my joints. Also chest pain at times a stabbing pain like someone was stabbing me with a knife! Well WTF! I never experienced any coughing with blood, or shortness breath no chest pain either, before my diagnosis. I have a history of arthritis, Epilepsy, migraines, and I have seen a chiropractor for the last 20 years monthly for my back issues and arthritis, because I didn't want to have surgery or take pain meds/drugs and it's always helped. So these new things are def. related to the durvalumab, most have subsided, my blood work is not bad, my oncologist says she will include a 5mg steroid with my infusion if I am cleared for treatment next week 9/28/19. Until then I will try my best to stay in the light and keep up the fight!
Take care everyone! Roseann

Roseann, Welcome again, you found the Durvalumab Forum.....great.
Keep us updated on what your oncologist decides with reinitiating Durvalumab. I'm never quite sure what to make of all the annoying adverse events that we experience . Just to be on the safe side, I report everything and let my oncologist decide on further follow thru. I did have two doses of Durvalumab held for pneumonitis 3 months into treatment. I actually argued with my doctor and said my cancer should have priority and I do not want to have my Durvalumab held, let’s ride this one out since I'm only a little short of breath and just a little compromised. Well, he looked at me and said, "Nope, your lungs take priority today".....I actually enjoyed the month off. Symptoms abated and I actually felt kinda human for a few weeks!
Let your body heal and yes, stay in the light. And as Tomm put it so eloquently, believe in your future.
Kate, welcome. Tom Galli provided some really good pointers to get you thru this waiting period...lot of food for thought. No easy answers for sure for how do you manage chaos and uncertainty without going off the rails? Nausea sucks, fatigue, I think we're all experts at pacing ourselves. Who thought doing a simple load of laundry would require three pit stops before hitting the washing machine but life goes on, and that's the beauty Kate, life is going on for all of us. We are adapting and you will get thru this next week as you ponder the results. Stay in the light, have faith in hope. And I again quote Tomm, believe in your future. 
RonH-Damn, that was a long and rough day but glad you're one step closer to results. I haven't had a needle biopsy and thru your description, despite not feeling any pain, it sounds pretty darn horrific. Rest well. We're all pulling for you. You're in my prayers and are remembered as I say goodnight in my healing corner. 
Barb-#11 on Thursday......moving forward...WoooooHooooo. Gloves back on. Did I miss reading what plans are in store for your mystery 5mm nodule? 
Take care everyone, Prayers to all, thank you Tomm, we are firm believers in our future.
With Blessings and Gratitude,
DFK
 
 

Hi Roseann,
Welcome to a place to get information and to share your info. to help others. Good to hear that most of your side effects are going away, you sure did have a WTF bunch of things at once. Getting treatment means you believe in your future, keep blazing the trail with us.
Hi Kate,
Welcome .. two new folks in one day helps all of us.. thanks for joining  and sharing. Fatigue seems to be the most common side effect. It appears that the thyroid gets affected by this drug and most are not tested until the fatigue really sets in. My TSH was 139 when they finally checked me and gave me some meds to correct it (now 63)  and many others are or were 45+ TSH. This may be the cause of your fatigue. Believe in the future and be here now and enjoy the season.

Hey Ron. Sorry you had a rough day. Fingers crossed till you share your results 

Hi Kate and welcome. I’m on the same treatment track as you it seems and will get # 11 on Thursday. The fatigue drives me nuts as it comes on suddenly and usually when I’m in the middle of doing something. Every one here is supportive. Heck, I could be a real whiner sometimes and someone will always respond with a positive thought. Give a shout whenever needed.  We are all here for each other  
 

Just a quick update. Had my most recent lung needle biopsy today, this time they went in through my back and into my right upper lobe, just to the left of my right shoulder blade. No real pain during or after except I did have a partial lung collapse. It however re-inflated by itself before the first x-ray an hour later, and then the second x-ray two hours after the first one confirmed and I was released. A long day, 7am check-in & 4:45pm check-out and I am beat. Results are due Wednesday afternoon. (They didn't bother to tell me not to drink liquids before the procedure so I had to wait for 4 hours in the morning)!
 

Hi everyone I am a newbie, yet an oldbie, been through CRT and made good progress with those treatments, 30 radiation treatments and 4 Chemo, now I am in IV durvalumab , I had 6 treatments and will get my CT scan with contrast ( allergy) premeds tomorrow, and results next week. Needless to say I have anxiety, and I am hoping that this will allow me some more life here, Having some trouble with nausea  and fatigue ( the new normal), Well I could really use some support, so if anyone can give me that today I would more than appreciate it, and will do my best to give it back. Thanks!

Hi Roseann. Welcome. Sorry to hear about all your side effects so soon after you started. Keep us posted. I get weird little aches and pains but nobody can say for sure if related. We are all trail blazers on this stuff. 

Hello all,
I finally found this Forum, I too am a Durvalumab baby! I had my 1st infusion on 8/12/19, no problems other than a lot of fatigue, 2nd infusion 2 weeks later (on Mondays) by that Wednesday it seemed by body said no, nope, it started a whole slew of things nothing drastic but enough to halt my 3rd treatment by my oncologist here's a list of what my side effects were:
Started out as pain in my left foot and right knee, slight cough with some blood in my phlegm, slight shortness of breath, muscle pain and pain in all my joints. Also chest pain at times a stabbing pain like someone was stabbing me with a knife! Well WTF! I never experienced any coughing with blood, or shortness breath no chest pain either, before my diagnosis. I have a history of arthritis, Epilepsy, migraines, and I have seen a chiropractor for the last 20 years monthly for my back issues and arthritis, because I didn't want to have surgery or take pain meds/drugs and it's always helped. So these new things are def. related to the durvalumab, most have subsided, my blood work is not bad, my oncologist says she will include a 5mg steroid with my infusion if I am cleared for treatment next week 9/28/19. Until then I will try my best to stay in the light and keep up the fight!
Take care everyone! Roseann

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. 
 
 
 

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

Tomm,
Thank you for your encouragement and if I may I would like to convey here what my Onc has told me today right before I got #7
He told me that he just got back from a big Oncologists pow wow and has a friend/colleague on the Pacific Coast trials teamand  that he was able to discuss a few "things" with, concerning Durvalumab, and actually Durvalumab was the subject of the convention talks. Now, The Pacific coast trials is the testing they done to gain FDA approval in Feb. of 2018 for Imfinzi, and it is still ongoing. The reason it is still ongoing is because patients are benifitting far greater and longer than stage one and two of the testing had originally suggested. Side effects are still prevalent but managing them while staying on the Durva for the whole year is KEY. The way the drug is working in my case has been that the Durva seems to "choose" one side effect at a time to really clamp down on while doing it's job on the dIseased tissue it is targeting, sort of a "side dish" if you will. The first side dish it chose was not exceptable for me because it caused a lot of pain so we backed off and took Prednisone for a week and that side dish went away and hasn't returned, thank God and knock on wood too.. Then we got back on the regimen quickly and the antibodies have chosen another "side dish" to enjoy while it has it's main meal of the tumor. For me that is the post fight Rocky Balboa look that includes a little swelling in the facial region, stuffy head and yes weight gain all the while still having staggering fatigue. I had been going through this for a month and a half and needed relief so we started Prednisone again for 4 days to see if it would help and it did. Then again back on the treaments a week later. So my theory was, since I can live with this particular side effect as long as there is no pain, no apparent permanent damage, and I can get relief at some point in time, then quickly get right back on the Durva, COOL WITH ME!   THEN my Onc said that his friend ( The one on the Pacific coast trial team) told him that he was actually prescribing Prednisone in lower dosages 5, 10 mg once a day for longer periods of time to deal with the side effects that were more "tolerable and not serious" in an ongoing manner ,and this seems to actually confirm my theory and provides a way to keep the durva "side dishing" on this particular side effect as opposed to a different , new found, and more serious one while doing it's thang on the tumor. So now I am on 10 mg. prednisone once daily until further notice all the while staying on the treatments. Whats more is there is evidence that the Prednisone does not stop the effectiveness of the Durvalumab in my case and others. so we will  see. Just stay on the Durva for the whole year that seemed to be the most important thing my Onc told me and manage the tolerable side effects with your Onc. When my Onc sent me to the infusion room after our discussion, he sat down in the treatment room and started typing profusely about our plan and discussion and I felt like a TRUE PIONEER because what we came up with just may also help someone else and he was typing like he thought so too, how cool is that? This gives me hope beyond description, WHAT A RUSH!......... Charles out...