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Everything posted by DFK

  1. Tomm, I received a call back from AstraZeneca regarding my query on best practices for imaging while receiving Durvalumab. They needed a bit more information so while I had them on the phone, I threw out your question on PDL1 Biomarker noted progression while receiving Durvalumab and what is their recommended best practice. Just for edification, their responses are tied to their clinical trials. Will relay their responses as soon as I hear. With Gratitude and Blessings DFK
  2. Tomm, LOL, my insurance is called, “ Husband fortunate enough to work and retire from a company that provided retirement health coverage”. I know, I know, a complete rarity. We were and are very grateful. RonH, You are wealth of knowledge, thanks for sharing all of your experiences. Charles, Made your curry and followed your recipe to a tee (no habanero but our home grown red chilies are pretty darn close).....Stirred in fresh cilantro at the very end. A very easy and delicious dinner.....thank you. To all current and future Durvalumab participants, Just a few thoughts: Tuesday was #15 infusion for me.....uneventful day. Currently, only side effect I have and am experiencing are the "itchies" which is maddening in this hot humid weather, but like others, a steroidal cream and an antihistamine makes life bearable. I have accepted, for the most part, my post radiation fibrotic lungs. I do what I gotta do and pacing myself works. Labs remain within normal parameters. My port after 9 months is fully functioning for labs and infusions. I get the best results from my EMLA numbing topical cream when I apply it 2 hours prior. I maintained my weight during chemo (3) and radiation (30). Since starting Durvalumab, I have put on 15 pounds over the last 8 months. It is a significant change for me as I have maintained the same weight for the past 40 years. MD doesn't know what to make of it, was thinking maybe thyroid......I think the simplest explanation is that I have become a little piglet and am just eating more and not as active as I used to be. I have always needed a sleep aide.....been on Ambien 6.25 ER over 20 years with excellent results. The past month, sleep eludes me despite the Ambien. My Kindle has been my best friend and I am knocking off those books that have been ignored. Makes me wonder if it's just me, or maybe an age related thing, or another quirky side effect of Durvalumab.....just saying. I saw all the postings about the flu shot. Never have taken a flu shot but I received TB testing subcutaneously a week before Durvalumab infusion and again, a day after infusion......no adverse side effects noted. With Gratitude and Blessings DFK
  3. IMAGING GUIDELINES FOR CANCER SURVEILLANCE AND DURVALUMAB INFUSIONS Good Thursday Morning to All, For all who answered my query regarding imaging frequency, thank you very much. Hopefully it will be beneficial to current and future participants of Durvalumab. Barb1260: You included your insurance coverage of every 3 months for first two years, then every 6 months until 5 years. I can speak only of my insurance which is Medicare, there is no limit for coverage on the amount of imaging that is ordered…….BUT……it is billed under Medicare Part B, so you may have the additional co-pay costs, usually 20%. Fortunately I have a secondary insurance that covers all of my co-pays. Your frequency of Imaging seems to be par with others. Bob I am not familiar with Canada’s Medical coverage but your writings seem to indicate adequate and appropriate coverage for your cancer needs…..EXCELLENT. Tomm Your Clinic’s standard of care of every three month scans are on par with most Cancer Centers. I read your question of PDL-1, will Durvalumab be discontinued because of progression or new cancer. I came back with zero, nada, negative for any or all biomarkers but that is an excellent question. You may want to utilize the AstraZeneca (Biopharmaceutical Company that produces Durvalumab) support line at 1-800-236-9933. I have called them in the past with questions about Durvalumab that I could not find online or obtain from my medical team. They have been very helpful. If they cannot answer your query immediately, they will get back to you via phone or e-mail. Ron H I am sorry your TSH levels were not monitored until your levels were at 44. As I mentioned in a previous post, my Cancer Centers guidelines are TSH and Cortisol levels to be drawn every two weeks prior to Durvalumab infusions. Also, your thoughts and frequency on imaging tests: Cat Scans, Brain Scans and Pet Scans are again, par for the course. We have the old conundrum; is the cure worse than the disease? Radiation from these imaging tests are a long term concern that needs to be weighed against the value given. Your post on Pulmonary Fibrosis, pulse oximeter etc. I will post later how DCLO (Diffusion Capacity Pulmonary Function Test) is your best ally with radiation fibrosis, pneumonitis, emphysema and COPD (to name a few). It’s a simple test. Most of us had it completed in our diagnostic pre treatment phase. But how many MD’s order a follow-up DCLO to measure pulmonary function after radiation? after pneumonitis? during Durvalumab treatments? Ron H, Tomm, Bob, Opal and Tom I do not have my pulse oximeter saturation checked in the clinic setting but I have had my own since my diagnosis. I use it to monitor my saturation pre and post exercise and strenuous activites. For example, I ride my bike and at times I push myself probably a little too hard so it helps to know how my lungs are perfusing when pushed. Pre bike ride I have a 98% saturation and 70’s heartrate. After 30 minutes of biking, my usual saturation is 95% with my heartrate in the 140-150’s. I ride for an hour but always do a pulse Ox check after 30 minutes. My pulmonologist and cardiologist are okay with those numbers. Trending my pulmonary function to activities and exercise will alert me to significant changes as a precursor to symptoms and problems…..let’s be proactive. NCCN-National Comprehensive Cancer Network Imaging Guidelines This is the Organization that my Cancer Center bases their care on. “The NCCN develops resources that present valuable information to the numerous stakeholders in the health care delivery system. By defining and advancing high-quality cancer care, NCCN promotes the importance of continuous quality improvement and recognizes the significance of creating clinical practice guidelines appropriate for use by patients, clinicians, and other health care decision-makers around the world.” I obtained this information from my Cancer Center when I inquired as to the best practice/standards of care for imaging surveillance after completion of initial cancer treatment. I also inquired if there are any specific guidelines once Durvalumab enters the picture. The NCCN does not have specific guidelines for Durvalumab so I have a return call pending from AstraZeneca. Per NCCN Imaging Guideline Parameters for no evidence of disease: Stage I-II (Treatment =surgery and chemotherapy) Chest CT +/- contrast every 6 months for 2-3 years then a low dose non contrast enhanced chest CT annually Stage I-IV (Treatment=chemo and radiation) Chest CT +/- contrast every 3-6 months for 3 years then CT+/- every 6 months for 2 years then a low dose non-contrast enhanced chest CT annually FDG PET/CT is currently not warranted in routine surveilllance for NSCLC however, many benign conditions are difficult to differentiate from neoplasm on standard CT imaging and FDG PET/CT can be used to differentiate true malignancy. Brain MRI is not routinely indicated DCLO-Diffusion Capacity Test Diffusing capacity of the lungs for carbon monoxide (DLCO) is a medical test that determines how much oxygen travels from the alveoli of the lungs to the blood stream. DLCO a good measure of lung disease severity and how well your lungs are perfusing oxygen. The more surface area available to perfuse, the better your DLCO % is, the healthier your lungs are. My DCLO pre chemo and radiation treatment in October of 2018 was normal at 77%. January, one month after chemo and radiation was completed I was starting to experience a higher than usual heartrate. I had no shortness of breath. In March, along with a higher than usual heart rate, I started to tire easily but still able to meet my responsibilities in the home. Because of my increased heartrate and tiring easily, a DCLO test was ordered and my result was a whopping 44%. A Cat Scan followed that revealed a Grade 3 pneumonitis. I had no symptoms that would have indicated a Grade 3 pneumonitis. Had it not been for the DCLO test, I might have progressed to a Grade 4 pneumonitis, been extremely symptomatic and been taken off Durvalumab permanently AND incurred much more fibrosis and damage to my lungs. After a month of high dose Prednisone, I was able to restart my Durvalumab and my DCLO improved to 49%. I increased my exercise regime with the idea that I am maintaining my lung hygiene and hopefully improving my lung function. My next DCLO is in two weeks ( two months since my last). The doctors said my DCLO at 49% is about par after my 30 treatments of radiation and Durvalumab. I'm hoping I can improve my lung health....we'll see what the numbers will say. With Gratitude and Blessings, DFK
  4. Good Tuesday Morning to All, Question for all: Does your health care provider have a regular schedule for follow up Cat Scans? Brain Scans? PET Scans? Etc. Scans I've read here that some of you get your Cat Scans every 3 months? I'm a couple hours away from my labs, #15 Durvalumab and MD appt and I'll be finally asking my MD what is "his" standard of care for followup tests. I will report my findings later. I received my 1st CAT SCAN, PET SCAN and BRAIN SCAN upon initial diagnosis in September of 2018. Since that time I have had a followup Chest Cat Scan with contrast in January 2019 after radiation and Chemo and again in April and May (without contrast) for my complaints of SOB which turned out to be Grade 3 pneumonitis. April Cat Scan was to diagnose pneumonitis and May Cat Scan was to clear me for restarting Durvalumab. I'd appreciate your input. I believe this info will be beneficial for current and future Durvalumab participants. With Gratitude and Blessings, DFK
  5. Georgia, I am sorry to read that your husband is experiencing weight loss, esophagitis and dysphasia. If you can schedule the esophageal dilitation with balloon soon, that would be great. But if not, would your husband reconsider a feeding tube to get the much needed nutrition his body requires for healing and getting his strength back? I don't know how much weight your husband has lost but I know my oncologist told me from the get go that a 10% weight loss from chemo or radiation would require the insertion of a feeding tube. Anymore weight loss than 10% puts an added strain on his body.....I'm sure you know that already. My prayers are with you and your husband. DFK
  6. Charles, Parody aside, Charles Creed was meant to be a compliment, admirable traits where your tenacity are giving you results. With Gratitude and Blessings, DFK
  7. The CHARLES CREED: I demand discipline. I expect innovation. My life and the success of killing my cancer depends on me - my skills in gathering information and attention to detail. My learning is never complete. I depend on my Medical team but I will never quit participating and learning. If knocked down, I will get up every time.....or as my 5 year old grandson would say to me, YOU GO GRANDMA! With Gratitude and Blessings, DFK
  8. Charles, You certainly are involved, enthused and motivated to participate in the healing of your cancer. Thank you for sharing. My only experience with Cystic Fibrosis and NaCO3 nebulizer treatments, my understanding, was to minimize bacterial counts and assist in the removal of mucus. And of course, during resuscitation efforts, NaCO3 was given to combat metabolic acidosis during cardiac arrest. My personal experience with NaCO3.....I use a little every day with salt in a glass of water to rinse my mouth after brushing my teeth. Swish and gargle and spit and rinse with water again.....it has been proven to bring bacteria counts down in your mouth and I'm all for that. It's intriguing what you are vested in, keep us posted as I'm sure you're journaling your methods and experiences. Recipe looks killer and serve over rice? (my fav)......I am a die hard affectionado of Cajon, Indian and Puerto Rican food. The hotter the better, I don't use habernanro peppers but I have some pretty dynamite teeny red chili's that I just harvested yesterday.....they will grow hair on your chest for sure🥵 Bon Appetit. Gratitude and Blessings to all, DFK
  9. Donna, A beautiful story.....on so many levels.......friendship and over coming NSCLC 3x's! Now that gal has a mission in this life😇 We are blessed daily with an amazing grace and my heart fills with gratitude when I am fortunate to notice the many blessings I am gifted with. I too feel that nursing was a privilege. I never dreamed of being a nurse but it's funny how you're led to be where you need to be. Enjoy your birthday lunch and friendship.....don't you love making new memories?.....how sweet danielle
  10. Thank you Donna for your comforting words. Twenty two years of living cancer free after a devastating diagnosis is truly an inspiration for all of us currently on our journey. You are giving us the gift of hope, and for that I am very thankful and grateful. I imagine God had a special plan for you to continue your calling as a RN and healer. I was initially told surgery would be my first line of treatment by my Pulmonologist but when lymph node involvement was confirmed, I was told my cancer was inoperable. My plan of treatment then became chemotherapy, radiation and 1 year of Durvalumab. I am doing well on Durvalumab and have just passed the half way mark with 14 doses down and 12 to go. There is barely a shadow on the Cat Scan where once I had a 5cm x 5cm tumor. My oncologist prefaced his treatment plan with, "I can offer you a cure". To say I was stunned is putting it mildly, but that is the premise I entered treatment with and that is the hope I carry with me daily. Thank you for continuing to have the time and compassion to share, inspire and instill hope on this forum. Blessings and a very Happy Birthday 🎊🎁🎈 P.S. My son is stationed at the John C. Stennis Space Center, he is also in the Navy and lives in Slidell. My condolences for the loss of your husband and thank you for supporting him (17 moves-yikes) while he served our country. danielle
  11. Thank you Michelle. I have been a very strong advocate for my care and I’m not ashamed to admit it. I delivered exceptional quality care to my patients when I worked and I expect the same in return from my medical team. Problem is, I knew almost nothing about cancer, specifically lung cancer. I am an RN so I was able to glean what I needed from the numerous articles online but still, there was a huge learning curve. How do you ask the questions when you do not know what to ask. How do you know that your plan of care is appropriate when you do not have access to standards of care......it was a lot of work to get to where I am today and hopefully as much comfort as I have garnered from reading on this forum, I will be able to assist and guide others new on their journey.
  12. 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
  13. 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
  14. 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.
  15. Just spent the last 4 hours reading the wealth of information shared by Durvalumab users. I am 7 months in, 14 infusions behind me (2 infusions #9 and #10 held for symptomatic pneumonitis, infectious bronchitis, tachycardia and exertional SOB with resulting lowering of pulse oximetry saturation). Which was treated with high dose Prednisone and antibiotics. Diagnosed Lung CA Stage IIIA September 2018. I am a certified critical care Registered Nurse who have also spent years following patients in the home setting for both rehabilitation and Hospice. Despite my medical background, nothing prepares you for a cancer diagnosis. In my discussions with my physicians, I am pragmatic and expect to have a respectful peer to peer relationship. I fall apart emotionally at a later private moment when I am acclimating to my role as the patient and not my usual role of a healthcare provider. It is humbling. I am also a newbie to specialized Cancer treatments and have done my fair share of research with standards of practice for my Stage IIIA Lung Cancer. Will post on Immunotherapy/Durvalumab Forum.
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