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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

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Hello to The Durva Club- I wanted to pass this information along to you- On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer

All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁 So I'm only at half way thru this chemo/immuno thi

Barb   ..sorry to hear you need to skip an infusion, I hope the time off gets you back on track. Sillycat  .. you may find this interesting  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5767492/

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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. 

 

 

 

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RonH

Welcome here, Your situation is most similar to mine in a lot of ways . I too wear a bi-pap for severe sleep apnea every night which actually has helped me breathe during my bad lung days of chemo/radiation. I too have went through the liver scare, hypothyroidism, every level, to include maximum daily dosage of prednisone, levothyroxine, liver function tests, many unscheduled ct scans, brain mri's, eye exams and quite a few feelings of doom and gloom during this arduous journey to name a few and my onc has offered to take me off Imfinzi but has allowed me to make the call myself. during all the prednisone I've had I delayed treatments only to see if the potential side effect I was experiencing was durva related or not, which usually took one week for the side effect to ease off then another treatment was administered before the S.E. was completely gone. I am a 58 year old male with COPD, high blood pressure, diabetes, sleep apnea, morbid obesity , a 3 cm aortic anuerism between my kidneys, a 5x7 cm "soft mass" growing in my mesenteric region that does have an uptake but they think is not cancer and had, at the beginning a large solid tumor  11.0x 8.0 x 12.0 cm that was as largeas my right lung but was a big as a grapefruit that was completely blocking one of my airways to include 3 masses inside my airways with one .3 cm from my trachea that was threatening my upper respiratory system. The tumor is now or at last scans the size of a walnut (7.6 x 3.5 cm at its largest measurement with an uptake of 6.1, down from 26.0 in the beginning) that means it is 2.5 x 1.3 inches in mass at its very largest measurement which means it is tattered and torn, no longer round or restricting breathing and the masses inside the airways are gone to include a couple of lympoh nodes that were affected, all gone. I have viewed treatments as you have from the beginning, if it doesn't kill you it most probably will help as it has.; I have also used two of my own techniques that has helped with lung damage and quite possibly tumor progression by buffering my ph levels to 8.0 to 8.5 with sodium bicarb treatments orally and directly into the lung with breathing treatments mixed and administered (by me) through my"atomizer" for a half hour per session  at a mixture of 2 tsp S.B. to 1/2 cup of distilled water ever since completing radiation and it has done wonders and seems to have supercharged the durva and activated the white blood cells early on. No matter the explanation of the action, if I was injecting corn flakes into my bloodstream it has worked so far with all treatment and I will continue to buffer accordingly with close attention to urine ph levels as always. I am 4 to 6 treatments behind timewise but I believe I will be allowed to catch up those on the tail end of it all. dId I mention GOD? He has been the ultimate oncologist and the one I give all the credit to for guiding me what to do, when to do it, how to feel, being strong, believing, hoping, and giving me ideas where to take my newly prolonged life that he has granted me and I am eternally greatful for his infinite wisdom and protection for this. Have much more to say but will include this in a memoir book in which are in the future plans also.; Thanks and welcome again to you and DFK............... Charles..........

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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

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the wisest M.D. in the universe (GOD) told me "son, we aint going to beat this with man's medicine alone, there are more forces involved than just the cancer and THAT is big enough to kill a horse SO WE have to plan a systemized attack where time and timing is of the essence and vigilance and knowing the difference is key . Here is a quote " life is like a box of chocolates, you never know what your going to get" Thought I'd throw that out there to show everybody is different.

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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

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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.

 

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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.

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3 hours ago, Opal said:

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.

 

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

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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

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Charles -

I appreciate your comments but although I do like Frosted Corn Flakes (as my waist line indicates), I am not too sure about having a corn flake infusion/injection. 😁 

However I am intrigued regarding you "buffering your ph levels to 8.0 to 8.5 with sodium bicarb treatments orally and directly into the lung with breathing treatments mixed and administered (by you) through your "atomizer" for a half hour per session  at a mixture of 2 tsp S.B. to 1/2 cup of distilled water".  I may just look into this and consider it. At the very least I will check what my pH levels are.

Looking forward to Durvalumab treatment #18 in one more week, but dreading the CT and even more so the MRI that are scheduled in late August. I am mildly claustrophobic but have leaned to handle the CT, but just the thought of being in that MRI machine again makes my heart race. The first time I was so overwhelmed with everything that was all of the sudden happening to me involving the cancer, that I managed to make it through the MRI (barely, and with classic rock music playing to dampen the noises the MRI makes). The ONC did prescribe a sedative to take before the next MRI so I hope that helps. 

Thanks again for your input, comments, and information, I, as I am sure others, appreciate the time and effort you put into your posts and I bet your "memoir book" will make for an interesting read.

-Ron 

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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

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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.😎

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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

 

 

 

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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

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RonH and DFK,

Thank you for your return comments and I too am grateful for this site to come visit and share what we cannot find anywhere else on the net, the truth! I am low pdl-1 (10%) so I knew right away I could not just be a sideliner in my treatments with this stuff. Chemo/radiation 35/10 went pretty well with inflammation, coughing, a little fatigue, constipation and off-the-chart bloods but I started buffering orally during those treatments due to research from the moffitt cancer center in Tampa Florida that stated  the exact mechanism is unknown but according to their research, lung cancer starts and exists in and acid environment and that it is possible to achieve ph levels through "buffering" by drinking Sodium Bicarb in drinking water. I really felt I had nothing to lose, and according to amazing lung cancer survival stories I had read and researched and confirmed on several scientific study sites that the Bicarb claim had a lot of merit to it. The only thing I had to do is to come up with a formula that would bring my urine ph between 8.0 -to 8.5 without damaging my kidneys or heart, this seemed to be the target of all research successes so became mine. I am not a Doctor, but a doctor in Italy was supposedly debunked and apparently incarcerated for treating a lot of patients with only Sodium Bicarb treatments and claimed to have a 99% CURE rate which I did not believe was that high in the first place but his willingness to commit medical suicide with such an abandon that I knew he really believed what he was doing really worked.The only problem with buffering orally in the drinking water was that not enough of the Cancer was exposed to the Bicarb and visa versa to completely kill the Cancer in a lung ie. the airways. I thought OF COURSE!  then I looked into nebulizing possibilities and learned that today, Doctors treat children with cystic FIBROSIS with sodium Bicarb  nebulized directly into the lungs because it helps prevent or slow down lung damage(scarring) and is absorbed into the blood also in this way, that's just what I would be trying to achieve correct? so through research, meticulous research, I came up with my formula for my mixture to go ito my nebulizer and began my treatments only after the radiation treatments and inflammation subsided because at first the bicarb and distilled water caused inflammation and caused a lot of coughing. After several half hour treatments I noticed the coughing became easier and more productive and actually improved my lung functions dramatically to the point of restoring my lungs to 100% breathing without coughing . Then I noticed that I began to cough up pinkish phlem again like I did during radiation and I knew I was onto something GOOD because this is cancer cell death for sure and it was. so I put together an "attack program" where I would hit MY cancer with 6 days of sodium bicarb buffering protocol drinks to bring up and keep my urine ph level at least 8.0 and not higher than 8.5 and I done this with the help of urine ph strips from Amazon, then I would hit it with several days of 1/2 hour nebulizer treatments once a day and then finish bringing the ph up to 8.0 with protocol drink orally during these days, this way the cancer was hit at all angles as well as the chemo and immunotherapy which according to meticulous research (scientic and layman) actually helped the action of both to uncover and destroy the cancer. Well, like I said before, I won't argue the point with any scientist on what actually is killing the Cancer this fast because CORN FLAKES or BICARB who cares? it is getting done and all concerned keep saying "keep doing what you are doing" so I will and GOD gets ALL the credit for leading me to the right direction to know the difference between mumbo jumbo, naysayers, greedy medical profession organizations, and those real people out there who have no choice but to think outside the box in their own times of need due to misinformation and lack of information out there that is scientifically credible and I again quote one of my favorite movies " extreme situations require extreme measures" and here is one of my quotes " There is no room so dark as a pitch dark room with a battery operated light with no batteries and the only ray of hope is the knowledge that a fresh battery is hidden somewhere in the darkness" I WILL FIND THAT BATTERY!  RonH and DFK, YOU GUYS ARE LIKE A BREATH OF FRESH AIR, THANK YOU!

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Here is a recipe my cancer just despises, it contains jamaican style curry powder and is yummy but spicy but when I eat it the cancer just freaks out, I want this demon to suffer every moment it invades my body and let it know in no uncertain terms just how I feel about it with every bite I take which has this badia curry powder in it. If it aint ice cream, it has this curry powder in it and my family just loves it too. This recipe I spoon over parboiled rice and also make stews out of it by adding potatoes , carrots and celery. It just makes the cancer run for cover every time, ENJOY!

 

Jamaican Style Curry Chicken

    1/4 cup vegetable oil
    1 onion, chopped
    1 tomato, chopped
    1 garlic clove, chopped
    2 tablespoons Badia Jamaican-style curry powder (the more the merrier though up to a quarter cup)
 
    2 slices habanero pepper (optional)
    1/4 teaspoon ground thyme
    2 skinless, boneless chicken breast halves, cut into 1 1/2-inch pieces
    1 cup water
    1/2 tsp or more salt to taste

    Heat vegetable oil in a skillet over medium-high heat; cook and stir onion, tomato, garlic, curry powder, habanero pepper, and thyme until onion is golden, about 7 minutes. Stir in chicken and cook until chicken is lightly browned, about 5 minutes.
    Pour water into the skillet, reduce heat to low; cover and simmer until chicken is no longer pink at the center, about 30 minutes. Season with salt.


Per Serving: 210 calories; 15.4 g fat; 6.2 g carbohydrates; 12.5 g protein; 30 mg cholesterol; 322 mg sodium. Full nutrition

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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

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DFK,

Killing it not healing it, and looking it square in the eye while it is dying and saying "your'e no daisy, you're no daisy at all!" as far as the peppers, just add a few drops of srarancha hot sauce to the recipe and voila! The curcumin in the curry has an anti cancer affect I guess, but you will notice the discomfort in the cancer and the dish over rice is delicious.just vested in permanent survival not just prolonged life with immuno. It isn't easy making a grapefruit just disppear. I not only inhale the nebulized sodium bicarb but drink the bicarb mixed with black strap mollasses and this acts as a poisonous trojan horse cocktail to the cancer since the cancer feeds on sweets, the bicarb bonds with the molasses and attacks the cancer when consumed by it and raises ph levels to cancer killing levels of 8.0 to 8.5 and chips away at it a little at a time and keeps it off balance while the Imfinzi busts a leg off in its thunder bucket. Enjoy the recipe with those hot peppers you've grown, later, Charles

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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

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Now come on D,

I DON'T SOUND THAT DRAMATIC NOW DO I?  But dang straight, may not get to fight this particular battle but once and too many of my loved ones have lost to it (mother, aunt, mother in law and 3 more of us have it and the precious ones who lost didn't get but one shot so GUNG HO, LEFT-RIGHT-LEFT AND BATTEN DOWN THE HATCHES and pip pip and all that jazz, my full attention with everything I can throw at it IS necessary , I do not intend to lose this one. My onc and medical team is very grateful and GOD is with me so why not? TEN HUT with compassion and understanding-  Charles

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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

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All my Durva friends are doing so good! Yay! I may not be taking the durva anymore but I still get to hang out here cause I had some....right? 😁

So I'm only at half way thru this chemo/immuno thing they are doing. Had to stop and do some tests on my digestive stuff because it's actin up. If it aint one thing, it's another.

My onc is a lovely Indian lady....love her. But holy COW does she talk fast. And that accent....I usually just kinda nod at her. LOL

This last time she was doing the exam and she kept saying...your balls are full. Said it 2 or 3 times...your balls are really full. I piped up...I don't have BALLS silly. She said no no...your balls...they are full. I just kinda stared at her funny...said ok...and went on my way.

Got home and thought...do you think she was saying BOWELS?

 

🤣🤣

 

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