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DFK

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Everything posted by DFK

  1. Good to hear from you too Opal and congrats on your 2+ years from diagnosis....and to see Bridget and Grahame posting, it's like old times again. I so remember being lost in an ocean of questions and fear when I happened upon Lungevity. We were the pioneers, embarking on this very new immunotherapy drug. We learned along with our physicians and us Durva's picked each other up when we needed picking up and carried others when we could. We weathered the calm seas as well as the oceans squalls. That's one thing I remember so vividly, that time marches onward no matter what the day presented, and that one month easily turned into three and five and eight and then the twelve months were over. For those still on the Durvalumab train, know that there were others before you that had the same questions, and fears and annoying and sometimes debilitating symptoms. But also know that we are your inspiration for a life beyond Lung Cancer...... Hello to Tomm, I still love your one liners, I bow down to you OH MASTER OF GIGGLES, to Tom Galli for his eternal and non ending support, Do you ever sleep? and Rower Michelle for her spunk and humor and "let's get it done" Jersey girl attitude, I want you in my corner!!!!, Happy Birthday Ron, and like Opal said, many, many, mucho more to come, Roseann, you go girl, good to see you're still slugging away, admirable fortitude, I'm impressed....and Barb1260, My doc said the same thing when I was done, "Get out of here and go live your life". How blessed we are to be able to do that.....strong words that meant the world to me. Opal, your gentle and Gaman spirit comes thru loud and clear in your postings. You are loved. And to the newcomers that I haven't met, you're in great hands. Carry on Blessings, DFK *Gaman (Japanese)-"enduring the seemingly unbearable with patience and dignity". The term is generally translated as "perseverance", "patience", or tolerance.
  2. Oh my gosh, what an awesome "alert" I received this morning.....way to go Ron, congratulations. I do remember how devastating it was for you to get yanked from Durvalumab and the rigors you went thru to be in the Alk+ targeted therapy club. Awesome to get an update, and a miraculously beautiful update at that. I have been MIA from Lungevity, living life full and robustly well (my doctors words, not mine) and like everyone else, having my medical dance card emptied and fairly blank in this Covid environment. This month marks my 2 year anniversary since diagnosis of NSCLC Stg 3b and I'm 7 months out from completing my year of Durvalumab. Last Cat Scan in May, NED. And though I have been gifted with NED throughout my journey, like the ghosts of Christmas past and Christmas future, the memory of what was, and the haunting of what could be, is never far, always present as a reminder of my membership in the club no one wants to be a member of. I have learned to live with these hauntings, as a gift, to enjoy every blessed moment, to the best of my ability. Wishing everyone another step towards health, love and happiness. Blessings, DFK
  3. Hey Roseann, Good to hear from you and awesome that you're done with #15 and tolerating it...WoooooHoooo. That is grand. Your T3 and T4 levels will let your doctor know if your slightly elevated TSH will warrant concern and meds. Let's hope not and it's a fluke. My liver tests skyrocketed for a month and my doctor told me to lay off the booze. Like what? I rarely drink and certainly not with all these drugs coursing thru my body. Then the next month, I was all normal again. Let's hope yours is a fluke too. If not, at least it was caught early and there are meds to address it. Take care, good to hear from you, DFK
  4. Good Tuesday to All, Been thinking about our Durvies here still on their year long protocol, knowing that you are experiencing the challenges of COVID-19 and all subsequent events. In addition to our cancer you/I/we are now juggling doctor appointments and scheduling nightmares for procedures. I just had all my MD follow-up appointments cancelled thru the end of April as well as my 3 month CatScan, and my 6 week port flush that I extended by two weeks, is now on hold till mid May.....and I'm totally okay with all of that. But I'm not okay with any cancer patient having to defer on their treatments. So far I have not heard of any cancer treatments(Chemo/Immunotherapy/Radiation) being postponed. I have heard that some clinical trials have been stopped in lieu of prioritizing utilization of medical staffing and supplies. This too will pass but who needs the added emotional and mental stress of thinking any deferment of treatments may be adding the proverbial "another nail to the coffin". I have always said the mind is a horrible victor.....but as long as we know this, our strength and fortitude and hope trumps the alley ways of our mind that will stray to that dark place. Barb-I think it does get better in time waiting for these test results. At some point, the "what if's leave us" and our worries are mostly about adjusting to our future should we have to take that route. Our knowledge base has made us just a tad more resilient. I'm impressed with your back to work year anniversary. I was retired when my sh*t hit the fan so I was able to wallow 24/7 in my cancer and focus, focus, focus. I'm in admiration of you. Good luck on #23. So close....I'm cheering you on. Babs-Congrats on finishing #10. The white coat Hypertension is now replaced by the COVID-19 Hypertension? Totally understandable. For what it's worth, my Oncologist, knowing that I was tolerating my Durvalumab treatments, did tell me I could defer on one treatment if I wanted to extend my vacation with my son. He told me that Durvalumab would take 16 weeks to reach a therapeutic level and that it's half life was 17 days and if I missed one treatment, it would not effect efficacy. I did not take him up on it since my pneumonitis made that decision for me. I missed one treatment midway of the 26 doses and it did not seem to matter as the end result was NED. Carry on. Grahame-Let us know the results of your discussion with your MD on both continuing Durvalumab and Prednisone usage. I know some have been receiving their Durvalumab with 5mg Prednisone daily to squash those side effects that went from annoying to intolerable. The 5mg seems to have made the difference in continuing rather than discontinuing. So now that my thoughts have been transferred from my NSCLC to Toilet Paper inventory, I wish you all a very pleasant day. Phew, I'm so relieved:
  5. Polly, How different it must be to have that kind of quiet, especially near Times Square. I'm glad to hear that your treatments have not been interrupted because of the social distancing and preventive measures they have put in place at most Health Care Facilities. Take care, be safe and aware....DFK
  6. Hi Polly, Great news on left mass and nodule shrinkage. Exactly what effective radiation and chemo are targeted to do. I also echo Michelle's advice, report your shortness of breath if it is sustained. You know your body better than anyone else and those little nigglings is what needs to be reported. The timing of the initiation of Durvalumab and completion of radiation makes you a prime candidate for possible pneumonitis. I started to report my shortness of breath and compensatory increased heart rate a month after completion of chemo/ radiation and at the start of Durvalumab. I was diagnosed with pneumonitis 3 months later after being bounced from Cardiologist to Pulmonologist and after another Pumonary Function Test and chest x-ray and CT scan......and I was told it was caught early!!!!! How much more damage would my lungs have sustained had I not consistently reported my symptoms and pushed for consultations. Part of my problem in reporting my symptoms was that I did not look in distress and was not taken seriously, but I pushed and all the tests that took me a couple months to complete all pointed to pneumonitis. You're doing great.....a good attitude, some basic knowledge with two uneventful infusions.....you're on your way. Take Care, DFK
  7. Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life. Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration. Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent. Take Care, Blessings, DFK Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.
  8. Good one Tomm......love it.🤪 DFK
  9. Kate, How wonderful to read of another confirmed NED sans Durvalumab, how totally cool AND awesome is that......We're fortunate to be walking on sunshine. Tomm we need a quip apropro for the wonderful news. Happy me, DFK
  10. Hey Barb, Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine. Take Care, DFK
  11. Hi everyone, Good Tuesday, Good dialogue on PetScans, CatScans and insurance barriers. For what it's worth, my Oncologist did a total of 4 CatScans during diagnosis, chemo radiation and Durvalumab over the course of 17 months. Got a Pet Scan a month after my completion of Durvalumab. When I asked about MD preference for Cat scans versus Pet Scans, he said CatScans provide a more detailed cross section of tissues and organs. If I'm not mistaken my last PETSCAN was a combination Pet and CT done simultaneously. This was different at diagnosis where I had a CatScan to confirm the tumor, followed by a Pet Scan to confirm biological activity. Barb-I was told I was NED when there was nothing on my CatScan except scar tissue/fibrosis where once I had a large mass. I'm guessing those radiologists can differentiate. Hopefully, you'll get the answers to your questions when you have a one on one talk with your MD. Then you can tell us their take on it all. I remember my ENT wanted a PET Scan to rule out tumors in my neck and my Oncologist said nope, a CatScan would be more definitive. Just of note and an FYI My community music group frequently plays for hospitals, nursing homes, assisted living facilities etc. Today, a memo came down from the County to all healthcare facilities, "No more community outreach visits". This is in response to the COVID-19. Of course, they forgot to tell our group and we showed up to perform anyway.....all went well and we didn't get kicked off the property! Take Care, DFK I used to be indecisive. Now I'm not sure.
  12. Georgia, Good to hear your husband has found an agreeable solution to his chest skin discomfort with Excedrin. Sounds like an easy fix. Great. Please share your topical solution. About your experience in keeping your husband's diagnosis close to the vest, and disclosing it to a select few......interesting. I suppose you never really know how someone will respond, do you, once you let the cat out of the bag. I elected to keep my diagnosis within my nuclear family, and yes, also to one good friend who I've know since grade school, because I wanted to keep my focus and energy on me. Take Care, DFK
  13. Welcome Babs, Tomm did a a great job of covering side effects with you. My muscle aches and joint pains, headaches and back pain lasted thru out my year of Durvalumab......it was something I was able to live with with the aid of Ibuprofen 800mg and Tylenol ES. My symptoms never escalated to a point where I felt it needed more than my OTC analgesics. My thyroid levels were fine but I did experience fatigue and a lack of stamina and endurance. It helped that I continued being active and I tried to get in some "formal" exercise at least every other day. I never felt that it got better or worse as time went on with Durvalumab...it was just always there, reminding me that I do have some limitations. I will also echo Tomm's recommendation of drinking water and lots of it if you don't have any fluid restrictions. Congratulations on having your original tumor delegated to being scar tissue. How freaken awesome is that!!! Take Care, DFK I'm taking care of my procrastination issues. Just you wait and see.
  14. Good Sunday Morning to all, A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis. At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity. Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. Last night I learned of Opal's (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present. We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone, but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved. Let me also relay that Opal's last scan was reported as stable, next check in 3 months. Take Care, DFK
  15. Hi Polly, Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you. Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness Take Care, Blessings, DFK
  16. Kate7617-How could you not be Irish with your fiery red hair and a maiden's name like Kate. Sounds like you got your boxing gloves back on.....a prayer jab to the right and a prayer upper cut to the left. You got this covered. Take good Care, Blessings, DFK
  17. Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Naivety, trust and and a little bit of the doe in the headlights got me through some tough times. I also was too busy pretending to be healthy attending to family and friends, as I told no one of my cancer diagnosis but my husband and two sons.....it remains that way today. Was it my stubbornness that refused to believe in any other outcome but NED and there was no need to involve others in what I perceived as a temporary set back? Who will ever know. Please give yourself credit and lots of it for fighting the fight. I might have mentioned it before but my girlfriends dad at 84 is 7 years NED after only chemo and radiation. I'm sure there are many other survival stories that may not be on social media. Always, and I mean always remain hopeful, there is no other alternative. I have cancer and there are varying statistics as to my outcome, but I will always remain hopeful that my cancer will be controlled or arrested to afford me to live a little longer each and every month, each and every year. Pick your battles, draw up your game plan and go girl go. As my son loves to tell me, "Focus Mom, focus". Freaken scans are the worse, you want them to validate no more cancer but you also know there's the other side of the coin, which by the way, we all know takes up 99% of our frenetic energy. Monday will come soon enough, you have a few days to watch a favorite movie, or have lunch with a girlfriend or take that long neglected bubble bath. You are alive now, and that is a very good thing. I send my prayers to you for peace and good results. By the way, Opal should be chiming in soon about her scan results.....inquiring minds want to know. Take Care, Blessing, DFK
  18. Ha, ha, ha Grahame.....pretty funny, almost as good as Tomm's quips. My husband might say I try to get my point across but mostly he would say I am a great actress, as in Drama Queen 🤗 Will add one more post Durvalumab observation-No more headaches. This one was a real humdinger. Worried me the whole year but my Oncologist never batted an eyelash. Though my headaches were fairly consistent, they were never NOT alleviated with analgesics AND they were NOT consistently in the same area and the dull pain was variable from one day to the next. Take Care, Blessings, DFK
  19. Grahame, You are doing wonderfully and I am thrilled your scan showed a significant decrease in size. Off the top of my head I can't remember my tumor size but it was significant, something like 5cm x 7cm and my first scan showed a 30% reduction and that trend continued until it was no longer visible on my CatScans......I can only see the same happening to you. A large area with margins in my lungs to radiate which is why my respiratory status is the most compromised. I always said my docs were looking for catastrophe's while I was more interested in little nuances that were particular to me. As soon as my heart responded with tachycardia with minimal exertion I requested a Cardiology consult and a repeat Pulmunary Function Test. Not unusual to have cardiac involvement after radiation, especially where my tumor resided. And I wanted to compare my lungs to my baseline PFT taken at diagnosis. Fortunately my heart is in great shape and can handle the assault that my lungs went thru. My PFT revealed some significant functional changes and a CatScan revealed Grade III pneumonitis. Because it was caught early, my pneumonitis resolved easily enough and I was able to continue with my Durvalumab. My PFT also improved to near normal. I'm sure you're empowered to intervene if you feel the need to do so to ensure your best possible outcome. Another great tool was my phone camera. I remember once when I told my doctor I experienced petechiae on my lower extremities. He said that it wasn't possible. I then whipped out my phone and showed him some pics....he laughed and said, Oh yeah, that's petechiae. I think that was a turning point for him and me.....he started to really listen when I had something to report. And I was reassured that he was truly listening to my "nuances". I feel so very blessed to have survived treatment essentially unscathed. I wish the same for you. Take Care, Blessings, DFK
  20. Barb and Tomm- Great on continued uneventful infusions.....so close to the finish line. Life after Durvalumab-My observations after 6 weeks 1) Significant lessening of joint aches and pain. Chest muscle pain non existent. Was taking Motrin 800mg alternating with ES Tylenol daily for comfort, have not taken any analgesics in weeks. This is huge! 2) Weight stable and unchanged whereas during infusions I gained a pound every two weeks. 3) I'm not a bundle of energy but I can meet my daily responsibilities without crippling shortness of breath or fatigue and needing rest breaks. Not having to plan and be absent for every two week infusions is pretty sweet. I am enjoying my respite. 4) My heart continues to go from 75 beats per minute to 120 taking our stairs.....just 13 of them. I suppose to meet my respiratory needs, it is what it is. Saturation steady at 98-99%. After my 8 mile bike ride, I'm taching away in the 140’s, with my Saturation at 96%.....still within my target parameters. This has not changed at all since completing Durvalumab. Take Care, Blessings, DFK
  21. Opal-Prayers and positive vibes for your scan. Michelle and Ron-Reading your posts about Alk+ was like having a Sunday coffee on my deck with you two. Very nice. Take Care, DFK
  22. Happy Sunday to all, Joe-Good to hear from you. Is my tumor gone? I suppose, since a PETSCAN measures uptake, then in that sense my tumor is "gone" since there is no SUV reading. I was also told by my Pulmonologist that I will have scar tissue where my tumor was. Now, on my CatScans, over the course of a year, you can definitely see the large tumor at diagnosis and subsequent scans show a smaller and smaller mass until the last cat scan showed no mass at all. So again, my tumor is "gone". I have a high probability of developing pneumonitis and/or pulmonary fibrosis where I was radiated. Pulmonary function tests will show how effective my lungs are functioning and how much pathology has taken place because of the radiation. I did develop Pneumonitis 4 months post chemo/radiation or 3 months into Durvalumab. This was treated by one month of high dose Prednisone and one month OFF of the Durvalumab. I included the little "blurb" of 3 years after diagnosis, if you are still in remission, it is probably due to the immunotherapy's success in training my lymphocytes to recognize and kill my cancer cells. My oncologist was very adamant in saying it is much to early to tell if my NED or remission is due to immunotherapy. My oncologist, when questioned about the efficacy of chemo/radiation never fails to tell me how I always have cancer cells circulating in my body, and how conditions have to be right for a tumor to start. Then he throws in the Carl Sagan billions and billions of cells are needed to make up a tumor. Lovely! I started my Durvalumab treatments January 2019 and completed 26 doses January 2020. Though catscans throughout my treatment always showed my tumor decreasing in size, this PETSCAN done one month after my last Durvalumab confirmed my tumor is "gone". Surveillance scans in the future will be where the rubber meets the road. Opal-Thank you for your kind and encouraging words. I am disheartened to hear of the challenges you have been experiencing caring for your husband. Please know that you and your husband will be in my daily prayers. I wish for you a clean scan and for your hubby, a resolution to his pain and forward movement to his chemo. Kate-You are a survivor and I love that you are still swinging at bat despite your many challenges. Taking off the brakes on your immune system does wreck havoc on your body, no question. Your adverse response started early on which was very disconcerting for sure. Good luck on your PETScan coming up in a few weeks. Not tolerating the Durvalumab has put you without any treatment? I'd be interested to know, after all this doctor hopping and smoothing out the wrinkles that Durvalumab brought on, what, if any treatment will your new oncologist recommend? Ron-Thank you for such a detailed and heartfelt update. My sense of it all is that you're hanging tough, taking the hits, making adjustments and carrying on. Admirable. Very good point you make about Durvalumab having an end point and is given with a curative intent whereas your TKI is a maintenance drug that has no end point unless it fails. That’s a lot to wrap your head around. It never ceases to amaze me how much, as cancer patients, we are asked to shoulder, and adjust...again and again and again. Resiliency prevails and I suppose that is a good thing for us. The decision to retire is a tough one.....I wish you an easy road in making that a reality should you want that route. Georgia-Did your husbands skin sensitivity resolve? Tomm- Thank you for the link and recommendation for Saturday Market in Eugene.....sounds like a fun place to hang. I especially love the artwork that comes out of "Oregon". I went to school in Corvallis and frequently visit a gal pal in Portland. Love the Pacific Northwest area and we are looking at trains, planes and automobiles for upcoming vacay. I was having a bad day so I bought a bottle of vodka, gin and whisky and put them in an elevator and sent them to the top floor. I didn’t have a good reason. I just needed something to lift my spirits. Take Care All and I ditto Ron....very well wishes to all as we navigate....... DFK
  23. Thanks Barb, Michelle and Grahame for your kind words of support. It would be no surprise to anyone that I had a sleepless night prior to my MD appt to discuss PT/CT results. I felt especially vulnerable since I was experiencing new aches and pains from the flu. Pulled a muscle below my ribs from vigorous coughing and strained my lower back, again from vigorous coughing. In my mind, these were solid indications of metastasis to my ribs and spine. As I mentioned before, fear of the unknown are horrible victors and there are no boundaries as to what my overactive mind can conjure up. My dear husband is always tasked with pulling me back to earth from the stratosphere of the "C" what if's. Ron H, thanks for reading, how are you faring with treatment? Tomm, Tom, Curt, thanks for reading and your support. TJM, thanks for reading and welcome. Your tenacity will take you far. Early on in my treatment, I had a little secret that I kept to myself. During my bike riding, I envisioned that with each stroke of my foot pedal, I was killing "billions" of cancer cells. It became my reason to never miss a ride. Even when the weather was iffy, or I just wasn't feeling the love, I still had my task of killing billions of cancer cells. One especially rainy day, there was a break in the clouds and I ran outside, bike in hand screaming to my husband, I've got to go, I got some cancer cells that need killing. He of course was befuddled but knows that in my "C" world, I am always trying to work things out. Take Care everyone, DFK I was wondering all night where the Sun had gone, then it "dawned" on me.....
  24. Happy Friday to All, February 2020 PetScan/CT completed. NED. Original tumor completely gone. No lymphadenopathy. Oncologist stated 18 months from diagnosis, I am in remission. 🙏🏻😇💕 Questions I had for Oncologist 1) What indicators will tell you that the Durvalumab is/was successful? Why did I respond to treatment so phenomenally well. I have no biomarkers and my PDL-1 was zero. R-Chemotherapy leaves your body in a couple hours and the effects of radiation can last a year. If you are NED 3 years from diagnosis then we have a pretty good inkling that the immunotherapy retrained your lymphocytes to destroy your cancer cells. Immunotherapy is still in it's infancy and even though there are some successes, we still don't know and cannot entirely predict who will respond favorably. It takes billions and billions of cancer cells to form a tumor. We have prognosticators that will give us an idea of who might respond favorably to treatment. You had some favorable prognosticators: Your health was excellent, you maintained your weight during chemo and radiation, you maintained your prior level of activities during treatment, you had very few adverse side effects and your tumor burden decreased. You were astute to your body and symptoms were addressed in a timely manner. If you are NED at the 5 year mark, we can say the odds are in your favor for no recurrence. But there are no guarantees. Current staging is currently used for prognosis but there are too many variables so I like to look at each patient individually and how they are responding to their specific treatments. 2) What now? R-I will now see you every three months and we will do scans every three months. We will increase the interval of surveillance scans if you remain stable and NED. Continue to exercise and do maintain your weight. Recent studies suggest that your perception of your “Health Quality of Life" can be a favorable prognosticator for Progression Free Survival. So get out there and live and enjoy your life. Do define and prioritize your values. If you have any symptoms that are bothersome for two weeks, make an appt. to see me. Lung cancer cells can mutate and again fool your immune system to leave it alone. Lung cancer is a difficult cancer but science is moving forward with advances that are prolonging patients lives and controlling the disease long term. Yesterday was a red letter day. Hubby and I are planning for an extended vacation mid March to California, Oregon and Washington. Wooooo Hooooo, can't wait to be untethered from appointments and treatments for the next three months. I am going to hold judgement on how I feel NOT being on Durvalumab for a month. Three weeks out of the last month I had the flu and a tooth abscess so I wasn't exactly what you would call a happy symptom free camper. Thank you everyone for your support. Take care, DFK
  25. Hi Georgia, First and foremost, congratulations to hubby and you on finishing #11. I did have an area on my back, a very noticeable darkened square from radiation, that acted up every now and then with rash and itchiness. It was of my opinion that though the radiation caused the area to be sensitized, I felt the Durvalumab was responsible for the itching, tenderness and rash. I treated it with prescription Hydrocortisone 2.5% cream when it flared up with relief. Take Care, DFK
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