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DFK

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DFK last won the day on March 16 2020

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  • City
    Slidell
  • US State (if applicable)
    LOUISIANA
  • Province or district (if non-US)
    Slidell
  • Country
    USA
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    Quilting, Hiking, Bike Riding

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  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. Hi Shane, I know of Home Care Agencies that do administer chemotherapy at home. The nurses are certified oncology nurses (OCN) with special training. Patients are screened for eligibility. Also, only certain chemotherapy drugs are eligible. There are some chemo drugs that are administered via an IV pump in the home. You may want to talk to your physician to see if it is available in your area and if your father would be an appropriate candidate. Take Care, DFK
  4. 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
  5. You're killin' me.....Margherita cooked in a wood stove with garlic knots on the side and a cold draft....OMG! Best one I ever had in Golden Colorado.....to die for. Making shrimp pasta salad with toasted garlic sour dough bread for me and the old man, kids get meatloaf and mash potatoes with peas (boring).......DFK
  6. Our house smells like cheap frozen pizza cooking in the oven......not a bad smell though. We have had the three grandkids since they closed all the schools.....I can't even recall what it's like to have a luxurious peaceful long cup of Joe....DFK
  7. 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:
  8. 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
  9. 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
  10. Great idea though I can't make it for coffee hour this morn.....all the best for your virtual roundtable DFK
  11. Dear WC, The future is in the hands of my body......I'm no atheist but if my body fails me, I will die. I am a biological being and entropy is inevitable. I am alive 18 months with treatment and have lived joyously with gratitude every waking moment. And as long as treatment allows me to be a happy and functioning human being, I will opt for treatment to prolong my life, to prevent my body from failing and succumbing to my Cancer. Should my Cancer not respond to treatment and death is inevitable, I will not prolong any delusion or suffering and hopefully will have the wherewithal to stop all treatment and die as I have lived, with grace and gratitude. Though my children and grandchildren are loved and enjoyed, they are not the primary reason I chose treatment. I chose treatment for me, so I can continue to enjoy my life, which I do immensely. That's my two cents. Take Care, DFK.
  12. Hi Guicho, Sorry you have to be here but glad you found us and welcome to an online support group. I hope that this forum will provide you with any answers to your questions or concerns. It's a very tough road to be on and we have all been there in some form or another.. I lived in Imperial Beach/Egger Highlands so I am a little familiar with the San Diego area. I still visit the area frequently as my son lives there. I have Scripps MD Anderson in La Jolla as a backup should I need care. I was diagnosed in August of 2018 with Stg 3 NSCLC (Adenocarcinoma). Your oncologist and Nurse navigator should be able to refer you to a support group in your area. You can also post your concerns and questions here on Lungevity. It's very good to hear that your cough has decreased and that you are sleeping better. Do you have any specific questions about your care, about your cancer, about your medications, about finances, about any side effects you may be experiencing? Hope to hear back from you soon. Take Care, DFK
  13. 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.
  14. Good one Tomm......love it.🤪 DFK
  15. 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
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