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Everything posted by DFK

  1. Thanks everyone......put in a nutshell, I was disappointed because so many of my plans had to be shelved because of this unexpected flu. Plans that I had so looked forward to. I have already paid for flights for Friday's PetScan for husband and I. Chances are, I should be able to complete it without a hitch, but that's predicated on my nagging hacking dry cough being resolved. I am optomistic. Take care everyone, DFK
  2. Hi Everyone, I think Michelle's hello (Above) was a wake up call for me to put a halt to my current pity party. As most of you know, I completed my year/26 doses of Durvalumab on January 22nd. Man was I flying high. I did it, I finished a whole year. I had a bunch of lunches to attend, I had a list a mile long of all these projects I had put on hold. I was a force to contend with. Even increased my bike riding to every day. My husband and I were finally making plans about taking a long extended vacation. The world was my oyster. THEN, I got sick with the flu....five days home from my last infusion and BAM, I was laid out, TKO. Headaches, sore throat, queasiness and nausea, vomiting, diarrhea, ear aches, my entire body shrieking in pain. Coughing non stop. Two visits to Urgent care and 12 days later, I am finally feeling a little human again but remain weakened with about half my appetite back.... dropped a total of 10 lbs, not the best way to lose some weight. I mention this prolonged "illness" because my lungs seem to be my weak link. I was able to shake most of my aches and pains with OTC medicines but this nagging hacking cough is really quite challenging and lingering. I have a PETSCAN in 7 days and my cough has to be resolved......I am praying so hard. So what's all this verbose complaining about.....we’ll, for me, it showed me I'm never far from falling apart emotionally despite all the strides I've made in the past year. I told my husband I am so depressed, why now,? why so sick? Why, why, why, I just couldn't get off of it. Him being of the male variety was very matter of fact, "You got the flu, you need to ride this one out, you will be better". Maybe from his perspective it's as simple as that but when you're the "injured" party and can barely lift your head off the pillow for almost two weeks, the light at the end of the tunnel seems miles away. If you haven't received the flu shot, I highly recommend you get it. As I mentioned before, I've never had the flu before so never took a flu shot. Well that cocky attitude didn't serve me well. These are different times and I will never refuse to take a flu shot again. I love you guys, thank you for letting me spout my misery. Take Care, DFK
  3. DFK


    Hi Polly, With very open arms, welcome. You've already made it thru your chemo and radiation so please congratulate yourself on that accomplishment. This nasty disease is a one day at a time, one treatment at a time, one cry at a time deal. Put one foot in front of the other and just live your day to the best of your ability. If it involves crying in private, then cry all you want. There are no rules on how to emotionally react to such a devastating diagnosis. What I do want you to know is that Immunotherapy is now a standard of care with a curative intent. Please go to the Immunotherapy/Durvalumab LINK that Tomm provided and get to know us and our journey and our challenges. You are never alone on your journey.....we are here to carry you along as others have carried us. Share your journey with us and ask any questions you may have. We are here to support and help you to try and make sense of the physical aspects of this disease as well as the emotional messiness that follows. Warm hugs to you, hang in there Polly. I'm so happy you have reached out....what a brave woman you are. Take care, DFK
  4. Roseann, I love what you said, I love what your Oncologist agreed with. What a beautiful thing to be stable. Tomm, Amazingly enough, there happens to be a FABNO Naturopathic doc fairly close (another plane ride but who's counting!!!!!) who also happens to have a 2018 Naturopathic graduate under him doing his residency. He will be able to write for FABNO exams upon completion of his residency, which makes two of them in the same clinic. I also will take Michelle's ideas and ask around for recommendations. I think ideally, I would like to establish care with a Oncology Naturopathic doc and be able to do video-conferencing or FaceTime for follow-up. I don't want geography and location to restrict my choices, but I know I also have to be financially responsible too.....we shall see. Thanks everyone for your support and steering me in the right direction......DFK Have you heard about the corduroy pillow......It's making headlines.
  5. Michelle, you are a dear and on top of your game. With your recommendations and Tomm's links, I should be in pretty good shape to find myself a Naturopathic doctor or an Integrative MD. Thank you for being so kind and generous. Take Care, DFK Tomm, Did you hear about the Origami factory? It folded.....
  6. Barb, Tomm and Roseann, You guys are kicking it. Happy to hear of uneventful infusions as you are nearing the finish line. Tomm, thank you so much for the link to FABNO Naturopaths. I have been keeping a list of all the complementary medications you and Michelle have mentioned and will follow thru. Forgive me for my ignorance, but do Naturopaths accept insurance or is it private pay? I looked at nearby cancer centers and no one has an integrative team, seems I have to look outside for an independent Naturopath. And the Naturopaths that I found stated cash or credit card payments to be paid with service rendered. Roseann, About my right chest front and back muscle aches and pains.....I definitely will be addressing this further as sometimes the pain and spasms can be crippling. I sailed thru my radiation treatments without any skin or esophageal problems, so I just chucked up my pain to damaged tissue and irritated nerve endings....I'd love to find a solution. Been down for the count the last six days....thought it was a run of the mill cold, nope, I got a touch of the flu and am TKO. Am on the mend but still weak and intake remains minimal. Not a good way to drop 6 lbs., nor a good way to celebrate finishing a years worth of Durvalumab. A visit to Urgent care confirmed I don't have an infection to my ears (it hurt so bad) and my lungs seem to be handling the coughing without an infection. Thank goodness, the last thing I really need is pneumonia. I always though of myself as pretty darn resilient but I do believe managing our cancer and processing the chemicals in our body does take a toll on our immune system. I've never had the flu and I've never taken a flu shot....lesson learned, things are not as before. I visited the Air and Space Museum. Nothing was there. Take Care all, DFK
  7. Hi Georgia, Sorry to read that your husband had such a bad case of esophagitis and later lung inflammation and infection, but that only reinforces how sensitive he was to the radiation treatments. Did his skin remain intact during his treatments? I only ask because I have seen some pretty bad cases of radiation burns and in my mind, if that's what happens to your skin on the outside, I can only imagine what happens internally. I can't speak directly about Gabapentin but I'm sure someone will chime in regarding their usage and dosage. I do know if it's being prescribed for neuralgia, titration of dosage takes a while to find that perfect match of pain relief and maintaining alertness. I noticed that all of his discomfort and pain are on the right side. I also had 30 radiation treatments at 60gy for a right lower lobe tumor and subcarinal lymph node. I completed my radiation in December of 2018 and I still have much discomfort in my right chest, right ribs and right back area. My back muscles on the right side aches all the time and standing at the kitchen sink doing dishes really irritates my right chest and back muscles, sometimes to the point where I have to wash dishes in increments. I just chalked up my pains to my radiation treatments and use Tylenol 1000mg and/or Motrin 800mg for relief. I might have mentioned this continuous pain to my oncologist a few times and I always got the same answer, use my analgesics and if I don't get any relief, he would recommend alternatives. I never sought anything else. I do find a warm heating pad/compress comforting for my chest/back aches and pains. There are other pain relievers that others have used and their experiences should be forthcoming. Take care, keep asking the questions, DFK
  8. Congrats Roseann on finishing #11 and you are so correct, Durvalumab and it's pesky little side effects has a way of playing hop scotch with our calendar. I too gave up charting it out to #26. And very good that you dodged another "itis" on your eyes. Drops and wipes are very doable. I had a friend who had collagen plugs inserted into her tear ducts because of the hassle of using eye drops. She chose Collagen as it's a temporary measure and will dissolve on it's own in a couple of months, she can then chose to have a more permanent plug if it works for her. I'm in your camp, give me the drops and wipes. I know Tomm mentioned in previous posts that he was receiving IV Vit C prior to Durvalumab but was told to stop VIT C infusions until Durvalumab treatment is over. I have a Medical Marijuana Card but find the availability of products limiting and expensive, so I have yet to utilize it. Opal, Barb and Michelle Unfortunately, I don't have access to a LiveStrong program but I'm hoping being off the Durvalumab and continuing with my biking will get some extra pounds off. Thirty pounds is a lot of extra weight to put on in a short period of time....it does stress the body. I've been a practitioner of Tai Chi (Chuan Style) and Yoga for the past 20 years. I find that Tai Chi is like an internal massage where as my Yoga ensures my core strength. Thanks for the information on Low Dose Naltrexone.....more questions for my doc. Carrying on......DFK
  9. Thank you everyone for your kind words and induction to the POST Durva Club (PDC). There's not much written about returning to a symptom free pre Durva life so I will do my best to journal my "findings" and share with all. I am still officially, with a BMI of 24.58, within normal weight parameters for my height. Of course 25.0 is considered overweight. "Overweight" is not a label I'm comfortable using but I do understand the stress of our bodies carrying that extra weight. So my 30lb weight gain, fatigue, joint/muscle issues and headaches are annoyances I look forward to looking at in the rear view mirror....adios, au revoir, goodbye and good riddance. We shall see. Barb, Tomm, and Roseann-Opal and I (Official PDC's) are waving you forward......as well as all your faithful Lungevity cheerleaders. Thanks all, Take Care, DFK P.S.-Yes Michelle, my oncologist shaking my hand at every visit was a quirky little deal and I did ponder the whole Ground Hog Day aspect, "Have we met?". But after awhile, I realized that he's just a sweet gentle man as in Gentleman, and it truly was a sweet greeting gesture.
  10. Good Thursday to All, Crossed the finish line yesterday. Very uneventful #26 infusion. And to be honest, a little bittersweet. I was saying goodbye to the very people that have carried me for the past 17 months. The same staff who: taught me about my cancer as I cried and sniffled, who navigated ALL my appt's in a different city, who taught me about my Durvalumab, who laughed at my comedic antics and stories, who allowed me to slum in a private infusion room for a couple hours with laptop set up while waiting for my drug, who juggled appointment times so I didn't have to fly in an extra day, who held my hand during numerous procedures, who massaged doctors offices so I could see Specialists a little earlier than the usual 4 months waiting time who kept me up to date in copies and DVD's of my medical records, (My Pulmonologist) who gave me his personal cell so I could call him instead of flying in for ONE. MORE. APPOINTMENT, ditto for my PCP, (My Cardiologist) who at first staid and stiff now smiles and gives me a hug when we pass in the hallways. (My ENT) who apologized for the long wait but had me diagnosed and fixed within two weeks of our meeting, and who explained in detail how radiation paralyzed my vocal cords, (And my Oncologist) who though rarely uttered more than a few words, always smiled at me and shook my hand (18 times) as if meeting me for the 1st time and always told me what my next step would be. I learned to trust this quiet and kind man in my journey, and together with the loving help of all, they have brought me fairly unscathed to NED. I am more than appreciative, I am overwhelmed with my good fortune. So for each "today", I will do my best to be mindful of my blessings. I'll be sure to post follow-up progress reports. Take Care, DFK
  11. Grahame-I have no personal experience with Vitamin C infusions, Metformin, a cholesterol lowering Statin or Mebendazole that is used either alone or in conjunction with Durvalumab immunotherapy. I have read on the benefits of Vitamin C and Metformin. The dog dewormer has been making the rounds recently but I have not read enough about it to have an opinion. Roseann-So sorry to hear your #11 has been held in lieu of possible Uveitis. Hoping you get that eye evaluated el pronto. And please share what your Naturopathic MD has to say. You seem very spirited and focused to take care of business. Good for you, keep blazing. Opal and Roseann-I am beyond ecstatic to have had my port inserted but it was a traumatic insertion. I requested conscious sedation because I KNOW I cannot handle even the mention of pain. But the radiologist took quite a bit of time convincing me it would be a short procedure, a walk in the park, most patients get by very easily and comfortably with just local anesthesia. We went back and forth about it and he told me that on the day of my procedure, I could opt for either. Well stupid, stupid me believed him about it being nothing more than an IV stick.....so I gave consent just for local numbing. And for me it was horrific. Though I was numb, I felt every tug and pull and manipulating that was going on and it was not conducive to feeling calm and nurtured. I could hear the Radiologist instructing his team on what he needed and on how the catheter was not cooperating.....words no one should hear when you're lying on the table, AWAKE and anxious. To add insult to injury, they bandaged me up good and secure, only for me to hear the words, "Aw shucks, I forgot to flush her port". Off came all the layers of occlusive bandages stuck like super glue to my skin because they used benzoin tincture. So my skin was ripped raw and ANOTHER dressing was applied after I was flushed with Heparin. Took my skin a couple months to heal from that assault. I love my Port, but I will never let another Physician convince me what is best for me when I KNOW myself better than anyone. I really wanted to trust what my radiologist was saying but he should have listened to my aversion to pain and needles and my ease into anxiety with intrusive procedures. So after grand standing about this whole Port thing, you bet'cha Roseann, I'll be knocked out plenny good with conscious sedation for the removal. Opal, again, you are some tough cookie to have had the fortitude to take those needle sticks week to week. I applaud you. Take Care all, DFK
  12. Hi Opal, You are a tough cookie.....As much as I have an aversion to pain, I elected to have a port placed in lieu of lab draws and IV insertions. Now I'm fretting the removal of my port. I know I'll be numbed up good for the removal but it's the healing and the subsequent "healing" pain I dread. I suppose after all that I have been thru, I can weather this too. Thanks, DFK
  13. Hi Grahame, Same here, had labs drawn every two weeks before the infusion and met with my oncologist every other infusion or once a month. But before I started Durvalumab (and chemo), my oncologist recommended I have a port surgically placed. I agreed as I have a very low tolerance to pain and needles. I have had no problems with my port over the course of the year. I was also provided with a numbing cream to put on my port before the infusions so I essentially did not feel the needle going in and being removed. They also drew all my labs from my port and if I needed a CAT Scan with contrast, again my port was utilized. I guess it's all a matter of preference if you want a port. I will have my port removed if my upcoming Scans are clean. Also, before I started Durvalumab, "someone" had to check if my insurance would cover the infusions and you should know ahead of time if there are any costs that you may incur. Durvalumab is a costly medication that even with insurance , you may or may not have a co-pay. If finances are a concern, they have staff, be it office staff or a Nurse Navigator that can provide you with organizations that may assist with costs. I also met with a Nurse Practitioner before I started who instructed me on what kind of drug Durvalumab is, what the goal of Durvalumab is and what side effects the doctor would be monitoring and I needed to report. I was never on a regular schedule for Cat Scans but because I had some problems with increasing shortness of breath and vocal chord damage, I did have a total of four Cat Scans over the course of a year. This is a lot to absorb in addition to your recent diagnosis as well as your recent completion of chemo and radiation. Take care of yourself first, ask questions of your healthcare team and keep a positive attitude as much as you're able. It's a tough road we're all on but doable when information and support are within reach. Take Care, DFK
  14. Thanks so much Opal for your "post" Durvalumab report. Questions have been floating in my mind about what kind of return to normality I can expect. I remain hopeful that most of my annoying side effects of fatigue and joint/muscle aches will be minimal. You have given me something to look forward to. Did you have a port for infusions? If yes, have you had it removed? Take Care, DFK
  15. Great job Barb on bagging #18. It's so sweet doing the countdown. Enjoy your well deserved weekend. Take Care, DFK
  16. Tomm, You are slaying it....what an inspiration. Thank you for sharing. BTW, Mensa club member I will never be....took me a couple minutes to get your Hippie joke for Michelle....scheesh, I'm so embarrassed....good one! Take Care, DFK
  17. Hi Grahame, I joined Lungevity in August of 2019 (8 months into my Durvalumab tx's) and found the support and information from everyone invaluable. I started my Durvalumab infusions exactly three weeks from my last chemo/radiation treatment which made discerning side effects interesting. I wasn’t entirely sure if some of my bothersome symptoms were from the initiation of Durvalumab or from my lingering chemo/radation treatments. One bit of advice I would impart to anyone starting on this Durvalumab journey is to be the best advocate for yourself and address any concerns you may have ASAP to your health care team. The wheels of medicine can move slowly so it's best to start the dialog early. Best of luck to you. Take Care, DFK
  18. Hi Charmaigne, First and foremost, welcome to Lungevity, and thank you for taking the time to join this forum. I have been a member since August of 2019 in search of information after being diagnosed in August of 2018 with NSCLC Stage 3A. I do not have any biomarkers so my treatment plan involved chemo and radiation followed by one year of Immunotherapy. My one year of immunotherapy will be ending in a week. I usually post under Immunotherapy and find that sharing my experiences and reading of others experiences has been very helpful. Our journey, so individual and yet so similar. We are all here to support each other so feel free, and let her rip. You are safe here to air all of your questions, your fears, your concerns, your triumphs and whatever may be foremost in your mind. My heart ached when I read that your mom passed away in 2018. My sincere condolences. It must have extraordinarily difficult knowing you both were diagnosed within a month of each other. Take Care, DFK
  19. Dear dear Opal, What an absolutely endearing sentiment to say about me and Michelle. And yes, chomping at the bit just doesn't quite come close enough to describing how I'm looking forward to my last Durvalumab infusion. A "C" rights of passage. It's been a heck of a year.....I tasked myself to keep all my appointments and to keep my wits about me. If push came to shove, I really can't say what task was harder. As Tom G has alluded to many times, we need to live our lives fully each and every day. Allow for our physical challenges but do what we can, when we can. And always smile and laugh in the face of adversity (sometimes, in between the tears). That strategy was gifted to me early on in my journey. I am blessed. As we amble forward, we'll have lots to take notes on and compare as others pull us forward, as we pull others along. Take Care, DFK
  20. Thanks Michelle, those are some sweeeet "atta boy's" you gave me. I am blessed. My son and his girlfriend, upon hearing of my diagnosis, sent me a care package to see me thru my chemo and radiation. Along with the usual arsenal of comfort potions and lotions, they included a small stuffed rag doll of Wonder Woman. The note in the box simply said, "You are our mom, you got this. Time to pull out all the stops and be the Wonder Woman we have always known you to be". Still brings tears to my eyes.......DFK P.S.-Wonder Woman is our Bedroom Ceiling Fan Pull......a little bit on the clunky side but the grandkids get a kick out of it.
  21. Good Wednesday to all, Just bagged #25.....and dovetailed a root canal right after Durvalumab infusion. Labs normal and feeling pretty darn good overall despite assault on my tooth. Nasty stuff that root canal......haven't needed any dental work other than cleanings for the past 14 years so it was quite an eye opener to have sat for 90 minutes of work. But it's a done deal and I can move forward to a crown. Last infusion in two weeks and it can't be soon enough. I'm really, really hoping, I mean REALLY, REALLY hoping for some normalcy in my physicality, in my routine. I have been flying out of town for almost 17 months of treatments and will not miss my 4:30am wake up alarm and that leaving in the dark, returning home in the dark drudgery, NOT another day at the airport routine. Funny thing though, I feel overwhelming blessed to have the opportunity of "modern day" medicine and knowing that my predecessors did not have as many choices that I have been afforded.....humbling on so many levels. I already have my PET Scan scheduled for 4 weeks after my last infusion. And if all goes according to MY plan, my port will be removed and I will be in "surveillance" mode. As I pontificate and bemoan my "C" status to the only person (outside of my spouse and kids) that knows about my diagnosis, he shuts me up pretty darn quick, by telling me that I've come out on top of almost every scan and test and procedure that they have thrown at me. How true, how true. I suppose it takes an objective viewer to summarize my journey. For if you were to ask me, my journey has been brutal and taxing and depleted every core ounce of strength in my being.....I know, I know, what a drama queen! And with that note, I better quit before I dig an even bigger pity hole. Enjoy your day and greet it head on with gratitude. Take Care, DFK
  22. DFK


    Happy New Year Kate, Good to hear from you and to get an update of where you're at. I can truly appreciate your concerns of no treatment with still a "trace" of cancer, however, chemo/radiation has been a good standard of care for years before Durvalumab or targeted therapy came along. My girlfriends dad is 7 years NED after receiving only the chemo and radiation combo, Stage 3b inoperable. He is an inspiration for hope and prayers. Although it's nice to have family and friends inquire about our health and show initiative to assist in some of our needs, whether physical or emotional, sometimes the harsh reality is that not everyone can be empathetic or feel comfortable talking about the big "C". It appears that having a cancer diagnosis not only asks of us to deal with all the medical treatments and all that that entails but it also asks that we dig deep within to find our own core of strength to help us through the dark nights of the soul. This is especially true for those of us who may not have a primary caregiver and partner/spouse. I find it difficult NOT to get philosophical about our journey with cancer, about setting our priorities and values in order and making my life meaningful. I'll keep you in my prayers. Take care, DFK
  23. DFK


    Hi Woco, i am not on Keytruda, but have been on a monoclonal antibody immunotherapy called Durvalumab. Headaches have been frequent and fairly persistent during the course of my treatment which is going on 12 months. What's interesting is at 66 years of age, prior to my diagnosis and treatment, I can't recall ever experiencing a headache. Headaches are not consistently in the same area, and I have no neurological deficits or concerns so I have just accepted the fact that my immunotherapy is the culprit. I will complete my year of Durvalumab at the end of January and will have a PET Scan a month later. I will be requesting a brain MRI to be done at the same time. Better to be safe than sorry. There is a Keytruda forum and I'm sure you'll be able to commiserate with fellow Keytrudas there. Take Care, DFK
  24. Roseann, As you navigate through your travails, know that you have a community of peeps here that will support you. As ludicrous as this may sound, your cancer sounds like the one aspect of your life under control and stable. Here's hoping the rest of your challenges will be met head on too. Great job on getting started on antidepressants. Hang tight, DFK
  25. Tomm, Good to hear you're beautifully boring and that CBD and THC is helping you to the finish line. Well done. Barb, Yup, we know our bodies better than anyone. Getting shuffled from chemo and radiation to Durvalumab makes all of them suspect and a perfect scapegoat for all of our ills. I was told at the beginning of my treatment what was in store for me but who in their right mind can even begin to fathom the immense toll, both physically and emotionally, our diagnosis and treatments involved. We’ve adapted well, by participating and going forward with our treatment plan. Hope remains primary and integral for a curative goal and a return (somewhat) to our lives. I love the idea that as long as we are "living" we need to live fully and gratefully. That's where my arsenal of coping and medications come in. Keeping it real and doable. Take Care, DFK
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