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DFK

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Everything posted by DFK

  1. 16 years.....In am in awe. I so appreciate you carrying the torch of hope for all of us.....DFK
  2. Oh Tomm, I think it's great you carved some time and made an effort to have your teeth checked but whoa, you sure got handed a hell of a lot to contend with. But on the other hand, priceless to have your teeth in good order. I was fanatically religious about having my teeth cleaned and checked every 6 months which is why it was so shocking for my dental issues to rear their ugly heads BUT it's no secret that former smokers contributed to compromised dental health and yes, chemoradiation and our age makes us prime candidates for bone loss and gum recession resulting in tooth decay. Both of my "root canals" were the result of decay right under the edge of my crowns that had been in place for over 20 years....I had a good run. But still, what a miserable hand to be dealt with, on top of my flu. I remain completely indignant.....well at least a little bit. Hope your diligence for your tooth health is seamless and painless. Finished my PETSCAN today.....managed to control my dry hacking cough (somewhat) during the procedure. Felt great to get that out of the way. Tomorrow root canal....knocking these annoyances to the side is a good thing. Started my Vitamin C 1000mg/day. I feel so empowered! Happy Valentines Day my friends: I was arguing with my husband at Luigi's Diner when my best friend came over, grabbed the garlic bread and coleslaw from our table and ran off. I wish she would stop taking sides. Take Care All, DFK
  3. Grahame, Great that you're keeping a journal of how you're feeling. Not so great that you definitely noticed muscle aches and fatigue. I do believe there is a crossover of the after effects of chemo/radiation and the beginning effects of Durvalumab. There was for me. I think you're awesome that you had a full day, got a totally new drug swimming in your system AND was still able to take the dogs walking. You sound like you are going to do just swimmingly fine. Enjoy your two week break and keep us updated. Fatigue and joint/muscle aches are the primary side effects of Durvalumab. Very annoying but for me, not hobbling. I combated my fatigue and muscle aches and pains with walking and bike riding every other day. It wasn't always easy but I bought into the philosophy, let the drugs take care of the cancer, my job was to take care of my body. Take Care, DFK
  4. Sweet and restful dreams Barb, you've had a long day......DFK😴
  5. Thank you for your understanding of Durvalumab duration. I am impressed with your nurses protocol in starting and ending your Durvalumab....exactly how it should be done with a peripheral line. I elected to have a port, my veins are tiny and I'm squeamish with needles. The port has worked out very well for me for lab draws and infusions. You've had a busy and monumental day. Rest well my friend and bask in the good fortune we are afforded with this miracle Durvalumab drug. All the best, DFK
  6. Grahame, Forgot to ask. Here in U.S. the standard of care for Durvalumab after concurrent chemo and radiation with no progression is one year/26 doses. You will be receiving two years/52 doses as maintenance? I know only of one other person who received two years of Durvalumab but she was in a clinical trial for two years and only received a total of 26 doses over the two years. She received her last Durvalumab in 2018 and today shows NED, No Evidence of Disease. Thank you, DFK
  7. Grahame, Excellent on "dusting" #1. The mild flush, was that at the end of the infusion? Are they accessing a port for infusions or peripheral line? Just wondering because the first couple of Durvalumab infusions I received I did not like how the nurses "flushed" my line/port with their 10cc saline then 10cc Heparinized syringes with the Durvalumab still in the main line. I basically could taste the Durvalumab and it made me feel a little flushed and uncomfortable. I talked with the Manager of the treatment Center and told her protocol is A) Slow IV push saline over 5 minutes to clear my IV line of Durvalumab or B ) Piggyback a 50cc bag of saline and run it at the end of my infusion at the same rate as Durvalumab was infused to clear the line of Durvalumab before Heparinzing my port.. The nurses elected to do B ) and I never had the uncomfortable taste and of feeling flushed. It's a small matter but it made a difference to me. Congrats on getting this curative train off the platform. Polly should be joining you soon. I believe she's still waiting for CatScan results. Take good care Grahame, So happy you have started. DFK
  8. Good Thursday Morning to Tomm (#22) and Barb (#20), The countdown is on. Wishing you both uneventful infusions today. Barb, sorry to here about thrush issues from inhalers. What is MD giving you for your Thrush? I am taking Trellegy, a steroid inhaler and yes, I'm suppose to rinse my mouth after using. I will try to be more consistent. I feel like part of the Lungevity side line cheering squad holding that paper cup of water.....wishing you both uneventful finish line crossings. Recap, got the root canal for abscessed tooth behind me, and the head cold with infected sinuses with piercing ear aches behind me, then finally am looking at the flu in the rear view mirror though residual annoying cough persists.... but I am determined to finish my PETSCAN tomorrow. Results to be discussed on the 20th with Radiologist and Oncologist. But hey surprise surprise, my dentist was concerned that my tooth decayed so fast since my last x-rays were done in December and I had no dental issues.....so he had another good look at all my teeth. Well, well, well, I have another tooth abscess and this tooth may not be salvageable.....I find out Saturday after excavation if it’s s a root canal or extraction. One of my wisdom teeth. Dentist said pretty common for radiation and chemo to affect bone loss, gum recession and promote tooth decay. I was beyond upset, had my melt down and made all the appointments that need to be made. It's been a rough month but I am taking care of business and it's all okay. Take care everyone, DFK
  9. Thank you Bridget for your kind and encouraging words. It's no fun being sick that's for sure and I'm usually not one that gets TKO'd, both physically and emotionally at the same time. This flu sure as heck took me by surprise and really mopped the floor with me. But I am on the mend and feel tons better than I did a few days ago. Take care all, thank you so much for your support and caring, DFK
  10. Tomm, Interesting Abstract on Artemisinin. Can't say I understand the entirety of the article but I can grasp the importance and need for more clinical trials and pioneers like yourself who do their homework. I'm a newbie re: CBD products so appreciate the link you provided. Grahame, Thank you for your input on controlling my hacking cough.....any and all recommendations are sincerely appreciated. Michelle, Your social worker friend is spot on. What makes us tough and resilient may also be our downfall, our Achilles heel. A little glitch becomes our nemesis. Never too old to learn new coping strategies, to better understand our fragility. Take good Care all, DFK
  11. 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
  12. 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
  13. 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.
  14. 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.....
  15. 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
  16. 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
  17. 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
  18. 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.
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. Great job Barb on bagging #18. It's so sweet doing the countdown. Enjoy your well deserved weekend. Take Care, DFK
  25. 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
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