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Everything posted by DFK

  1. 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
  2. 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
  3. 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
  4. DFK

    Question on port

    TJM, My two cents on the numbing cream may be a useful tip. I was told an hour application prior to needle insertion for numbing but I found that if I put the cream on 2-3 hours before needle insertion, this ensured complete numbing during insertion and sometimes the numbing lasted up to 6 hours when the needle was removed. Good luck on your infusions. Take Care, Blessings, DFK
  5. 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
  6. 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
  7. 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.....
  8. 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
  9. 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
  10. 16 years.....In am in awe. I so appreciate you carrying the torch of hope for all of us.....DFK
  11. Girl, you truly got this covered. Now be a good wife and run those Epson salt baths, apply some gentle massage, a few candles for ambience and ESPN in the background.....Gosh, who wouldn’t heal from that! Take Care, DFK🥰
  12. Michelle, Gosh, I always say pain should be non negotiable. Only thing that I would add is if medical insurance is a barrier at this point in time, do you have a friend who is a Registered Physical Therapist that can do a complete assessment of where the strain and fatigue is and set up a strengthening/recovery program? Couple things 1) P.T. assessment and personalized rehab program at home 2) Correct usage of Foam Roller 3) Correct usage of Illiotibial Band 4) Myofascial Release by a qualified Therapist 5) Rest with heat/ cold treatments 6) Hydration to minimize lactic acidosis buildup 7) Rx strength Motrin 800mg to get that inflammatory response down My husband at 66 stands at 6’6” is an old athlete who still thinks he can carry refrigerators, work a chain saw all day, haul trees, do road work and wonder why he's half crippled at the end of the day. Fortunately, I have a good network of Physical Therapist friends that are familiar with him and have done a good job of truly treating his injury's. My husband seeks comfort measures but I insist on maintaining muscle integrity. Last thing I need is a herniated disk or a muscle sprain because at 66, recovery takes longer. Good luck Michelle.......DFK
  13. DFK


    Polly, Great on your swallowing improving with regular honey, in an ideal world, pain should always be non negotiable. I am back to my normal self......rough past three weeks but forward and upward. Can't wait to get back into the swing of things. One more tooth needs to be addressed, then I am home free.....for now and that's all I can hope for today. Grahame is posting on Durvalumab forum....please check it out. I'm sorry but I don't know how to creat a link to it. Happy Valentines Day. Good to hear from you, DFK
  14. 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
  15. DFK


    Hi Polly, Just wondering how you're doing. Grahame got his first dose of Durvalumab today and I thought about you getting prepared for your immunotherapy soon. Has your swallowing improved? I just went thru a rough patch of getting a head cold, then flu, then a tooth abscess which laid me out physically and did a job on my emotions....it can be so hard at times. Keep us updated, you're never alone on this journey. Take Care, DFK
  16. 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
  17. Sweet and restful dreams Barb, you've had a long day......DFK😴
  18. 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
  19. 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
  20. 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
  21. 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
  22. 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
  23. 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
  24. DFK


    Hey Lin, Not to get all sappy and stuff but when I'm fortunate to have my little darlings over for a sleepover, they're 8, 7 and 5, and as I tuck them into bed, I always make them "wish upon a star." After all our wishes are made, we sing the chorus together as the wind up music box plays. They usually keep their wishes a secret but sometimes we all vote to share our wishes. I always tell them that I wish to be around for them for a long, long time so we can always make wishes together and sing about it. There is no doubt in my mind that those little angelic voices singing, WHEN YOU WISH UPON A STAR, MAKES NO DIFFERENCE WHO YOU ARE, ANYTHING YOUR HEART DESIRES, WILL COME TO YOU has calmed my nerves and has given me hope every single day.....You gotta believe! I know you do. We both have scans coming up to show the efficacy of our treatments......it will be good for the both of us. Take Care, DFK
  25. DFK


    Yes Polly, this LC business brings the strongest to our knees. No doubt about that, but we stand up and begin anew. I'm still feeling my way around and found that taking notes, and recommendations from others allowed me to participate in my care while still living my life. I have copious notes on different complementary medicines that I plan to follow up on. There is such a wealth of information that is so freely shared and I feel so darn fortunate. I'm just getting over the nastiest ever flu....humbling, but I know it will be in my rear mirror soon. Then onward and upward towards health. We have lots of exceptional role models here that will keep us on track. Take care Polly, keep us posted on the Durvalumab site and welcome again. You and Grahame should be starting your immunotherapy pretty darn near at the same time, how nice to have a comrade in arms. DFK
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