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Everything posted by DFK

  1. Hey Barb, All my itchies were related specifically to a rash, most prominently on my back area where I had my radiation. This rash erupted about a month or two into my Durvalumab infusions. I treated it with Prescription Hydrocortisone, and Doc did mention taking an OTC antihistamine if needed. Itchies still comes and goes as it pleases to my back radiation area though no recurrent rash. Not sure if your pin pricks feeling is the same of what I experienced but I did have a needles and pins sensation on all my extremities that the doctors related to my extreme stress when I was diagnosed and running on the rat wheel of tests and procedures. Docs called it temporary paresthesia. They prescribed Klonopin 0.5mg for my "panic" and "anxiety" responses. This sensation never itched but it sure feels out of this world weird. It's one thing to have a hand or foot experience that needles and pins sensation like it fell asleep, but your whole body....it was a strange symptom. The Klonopin helped, in the category of benzodiazepines like Xanax, Ativan, and Valium. Just kinda goes back to my daily journaling where I noticed some of my days were totally consumed by symptom management with my arsenal of medications. This coming from a gal who never had any prescribed medications or medical problems until NSCLC. Anyone out there in Durva land needed any invasive dental work while receiving immunotherapy? I've been to my dentist per usual every 6 months for cleaning, but couple weeks ago, one tooth decided to get a little fussy. I was evaluated this past Monday and I have an abscess, am on antibiotics and scheduled for a root canal on the same day as my Durvalumab infusion.......I have a FYI call into my oncologist to see if my dental work is contraindicated with Durvalumab infusion. Haven't heard back from him so I plan on proceeding with my endodontist appointment.....pain is great motivator. Take Care, DFK
  2. Hi Barb, Like Opal and Michelle stated, you got this. Yesterday I gathered all my notes since I was diagnosed and I was surprised at how far back my "complaints" of headaches, joint pain, chest muscle pain, back pain and fatigue went. In my daily journaling, most of my notes reflected symptom control with medications. I suppose, symptom control is high up there on the list as we head towards the finish line. That with a ton of patience and mental fortitude and a twisted sense of humor.......we are doing this together. I get your worries about your kidney and liver with ibuprofen......I've been taking Motrin prescription strength 800mg tablets. One tablet seems to knock out all my ills for the day but I do alternate it with ES Tylenol. So I too am always very interested in my lab values as well as any possible tummy issues....so far, so good. Carry on Barb, I'll be joining Opal soon and we both will be waiting for you at the Durvalumab finish line. We’ll also be cheering on Tomm, Charles and SillyCat..... Take Care, DFK
  3. Wishing you all a very Happy and Healthier 2020.....We’ll remember the turbulence of 2019 but will let the year die for the rebirth of 2020. Take Care, With much love and gratitude, DFK RING OUT, WILD BELLS by Alfred Lord Tennyson - 1809-1892 Ring out, wild bells, to the wild sky, The flying cloud, the frosty light: The year is dying in the night; Ring out, wild bells, and let him die. Ring out the old, ring in the new, Ring, happy bells, across the snow: The year is going, let him go; Ring out the false, ring in the true. Ring out the grief that saps the mind For those that here we see no more; Ring out the feud of rich and poor, Ring in redress to all mankind. Ring out a slowly dying cause, And ancient forms of party strife; Ring in the nobler modes of life, With sweeter manners, purer laws. Ring out the want, the care, the sin, The faithless coldness of the times; Ring out, ring out my mournful rhymes But ring the fuller minstrel in. Ring out false pride in place and blood, The civic slander and the spite; Ring in the love of truth and right, Ring in the common love of good. Ring out old shapes of foul disease; Ring out the narrowing lust of gold; Ring out the thousand wars of old, Ring in the thousand years of peace. Ring in the valiant man and free, The larger heart, the kindlier hand; Ring out the darkness of the land, Ring in the HOPE that is to be. ( I took a little liberty and substituted HOPE for Christ)
  4. Merry Christmas Sillycat, Great news on the Gabapentin, just wonderful. Food for thought in getting a Neurologist onboard as part of the Oncology team. If you've had radiation treatments to your lungs, odds are you'll have thoracic nerve pain. And some of the Platinum based chemotherapy can initiate some pretty mean neuropathy to hands and feet. Thanks.....I would not have gone in that direction, but will keep Neurology info on the shelf for future reference. Also great to hear your infusions have settled and all is as stable as can be expected. We have much to be grateful for as this year comes to a close. To all my online supporters here, thank you and wishing you all a very Merry Christmas and the Happiest AND Healthiest New Year.....we can do this, we are doing this. Take Care, DFK
  5. Happy Holidays Ron, Yes, our new high efficiency washer almost landed in our compost pile....my husband did not like the huge learning curve associated with such little water and twice as long cycles. Good luck on figuring out what works best for you. We've had ours for a year and we still can't get it wired. As I read your post, I was impressed with the detail your radiologist put into it. Broken down, you have your bases covered. And yes, in medical terminology, "grossly" is a very good thing....."flagrantly" or "obviously" are two adjectives that I was taught to substitute for grossly. You're doing good.....congrats. Happy Holidays, DFK
  6. Wonderful news Barb 1260. Now that's a very special Merry Christmas to you. Relish in your good news and enjoy the Holidays. Take Care, DFK
  7. DFK


    Dear Kate7617, Reading your last note I can feel the desperation of your situation. It all sounds so overwhelming. I'll keep you in my prayers as you untangle and prioritize your medical needs. Take good care, DFK
  8. Dx NSCLC August 2018 Stg 3b. RLL Tumor approx 7.5cm x 5.0cm with subcarinal lymph node involvement November to December 2018 Carboplatin/Pemetrexed x3 concurrent with 60Gy Radiation x30 Durvalumab in January 2019 Q2weeks initiated No biomarkers or mutations, 0% PDL CatScan of Chest and Abd completed January 2019 showed 35% shrinkage of tumor with no lymphadenopathy CatScan April 2019 with pneumonitis but with further shrinkage of original tumor CatScan May 2019 with original tumor barely perceptible CatScan of Neck and Chest December 2019: RLL Tumor completely gone, No lymphadenopathy = NED Yes, it is possible and without any biomarkers/mutations while receiving Durvalumab. DFK
  9. DFK


    Kate7617, Lin Wilki just got her a** kicked with some disappointing news on her treatments, but she is determined to stay in the game. After 16 months of treatments that also kicked my a**, I finally got some news yesterday that my all hardships were worth the struggle, I am finally NED. I didn't get from point A to point B alone. I had a team of Doctors, some great, some not so great and a sh*tload of medications to get me to the “NED” line. My two cents of advice: Weigh your options and shoot for the stars. Symptoms of adverse side effects can be managed. Fight Kate, and then fight some more. Prayers for you, take care, DFK
  10. Good Wednesday Morning to all, #24 Infusion yesterday.....uneventful. Labs all normal. Usual annoying side effects present, tolerable and managed with my arsenal. My husband calls my arsenal of potions, my Felix the Cat bag. I had my Neck and Chest Cat Scans two weeks ago. These scan were ordered to rule out any new or existing tumors that may have impinged on my left laryngeal nerve to cause my left vocal cord paralysis. I specifically relayed to my Oncologist and ENT docs that I did NOT want to know the results until my regularly scheduled appt., which was yesterday. I really really wanted to enjoy my Thanksgiving without my "Cancer" taking front and center stage should there be progression. My last chest scan was in May, 7 months ago. Results: Chest: Original Tumor no longer seen, Nodular parenchymal disease has resolved. No gross lesions are identified and no lymphadenopathy by size criteria. Neck: No masses or lesions. Vocal cord paralysis could be due to radiation therapy within the chest for patients known right lung neoplasm and subcarinal lymphadenopathy. In Blessed simple terms: NED. Relief, joy, ecstatic gratitude does not even begin to describe how I felt sitting there in my doctors examining room, where as five minutes before, I braced myself for the worse news ever. Instead, I got the best news in this stage of the game, at the nearing end of my Durvalumab. I inquired as to the possibility of deferring my #25 infusion until January, with the rationale of celebrating the remainder of December without any treatments. My oncologist said YES I MAY. Tears of joy streamed down my face as I hugged this very pragmatic man. I got just a wee bit of a smile from him. Plan is to have my last two infusions in January, followed by a PETSCAN a month after my last infusion. I also dovetailed Cardiologist, Pulmonologist, Radiation Oncologist appts and Echocardiogram of my heart on the day of #26 Infusion. I followup with my ENT in 6 months. Oncologist said my port may be scheduled for removal pending the results of the PETSCAN. And that my dear friends is in a nut shell, my reachable and foreseeable future, the light at the end of the tunnel, a sanguine postscript to the past 16 months. History: Dx August 2018 NSCLC Stg 3b. Carboplatin/premetrexed x3 concurrent with 60 Gy radiation x30 over 6 weeks. Durvalumab initiated 2 weeks after last chemo. Thank YOU all for your support. Take Care, DFK
  11. Good Saturday morning Ron, Nice to hear from you and thanks for chiming in on your personal experience with "Cardiac" concerns and follow thru. I truly believe our banter with our experiences are helping others know they are not alone on this journey and provide some guidance for the uninitiated. There are a few of us here that got CTs recently and are awaiting results. Couldn't of said it better.....hoping for the best. Take Care, DFK
  12. Thanks Tomm for info. I agree completely with the article and pushed my Oncologist (gently nudged) for a Cardiology consult upon completion of my chemo/radiation. I was aware of the risks to my heart with chemo and radiation and wanted to be evaluated by a Cardiologist while I was still in fairly good health. Durvalumab was not on my radar for cardiac adverse side effects. Per classic textbook, 3 months after chemo/radiation, due to radiation pnemonitis and scarring, I developed a rapid heart rate to compensate for my poor oxygenation. I was started on a small dose of Metoprolol, a beta blocker, while my body adjusted to the "new" me. And yes, with my rapid pulse, my BP was higher. All of that is resolved now, 9 months later. My Cardiologist says my heart is just fine and dandy but he sees me every 6 months. I feel secure in knowing should I have any future concerns, he has some history of what my treatments were and how I have been responding to them. Thanks for sharing.....Take Care, DFK
  13. Tomm and Sillycat, Good going on the uneventful infusions. I'm totally down for boring and a tamping of annoying side effects. I suppose a change in your Blood Pressure whether high or low is something you probably want to monitor and bring to the attention of your health care team should it continue to be out of your norm. I know this is plain ole common sense but I also know that if I don't bring up the simplest changes to my MD, it will not be addressed. They're monitoring for catastrophes and I'm paying attention to subtle nuances. I'm no doctor nor expert on Durvalumab but I don't recall any mention of primary cardiac side effects in my readings. I do know that Kidney function and Hormonal Gland changes can affect your Blood Pressure and Durvalumab certainly does have the potential for both Kidney and Hormonal side effects. So yes, I suppose secondary and tertiary high BP's could be a possible Durvalumab side effect. As they say in the biz, monitor for a consistent trend. Thanksgiving was bountiful, blessed to have most of my immediate family living close by. Take Care, DFK
  14. DFK

    Scan Time

    Wishing you the best results with that immunotherapy cocktail and chaser of side effects. I am sending you positive loving thoughts to ease the burden of waiting. We should both get our results from our Scans next week. I had mine done last week and elected to wait the two weeks for my next MD appt. to discuss results. For some strange reason, I am totally ok with waiting. I wanted a drama free Thanksgiving and some time with my family where my cancer wasn’t present and center stage. Take Care, DFK
  15. DFK


    Hi Kate, So sorry to read of your frustrations and having a very rough time of it. I wish I had a magic wand to alleviate you just for one day of this nightmare you have been going thru. Unfortunately, magical thinking doesn't make the harsh reality of what you are facing go away, nor make it any easier for you. But IF I had a magic wand, I would wave it over you now and say, "Be gone misery, allow Kate a moment of peace to get her bearings back, to feel uncompromised and nurtured on her journey." I don't think there's a person here that cannot understand and feel your pain. Like others, I offer you support and prayers to get you thru your day, to give you the strength and fortitude to carry on, wherever that may be, so life doesn’t have to be so hard. I am happy that you have another doctor that you are pleased with, that can give you some answers to your questions, to your concerns and fears, to guide you where you need to be for your best interests. Hugs, DFK
  16. Good Wednesday to all. I am taking a page from Tomm's playbook, Infusion #23 completed yesterday....Uneventful past two weeks, boring with normal labs and no new challenges. YES! Great news on Vocal cord front.....after five days of not talking, I broke loose yesterday and I have my normal voice back. No squeaks, no pitchiness, no raspy breathy or Minnie Mouse voice. I can talk. I am a little hoarse (temporarily expected) from talking but it feels great to be able to communicate without miming or needing a writing tablet. Had CatScans today of chest and neck.....Oncologist said to e-mail him tomorrow for results or I can call him. My next appt is in 2 weeks and I told him I'll wait for the results then. For some odd reason, I just want the next two weeks to be drama free. If results are NED, fantastic, me knowing tomorrow or in two weeks won't change that. If there are concerns on my CatScans, I'd rather enjoy my Thanksgiving and find out later what the concerns may be. Happy Gobble Gobble Day to all,
  17. Niess....laughter in your heart is a magnet for gratitude, blessings and a big fat belly laugh.....and that ain't no jive since we both got dem dere belly fat now! Hugs, DFK
  18. Oh SillyCat, why did I almost spit out my food with hysterical laughter when I read your opening line.....You got a web cam in our living room? Just asking..... I know right, The White Elephant, the reticent step child, the ignored long suffering martyr, us Stage 3’ers. And to add insult to injury, top that off with no biomarkers.....scheesch! Yep, I'm in the game, hoping for a win or another magnificent Nobel Prize game changer. And yes, there is a part of me that feels as if we're teaching our healthcare providers a thing or two about all these new treatments and the new lung cancer. I suppose, not too far back, a Lung Cancer diagnosis was a signed death warrant for the majority. The outliers provided stories rich in hope for survival, but really, statistics do not fib. And sometimes I wonder, how much of this "death sentence" mentality is still carried over with some of our Oncologists despite all the new discoveries in treatments. It was just last week when I very sweetly and cordially invited my Cardiologist to TREAT my darn symptoms even though, he thought them very minor in the scheme of the Big Lung Cancer picture. Nope buddy, you ain't getting off the hook on this one. I have a problem with a symptom that was absent BEFORE my diagnosis, so let’s be a good boy, and compassionately treat me. Thanks Sillycat for your prose....you crack me up. And heck, you can’t even pay for a good giggle and belly laugh....priceless. Take Care, DFK
  19. Niess said, “What gets me is learning to live life with cancer not after cancer.” Truer words were never spoken. Do you realize that those few simple words are probably the key to any sort of "normalcy" we all can expect to have. Learning and adapting to WHAT IS and not WHAT WAS. I have to giggle at times at my naivety when first diagnosed. My Oncologist "threatened" me with a gastric feeding tube if I lost 10% of my body weight. Me being the anal OCD person that I am, I calculated that I could lose up to 13 lbs over the course of treatment. I am 5’7” and I used my 130lbs as a baseline weight. The challenge was on and I figured I had a tough road ahead of me but they did not know who they were dealing with. Side note: I elected to receive all of my treatment and follow up care in another "bigger" city. My husband and I would fly out Monday morning and return home Friday afternoon. We live in a very rural provincial setting, options and choices were limited, resources poor. So anyhoo, to continue with my saga, I am now in this big city with tons of food options. And I totally go for it. Bring on the pork chops with gravy and rice, followed by a coke float with a double scoop of ice cream and a pie to top it all off. I was eating like that 3x/day. I took nausea pills like it was candy, dovetailing Decadron when needed and followed all the recommendations for esophageal hygiene. Prior to all this bingeing, you'd be lucky if I could finish half of my meal. I mean, I was the skinny girl who hardly ate and I was admired for my flexibility doing and sometimes teaching yoga and tai chi classes. I was the health food plant based fanatic.....well not anymore! My missive worked. I did not lose an ounce during treatment and my oncologist couldn’t believe I could still swallow without difficulty. I would almost cry to my Radiologist that I never have eaten so unhealthy. She told me to get over it, do what you gotta do, and I was blessed to be doing so great. Now dear Niess, I am a 154lbs and for the first time in my life I have belly fat. Appears that my stomach stretched and I have developed a late in life love for high caloric carb laden junk foods!!!! And though I complain day in and day out about being so uncomfortable and "heavy", my friends still want to b*tch slap me because I still can pull off a pretty svelte look. My oncologist rolls his eyes when I complain about my weight gain....is it the immunotherapy I ask? My friends answer, "Duh, it's your piggish diet my love". I guess after this long and somewhat light look at life in the Cancer lane, there are moments that are so absurd that you can't but help reflect on how in the world did we get from point A to point B......by just putting one foot in front of the other, or in your case, one poor bruised and sore foot in front of the other. Your decline from diagnosis feels so painful and debilitating but you also state that you can now attend to your basic needs and what the heck woman, you're holding down a job to keep your financial life from collapsing. Girl, I give you so much credit. At this point, you should have a whole cheering section in your corner.....carry on, do what YOU can do, congratulate yourself each and every day for the fight and spunk that you obviously have in you. Those boxing gloves aren't ready to come off yet. Take Care, DFK
  20. Hi Niess, I have Stage 3b Non Small Cell LC. I am 67 years old. I sailed thru chemo and radiation. Usual side effects but very manageable. I was fortunate that I was able to continue with my physical activities of babysitting the grandkids, meeting up with friends for lunches and hikes, and playing music with my seniors group as well as the usual household responsibilities. I think I pushed myself because normality was my denial of reality. Of course, I got a huge dose of reality when my chemo and radiation was over, then it hit me, the fatigue and weakness, and like your heading says so eloquently, plain ole shi##y. I would get so short of breath just taking a few stairs....I was aghast. With the ending of my chemo and radiation, I started Durvalumab immunotherapy, intravenous every two weeks for one year. My last dosing will be this January 2020. So I had to figure out, was my fatigue and weakness post chemo and radiation or the beginning side effects from immunotherapy. I immediately requested a Cardiology consult, another Pulmonology consult and tracked my tolerance doing normal chores and any activity that seemed to crush me. If I could handle 10 minutes of activity one day and 11 the next day, I considered it progress and used that as encouragement that I was making progress. That kept me motivated to keep trying to get back to my prior functional and active level. I plugged away everyday pushing myself. If I didn't push myself, I just plain got depressed and sad and entirely overwhelmed. Bottom line, I will never be the same active person I was before my diagnosis. Chest x-rays have confirmed some scarring post radiation and most likely fibrosis. I just don't oxygenate well. My heart is in good shape but I still get a very high heart rate, in the 140’s with exertion and exercise. I started an exercise program, primarily bike riding. I started out slow (Yes, all of 10 minutes) and increased my riding as I got stronger. 10 months into immunotherapy and 11 months post chemo and radiation, I can meet all my daily responsibilities, lead a very active social life and ride my bike everyday or every other day for at least an hour. I do have to push myself because of my continued fatigue and generalized muscle weakness and poor oxygenation. I rely on Motrin and Tylenol almost everyday to contend with muscle aches and pains. And if I am having a very bad day, I have my “as needed” chill pills to take the edge off of my pity party for one so I can dig myself out of sadness. My arsenal includes drugs, tenacity, addressing and reporting symptoms as soon as they rear their ugly heads so I can continue to be active, and engage as fully as I can. This roller coaster ride ain't no picnic for sure but it's the ride I'm on and I'm trying my best and isn't that all that we can ask of ourselves? Take Care Niess, your journey so far sounds like a really rough one but it also shows how tough you are to have made it this far. Congratulate yourself on your strength and use this forum to ask away for any support you feel you may need guidance in or concerns and questions. This forum has educated me on so many levels and I do feel supported and understood. With Blessings and Gratitude, DFK
  21. Kate7617 Thank you for your updates...... Stage 3b can be such a sticky wicket. I too am 3b and when I did my research and found out Durvalumab %’s for curative goal, I was a little disappointed until my Radiologist Oncologist told me that before Durvalumab, and you had no mutation biomarkers, you had nothing except CRT. She then proceeded to tell me that she has every hope in the world that it would work for me. My oncologist, though very quiet, has expressed the same sentiment, "We are working towards curative". End result may be true or not but it was extremely encouraging and allowed me to move forward despite some of my irritations with Durvalumab. I will be getting #23 this Tuesday. I pray and hope that your second opinion coming up allows answers to your questions and provides you with enough information to best address your concerns and move forward with a treatment plan that best serves you. When healthcare providers throw up barriers to communication and empathy, just keep plugging away. Seems so counterproductive and an entire waste of energy with all that we're contending with but it is our life and we can and will rise above that. Also, you had mentioned that you sent your medical records to MD Anderson. Did anything become of that? Take Care Kate, DFK
  22. Tomm Great news.....keep up the boring. I too have had it pretty easy (comparatively) with minimum side effects and symptoms and am grateful. But I think if you were to ask my oncologist, he would vehemently disagree and might call me the biggest whiner he's ever met. Oh well, if the shoe fits...... Sillycat1957 Good words. I don't think you expressed a single thought that hasn't run through, or more accurately, torpedoed thru our minds. Tis what it is. I have a little Gratitude shelf at my bedside that is filled with miniature knickknacks that some of my fav people and family have gifted to me thru the years. My 3 grandkids are represented by MY LITTLE PONIES (Their choosing); Princess Luna, Princess Celestia and Rainbow Dash and I have painted rocks and beach glass and crystals and agate stones and Mario Helicopter and Luigi Ice Flower, Three Stooges Minatures and more.... just a whole hodgepodge of fond silly memories of when these tokens were given to me. And every night, and every morning I look at my treasures and I say a prayer of gratitude for another beautiful and blessed day. I say thank you for all the love, prayers and blessings that I receive. It does lift my spirits and gives me strength to (as Tom would say) stay the course. Kate7617 You are in my prayers......please reach out and let us know how you are doing and what course if any, you are taking. We all care. Look at the dialogue you provoked ❤️ Take Care All, DFK P.S-Vocal Cord surgery went seamlessly smooth yesterday....thanks to my guardian angels, spiritual and human. Just taking care of this after 6 months of waiting and fretting and worrying has lifted my spirits and actually lowered my stress levels considerably, which in turn has tamped down my chest pains, my throat pains and headaches.....Dear, dear, stress is a horrible victor. I am on 5 days of voice rest, absolutely no talking....WHAT! I will give a full report after my postop check as well as Neck and Chest CatScans to be done on 11/26/19 to check as to why left laryngeal nerve was impinged. Progression is the worse case scenario, or could be a simple nodule, or maybe no determinable reason at all. For some strange reason, I am okay with it all. How apropro that Thanksgiving is right around the bend. I remain optimistic and thankful.
  23. Charles......I like what you said, I like how you said it. You don't mince words and you're keeping it real. I am so totally in favor of expressing every bit of what's going on with our lives, with our bodies with brute honesty. Kate7617's honesty and absolute despondency over her challenges and disappointments are to be commended too. Thank you Kate for expressing what challenges our entire being; physically, emotionally, and spiritually. For it's with our honesty and digging deep that we find out who we are and what will resonate with us and work for us and take us to our goal, whatever that may be. It's a very personal process for sure. Two extremely personal stories from Charles and Kate7617.......thanks to the both of you so much for sharing. I have no doubt you have reached others and provoked insight.....I know you have for me. Take Care all, DFK
  24. Kate7617 I am sorry you have had such a tenuous journey with Durvalumab, and now having to contend with basal cell skin cancer. I am still learning about options and resources but we have some very smart heavy hitters that may be able to chime in and give you some direction. Rower Michelle has drilled in me the importance of biomarkers, have you had that done? She also is a proponent for utilizing resources like the Go2 Foundation for assistance when you have questions. Tom Galli has been around the block and back and is a wealth of information and support. I can offer you my prayers that you find the support and answers you need. Take care, DFK
  25. Yeah, exceptional great news Sillycat...I'll help you sing it from the mountaintops....oops, maybe after my vocal cord surgery! For now, heartfelt hugs of relief for awesome results. We're all bathing in your glorious attitude adjustment to gratitude. Take Care, DFK
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