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DFK

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Posts posted by DFK

  1. 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

     

  2. 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.

  3. 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

     

     

  4. 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

  5. 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

  6. 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

  7. 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

     

  8. 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)

  9. 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

  10. 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

     

  11. 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

  12. 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

     

  13. 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

     

  14. 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

  15. 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, 

    image.jpeg.cd619cba7ced057318ff80926ee05b1a.jpeg

     

     

     

  16. 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

  17. 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

  18. 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.

  19. 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

  20. 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

     

  21. 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

  22. Good Tuesday Everyone

    Just wondering andtying up loose ends

    Sillycat-Been praying for good results on your scan results and MD appt.I know it was on Monday.

    Barb-I guess you got some Marching orders to keep pleuritis at bay or minimalized at best. Hang tight, stay inspired and know we are all on the same train traveling to the same goal.....Woot, woot!

    Darla- I have decided to do the injection as my ENT surgeon felt this would best address my paralysis. It is minimally invasive and hopefully will allow me to get volume to my voice and resolve my throat pain/irritation. This is the procedure I am having in a nutshell.

    Laryngoscopy and vocal cord injection is performed to address a paralyzed vocal cord. This procedure "plumps up" the paralyzed and atrophied vocal cord to allow the opposite vocal cord to come in contact with the paralyzed vocal cord during speech, coughing and swallowing. This generally will improve the voice and prevent secretions and swallowed liquids from going into the trachea (wind pipe). This will allow the patient to more effectively clear secretions from the airway and help prevent aspiration pneumonia. Under general anesthesia, a scope is gently inserted into the throat through the mouth. A telescope or microscope and long, fine instruments are used to reach the vocal cord. Vocal cord injection is generally performed on an outpatient basis. If you have medical conditions such as sleep apnea or bleeding disorders your surgeon may insist that you spend one night in the hospital for observation. Hospital admission may be required if excess bleeding or swelling are encountered during the procedure .

    Your pain and repeated aspirations are troublesome and I sense you do not have a good sense of why your physicians are "waiting" to address your issues. Is there anyone else you can confide in to alleviate your concerns and give you a clearer picture of what exactly your problem is and what can be done to mediate your discomfort?...your PCP perhaps? 

    Take Care all....Blessings and Gratitude, DFK


     

  23. Good Saturday to all,

    Just had to chime in to the banter......

    Charles and SillyCat on your take of Durvalumab annoyances:

    For me it's been one of those weeks. I try really really hard to put a positive spin on being grateful for "all that is before me" but sometimes, nothing I say to myself takes away the misery of my aches and pains and how detoured my life has become. I had to giggle SillyCat on you needing an attitude adjustment......nice way of putting how fatigued you are with all that you are going thru.....it's ain't no picnic no matter what rose colored glasses we put on. So thanks Charles and SillyCat for keeping it real....it made me laugh and that is always a very good thing.

    Barb

    Darn, can’t you catch a decent break....great that you’re back on the infusions but a sinus infection? Take care of yourself and wishing you a speedy recovery.

    Take Care all, DFK

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