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DFK

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Posts posted by DFK

  1. Good to hear from you too Opal and congrats on your 2+ years from diagnosis....and to see Bridget and Grahame posting, it's like old times again. I so remember being lost in an ocean of questions and fear when I happened upon Lungevity. We were the pioneers, embarking on this very new immunotherapy drug. We learned along with our physicians and us Durva's picked each other up when we needed picking up and carried others when we could. We weathered the calm seas as well as the oceans squalls. That's one thing I remember so vividly, that time marches onward no matter what the day presented, and that one month easily turned into three and five and eight and then the twelve months were over. For those still on the Durvalumab train, know that there were others before you that had the same questions, and fears and annoying and sometimes debilitating symptoms. But also know that we are your inspiration for a life beyond Lung Cancer......

     

    Hello to Tomm, I still love your one liners, I bow down to you OH MASTER OF GIGGLES, to Tom Galli for his eternal and non ending support, Do you ever sleep? and Rower Michelle for her spunk and humor and "let's get it done" Jersey girl attitude, I want you in my corner!!!!, Happy Birthday Ron, and like Opal said, many, many, mucho more to come, Roseann, you go girl, good to see you're still slugging away, admirable fortitude, I'm impressed....and Barb1260, My doc said the same thing when I was done, "Get out of here and go live your life". How blessed we are to be able to do that.....strong words that meant the world to me. Opal, your gentle and Gaman spirit comes thru loud and clear in your postings. You are loved.

    And to the newcomers that I haven't met, you're in great hands. Carry on

    Blessings, DFK

    *Gaman (Japanese)-"enduring the seemingly unbearable with patience and dignity". The term is generally translated as "perseverance", "patience", or tolerance.

  2. Oh my gosh, what an awesome "alert" I received this morning.....way to go Ron, congratulations. I do remember how devastating it was for you to get yanked from Durvalumab and the rigors you went thru to be in the Alk+ targeted therapy club. Awesome to get an update, and a miraculously beautiful update at that. I have been MIA from Lungevity, living life full and robustly well (my doctors words, not mine) and like everyone else, having my medical dance card emptied and fairly blank in this Covid environment. This month marks my 2 year anniversary since diagnosis of NSCLC Stg 3b and I'm 7 months out from completing my year of Durvalumab. Last Cat Scan in May, NED. And though I have been gifted with NED throughout my journey, like the ghosts of Christmas past and Christmas future, the memory of what was, and the haunting of what could be, is never far, always present as a reminder of my membership in the club no one wants to be a member of. I have learned to live with these hauntings, as a gift, to enjoy every blessed moment, to the best of my ability. Wishing everyone another step towards health, love and happiness.

    Blessings, DFK

  3. Hi Shane,

    I know of Home Care Agencies that do administer chemotherapy at home. The nurses are certified oncology nurses (OCN) with special training. Patients are screened for eligibility. Also, only certain chemotherapy drugs are eligible. There are some chemo drugs that are administered via an IV pump in the home. You may want to talk to your physician to see if it is available in your area and if your father would be an appropriate candidate. 
     

    Take Care, DFK

  4. Hey Roseann,

    Good to hear from you and awesome that you're done with #15 and tolerating it...WoooooHoooo. That is grand. Your T3 and T4 levels will let your doctor know if your slightly elevated TSH will warrant concern and meds. Let's hope not and it's a fluke. My liver tests skyrocketed for a month and my doctor told me to lay off the booze. Like what? I rarely drink and certainly not with all these drugs coursing thru my body. Then the next month, I was all normal again. Let's hope yours is a fluke too. If not, at least it was caught early and there are meds to address it.

    Take care, good to hear from you, DFK

  5. You're killin' me.....Margherita cooked in a wood stove with garlic knots on the side and a cold draft....OMG! Best one I ever had in Golden Colorado.....to die for.

    Making shrimp pasta salad with toasted garlic sour dough bread for me and the old man, kids get meatloaf and mash potatoes with peas (boring).......DFK

  6. Good Tuesday to All,

    Been thinking about our Durvies here still on their year long protocol, knowing that you are experiencing the challenges of COVID-19 and all subsequent events. In addition to our cancer you/I/we are now juggling doctor appointments and scheduling nightmares for procedures. I just had all my MD follow-up appointments cancelled thru the end of April as well as my 3 month CatScan, and my 6 week port flush that I extended by two weeks, is now on hold till mid May.....and I'm totally okay with all of that. But I'm not okay with any cancer patient having to defer on their treatments. So far I have not heard of any cancer treatments(Chemo/Immunotherapy/Radiation) being postponed. I have heard that some clinical trials have been stopped in lieu of prioritizing utilization of medical staffing and supplies. 

    This too will pass but who needs the added emotional and mental stress of thinking any deferment of treatments may be adding the proverbial "another nail to the coffin". I have always said the mind is a horrible victor.....but as long as we know this, our strength and fortitude and hope trumps the alley ways of our mind that will stray to that dark place.

    Barb-I think it does get better in time waiting for these test results. At some point, the "what if's leave us" and our worries are mostly about adjusting to our future should we have to take that route. Our knowledge base has made us just a tad more resilient. I'm impressed with your back to work year anniversary. I was retired when my sh*t hit the fan so I was able to wallow 24/7 in my cancer and focus, focus, focus. I'm in admiration of you. Good luck on #23. So close....I'm cheering you on.

    Babs-Congrats on finishing #10. The white coat Hypertension is now replaced by the COVID-19 Hypertension? Totally understandable. For what it's worth, my Oncologist, knowing that I was tolerating my Durvalumab treatments, did tell me I could defer on one treatment if I wanted to extend my vacation with my son. He told me that Durvalumab would take 16 weeks to reach a therapeutic level and that it's half life was 17 days and if I missed one treatment, it would not effect efficacy. I did not take him up on it since my pneumonitis made that decision for me. I missed one treatment midway of the 26 doses and it did not seem to matter as the end result was NED. Carry on.

    Grahame-Let us know the results of your discussion with your MD on both continuing Durvalumab and Prednisone usage. I know some have been receiving their Durvalumab with 5mg Prednisone daily to squash those side effects that went from annoying to intolerable. The 5mg seems to have made the difference in continuing rather than discontinuing.

    So now that my thoughts have been transferred from my NSCLC to Toilet Paper inventory, I wish you all a very pleasant day.

    Phew, I'm so relieved:

     

    Covid.jpg

  7. Polly,

    How different it must be to have that kind of quiet, especially near Times Square. I'm glad to hear that your treatments have not been interrupted because of the social distancing and preventive measures they have put in place at most Health Care Facilities. Take care, be safe and aware....DFK

  8. Hi Polly,

    Great news on left mass and nodule shrinkage. Exactly what effective radiation and chemo are targeted to do.

    I also echo Michelle's advice, report your shortness of breath if it is sustained. You know your body better than anyone else and those little nigglings is what needs to be reported. The timing of the initiation of Durvalumab and completion of radiation makes you a prime candidate for possible pneumonitis.

    I started to report my shortness of breath and compensatory increased heart rate a month after completion of chemo/ radiation and at the start of Durvalumab. I was diagnosed with pneumonitis 3 months later after being bounced from Cardiologist to Pulmonologist and after another Pumonary Function Test and chest x-ray and CT scan......and I was told it was caught early!!!!! How much more damage would my lungs have sustained had I not consistently reported my symptoms and pushed for consultations. Part of my problem in reporting my symptoms was that I did not look in distress and was not taken seriously, but I pushed and all the tests that took me a couple months to complete all pointed to pneumonitis. 

    You're doing great.....a good attitude, some basic knowledge with two uneventful infusions.....you're on your way. 
     

    Take Care, DFK

  9. Dear WC,

    The future is in the hands of my body......I'm no atheist but if my body fails me, I will die. I am a biological being and entropy is inevitable. I am alive 18 months with treatment and have lived joyously with gratitude every waking moment. And as long as treatment allows me to be a happy and functioning human being, I will opt for treatment to prolong my life, to prevent my body from failing and succumbing to my Cancer. Should my Cancer not respond to treatment and death is inevitable, I will not prolong any delusion or suffering and hopefully will have the wherewithal to stop all treatment and die as I have lived, with grace and gratitude.

    Though my children and grandchildren are loved and enjoyed, they are not the primary reason I chose treatment. I chose treatment for me, so I can continue to enjoy my life, which I do immensely.

    That's my two cents.

    Take Care, DFK.

     

  10. Hi Guicho,

    Sorry you have to be here but glad you found us and welcome to an online support group. I hope that this forum will provide you with any answers to your questions or concerns. It's a very tough road to be on and we have all been there in some form or another.. 

     I lived in Imperial Beach/Egger Highlands so I am a little familiar with the San Diego area. I still visit the area frequently as my son lives there. I have Scripps MD Anderson in La Jolla as a backup should I need care. I was diagnosed in August of 2018 with Stg 3 NSCLC (Adenocarcinoma).

    Your oncologist and Nurse navigator should be able to refer you to a support group in your area. You can also post your concerns and questions here on Lungevity. 

    It's very good to hear that your cough has decreased and that you are sleeping better. Do you have any specific questions about your care, about your cancer, about your medications, about finances, about any side effects you may be experiencing?

    Hope to hear back from you soon.

    Take Care, DFK

     

  11. Tomm-Excellent on #23. The countdown is on and your finish line is just around the corner. Opal and I have crossed the finish line with NED.....and speaking for myself.....the fatigue is gone and the wonkyness of the Durvalumab coursing thru my veins are gone. My stamina and endurance have improved and I find it mentally and emotionally refreshing to not have to plan another visit for another infusion. In a lot of ways, I feel I have gained back the normality in my life.

    Now with the Covid-19 on our heels, another annoyance to contend with but being NED makes it just that, another annoyance like a pesky mosquito. Due diligence will get us thru this "crisis", the same due diligence, intelligence and fortitude that got us thru Durvalumab. 

    Today I officially cancelled our trip to the Pacific Northwest. We did good as no losses were incurred except for a teeny tiny smidgen of disappointment for our celebratory end of treatment indulgence. No biggie, there will be time later for celebration.

    Grahame-You are on your way, though at the beginning of your journey. I hope that those of us who have traveled your road provides you with inspiration to keep putting one foot in front of the other, and to use this forum to support you, educate you and get you to the finish line. With your background, you are fortunate to have a huge knowledge base to address your symptoms. I think Tomm said it best, a lot of the annoyances (side effects) was and is part of the price in (hopefully) extending our overall survival and halting progression. Hope is omnipresent.

    Take Care, Blessings, DFK

    Did you hear about the man who fell in an upholstery factory? He is said to be fully recovered.

  12. Kate,

    How wonderful to read of another confirmed NED sans Durvalumab, how totally cool AND awesome is that......We're fortunate to be walking on sunshine. Tomm we need a quip apropro for the wonderful news.

    Happy me, DFK


  13. Hi everyone, Good Tuesday,

    Good dialogue on PetScans, CatScans and insurance barriers. For what it's worth, my Oncologist did a total of 4 CatScans during diagnosis, chemo radiation and Durvalumab over the course of 17 months. Got a Pet Scan a month after my completion of Durvalumab. When I asked about MD preference for Cat scans versus Pet Scans, he said CatScans provide a more detailed cross section of tissues and organs. If I'm not mistaken my last PETSCAN was a combination Pet and CT done simultaneously. This was different at diagnosis where I had a CatScan to confirm the tumor, followed by a Pet Scan to confirm biological activity.

    Barb-I was told I was NED when there was nothing on my CatScan except scar tissue/fibrosis where once I had a large mass. I'm guessing those radiologists can differentiate. Hopefully, you'll get the answers to your questions when you have a one on one talk with your MD. Then you can tell us their take on it all.  I remember my ENT wanted a PET Scan to rule out tumors in my neck and my Oncologist said nope, a CatScan would be more definitive. 

    Just of note and an FYI

    My community music group frequently plays for hospitals, nursing homes, assisted living facilities etc. Today, a memo came down from the County to all healthcare facilities, "No more community outreach visits". This is in response to the COVID-19. Of course, they forgot to tell our group and we showed up to perform anyway.....all went well and we didn't get kicked off the property!

    Take Care, DFK

    I used to be indecisive. Now I'm not sure.

  14. Georgia,

    Good to hear your husband has found an agreeable solution to his chest skin discomfort with Excedrin. Sounds like an easy fix. Great. Please share your topical solution.

    About your experience in keeping your husband's diagnosis close to the vest, and disclosing it to a select few......interesting. I suppose you never really know how someone will respond, do you, once you let the cat out of the bag. I elected to keep my diagnosis within my nuclear family, and yes, also to one good friend who I've know since grade school, because I wanted to keep my focus and energy on me. 
     

    Take Care, DFK

  15. Welcome Babs,

    Tomm did a a great job of covering side effects with you. My muscle aches and joint pains, headaches and back pain lasted thru out my year of Durvalumab......it was something I was able to live with with the aid of Ibuprofen 800mg and Tylenol ES. My symptoms never escalated to a point where I felt it needed more than my OTC analgesics. My thyroid levels were fine but I did experience fatigue and a lack of stamina and endurance. It helped that I continued being active and I tried to get in some "formal" exercise at least every other day. I never felt that it got better or worse as time went on with Durvalumab...it was just always there, reminding me that I do have some limitations. 

    I will also echo Tomm's recommendation of drinking water and lots of it if you don't have any fluid restrictions.

    Congratulations on having your original tumor delegated to being scar tissue. How freaken awesome is that!!!

    Take Care, DFK

    I'm taking care of my procrastination issues. Just you wait and see.

  16. Good Sunday Morning to all,

    A philosophical post this morn......a little sadness, a little spiritual joy, intermingled with this journey called life. Allow me this time, with words, to express what is on my mind. The Durvies know me, so it is here where I will post and release the "Cracken" of my thoughts. It's also dedicated to Rower Michelle and Eagle 13.....read on. 

    Recently, my bff of some 50+ years lost his partner Bill of 35 years, to cancer. They were gay and during the turbulent years of the 80's with HIV, panic and fear made them hide their sexuality, their coupling. It was a difficult time, the 1980's, as beautiful young men and women were dying in droves and there seemed to be no end or resolution to the HIV virus and crisis.

    At the time, I was doing home health nursing in Hawaii. It was not unusual for gay couples to bring their entourage of friends with one dying friend to celebrate their last days in paradise. I was the nurse who went out to their luxurious vacation homes or condominiums on the beach, infused their "HIV" medications and gave them new IV packs of morphine to control their pain. 

    I was tasked with visiting my HIV patients on an 8am-4pm schedule. Receiving the HIV infusions usually ruined the rest of the day for my patients so there were times when I broke the rules and would schedule a visit at night to allow my patients a "free" day of vacationing. Of course these night time visits included some blackmail as in providing me with a delicious home cooked meal or a nice new haircut and do, followed by a mai tai or two. Despite all this sadness around dying, you try to find some light and humanity.

    Bill and my friend were not high risk and they weathered the HIV storm and lived a good life until Bill's diagnosis of Cancer. He passed within 18 months of diagnosis. Those 18 months were pure hell for my friend the caregiver and Bill, the patient. Bill was in treatment, suffered thru numerous hospitalizations and indignities. In came the hospital bed and wheelchair and daily dressing changes and doctor visits and social workers pushing to Hospice and hurried doctors. A world turned upside down. 

    I asked my friend how I could help and he denied needing any help, he was taking care of business. His emotional grief was held at bay In lieu of pragmatic necessities and I honored his request. 

    Last night I learned of Opal's  (our fellow Durvie) husbands passing last week Sunday. His body had succumbed after four years of living with Pancreatic Cancer. It got me thinking (as you can tell) about a myriad of things. Most of all, I thought about how much Opal has to contend with and it made me sad. Like the sadness I felt caring for so many HIV patients and my friend who cared for Bill. You are able to help the patient as their needs are direct and most times, solvable. But my feeling of helplessness and empathy to help those that are left behind stay with me, ever present.

    We all know how much processing has to take place, the utter shock, the waves of grief, a new life to navigate. Somehow, our friends and family navigate thru all the challenges and like Cancer, our lives are never quite the same. And like cancer, it's a solo journey of navigating thru OUR uncharted waters. 

    Thank you Opal for trusting me with your heart, your feelings and inviting me into your canoe. You will do almost all of the paddling alone,  but you know you have a team that will be there as you steer, guiding and supporting you on your new journey. You are loved.

    Let me also relay that Opal's last scan was reported as stable, next check in 3 months.

    Take Care, DFK


     

     

  17. Hey Lin,

    At least you didn't ask your oncologist for a neurology consult to have a lobotomy.....I did and it was in jest, but I truly was up to my eyeballs in WTF moments. Enough of them and any sane person with warm red blood running thru their veins wants to tap out. ENOUGH ALREADY of the uncertainty, of the annoying pains, infusions, of the labs and scans and medical interventions. I totally get it. But I also know, somewhere in the deep recesses of my being, that in time, a wave of hope and joy enters my life and I reboot. The ups and downs we can expect as part of this C hand we've been dealt. Hang tight, enjoy those grandbabies and do your best, that's all we can ask of ourselves.

    Take Care, DFK

     

  18. Hi Polly,

    Nice to hear from you again and congratulations on receiving your first dose and knowing that so far, so good, your nodules are heading in the right direction....to nothingness. And that is an awesome thing. Please know how fortuitous it is to see that kind of shrinkage in your nodules. 

    I always kept a journal of sorts, brevity kept it going since I was diagnosed in August of 2018. I would do little notes daily as in, a little short of breath going up stairs, or a good day today, able to do all housework, or bad headache today. It helped me to track for any consistencies and changes in my status. 

    Talk to your MD about your shortness of breath if it is consistent. You may be having a response from the chemo and radiation or a reaction to the Durvalumab. Or it may be intermittent physiological response depending on your level of activity, anxiety if present or a myraid of other factors in the "who knows why" category. To me the key is to monitor when it happens and trend for consistencies. When you do talk with the doctor, you'll have some information that he or she can use to make a determination of how to help you.

    Again congrats, you've made it to Durvalumab and everyday is bringing you closer to our common goal of nodule nothingness

    Take Care, Blessings, DFK

     

  19. I really don't know the correct term Wes, but I think it would be fair to update your family with exactly what has transpired and what you had said in your previous posting, "She had three cycles (Infusions) of chemotherapy in Jan-Feb followed by a PETSCAN. Based on results of the Pet Scan, the doctors ordered another 4 cycles of chemotherapy. The PETSCAN showed______________________________, therefore, the added chemotherapy is to ______________________________________. We are quickly learning that her cancer care is fluid and may change according to her responses to the chemotherapy"

    Start there????? 

    Good Luck

    Take Care, Blessings, DFK

  20. Hi Wes,

    I've spent 30 years in the health field and terminology has changed and been substituted for the same darn thing. It depends on where you work and what the climate is in whatever department you may work in. I've worked on the East Coast and West Coast in ICU, CCU and ER and never ceased to amaze me how I had to ask for clarification on what was being said and what was being ordered by the Physicians, so don't feel lost.
     

    So here's my take:

    Treatment usually refers in general to your "Plan of Care". This entails everything that has been coordinated and ordered to get you to  "their" goal. Your treatment may include chemo, radiation, Durvalumab and symptom management etc. Your treatments will change according to your needs. 

    Cycle or Course are interchangeable and usually refers to your wife’s infusions. Cycle refers to one sitting (course) of whatever chemotherapy has been ordered. In your wife's case, the Cisplatin and Alimta. So you may have heard she will have three cycles of Cisplatin and Alimta three weeks apart. Or you may have heard she will have three courses of Cisplatin and Alimta three weeks apart. 
     

    Your best bet is to do like I did and ask for clarification if you don't quite understand what your wife"s treatment plan entails.

    As you know, there are standards of care for every diagnosis and most Cancer Centers refer to the NCCN standards of care and practice. www.nccn.org    ( National Cancer Center Network) Those are guidelines to be followed but not necessarily always adhered to. If I felt my Oncologist was way off base on following some of the guidelines, I asked him why and he always had sound reasoning behind his decisions. It's important to have a comfortable and trusting relationship with your Oncologist. Mine rarely uttered a word but when queried about any concerns I may have had, he was extremely pragmatic with a sound and justifiable explanation. 

    Good Luck Brian

    Come join us on the Durvalumab forum.

    Take Care, Blessings, DFK

     

  21. Kate7617-How could you not be Irish with your fiery red hair and a maiden's name like Kate. Sounds like you got your boxing gloves back on.....a prayer jab to the right and a prayer upper cut to the left. You got this covered.

    Take good Care, Blessings, DFK

     

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