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Everything 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
  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
  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 ca
  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. Our house smells like cheap frozen pizza cooking in the oven......not a bad smell though. We have had the three grandkids since they closed all the schools.....I can't even recall what it's like to have a luxurious peaceful long cup of Joe....DFK
  7. 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 t
  8. 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
  9. 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.
  10. Great idea though I can't make it for coffee hour this morn.....all the best for your virtual roundtable DFK
  11. 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
  12. 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 N
  13. 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 annoyan
  14. Good one Tomm......love it.🤪 DFK
  15. 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
  16. Hey Barb, Wallow in the NED news....so gawd darn awesome. Confirmed, confirmed, confirmed! Did I mention confirmed? Have an uneventful #22, and continue walking on sunshine. Take Care, DFK
  17. 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, follo
  18. 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.
  19. 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 wor
  20. 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
  21. 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 a
  22. 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" St
  23. 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 y
  24. 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
  25. Kate 7617- You had mentioned once before my optimism and I appreciated the compliment. I don't know if it's my optimism or plain old stubbornness that has gotten me this far in life.....But I do soldier on in the face of adversity and tackle each problem individually as best I can, as best as the resources available affords me. That is really all we can do. When diagnosed, I studied the standards of care and knew that I was among the droves who would get Chemo-radiation followed by Durvalumab. What I did NOT understand was all the twists and turns that came from that simple treatment plan. Nai
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