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DFK

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  1. Like
    DFK got a reaction from RonH in What is a "round"?   
    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
     
  2. Like
    DFK got a reaction from Tom Galli in Durvalumab   
    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
  3. Like
    DFK got a reaction from Shane18 in Stage IIIA with PD-L1 >50% treatment in Covid-19 world   
    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. Like
    DFK reacted to RonH in Durvalumab   
    Roseann,
    Keep after them on the TSH (and the T3 & T4) tests. After 5 months of complaining about shortness of breath and fatigue while on Durva, my ONC finally tested my T4 and TSH. My T4 was down to 3.4 (normal range 4.9 - 12.9) and my TSH was up to 44.03 (normal range 0.178 to 4.53). Needless to say I was not a happy camper for not being tested sooner. The ONC has been slowly (and I do mean slowly) increasing my thyroid meds starting at 50mcg per day and working its way up over the past 10 months to 150 mcg. Just had another TSH test two weeks ago and my TSH was still at 18.6 although the ONC says my T4 was about normal (not 100% sure that I believe him as I do not see any T4 test results in the lab report, but the free thyroxine index was about normal). He however did bump up my Tirosint dose to 175mcg per day. Of course I had just received a 3 month supply of the 150mcg capsules, so we agreed to just be prescribed 90 days of 25mcg capsules to supplement the 150's figuring that was the economical thing to do. Of course that confused the hell out of ExpressScripts who promptly put a hold on the prescription and didn't bother to contact anyone. Online it said that they were processing the prescription and to check back in 24 hours. I checked daily for 1 week only to find out that was BS, it was really on hold as I found out this week. I feel a little sorry for the customer service rep and their pharmacist that I finally spoke with after being on hold for 45 minutes and explaining the situation 3 times before they comprehended that 150 + 25 = 175, and that I was saving them money. Then being told that I could go get it filled quicker at the local pharmacy was the final straw. My response was "so ExpressScripts is officially recommending that an insured customer with advanced lung cancer who is already respiratory compromised go stand in line at a crowded retail pharmacy in a state with stay at home orders in the mist of the COVID-19 pandemic?" Needless to say, my prescription is being express delivered to me tomorrow.
    There are some very fine medical professionals out there, but you have to advocate for yourself and keep an eye on what is happening.
    -Ron
  5. Like
    DFK reacted to PShsy in Durvalumab   
    Hi everyone,
    Quick question about zinc supplements and durva? Are they compatible?  I asked doc about vitamin C and she told me don’t take any vitamin c supplements. 
    Ron H and Grahame, 
    i took some prednisone.... my sister has acute asthma and my chest is feeling better. 
    Polly 
  6. Like
    DFK reacted to Sillycat1957 in Durvalumab   
    Thanks for you input Ron H and DFK, my Oncologist ran the T3 and T4 tests and they both came back within normal range. Yay! I checked the labs myself. I will put in a call to my Primary Dr to make sure I don't need to start any meds, I've had Thyroid issues a few times in the past. Heaven knows I don't want to take another dang pill but we do what we gotta do right LOL!
    Dang Ron, don't you just love these idiots! I'm happy to hear you are going to get your meds, too bad you had to put up a fuss and have a hissy fit and all that!
    Wishing everyone well!
    Roseann
  7. Like
    DFK got a reaction from Sillycat1957 in Durvalumab   
    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
  8. Like
    DFK got a reaction from Sillycat1957 in Durvalumab   
    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:
     

  9. Haha
    DFK got a reaction from KatieB in Coffee Break week of 3/23   
    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
     
  10. Like
    DFK got a reaction from Tom Galli in Durvalumab   
    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
  11. Like
    DFK got a reaction from Tom Galli in Coffee Break week of 3/23   
    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
  12. Like
    DFK got a reaction from RonH in Durvalumab   
    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:
     

  13. Like
    DFK got a reaction from Steff in Coffee Break week of 3/23   
    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
  14. Like
    DFK got a reaction from Steff in Coffee Break week of 3/23   
    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
     
  15. Like
    DFK got a reaction from Tom Galli in Coffee Break week of 3/23   
    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
     
  16. Like
    DFK got a reaction from Tom Galli in Durvalumab   
    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:
     

  17. Like
    DFK got a reaction from PShsy in Durvalumab   
    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:
     

  18. Like
    DFK got a reaction from Barb1260 in Durvalumab   
    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:
     

  19. Like
    DFK reacted to Kate7617 in Durvalumab   
    Well I do not know how much the Durva came into play for me, I only had 5 infusions of it, and that sent my health into a downward spiral, but happy day today clear scan and I am on cloud 9! Thank you for all the good vibes and words of encouragement, I am grateful, Kate
  20. Like
    DFK reacted to Kate7617 in Durvalumab   
    Please check your PDL1 and make sure no auto immune disease is in family history, being your own advocate is worth it's weight in gold! Good luck and hoping for a NED for you! Wash hands frequently and don't touch your face is my advise for all of us! Kate
  21. Like
    DFK reacted to Kate7617 in Durvalumab   
    Great news! NED is on our side, keep on keeping on and enjoy your loved ones daily! Kate
  22. Like
    DFK reacted to Grahame Jelley in Durvalumab   
    Thanks DFK 
    your optimism is contagious. Let’s just replace Covid19 with your contagion 
    Grahame
  23. Like
    DFK reacted to Sillycat1957 in Durvalumab   
    Hi, just catching up on posts, I worked in the Insurance field, and yes they will deny deny deny, you just have to keep after them like a barking dog! Unfortunately =( until you get the right person and you will get approved. Rule of thumb was deny 3 times before approval, made no sense then, but that's how they did it. I had a headache everyday, getting people approved in the mental health field. I'm sure it's the same in the medical field as well.
  24. Like
    DFK reacted to Barb1260 in Durvalumab   
    Thanks Tom. CT next week, fingers crossed. 
  25. Like
    DFK reacted to Steff in Durvalumab   
    Barb - congrats on NED! Who knew scar tissue would be something to celebrate! lol
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