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DFK

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  1. Like
    DFK got a reaction from JamesB in Nerves   
    Hey Lin,
    Not to get all sappy and stuff but when I'm fortunate to have my little darlings over for a sleepover, they're 8, 7 and 5, and as I tuck them into bed, I always make them "wish upon a star." After all our wishes are made, we sing the chorus together as the wind up music box plays. They usually keep their wishes a secret but sometimes we all vote to share our wishes. I always tell them that I wish to be around for them for a long, long time so we can always make wishes together and sing about it.
    There is no doubt in my mind that those little angelic voices singing, WHEN YOU WISH UPON A STAR, MAKES NO DIFFERENCE WHO YOU ARE, ANYTHING YOUR HEART DESIRES, WILL COME TO YOU has calmed my nerves and has given me hope every single day.....You gotta believe! I know you do. We both have scans coming up to show the efficacy of our treatments......it will be good for the both of us. 
    Take Care, DFK
  2. Like
    DFK got a reaction from JamesB in Hopeful, confused and sometimes pissed off   
    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
  3. Like
    DFK got a reaction from Opal in Durvalumab   
    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.
  4. Like
    DFK got a reaction from BridgetO in Durvalumab   
    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.
  5. Like
    DFK got a reaction from Tom Galli in Durvalumab   
    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.
  6. Like
    DFK got a reaction from GaryG in Durvalumab   
    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.
  7. Like
    DFK got a reaction from RonH in Durvalumab   
    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.
  8. Like
    DFK reacted to Opal in Durvalumab   
    Ron- so glad you checked in and with great scan result news!  Congrats! So good hearing from you. Happy 64th and wish you many many many more!
    DFK-  good hearing from you as well. April was my 2 yr diagnosis anniversary. All is well. 
    Opal
     
  9. Like
    DFK got a reaction from Opal in Durvalumab   
    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
  10. Like
    DFK reacted to Grahame Jelley in Durvalumab   
    Thanks for sharing. Inspiring and aspirational story. Stage 3b and halfway through 26 projected Durvulamab course. Last scan 3 months ago and another planned but not yet scheduled . 50% shrinkage of Primary lung and nodes not remarkable upon it seems 
    blessed that side effects been minimal though recent weeks mildly intrusive muscle and small joint pains . 12 months since unexpected diagnosis and excited to have beaten the 8 month survival odds to be able to walk my daughter down isle on 22ndAugust. It seemed such a far away goal at diagnosis and yet here we are with a positive future based on all your reported successes
     
    kia kaha from New Zealand .Remain strong , positive and eyes on the future possibilities 
     
    Grahame 
  11. Like
    DFK got a reaction from Rower Michelle in Durvalumab   
    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
  12. Like
    DFK got a reaction from Tom Galli in Durvalumab   
    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
  13. Like
    DFK got a reaction from Tomm in Durvalumab   
    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
  14. Like
    DFK got a reaction from RonH in Durvalumab   
    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
  15. 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
     
  16. 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
  17. 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
  18. 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
  19. 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 
  20. 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
  21. 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
  22. 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:
     

  23. 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
     
  24. 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
  25. 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
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