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Sillycat1957

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  1. Like
    Sillycat1957 got a reaction from Rower Michelle in Durvalumab   
    Hi Lisa66,
    Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm.
    So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey!
    Take care, have a great weekend, stay safe 😃
    I don't know any cool jokes like Tomm
    "keep your face to the sunshine and you cannot see a shadow"
    Namaste, Roseann
  2. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Hi Lisa66,
    Welcome to our club! I've been a luker for some time, I just had #18 I'm feeling a little blah, but somewhat optimistic! I had my 9 months CT Scan and my tumor is now down to a mere 8mm.
    So yay me! Everytime I think no way I hate this treatment, it's not working why am I torturing myself! I get good news. Then I change my attitude. So just know that we here have been thru things that you will probably experience, so be sure to check in. I wish you well on your journey!
    Take care, have a great weekend, stay safe 😃
    I don't know any cool jokes like Tomm
    "keep your face to the sunshine and you cannot see a shadow"
    Namaste, Roseann
  3. Like
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    Well it’s finally here. I’m so excited for #26 tomorrow. I’m hoping that in a few weeks/months I will feel almost normal with no chemical induced side effects?  Ready for a much needed break. I only wish I could take a vacation. 
  4. Like
    Sillycat1957 reacted to Rower Michelle in Durvalumab   
    Hey Ron- 
    You’re down but definitely not out!  We have ALK which is so rare the docs don’t see a lot of us which makes it an outlier they really don’t know what to do with us.   Sorry for all those extra diagnostics and it does sound like the targeted therapy is doing the job.   @Tom Galli got it right.  You gotta stay the course!   Hang in there buddy.  We’re all pulling for you! 
    Michelle
  5. Like
    Sillycat1957 reacted to Opal in Durvalumab   
    Barb, way to go! One and done!! 
    I know exactly how you're feeling about getting done. It is strange after so many appointments, treatments and scans...always something to keep it in check and now only scans every 3 months. Can be a little scary. It seems to always be in the back of my mind until I forget about it. Then I try to be normal, the old me again.  I try and remind myself anxiety is not good for the immune system. It CAN make you sick.
    I don't agree with you on the rear ugly head part. That's not a given. Yes, we hear about reoccurrence but I also heard of survivors who had only one go round and are living long lives. I prefer to keep that in mind. 
    So for now Jersey Girl, let it go and enjoy your new found freedom. 
    Opal
  6. Confused
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    Hello all. 25 down, 1 to go. Blood work good. No strange side effects. I’m starting to get very anxious about what happens after. Just scans until it decides to rear it’s ugly head?  I’m not sure what to expect. Anybody have any thoughts?
  7. Thanks
    Sillycat1957 got a reaction from RonH in Durvalumab   
    Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
    Take care Roseann
  8. Like
    Sillycat1957 got a reaction from Opal in Durvalumab   
    Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
    Take care Roseann
  9. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Geez Ron, sorry to hear about all the stuff you have to endure! I am sitting here getting my 17th infusion of Durvalumab, masks are a must before we come into the cancer center. No problems for me just low potassium right now 🤔 seems to always be something, nothing major. Kinda makes me nervous 😬 seems too smooth. Being K- Ras positive and all. However, I really do wish you the best of luck! You are not now not are not ever a lost cause! There will always be hope, you are in my prayers 🙏 I hope all goes well
    Take care Roseann
  10. Like
    Sillycat1957 got a reaction from PShsy in Durvalumab   
    Hi there Polly
    I just happened to re-read your post about taking the Prednisone. Was that your sisters? I'm glad it helped, but be careful because from what I understand and what my Oncologist told me I can only take up to 10 mgs of the stuff while on Durvalumab, otherwise I have to stop treatment then resume it when I am better from whatever has ailed me causing me to take a higher dose in the first place.
    Just be careful and be safe. Durvalumab is the DEVIL at times but will definitely make us better in the long run 😃
  11. Like
    Sillycat1957 reacted to Tomm in Durvalumab   
    #25 done with good blood work and some fatigue
    When I got to the cancer clinic I was check out before I could get in the building. There are no guests allowed. Something new, everyone was wearing a mask, no smiles from my nurses, no newspaper or mags. Doc said he is not sure I can get #26 if someone in the clinic tests positive for Corvid 19.  All CT's are on hold so no final result (was ned last check). The clinic has 8 pods with 8 chairs each and now there are just 3 chairs in a pod to keep us away from the other patients.
    I found out last week that many of the groceries in town allow online orders and pay with delivery or pick at the store, they bring to your car. 
    good luck to my fellow Durvies..
    Joke #1    I know a great joke about Corona Virus, you probably won't get it though.
    Bonus joke...  Day 3 without sports. Found a lady sitting on my couch yesterday. Apparently she is my wife. She seems nice.

  12. Like
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    #23 is in the bag. Blood work good. CT says grossly unchanged. Said something about a 3mm nodule in lower right but I think it may have been on a previous scan months ago. I’m not worried because we all know Imfinzi can cause weird stuff. Oncologist’s office was strange-very few patients and very spread out. Hope all are well during this weirdness. Not only do we have to stay home, the pollen count is so high the cars are green don’t wanna go outside. Enjoy the weekend all. 
  13. Like
    Sillycat1957 got a reaction from RonH 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
  14. Like
    Sillycat1957 got a reaction from DFK 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
  15. Like
    Sillycat1957 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
  16. Like
    Sillycat1957 reacted to DFK 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
  17. Like
    Sillycat1957 reacted to DFK 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
    Sillycat1957 got a reaction from Tom Galli 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
  19. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Hey all you my fellow Durvies!
    Just had #15 yesterday, I too, was met at the door by a nurse with a mask,  6 questions, took my temp, before I was allowed in for my treatment! But I felt it was better to be safe. I was pre screened on Friday so I was a tad annoyed, but what the heck, she was just doing her job. They also were practicing social distancing in the treatment room all patients were 6ft apart. No one is allowed to have a friend/caregiver accompany them until further notice either.
    As for my treatment that went off with no problem this time, but when I saw my blood work, my TSH level is 6.4! that's pretty damn high isn't it? I called my Oncologist this morning and they are running additional tests on my blood to check my T3 and T4 whatever that is. I don't like that number it's way over the range isn't it? Anyway I'm waiting to hear.
    Grahame, I'm one of the people taking 5mgs of Prednisone to calm down the nasty muscle and leg elbow etc pain side effects caused my Durvalumab. It's helped me tremendously! I hope all goes well with you moving forward, and you can continue getting your treatments.
    Babs, Hi, I have skipped 2 treatments so far due to various side effects that I had to see different doctors for, everything turned out ok. Better to be safe than sorry. I have a great team of doctors.
    DFK, so happy to see your still hear sharing your experience and hope with everyone!
    Polly, Hello, I had some shortness of breath when I started Durvalumab, I skipped a treatment to see if that was why, and it was, so that's one of the reason my Oncologist put me on the prednisone. I wish you well on your journey!
    Namaste, everyone, be sure to stay safe and keep those hands washed LOL!
    Michelle, your advice is always so appreciated 😃
    Roseann
     
  20. Like
    Sillycat1957 got a reaction from PShsy in Durvalumab   
    Hey all you my fellow Durvies!
    Just had #15 yesterday, I too, was met at the door by a nurse with a mask,  6 questions, took my temp, before I was allowed in for my treatment! But I felt it was better to be safe. I was pre screened on Friday so I was a tad annoyed, but what the heck, she was just doing her job. They also were practicing social distancing in the treatment room all patients were 6ft apart. No one is allowed to have a friend/caregiver accompany them until further notice either.
    As for my treatment that went off with no problem this time, but when I saw my blood work, my TSH level is 6.4! that's pretty damn high isn't it? I called my Oncologist this morning and they are running additional tests on my blood to check my T3 and T4 whatever that is. I don't like that number it's way over the range isn't it? Anyway I'm waiting to hear.
    Grahame, I'm one of the people taking 5mgs of Prednisone to calm down the nasty muscle and leg elbow etc pain side effects caused my Durvalumab. It's helped me tremendously! I hope all goes well with you moving forward, and you can continue getting your treatments.
    Babs, Hi, I have skipped 2 treatments so far due to various side effects that I had to see different doctors for, everything turned out ok. Better to be safe than sorry. I have a great team of doctors.
    DFK, so happy to see your still hear sharing your experience and hope with everyone!
    Polly, Hello, I had some shortness of breath when I started Durvalumab, I skipped a treatment to see if that was why, and it was, so that's one of the reason my Oncologist put me on the prednisone. I wish you well on your journey!
    Namaste, everyone, be sure to stay safe and keep those hands washed LOL!
    Michelle, your advice is always so appreciated 😃
    Roseann
     
  21. Like
    Sillycat1957 got a reaction from DFK 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.
  22. Like
    Sillycat1957 got a reaction from DFK in Durvalumab   
    Barb, Congrats!! NED!!! Yay, that is WONDERFUL 😃
    I'm still trudging along, had infusion 13 and 14. # 14 port was clogged again! that makes 3 times now! This time after pumping and some heparin half a bag of saline drip, it opened up, thank gawd! It freaks me out! Other than that, I'm glad to see all the NED post flying around here. That's awesome! 
    My next CT/Scan is going to be scheduled in May so I can only hope my 9mm tumor is gone 😃
    Michelle, no one wants to hear about Naltrexone, I see my MD again this Wednesday, I will ask again. I love when my team of Doctors just say we have other things to worry about right now WTF! 
    Any who, Have a Happy ST Patricks' Day everyone!
    Roseann
  23. Like
    Sillycat1957 got a reaction from Tom Galli in Durvalumab   
    Barb, Congrats!! NED!!! Yay, that is WONDERFUL 😃
    I'm still trudging along, had infusion 13 and 14. # 14 port was clogged again! that makes 3 times now! This time after pumping and some heparin half a bag of saline drip, it opened up, thank gawd! It freaks me out! Other than that, I'm glad to see all the NED post flying around here. That's awesome! 
    My next CT/Scan is going to be scheduled in May so I can only hope my 9mm tumor is gone 😃
    Michelle, no one wants to hear about Naltrexone, I see my MD again this Wednesday, I will ask again. I love when my team of Doctors just say we have other things to worry about right now WTF! 
    Any who, Have a Happy ST Patricks' Day everyone!
    Roseann
  24. Like
    Sillycat1957 got a reaction from Rower Michelle 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.
  25. Sad
    Sillycat1957 reacted to Barb1260 in Durvalumab   
    So ticked off right now. Insurance denied PET again. Said unless CT is inconclusive won’t approve a PET. So now it’s another CT to be scheduled. How are you supposed to know if it’s dead or spread somewhere else without a PET?
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