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Kleo

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  1. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Kleo-never hit send on that one. Just found it. You made me choke on my boring turkey sandwich. Your doc must wait for your appointments, you’re the only bright spot in her day probably. Keep up your humor. 
  2. Haha
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    I been called lots names in my day but Yoda is not one of them.😁 Now i do like the statement your Doc made  Said I'm in alot better shape than I think I am. Got to love female doctors I am biased as i have two😎.One other thing you mentioned I am NOT typical for Durvalumab! It works wonderfully for most people! But  you were the norm rather than the exception but who is going to refuse a excellent drug even with the percentages.
    Now that you have given up studying Oncology you can enjoy the summer between treatments.
    Bob
  3. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Bob....you were right!😏 You called it! My onc won our little battle. and she basically told me I was being an idiot. 🤣 Said she is revoking my doctor's license, and having my google/internet cancelled. I tried saying...but the immunos all target the same thing that I don't even have...why bother? durva didn't work for me! She said that they are all entirely different drugs...using different pathways...and she really thinks this combo will stop my head stuff. Said I'm in alot better shape than I think I am. 
    I said...but it's so toxic...you gave me 2,766 mg of drugs in 8 hours. Her eyes got real big and she said...you mean you actually sat there and added up the milligrams?!! Geeez. 😁
    Yes I did. LMAO.
    Anyway...she's reducing my chemo doses since I really haven't any active cancer in the lung- and chemo is what makes me feel so crappy....so I'm gonna try it again.
    Bob was right....he's like Yoda.
     And as said by tomm here.....I am NOT typical for Durvalumab! It works wonderfully for most people! 
  4. Like
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Bob....you were right!😏 You called it! My onc won our little battle. and she basically told me I was being an idiot. 🤣 Said she is revoking my doctor's license, and having my google/internet cancelled. I tried saying...but the immunos all target the same thing that I don't even have...why bother? durva didn't work for me! She said that they are all entirely different drugs...using different pathways...and she really thinks this combo will stop my head stuff. Said I'm in alot better shape than I think I am. 
    I said...but it's so toxic...you gave me 2,766 mg of drugs in 8 hours. Her eyes got real big and she said...you mean you actually sat there and added up the milligrams?!! Geeez. 😁
    Yes I did. LMAO.
    Anyway...she's reducing my chemo doses since I really haven't any active cancer in the lung- and chemo is what makes me feel so crappy....so I'm gonna try it again.
    Bob was right....he's like Yoda.
     And as said by tomm here.....I am NOT typical for Durvalumab! It works wonderfully for most people! 
  5. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    If this makes sense please let me know😎
    Atezolizumab (Tecentriq®)
    Atezolizumab (Tecentriq, Genentech USA, Inc, San Francisco, CA, USA) is a monoclonal antibody that binds to PD-L1 and blocks its interaction with PD-1, thereby enhancing T-cell activity against tumor cells.21
    Durvalumab (Imfinzi®)
    Durvalumab (Imfinzi, AstraZeneca, Cambridge, UK) is a human IgG1κ monoclonal antibody that blocks the interaction of PD-L1 with the PD-1 and CD80 (B7.1) molecules.25
  6. Like
    Kleo got a reaction from Charles in Durvalumab   
    Yes Rower Michelle!.... This is the new protocol now....just as the durva was. 
    Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔 
     
  7. Like
    Kleo got a reaction from Eagle13 in Durvalumab   
    Yes Rower Michelle!.... This is the new protocol now....just as the durva was. 
    Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔 
     
  8. Like
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Yes Rower Michelle!.... This is the new protocol now....just as the durva was. 
    Gotta wonder..... how similar are Tecentriq and durvalumab considering they target the same thing? Just like Keytruda and durvalumab….🤔 
     
  9. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    I’m willing to sell tickets to that show down tomorrow!  Anyway, I’m looking at the June 2019 American Society of Oncology Association. (ASCO) abstracts.  It appears as if your medical team is humming along with the new chemo immunotherapy protocol. Typically administered when there is no PDL-1 or targeted mutation.  Early studies suggest good results in PFS.  
    Ask the doc to show you which abstract is most applicable and have them provide you with a copy.  Sounds like this is going to be worth it in the long run.  
    Good luck-lock and load.  
  10. Like
    Kleo got a reaction from Charles in Durvalumab   
    Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... 
    I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL
     
    JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva.
    That's just ME though...I'm pretty weird! 😏
     
     
  11. Like
    Kleo got a reaction from Tomm in Durvalumab   
    Tecentriq is alot like Durva...targets PDL1. I don't have any PDL1 expression. Why am I taking a medicine that targets something I don't even have!?? Seems silly to me. I said that to my onc last time and she said sometimes it works even without PDL1. So does Durva apparently….that's why they give it to everyone regardless! But it didn't work on me... 
    I don't know I just feel like the PDL1 immunos are not my thing. I guess we will battle it out tomorrow...LOL
     
    JaneLee….my onc told me the bad shoulder pain I got during durva was probably bursitis..? couldn't lift my arm at all. Then it went completely away after I stopped the durva.
    That's just ME though...I'm pretty weird! 😏
     
     
  12. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    Don't feel like this is the right stuff for me.
     I bet he will convince you otherwise. 😎
  13. Haha
    Kleo reacted to Charles in Durvalumab   
    Hey Kleo I'd try a hit of that Gerflooberglobbin over here but I'm still pixellating on the Prednisone, it sounds a little German to me though, somethin like Der Gooberflobbin is akickin se poopinhockin outen mein poopinhopper, but in all honesty and seriousness am sorry to hear about the pain with the new treatments, seems if it aint one tham dang it's another right?
  14. Like
    Kleo got a reaction from Charles in Durvalumab   
    Haahaaahaaa! Bob you are so funny!🤣
    Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 
    I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me.
  15. Sad
    Kleo got a reaction from Charles in Durvalumab   
    This is off topic but I just gotta say it......this chemo/immuno cocktail is BLEHK!😣 
     
    Anyway...when I was on the durva...my biggest problem/side effect I saw was that it caused me joint and muscle pains in my back and arms. Sent me to the ER twice they were so bad. So now they are giving me this...Tecentriq stuff...and I'm having joint/muscle pains again..but all over. Even my legs! So how do I know if it's the immuno again or the taxol or whatever else they've tossed in my salad!?
    Too many thingies!
    I'm grouchy today....sorry 😉
     
     
  16. Like
    Kleo got a reaction from Charles in Durvalumab   
    I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help.
  17. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    I think they are just tossing the dang alphabet at me! Here try this new Gerfloogerbaghin...it'll help.
  18. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Haahaaahaaa! Bob you are so funny!🤣
    Yeah they just approved that Tecentriq/ Avastin combo with chemo here. So that's what they are trying...even though I don't have PDL1😣 
    I'm gonna have a lil chat with my onc Wed. Don't feel like this is the right stuff for me.
  19. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Grouchy is acceptable. Sorry about the pain.   I’ve only had 4 infusions and I have pain in my foot joints occasionally  which I had for years then it went away during chemo and radiation.  Never figured that out  
     
  20. Haha
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    What you are receiving was just approved in Canada three weeks ago. Gerfloogerbaghin sounds Scottish
  21. Like
    Kleo reacted to Susan Cornett in CT results and exhale   
    Had a CT on Tuesday and I'm thrilled to say I'm still NED!  This is the longest stretch (8 months) that I've gone without a recurrence or treatment. Somebody pinch me! I'm also 3 years & 4 months from diagnosis as stage IV. So very much to celebrate!
    As I said in my FB post last night, it is not lost on me that I've been blessed with more time than others. I believe we all have a purpose in life and I believe I"m still here for a reason.  I try to use my time to share our stories, educate others and help the newly diagnosed deal with this crummy diagnosis.
    Tom says stay the course - he's absolutely right! 
  22. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Charles
    Sorry to hear about your condition it was about the same time infusion#8 or 9 that i had to go to ER major cough and they could see inflammation on the lung, They held off on predisone and i noticed on my next blood work my white bloods cell count went off the charts.Still have chest infection that shows on the CT the doctors are aware..
    Stay the course
    Bob
  23. Like
    Kleo reacted to BridgetO in Durvalumab   
    Hey Charles, You've really been through it!  I'm pulling for you. Hang in there.
    Kleo, when I lost my hair, I thought I looked like an old baby. I also thought if hair loss were the worst of it, chemo would be a breeze.
  24. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Hi Kleo. The Durvalumab/prednisone relationship has seen better days. I think the max daily dose they came up with is 10 mgs. If I could take that daily to ward off the bad stuff I would but I don’t think they would do that yet. We are still guinea pigs on this stuff. Sorry about your hair. Mine is not growing in too fast. I didn’t order the button for my back to be able to pull the hair out of my scalp🤪
  25. Thanks
    Kleo got a reaction from Charles in Durvalumab   
    Barb....I never got dizzy either. But I did have really bad muscle/joint pain. 
    Hi Charles! Sounds like the durva doesn't play well with you at all either! Gee whiz!😣 
    Now just to pass along what my nurse told me... Supposedly they've figured out that the durva does not do well with the prednisone. Or any steroids really...at high doses. But especially the durva and prednisone. I was on all kinds of steroids for the muscle joint pain. Big ol doses of prednisone! Now whether she has the right info...I don't know. Don't wanna start nurse rumors! Something for people to look into though. 
    And whether that had anything to do with my durva not working for me...who knows. could just be I didn't have the PDL. 
     
    I shaved my head!   I look like a q-tip.😁
     
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