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Kleo

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  1. 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.
  2. 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  
     
  3. Haha
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    What you are receiving was just approved in Canada three weeks ago. Gerfloogerbaghin sounds Scottish
  4. 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! 
  5. 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
  6. 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.
  7. 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🤪
  8. 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.😁
     
  9. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
     8 hour infusion and i thought 6 hours was bad enough. 90 minutes now with Durvalumab  total in and out there. Heading out in thirty minutes.
     
    Bob
     
  10. Like
    Kleo reacted to Steff in Durvalumab   
    Kleo- Glad to see you have kept your sense of humor through all of this...Tomm-Tom (I truly lol'd over that!)
  11. Like
    Kleo got a reaction from BridgetO in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  12. Like
    Kleo got a reaction from Tomm in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  13. Haha
    Kleo got a reaction from Tom Galli in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  14. Haha
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  15. Haha
    Kleo got a reaction from Barb1260 in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  16. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Well that 8 hour infusion was fun! Not......🤣
    Tomm…..The cannabis route is just not for everyone. All I believe is that it does help with eating and/or nausea if you get it bad. But if anyone wants to try it...go for it I say. Anything that makes ya happy!
    Tom....Hi! good to "see" ya!
    I just responded to TWO Tom's in one post.  
    A Tomm-Tom.😎 
     
    I'm so talented.
  17. Like
    Kleo reacted to Susan Cornett in Chemo ports - don't tell me what I'm feeling!   
    Kleo - ouch! I did my first round of chemo in 2016 without the port and it was miserable. One session took 7 sticks to get started. I added the port in 2017 for that round of chemo. 
    I realize we are not the medical professionals but maybe they should listen to us because we do know what's going on. After one of my surgeries, I had an allergic reaction to betadine and ended up in urgent care getting steroids. When I met with the doctor to place my port, I told him about my reaction and he said it had nothing to do with the betadine and that it was related to that specific surgery. Yeah, I ended up in urgent care two days later with another reaction to the betadine. Argh!
  18. Like
    Kleo got a reaction from Rower Michelle in Chemo ports - don't tell me what I'm feeling!   
    Hi Susan!
    Oh I can relate....kinda!
    I had a guy doing an IV for an MRI. He was just going the vein route as it was quicker. OMG...he WRECKED my arm! He was training a new guy so I think he was showing off a little and tried a hard to get vein in the middle of my arm. Yeah he didn't get it...but the BRUISE...well I took pics. Took a month to clear. so NEXT MRI..only a week or so later.....I said just have a nurse access my port this time. In case that dude was there again...LOL
    So next one they access the port no prob....then afterward when the nurse was removing it...she was talking and may be a lil distracted......and oops she removed it but forgot to flush first. I get to do it again now 2 minutes later just for a flush!🤣
    I'm not bashing the port....I like it mostly. Yesterday I had 7 hours of infusions and that port is wonderful for that.
    But there are always those lil moments!!
     
  19. Like
    Kleo reacted to Tomm in Durvalumab   
    Kelo,
    I don't taste it, I put it in capsules and took it every 8 hours. If you keep taking it you will build up a tolerance and can take a larger does. Thc kills tumors too...
    keep us posted 
     
     
  20. Like
    Kleo reacted to Tom Galli in Durvalumab   
    Tomm,
    While THC may provide pleasant sensations, I’ve not found scientific evidence that it effects lung cancer tumors. In fact the claim is THC kills all kinds of cancer and that would make it a miracle drug. Sadly there are no miracle cures. 
    Stay the course. 
    Tom
  21. Like
    Kleo reacted to Susan Cornett in Chemo ports - don't tell me what I'm feeling!   
    Most of the time, I just go with the flow on this whole cancer nonsense. But yesterday aggravated me. I had lab work done last Thursday for yesterday's CT. While I was waiting in the lab, a nurse came to the lab to tell me I was scheduled for a port flush. I said I wasn't because it would be flushed when I had my CT. She insisted so I just let her do it. She went too fast, skipped a step, and bruised my chest.
    Fast forward to yesterday. I had my port accessed for my scan. Different nurse said that last nurse's actions aren't what made my port area sore. Excuse me? How many thumb-tack sized needles have you had pushed into your chest in the last week? None? Then you don't know! 
    Rant over. Just figure some of you can probably relate. Have a good day, friends. Remember - forward is forward; speed doesn't matter.
  22. Haha
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Hi Tomm!
    Thank you for the kind words!
    I actually have the license I can have the cannabis oils. I just don't like em. Oil tastes like crap. And I accidentally took one that wasn't CBD. I took a THC one. Ended up trying to make myself a Steak-Umm but got distracted because I thought my mayo looked like butter. Spent half the day staring and comparing... trying to figure that one out. Duh....
    I don't do well stoned apparently.🤣
  23. Like
    Kleo reacted to Tomm in Durvalumab   
    Hi Kelo,
    your positive attitude helped me make the decision to take Durvalumab. The posts you make offer all of  us hope to keep taking what gets thrown at us and fight back with a forward attitude.  I a few years ago when I was getting chem/radiation I also ate CBD/THC oil and killed 4 tumors with the combo.
    There is a lot of research and some clinical trials using CBD/THC for brain cancer. I did a google search and found a few links that offer hope.
    This link is from us gov. site  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5964193/
    and  https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6200872/
    a lot of articles from this search  ..cannabis brain tumor drug hope
    CBD's Role in Beating Deadly Disease Uncovered in Blood-Brain Barrier Study
    https://www.inverse.com/article/55030-cbd-could-help-deliver-chemotherapy-drugs
    wishing you the best on your travels... 
     
     
     
  24. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    Definitely ask about the full panel biomarker. What if you had the rare ROS-1?  
  25. Haha
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    Anybody wanna come shave my head????? I already half bald anyway 🤣
    Been there done that and it has grown back in my new style.😎
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