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Kleo

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  1. 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
     
  2. 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!)
  3. 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.
  4. 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.
  5. 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.
  6. 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.
  7. 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.
  8. 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.
  9. 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!
  10. 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!!
     
  11. 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 
     
     
  12. 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
  13. 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.
  14. 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.🤣
  15. 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... 
     
     
     
  16. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    Definitely ask about the full panel biomarker. What if you had the rare ROS-1?  
  17. 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.😎
  18. Sad
    Kleo got a reaction from MBinOregon in Durvalumab   
    Hi Durvalumabers!
    I have been extremely MIA. but I was kinda busy....LOL 
    Well unfortunately, the Durva ended up NOT working for me. Found out I have NO specific markers... no PDL1...so it did nothing. Dang it.
    Started having really bad headaches...terrible. Went to ER and they found I was growing tumors in my head. Did a Craniotomy to get one of em...some more Radiation on the other stuff....and now I start yet another chemo/immuno on Tuesday. Blehhh….
    ...on a positive note...my lung/chest cancer has cleared up nicely! 🤣 
    Hope everyone here is good! 
     
  19. Thanks
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Well they are starting me on Taxol, Carbo, Tecentriq, And Avastin. I mean...that's ALOT! they say chemo can't get to the brain supposedly because of the blood-brain barrier. And the immunos all work with PDL1...which I apparently don't even have.  Soooo....am I taking all this just for fun or what!?? LOL
    Bob I'm soooo glad you are doing good on this durva! I think it just all depends on what markers ya got... or don't. 😉
    Eagle...I can see the pathology report so I see where they actually tested for the genes...BRAF and EFGR and ALK and all that......but I still can't find the part about PDL1. Doc just TOLD me I don't have it...I haven't actually seen it. I'll ask tomorrow.
    Anybody wanna come shave my head????? I already half bald anyway 🤣 
  20. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Hi Kleo. I’m sorry to read that you have had to deal with this setback. But with your spunky determination you got this. My thoughts are with you. Stay tough 
  21. Like
    Kleo reacted to BridgetO in Durvalumab   
    Hi Kleo, I've been wondering what was up since we hadn't heard from  you in  a while. I'm glad you're back, but I wish is was with better news. You really were "kinda busy"! Whoo!  Hang in there and keep posting when you can. We're all thinking about you and pulling for you.
    Bridget O
  22. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    Welcome Home Kleo!
    So glad to hear from you, however, sorry to learn about this update.  You’ve been such an inspiration to me with steadfast spunk and determination.   We’re all here for you.  As Eagle says- prayer works. So here we go- a worldwide prayer from this circle of your family.  Sending a big hug. 
    Michelle 
  23. Like
    Kleo reacted to Eagle13 in Durvalumab   
    Kleo,
    Did they do the full biomarker tests?   I think I would ask for another full test.  It can be done with blood.
    https://www.ncbi.nlm.nih.gov/m/pubmed/29413057/
    praying for the best 
    🦅
     
  24. Like
    Kleo reacted to Robert Macaulay in Durvalumab   
    Kleo
    I guess you were kind of busy with a little Craniotomy  on the side and you were concerned about needle biopsy😀 .I have no idea about my specific markers bit late to find out now as i go for #22 on Wednesday this week and finish Durvalumab on August-14 then scan late August now the proof of the pudding is it working will come clear in the next six months. Did they say what type of  chemo/immuno  you will receive. ? There is always  some type of setback in persons cancer treatment and as long as your getting treatment you will handle it.
    Bob
  25. Sad
    Kleo got a reaction from Tom Galli in Durvalumab   
    Hi Durvalumabers!
    I have been extremely MIA. but I was kinda busy....LOL 
    Well unfortunately, the Durva ended up NOT working for me. Found out I have NO specific markers... no PDL1...so it did nothing. Dang it.
    Started having really bad headaches...terrible. Went to ER and they found I was growing tumors in my head. Did a Craniotomy to get one of em...some more Radiation on the other stuff....and now I start yet another chemo/immuno on Tuesday. Blehhh….
    ...on a positive note...my lung/chest cancer has cleared up nicely! 🤣 
    Hope everyone here is good! 
     
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