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Kleo

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  1. Like
    Kleo got a reaction from JamieK in Durvalumab   
    A little over a week from now! I'm not sure yet when I'll start. Probably sometime in September. I just finished 6 weeks radiation so I have to wait for the 3 week post check-up to find out. Not thrilled about infusions every 2 weeks...BUT...it shouldn't be nearly as long as the chemo infusions were! So YAY that! 
    I believe I read that they have made Durvamulab the standard treatment now for unresectable lung cancer following platinum based chemo and radiation.  
    Keep us posted on how it's going. 
    I'll be right behind ya!
    Hoping this stuff works wonders! LOL
     
  2. Like
    Kleo got a reaction from LouT in Durvalumab   
    Bob I think we are treatment twins here...😁😁 
     
    Just got my CT appt for Sept. 26. That puts me at the end of October then for my first treatment. By then you'll have had several treatments so you're gonna be like my Yoda   guide through this stuff! 😏
  3. Like
    Kleo got a reaction from LouT in Durvalumab   
    Wow! Expensive stuff! I'm lucky as well I get it covered under a local charitable organization called Baycare.
    I STILL don't have my start date though! Saw my onc today and she's ordering a CT first, follow up in 4 weeks...THEN I start. I think she's going on vacation so that's probably why I'm delayed. I guess there's no rush huh? October it is.... LOL
    And YAY for no funky side effects Bob! 
  4. Like
    Kleo got a reaction from LouT in Durvalumab   
    Thank you Bob for the update!  
     
    And thank you Lexie for the well wishes! 😘 
     
  5. Like
    Kleo got a reaction from LouT in Durvalumab   
    Hi Robert!
     
    I'll be starting on Durvalumab shortly myself. It's so new I don't know if anyone has been on it all that long yet!  
    It appears to work similar to Keytruda...?..if I'm reading it right.   My oncologist is pretty excited about it though. LOL
     
  6. Like
    Kleo got a reaction from AngelL in Durvalumab   
    I have officially been infused. LOL I was pretty nervous. I ate a bag of cheesy poofs during the infusion....nervous snacking I guess. I got the orange cheesy powder all over everything. On the blanket and the chair....the nurse. It was even in my hair.🤣  Picture Pigpen from Charlie Brown..only orange. LOL
    Infusion was an hour, prep was an hour...so not too bad. Kinda nice to only get ONE bag-o-drugs after all the bags of stuff they had to give with chemo before!
    They didn't weigh me prior though. But I'd been weighed the week before. Recommended dosage of this stuff is 10 mg per kg.... I got 475 mg so that sounds about right I guess!
    So far so good...🤞
    -
     
     
     
  7. Like
    Kleo got a reaction from AngelL in Durvalumab   
    I still haven't started mine. 😕 Gotta wait for the CT scan this week. Bob you didn't have side effects for chemo?! Wish I could say the same!
    Why do they always gotta have the icky side effects? Nausea, vomiting, neuropathy, hair loss, fatigue, etc. I wanna discover one that has some cool side effects. WARNING: May cause the sudden ability to fly, enhanced telepathy, increased speed and agility, night vision, extreme intelligence, etc. LOL
    I think I watch too many X-Men movies..😄
  8. Like
    Kleo got a reaction from May2 in Durvalumab   
    I still haven't started mine. 😕 Gotta wait for the CT scan this week. Bob you didn't have side effects for chemo?! Wish I could say the same!
    Why do they always gotta have the icky side effects? Nausea, vomiting, neuropathy, hair loss, fatigue, etc. I wanna discover one that has some cool side effects. WARNING: May cause the sudden ability to fly, enhanced telepathy, increased speed and agility, night vision, extreme intelligence, etc. LOL
    I think I watch too many X-Men movies..😄
  9. Like
    Kleo got a reaction from MatildaMel in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  10. Like
    Kleo got a reaction from DFK in Durvalumab   
    Barb...
    I'm glad ya get a break anyway...the pain should ease up some now I hope! Dang pleuritis or pneumonitis... or bursitis.... or whatever it is!🥴
  11. Like
    Kleo got a reaction from DFK in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  12. Like
    Kleo got a reaction from DFK in Durvalumab   
    That Benedryl they give ya is something! One dude in my infusion room passed out & started snoring...very loud! 😴 Kinda amusing.
    Me...it gave me restless legs! They lowered the dose. Can't have my legs flyin around the room. 
    (She did the MASH.....she did the MONSTER MASH!)🥴
    I never got anything else with the Durva though. That was only given for the Taxol.
  13. Like
    Kleo got a reaction from DFK in Durvalumab   
    Hi Roseann….
    Yeah they've made durva an approved standard now for the lung cancer treatment. There are other immunos out there….the problem is, they aren't all approved for this treatment. I had to get my lung cancer in my brain to be allowed this immuno I'm on now. Who wants to do that!!? blehk. 😣 My onc thinks that my steroid dosage cancelled out the Durva. She still believes the durva worked up until I got the big doses of steroids at the ER. 
    Durva ups your immune system, steroids tamp it down. So...in her opinion anyway...it was a wash. Can't remember exactly how many Durva I had...I'd have to go back and look. It wasn't many …. off and on a lot though.  
    And...I have NO PDL1 at all. Doc says Durva still works regardless of PDL expression. I say it won't work on me without the PDL1.
    But my doc has banned me from practicing medicine now anyway...LOL
  14. Like
    Kleo got a reaction from DFK in Durvalumab   
    Barb...holding that arm up and still for a scan is like impossible when it hurts so much! I'm on this Tecentriq immuno now...plus Avastin. I asked my doc about the Tecentriq. It's kinda the same as Durva targeting the PDL1 so I was afraid I'd have more problems. But she said they all use different pathways. So far it hasn't caused the horrible muscle pains and spasms for me. (Knock on wood!)
    I do remember my onc telling me I might have...I think she said... bursitis?.... in my shoulder.
    Nope. That wasn't it. LOL
     
     
     
     
  15. Like
    Kleo reacted to Rower Michelle in Durvalumab   
    Hello to The Durva Club-
    I wanted to pass this information along to you-
    On Saturday I was invited to speak to a group of medical professionals as part of a Continuing Education/Lung Cancer Awareness event.  I crashed the CEU program in search of new information. As a side note it’s amazing what the keynote speaker (from one of the big famous comprehensive cancer centers) had to say in the opening remarks.  “Lung Cancer is bad, really bad “ Obviously he didn’t know there was a patient lurking around in the audience.  He wasn’t a positive see the bright side of life type of Doctor. Shame on him!!
    Anyway, a Durva study is about to be published about the efficacy of this IO and a direct correlation was discovered between the health and diversity of the gut microbiome and adverse events (any of the itis’s).   It was reported that many well advertised over the counter pre and probiotics had an adverse impact on the gut microbiome.  Too much of “good thing” is bad for you. 
     
    those patients with a healthy diverse gut microbiome (measured in stool samples) had a very low incidence of adverse events, greater efficacy and ability to tolerate the full course of Durva.  

    In my opening remarks I did call out this doctor and told him there are many brave survivors who have learned to live with lung cancer beating the odds every day. 
     
    You guys inspire me! 
    Michelle
     
  16. Haha
    Kleo got a reaction from Tomm in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  17. Haha
    Kleo got a reaction from Rower Michelle in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  18. Like
    Kleo got a reaction from Barb1260 in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  19. Like
    Kleo reacted to RonH in Durvalumab   
    Barb,
    I took a 5 to 6 week break from Durvalumab due to elevated AST and ALT liver function test levels right after my initial two infusions of Imfinzi. I had also experienced many of the other side effects, such as the itching and the muscle pains. I however didn't go on the steroids and just let nature take its course. After the 6 weeks or so and I was feeling normal again (at least as normal as I usually am) and my liver function tests were back to within the acceptable range, I restarted the Durvalumab. The side effects returned again within a few weeks, but at much lower levels the second time and for some reason it never affected my liver again, so I continued taking it.
  20. Like
    Kleo got a reaction from RonH in Durvalumab   
    Barb....I took two...month long breaks because of the pain. Doc is probably afraid of the breaks and the steroids....might get spreading if you stop.
    I think you gotta just talk to your doc. Tell him you can't handle the pain this is giving you.
    I just googled my immuno stuff....the Tecentriq. Works like Durva. Says it's approved for Lung Cancer plus some others. Wonder why they don't usually give it though!?? Huh. See....THIS is why I'm not allowed to practice medicine.
     
    Don't ANYONE tell my doc I was Googling again! 🤐
  21. Like
    Kleo reacted to Sillycat1957 in Durvalumab   
    Hi all,
    I had my 4th Durvalumab infusion on Monday 10/7. The 5mg steroid seems to have helped with my niggling side effects except for my foot pain. The fatigue is unbelievable, I hope this soon improves, as this, for me anyway, seems to be the top complaint right now. But hey, I'll take it, all my labs are good. I just have to increase my daily walking to at least 30 minutes a day my oncologist said that will help with the fatigue. Well, I can try LOL! I can barely move ova here, but I can do it 💤 
    Ron wishing you a long successful run with Alecensa! 
    Fighting the fight, One day at a time 😃
    Roseann
     
  22. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Kleo you are hysterical. I get the Benadryl because I scared them when I had anaphylactic shock from the Taxol and taxotere. Guess they got tired of jabbing me with an epi-pen. 
  23. Like
    Kleo got a reaction from Sillycat1957 in Durvalumab   
    That Benedryl they give ya is something! One dude in my infusion room passed out & started snoring...very loud! 😴 Kinda amusing.
    Me...it gave me restless legs! They lowered the dose. Can't have my legs flyin around the room. 
    (She did the MASH.....she did the MONSTER MASH!)🥴
    I never got anything else with the Durva though. That was only given for the Taxol.
  24. Like
    Kleo got a reaction from RonH in Durvalumab   
    That Benedryl they give ya is something! One dude in my infusion room passed out & started snoring...very loud! 😴 Kinda amusing.
    Me...it gave me restless legs! They lowered the dose. Can't have my legs flyin around the room. 
    (She did the MASH.....she did the MONSTER MASH!)🥴
    I never got anything else with the Durva though. That was only given for the Taxol.
  25. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Well I am halfway through it. Had #13 today and feeling exhausted. Never sure if it’s the Durva or the Benadryl they shoot me up with beforehand but it seems every one makes me a little more tired. Hey Tomm, where are you?
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