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Kleo

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  1. 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!🥴
  2. 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! 🤐
  3. 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.
  4. 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
  5. 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
     
     
     
     
  6. 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
     
  7. Like
    Kleo reacted to Tom Galli in Chemo starting next week   
    Darla,
    I've been out of treatment now for 13 years but am still plagued by sleeping problems. Chronic pain and neuropathy along with muscle cramps are my night terrors. Here is something I wrote years ago that outlines my strategy. 
    Stay the course.
    Tom
  8. Like
    Kleo reacted to BridgetO in Chemo starting next week   
    Hi Darla,
    I had a very similar chemo for a gynecological cancer that I had a few years  before my lung cancer. I first had 6 weekly rounds of half strength cisplatin concurrent with radiation and then three rounds of taxoterre (close relative of taxol) and carboplatin three weeks apart.  I didn't have problems sleeping. Tom has some good suggestions for sleep in his blog entry that he mentioned. Have you talked to your oncologist about your ongoing sleep issues and emphasized how big of a problem this is for you?
    i did have side effects from my treatment: hair fell out, neuropathy and digestive issues. The digestive was the worst and I think it was mainly due to having my abdominal area radiated.. But I got through it!  I did not have much in the way of pain from chemo and, while  my side effects  were unpleasant, they were tolerable. My prognosis was "dismal"--my doc actually used that word. But here I am 8 years later.  I have no evidence of disease. I'm 74 years old. I travel (when I can afford it!), I work part time (to help finance the travel) and I'm learning to speak French. My quality of life is good, despite some long term side effects of treatment.  So going through the chemo and the rest of the treatment was worth it. 
    I hope you'll find your chemo tolerable and that you'll have a good long life afterwards.
    Bridget O
  9. Like
    Kleo got a reaction from Susan Cornett in The results are in...   
    WooHoo is right! Heck, do those cartwheels anyway. They aint gotta be pretty. LOL  Or...just happy dance! Congrats!
  10. Like
    Kleo reacted to Blossomsmom in Epic Wedding   
    When my (90 year old) Mom was diagnosed we stage IV lung cancer in April, my daughter & fiancé decided to get married on 10/19/19 in hopes my Mom would be there. My mom decided then that she would give chemo a try so she would be at the wedding and at the wedding she was! She was amazing throughout all the weekend festivities staying until the very end of each event. I and her grandson walked her proudly down the isle to our seats in front, tears flowing. But the absolute topping on the cake was the last song at the wedding reception was “I had the time of my of life”, she got up and was dancing and all the guests circled around she and her dancing partner and cheered. It was the perfect ending to what was a perfect day. 
  11. 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! 🤐
  12. 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! 🤐
  13. 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! 🤐
  14. 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.
  15. 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! 🤐
  16. 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
     
  17. Like
    Kleo reacted to Susan Cornett in The results are in...   
    I had my quarterly scan on Monday and met with Super Doc today. I am NED!! As soon as he gave me the results, I choked up. This means I've been NED for 12 months. I told him that, if I could, I would cartwheel down the hallway on my way out. He said he'd prefer just a simple WOO HOO.
    I'm going to go exhale for a bit - it's been a long week (3 sticks for lab work, 3 sticks for IV contrast). 
    Hang tough, friends.
  18. 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. 
  19. 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.
  20. 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.
  21. Like
    Kleo reacted to BridgetO in Hearing is really getting bad   
    For a non-lung cancer, I had 6 rounds of cisplatin at half strength, concurrent with radiation, followed by 3 rounds of full strength carboplatin. I didn't have any hearing problems-- everybody is different!
  22. 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?
  23. Like
    Kleo reacted to RonH in Durvalumab   
    Roseann / Kleo,
    My Med Onc had said they same thing early in my treatments, that he believed that going on steroids (or at least the higher doses of it) cancelled out the benefits of Durvalumab  as well as several of the other PD1/PDL1 Checkpoint Inhibitors. Don't know if its true or not but it looks like it may well be. He had told me that if my side effects got to the point where the steroids had to be prescribed that he would suspend or likely completely  stop my Durvalumab treatments permanently.
    Also having to wait for my Stage 3A NSCLC to progress or MET elsewhere before having the biomarker testing prescribed is questionable in my mind as well. I expect that the insurance companies play no small part in some of all this. All I know was that after almost 1 year on Durvalumab only to find out that I was EML4-ALK+ and PD-L1 Negative and that Durvalumab had already been determined to be questionable for PD-L1 Negative patients and actually ineffective for ALK+ cancers, was a waste of time and money. Now I've had a recurrence and MET to another Lymph Node.  (On the bright side I did get to meet some nice people here in the Durva Club and in the LUNGevity Forums in general). I guess I will be joining a very select ALK+ Club as well now. My ONC said today that after 19 years as an Oncologist, that I am his very first actual ALK+ patient. Although he and his CNP supplied me with a lot of information, thank God that there is a ton of information out there on this and a very informative "private" ALKpositive Facebook group that I've also joined.
    I'm starting my Alectinib meds for my EML4 ALK+ Targeted Therapy this evening. Just waiting to see if I grow hair everywhere, develop fangs and claws and then start howling at the moon after taking my first few doses. 😮 Maybe I won't need a Halloween costume for Trick or Treat this year! 😀
    Best to all.
    -Ron
  24. Haha
    Kleo reacted to Sillycat1957 in Durvalumab   
    Your too funny lol! Your posts always bring a smile to my face. I'm sorry you can no longer practice medicine, you were on to something there, didn't your doctor realize that lol! Have a peaceful evening 😃 Roseann
  25. Thanks
    Kleo got a reaction from Kate7617 in Kate7617   
    Kate,
    Sounds like this doc is gonna be more on top of it! Hopefully, he'll help find a better treatment plan for you. I quit the Durva too...bad side effects for me- metasticized- and also no PDL1.
    Those little nodules show up a lot I think. I had one show up during my Durva...even glowed some on the PET...like a 3 or 4 I think. They (Pulp-Fictioned me) biopsied it...and it was just inflammation.
    Keep us updated! ☺️
     
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