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Kleo

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  1. 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. 
  2. 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.
  3. 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.
  4. 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!
  5. 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?
  6. 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
  7. 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
  8. 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! ☺️
     
  9. Like
    Kleo got a reaction from Susan Cornett in Hearing is really getting bad   
    I had cisplatin last year. My hearing improved SOME after treatments...but I still get tinnitus occasionally. And I can't hear my tv- sometimes. Not all the time and not that bad though.
    I think it's like everything with chemo....some get it worse than others! 
  10. Like
    Kleo got a reaction from DFK in Durvalumab   
    Wasn't just one tumor...it was one bigger and several smaller ones! Multiple sites.
  11. Like
    Kleo got a reaction from DFK in Durvalumab   
    I had terrible muscle pains with the Durva... first in my back...then went to my arm. Sent me to the ER twice! I remember doing one PET scan where I couldn't lift that arm up...was in tears.
    I was put on the steroids for the pain.  Helped a little but not much. I kinda cringe now when I hear y'all are being given steroids. I'm sure it's just me being paranoid. ..and the docs have figured out the right dosage now. I don't want to worry or scare anyone! But steroids and durva were not right... for me.😣
    I will say that the muscle pain went away after they took me off the Durva!
  12. Like
    Kleo got a reaction from Tom Galli in Hearing is really getting bad   
    I had cisplatin last year. My hearing improved SOME after treatments...but I still get tinnitus occasionally. And I can't hear my tv- sometimes. Not all the time and not that bad though.
    I think it's like everything with chemo....some get it worse than others! 
  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 Barb1260 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
  15. Like
    Kleo reacted to Tom Galli in New to group   
    Cari,
    Welcome here. 
    I survived many years of treatment mayhem and come February, will have 16 years of life after diagnosis. I've had every kind of treatment imaginable (click on the hyperlink Treatment History here in the footnote of my post). So bottomline summary: if I can live, so can your dad.
    There are many reasons online survival statistics don't show the real story.  Most fundamentally, the data set is suspect. Read this for a more complete explanation.
    Stay the course.
    Tom
  16. Like
    Kleo reacted to Susan Cornett in New to group   
    Hi Cari -
    So glad you found us. There is so much information on this site and so many wonderful, helpful people. We also have a lot of long term survivors so keep this in mind: there is hope. Now, this is what I tell the newbies: forget the statistics - they are b.s. There are so many factors that the statistics don't include - your dad's overall health, newer treatments, people who dropped out of treatment, etc.
    Do you know what your dad's next steps will be? Chemo, radiation, or a combo? I was diagnosed with stage 4 adenocarcinoma in 2016 and have had two recurrences. I've been through chemo (twice), radiation, and SBRT. I'm still standing, albeit with a chip on my shoulder about cancer. 😁 
    Please ask us anything. We've all walked in your dad's steps or in yours. We're here to help.
  17. Like
    Kleo reacted to Susan Cornett in Hearing is really getting bad   
    Isabelle,
    I had Cisplatin in 2016. I, too, have the muffled sounds and I have tinnitus. Super Doc told me that both side effects are likely permanent. It's frustrating because I can't enjoy music as clearly/crisply as before. 
  18. Like
    Kleo got a reaction from Tom Galli 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! ☺️
     
  19. Like
    Kleo got a reaction from Sillycat1957 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
  20. Like
    Kleo reacted to Kate7617 in Kate7617   
    Hi Everyone, Got a new Dr and went yesterday, much more of an understanding of what is going on with my cancer treatment and durvalumab as far as moving forward. Dr asked me, " are you the type that wants and explanation of what is going on?" sure, I said, I want to be my own advocate.so then I was told ( which I wasn't told from other Dr) my PDL 1 is negative, and that means very rarely will Durvalumab have any significant cure for NSCC, so Dr said he will, "dismiss" that and want to continue with treatments. Hmm? Sounds like they need a certain amount in the "study" that have PDL 1 negative to see what happens, so with that, I am not a mouse that they are experimenting with. So with that knowledge I said no to Durval, And for the main reason the very harsh and adverse effects it has caused on my health, to me quality is certainly better than quanity. Going for another CT 10/31 because there are these teeny tiny nodules, so small the radiologist says, "inconclusive" needless to say being told my CT scan was "good" on 9/17 and then this, well which is it? I will know more on the 4th of November, so glad I feel 85 % better now, the swelling has gone down in my legs, face, and arms. And I can actually breathe while I walk again. Pullmanry Dr says these teeny tiny nods usually fall off in 6 months. I am carrying on now, I had my med records sent to MD ANDERSON, waiting to see if they can offer me a hope that I can cling too. Thanks to all of you! Wishing all a beautiful day!
  21. Like
    Kleo reacted to Tom Galli in Kate7617   
    Kate,
    Hang in there and....
    Stay the course.
    Tom
  22. 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
     
     
     
     
  23. Like
    Kleo reacted to Barb1260 in Durvalumab   
    Hey Kleo. Thanks I remember you being in pain. I couldn’t hold my arm up for the CT. It was awful. How are you doing?
  24. Thanks
    Kleo got a reaction from Barb1260 in Durvalumab   
    I had terrible muscle pains with the Durva... first in my back...then went to my arm. Sent me to the ER twice! I remember doing one PET scan where I couldn't lift that arm up...was in tears.
    I was put on the steroids for the pain.  Helped a little but not much. I kinda cringe now when I hear y'all are being given steroids. I'm sure it's just me being paranoid. ..and the docs have figured out the right dosage now. I don't want to worry or scare anyone! But steroids and durva were not right... for me.😣
    I will say that the muscle pain went away after they took me off the Durva!
  25. Like
    Kleo got a reaction from Sillycat1957 in Durvalumab   
    I had terrible muscle pains with the Durva... first in my back...then went to my arm. Sent me to the ER twice! I remember doing one PET scan where I couldn't lift that arm up...was in tears.
    I was put on the steroids for the pain.  Helped a little but not much. I kinda cringe now when I hear y'all are being given steroids. I'm sure it's just me being paranoid. ..and the docs have figured out the right dosage now. I don't want to worry or scare anyone! But steroids and durva were not right... for me.😣
    I will say that the muscle pain went away after they took me off the Durva!
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