Jump to content

Kleo

Members
  • Content Count

    180
  • Joined

  • Last visited

  • Days Won

    13

Reputation Activity

  1. 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! 
  2. Like
    Kleo got a reaction from DFK in Durvalumab   
    Wasn't just one tumor...it was one bigger and several smaller ones! Multiple sites.
  3. 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!
  4. 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! 
  5. 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
  6. 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
  7. 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
  8. 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.
  9. 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. 
  10. 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! ☺️
     
  11. 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
  12. 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!
  13. Like
    Kleo reacted to Tom Galli in Kate7617   
    Kate,
    Hang in there and....
    Stay the course.
    Tom
  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 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?
  16. 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!
  17. 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!
  18. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    Wasn't just one tumor...it was one bigger and several smaller ones! Multiple sites.
  19. Like
    Kleo got a reaction from Robert Macaulay 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!
  20. Like
    Kleo got a reaction from DFK in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  21. Like
    Kleo got a reaction from DFK in Durvalumab   
    Ron....I think the docs get a little excited when they find a mutation. It gives them something to target!
    Still reminds me of Professor X and his XMen though.😄 I personally have NO mutations. Nada. Not even a speck of PDL1. They don't know what to do with me!😏
    What a tough call though....radiation or targeted therapy. I am like Tom with the radiation...big fan. I did the 5 day treatment and will say it definitely kicked my butt... so much more than the 30 day first treatment I had. But they were also aiming at the lung cancer- in my brain...I'm sure it's totally different!
    Barb & Michelle....I actually gained a few pounds while on the Durva. And I'm not a weight gainer...I'm a twig. So I really don't know if the Durva was the culprit or just the steroids they had me on. Both maybe!
     
     
  22. Like
    Kleo got a reaction from Roz in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  23. Like
    Kleo got a reaction from Tom Galli in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  24. Like
    Kleo got a reaction from Sillycat1957 in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
  25. Like
    Kleo got a reaction from Robert Macaulay in Durvalumab   
    They zapped my head stuff in several locations over a 5 day period. That's multiple locations..... probably like 7 or 8. I guess that was SBRT?🤔 
×
×
  • Create New...