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DrBee

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DrBee last won the day on August 9 2018

DrBee had the most liked content!

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About DrBee

  • Birthday 08/18/1972

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  • City
    Chicago
  • US State (if applicable)
    ILLINOIS
  • Country
    US
  • Gender
    Female
  • Status
    Not a patient
  • Interests
    NSCLC, young diagnoses, spousal support

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  1. For some reason I can't quote you, Bridget or Judy (quoting you) but that is super helpful! ❤️ BTW, update, we learned we are ALK+, so we are not on immuno/chemo but targeted therapy which is working BEAUTIFULLY!.
  2. Thank you Eullrich66! When is your surgery? Will be sending you good vibes that they get it all! Surgery is not an option for us at this point, but possibly if the Alectinib is really effective, it will be!
  3. Hi Jenah and welcome to this very supportive, inspiring and wise club - of which no one wants to be a part. I am also new; my husband (49, never smoker) was diagnosed stage iv NSCLC adenocarcinoma at the end of July (3 days before our first wedding anniversary, incidentally). This forum - both being able to vent here, and the amazing and inspiring survivors, including very longterm ones - are probably the only reason I got to sleep some of those first nights when I couldn't stop crying, my hubby couldn't stop coughing, and we didn't even know how we'd make it to the first chemo session. We found out 4 days later he is ALK+, so I shifted more of my online interaction to the ALK Positive FB group, but I keep coming back here to check in with folks and because so much of the wisdom here is applicable across a broad range of types/stages of LC. I am sure you are googling KRAS like crazy, so don't need me to tell you this or send you this link, but there are really exciting things happening right now with the development of KRAS-specific targetted therapies (see for instance https://directorsblog.nih.gov/2018/02/13/kras-targeted-cancer-strategy-shows-early-promise/) So you may have more options, soon. Hopefully radiation will take care of this for now, and then if and when you need them, those KRAS specific drugs will mean whole different treatment options - and prognosis - for you. I am so glad you found us. Please keep us posted and know we all are holding you in our thoughts. You can do this!
  4. Thank you Lauren! Will do! It's been close to 48 hours since the first treatment and even super pessimist hubby said "you know maybe it's just because I know I'm on treatment but I think I feel a little bit better." YESSSS! And he has been definitely perkier with less coughing. So I'm not sure how much of that is in his head and how much of it is the treatment since it is still so early, but I am so grateful to have these options and to have this community. Also found the wonderful ALK+ group on Facebook which I know works with Lungevity as well!
  5. DrBee

    ALK Slideshow

    Hi Meloni! Not related to this slideshow, but it was so nice to find a familiar name once I started over on the ALK+ facebook group.
  6. I just realised I had posted updates to this elsewhere but not here. I was so keen to get going on treatment once we got our Stage IV diagnosis. We got ALK+ results on Monday, started Alectinib yesterday. Fingers crossed!
  7. YES Susan!!! Such great news! Big exhale in Illinois as well!
  8. Bes, thank you so much! So, sounds like very mixed results for you? I'm so sorry to hear it! Did he feel better once on the Keytruda than he did before?
  9. Thank you Johnny5. Would love to hear others' experiences too!
  10. Replying to this topic and it completely not timely way, but just wondering if anyone has updates?. Very interested to read about this combination because we are starting chemo and keytruda combo this coming week but wanted to also pursue radiation options and our medical oncologist told us that radiation would delay start of chemo / immunotherapy. What I'm reading here seems to fly in the face of that.
  11. Hi friends, I've shared, I think, that DH''s main symptoms are fatigue and [even moreso] cough (brought on by movement, change of position, eating, and talking). Since getting bad the last 6 weeks, they have had a serious impact on quality of life, because he doesn't want to go out in a lot of public places (restaurants etc) with the cough, and our favorite thing to do together - going for walks and bikerides together looking for birds and other animals - has been seriously curtailed. He doesn't want to move much because of the cough -and, of course, the less he moves, the more his overall cardio fitness is being impacted. (Of course good old LC is to blame in part as well.) He is 49, was just dx'd Stage IV. Mass in UR lobe is appr. 9cm x 4 x 5; also has lymph node involvement on both sides of lung as well as one superclavicular and a few axillary. No other organ system involvement at this point. The doc has said he has no activity restrictions, except as tolerated, just not to overexert. Yesterday we went for a 3m walk and he was totally wiped afterward. All of which is a very wordy way of asking: When on keytruda, to what extent, and how soon , did you see symptom alleviation? Also, I've been trying to find information on the proportion of folks that respond to Keytruda (his PDL1 score is 99%). So far the google hasn't helped me out there much, yet! I should have just asked here, first!
  12. Okay super confused. After being diagnosed yesterday (stage iv but just lung and lymph right now) and given a treatment plan of carbo+alimta+keytruda every 3 weeks starting next week, we reached out to the doc today just to let him know that we are interested in talking to a radiation oncologist as well about targeted radiation / CyberKnife as well. It looks like radiation plus chemo is a pretty common combination. So we were really surprised when the email reply today read in part as follows: "For now, we would not want to do radiation because it would be targeted and delay chemo-immune therapy that goes everywhere in the body. So chemo-immune therapy is the priority. " Any of you veterans out there got any ideas on why radiation would delay chemo/immune? With gratitude, Bethany
  13. DrBee

    Veristrat

    Hi Tom, and thank you for the clarification! I was just mentioning PD-L1 in the previous paragraph because I was sharing that we'd be doing Keytruda. But we are doing that along with chemo, and our onco said that the Veristrat test had suggested DH's cancer was unlikely to respond to chemo alone. I was just wondering how definitive of a test Veristrat was, and what kinds of chemo it meant he was not a good candidate for.
  14. Katie, I am out of likes for the day, but this really hit home to me today, with hubby's stage iv dx yesterday and our 1 year wedding anniversary coming up in two days. Trying to balance "how many of those things we were going to get around to one day do we try to squish in now?", and hoping we don't have to squish them too much", and still being really pissed off that the life were building is going to look so much different and likely be so much shorter in duration than we had thought.
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