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Showing content with the highest reputation since 01/22/2019 in all areas

  1. 5 points


    Uneventful #16 infusion yesterday. All labs within normal parameters. Repeat DLCO test at 64% today, up from 44% after pneumonitis in April. Don’t know if time and healing accounted for generous jump in DLCO value but I'd like to attribute it to my tenacity in starting an exercise program. Baby steps to wellness.....I'll take it. Carry on everyone. With Gratitude and Blessings DFK
  2. 4 points
    Today was my husband’s last day of chemo. what a whirlwind it’s been since Nov. 14th but so happy he rang the 🔔. It’s been filled with lots of twists and turns, as I’m sure everyone’s has...the biggest was my last post with our meeting with a PA instead of his dctr and it being a shi_ show, as I like to call it. We are glad treatment is over and obvi, pray that in 3 weeks his CT scan is clear (and all others moving forward) however, it wasn’t easy coming back and seeing the PA again. To say his choice of words last time was poor...”lung cancer always comes back” it’s been hard to feel good about being switched to a PA in the middle of treatment without our consent. Add to that, not responding to important calls - ringing of ears, folliculitis to name a few - is frustrating. It’s too long to write all that transpired last visit but this one, as awesome as it is, has us both not feeling confident in my husband’s care, if that makes sense. His surgeon- fabulous. The nurses in the infusion part - fabulous. His oncologist seems great but has been MIA the last 2 treatments and the oncologists main nurse and the PA - no bueno. Just frustrating and awkward now. Anyhow, back in 3 weeks for CT scan and then every 3 mos afyer thay If all is good. He had a pneumonectomy (stage 2b) NOn small cell poorly differentiated squamous cell carcinoma . Thank you as always for all your help and great advice. He’s in the alchemist trial and waiting to see about immunotherapy drugs as well (also at next visit)
  3. 4 points
    Learn the many ways to manage & treat shortness of breath due to lung disease to improve your overall quality of life. Find out about causes, triggers & what you can do about them at an informative, free webinar Feb 12. Anyone struggling with shortness of breath due to serious illness -- and their caregivers -- should attend. Hosted by @getpalliativecare. https://getpalliativecare.org/webinars/
  4. 3 points
    Hi All, A 202 area code phoned this morning, normally I don’t answer unknown numbers due to robo call overload. Glad I did— it was a legislative staffer from US Senator Jerry Moran’s office phoning to thank me for me the lung cancer funding advocacy letters! This staffer lost her Grandpa to lung cancer last year. So I used the opportunity to advocate for two more issues we all struggle with: the high cost of our various medications & treatment as well as our HEALTH INSURANCE DISEASE. I suggested Senator Moran sponsor new legislation for a Patient Bill of Rights, whereby anyone with advanced cancer would receive the benefit payment for treatment plans recommended by our physicians. We’re all sick and tired of messing with the insurance companies! They are stepping over a dollar to pick up a dime while enjoying record profits! I invited the Senator to be a speaker at our KC Living with Lung Cancer Support Group too. Not sure if anything will come from the call however I will keep writing letters! Michelle
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