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Judy M2

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Judy M2 last won the day on October 21

Judy M2 had the most liked content!

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  • City
    San Diego
  • US State (if applicable)
    CALIFORNIA
  • Country
    USA
  • Gender
    Female
  • Status
    Lung cancer patient/survivor
  • Interests
    Originally from Rockland County, NY, worked in NYC for many years. As an office worker in Lower Manhattan, I'm a member of the 9/11 survivor community and am enrolled with the 9/11 Victims Compensation Fund and World Trade Center Health Program. Moved from NY in 2014.

    My husband and I are retired. We have 2 crazy dogs (sisters) who we adopted at 3 months old. They are now 8 but still love our walks in the neighborhood and seeing their friends.

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  1. Susie, people who never smoked who get lung cancer are beating themselves up for not being organic enough. Or whatever enough. Or using cosmetics. It's not your fault. It just happens, and we've drawn the short straw. Smoking is also a risk factor for cardiac trouble. Not every smoker gets lung cancer or has a heart attack. Lexie has some good advice. I have a friend who used hypnosis to quit, and it worked for her. Granted, it doesn't work for everyone. Best of luck with your cessation efforts.
  2. @KatieB, can you please provide the link to the "Questions for Your Doctor About Clinical Trials, Glossary of Terms, and Sample Letter to Doctor" ? I would like to send that to someone. Many thanks.
  3. Whoa, how unacceptable! My oncologist is quite the opposite and even writes songs for his patients. He has even been a keynote speaker for this LUNGevity's COPE summit this year. You both deserve a medical team who is understanding and compassionate. Lung cancer treatments are difficult enough to experience without the added stress of the "hurt feelings" of a prima donna doctor. I hope things improve with the new oncologist.
  4. I blamed myself too. I went back to work in Lower Manhattan the week following 9/11, when Downtown reopened. The air was horrible for months but we were assured that it was "safe". I could easily have gotten a new job in Midtown. I kicked myself when I was diagnosed 2 years ago at age 66. Hindsight is great. But it has been important for me to forgive myself and let the guilt go. I can't change the past. I've been through a lot in my treatment journey but it's all been worth it. I'm NED now and doing great. My oncologist often says that no one deserves cancer, including smokers. The fact is that anyone can get lung cancer, regardless of smoking history. But it will help with your treatment/recovery if you are able to stop smoking, whatever way you can. Take it one day, one hour, one minute at a time. Best of luck. P. S. This article from Cure Magazine explains the stigma better than I can: https://www.curetoday.com/view/-stigma-kills-kathy-griffin-s-diagnosis-brings-lung-cancer-needs-to-the-forefront-regardless-of-patient-smoking-history
  5. I should mention that Tagrisso can affect the kidneys and liver, so I assume your dad's oncologist is monitoring those blood test results. I assume at this stage he is getting monthly labs. I graduated to every 3 months after a year.
  6. Michelle, I also rely on my PCP more these days now that my oncologist has an easy job with me. Have a nice massage. Hope you are feeling better soon.
  7. When I was in the rehab facility after abdominal surgery (and sepsis infection), once I was upgraded from clear liquids only, I had the most difficult time getting the hospital food service to follow my meal orders. They constantly sent me foods I specifically could not tolerate and didn't order. Like tomato soup for someone with esophagitis and acid reflux...so painful! My husband had to bring me chicken noodle soup from home, plus mango sorbet (yum). The irony is that this hospital's food was actually good. I finally had a meeting with the social worker and food service manager, and that seemed to improve things. I was in the rehab place for 10 days after a 10-day hospital/ICU stay, and overall my care was very good. You may want to smuggle in some Ensure so at least you're getting some better nutrition. Hope you feel better soon and get the heck out of there.
  8. He should hang in there if at all possible. Does he take Tag in the morning or evening? Many people have switched to taking it at bedtime and have reported improved side effects. (I take it at bedtime.) His primary doctor should test his B12 and electrolyte levels. He can easily get a B12 shot if he's low. If he's drinking a lot of water, his electrolytes could be out of balance. I add a good electrolyte powder (LMNT is the brand) to a glass of either oat milk or water every day. Getting his nausea under control is a big step in feeling better. I can tell you that I was miserable for a couple of months after starting Tag, but I was also recovering from abdominal surgery. So I never knew what was causing me to feel so sick. Within 2 or 3 months I was feeling much better, and that really improves your state of mind. His oncologist can give him a prescription for Zofran. In any event, I'd talk to his oncologist and PCP about his side effects. Tagrisso is much more tolerable than the 1st and 2nd generation EGFR TKIs. I hope he's able to stay on it and tolerate the side effects because it really is a wonder drug.
  9. Great post, Lou! I also thought I'd be dead by year-end when I was diagnosed with Stage IIIB two years ago. The LUNGevity community has been so helpful in turning my perspective around. How do you manage 2 Wheatons? My neighbor had one who was a therapy dog and they couldn't imagine having 2! All the best to you.
  10. My feeling is do what you can tolerate but try to avoid getting to the point of pain. I always check air quality before I go out for my morning walks with my dog. If it's in the range of "unhealthy for sensitive groups", I wear a KN95 mask and cut my walk short. Otherwise, I'll have shortness of breath all day. You didn't say if you've seen a pulmonologist. That might be a good next step. Take care.
  11. I still have some pneumonitis from radiation that doesn't require treatment. My PCP says that it takes a long time to clear radiation. For me, it's been a year and 10 months. Congrats on NED!
  12. Thankfully, I have no real side effects now except for my eyelashes, lol. I am almost normal!
  13. Thanks, Ed. To answer your question, I started chemo and radiation on December 3, 2019 and ended on January 15, 2020. I had serious side effects from both and had to have emergency abdominal surgery on Valentines Day 2020. I started the targeted therapy Tagrisso in March 2020 (after allowing some post-surgery recovery time). I slowly improved over the next year and was NED in April 2021. I believe I am still clearing chemo and radiation from my system. My eyelashes fell out from chemo, grew back and still fall out to this day. Luckily my hair grew back. Because of pneumonitis and inflammation from radiation, my first scan in January 2020 was hard for the radiologist to read, but my oncologist was not surprised or concerned. I'm not sure I can answer your question about how chemo works on tumors, but all of the treatments I've undergone been effective. At this stage of your mom's treatment, no progression is a good thing! Chemo is cumulative (as is radiation), so regular scans will tell the story. Hang in there!
  14. I'm not sure how effective Nexium and Tums are for GERD. I was given a prescription for Protonix when I had acid reflux from chest radiation. I also eliminated dairy from my diet during that time. I believe others will recommend an air purifier in his room and also steam therapy, both of which are good ideas. I would also suggest checking outdoor air quality every day. I use the AirNow app. When air quality is unhealthy for sensitive groups, I can get shortness of breath that lasts an entire day. Also, have you considered seeing an ENT in case your husband has allergies/post-nasal drip? I had a dry cough that started last year, and it would wake me up at night. My pulmonologist diagnosed allergies, and Claritin really helps. Finally, you might want to consult with an integrative medicine physician and/or palliative care doctor since the cough is affecting quality of life for both of you. My integrative medicine physician (also an acupuncturist) works directly with my oncologist. I really liked acupuncture and found it very relaxing. Hope both of you get some relief!
  15. Have you spoken with her oncologist yet? What do they think? I had 6x chemo (carboplatin and taxol) plus 30x radiation and then started on a targeted therapy for my particular mutation. After being stable or improving for more than a year, I finally got to NED (No Evidence of Disease) this April. Before that, I saw a lot of "positive treatment response" or stable on my scans. Both of those terms are good. Definitely have her oncologist explain the scan report and their impression of how treatment is going.
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