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Judy M2

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Everything posted by Judy M2

  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.
  16. Part of your testing post-surgery will--or should--be biomarker testing to determine if you have a gene mutation that is driving your LC. Post-surgery, it's possible you'll be given some chemo to "clean up" any errant microscopic cancer cells. It has also become the standard of care to be treated with a pill if you have a targetable gene mutation. I don't want to say that getting LC is good by any means, but it's fortunate they caught yours at Stage I, when it's more treatable. At Stage IIIB, I wasn't a candidate for surgery and instead had chemo and radiation and now take a daily pill for my EGFR mutation. This month is my 2-year cancerversary and I'm finally NED. I consider myself very lucky. Don't hesitate to get a second opinion. I know all the folks here will agree with that. There are many others who've had lobectomies and are doing well today. They will be along to offer you some reassurance and tips and tricks. Take care.
  17. I haven't had the procedure but Tagrisso should help after the fluid has been drained. Plenty of people report that Tagrisso dried up their fluid completely. Two weeks is a short time, so give it time to work. For me, chemo and radiation resolved the fluid in my left lung. Best of luck with the procedure.
  18. I'm wondering whether it's acid reflux, particularly if he has nausea and antihistamines haven't worked. Perhaps try omeprazole or ask his doctor for a prescription for Protonix. I had acid reflux when I had esophagitis and took Protonix. If he goes to an ENT, they can scope his throat and diagnose which condition he has and how best to treat it. Best of luck.
  19. Judy M2

    Tagrisso Rash

    I should post an update about my rash. The dermatologist said that a red, itchy rash is treated as eczema. If there were bumps, it would be treated as acne. He gave me a prescription for a topical steroid and it worked great. Now I just use Aveeno Eczema Therapy on the healed areas, and I also bought Aveeno skin relief body wash. When I get a flare-up, I'll just use the topical steroid until the area heals. For all normal skin areas, I just use my regular moisturizer.
  20. Most nurses will not explain PET results. That's the oncologist's job. You need your biomarker test results. I had chemo and radiation, and with the location of your lymph nodes, esophagitis from radiation would be very likely. Keep pressing for your biomarker results.
  21. And a welcome from me too. I am also EGFR Exon 19 and have taken Tagrisso since March 2020 after chemo and radiation. NED since April 2021. I don't usually mention Tagrisso side effects initially because you may not have any. Mine are manageable and some come and go. I do suggest joining the following LUNGevity Facebook support groups: Tagrisso (osimertinib) Patients & Caregivers Group LUNGevity EGFR Group LUNGevity Targeted Therapies Group LUNGevity EGFR Resisters Lung Cancer Patients Group There's lots of valuable knowledge among the members, as well as posts about current research. I hope you see some progress on your upcoming scan!
  22. I have worn good KN95 masks from the beginning. I hate cloth masks that sit right on my mouth. I used to do my daily outdoor walk wearing the KN95 until I was vaccinated. Powecomm makes a good non-counterfeit mask. You can usually make a small knot in the ear straps if the mask isn't tight enough.
  23. Debbie, first of all, congratulations for a successful outcome of your surgery. Remission is a great status. Although I wasn't a candidate for surgery, the side effects of chemo caused me to need emergency abdominal surgery on Valentines Day 2020. The type of surgery I had is life-saving and often results in lingering trauma. Recovery was painful, long and difficult, and I was left with a permanent, invisible disability. I don't really know how I was able to recover my pre-diagnosis state of mind. The months after surgery are still a blur of pain to me. But every day I was able to get a little stronger. I've had chemo and radiation and am now on a targeted therapy, NED since April 2021 and feeling good. I'm well aware that a recurrence is possible, but now I just live one day at a time. If I had needed it, I wouldn't hesitate to seek therapy, and I hope you'll consider it. As lung cancer patients, we all experience trauma from our diagnosis, treatments and side effects. I'm almost 2 years from a Stage IIIB diagnosis and, except for Covid, my life is mostly back to normal. I hope you can get there too.
  24. Hi Cordelia, good for you being your own advocate! I am also Exon 19 and have taken Tagrisso since March 2020. My Stage IIIB lung cancer was misdiagnosed for a few months too. And I also have a Caring Bridge site that has been very useful updating family and friends since my shocking diagnosis in October 2019. I've found Tagrisso to be very tolerable with manageable side effects that come and go. There's a lot of discussion about when best to take it. I take mine at bedtime. There are a few closed LUNGevity Facebook groups you might find helpful. There are stories of survivorship there, plus they are great resources for information--particularly new research that is constantly being published. Tagrisso (osimertinib) Patients & Caregivers Group LUNGevity Targeted Therapies Group LUNGevity EGFR Group LUNGevity EGFR Resisters Lung Cancer Patients Group I had chemo and radiation before starting Tagrisso, and any side effects of Tag are easier than those treatments. I am happy to say I am now NED (No Evidence of Disease) since April of this year. Best of luck on this great drug!
  25. It took months to get my Stage IIIB diagnosis too after being mis-diagnosed twice. The time waiting for test results, particularly biomarker testing, and treatment can be interminable, especially with such a high symptom burden. Your mom seems to be doing all the right things. Has she spoken to your dad's pulmonologist? I'm wondering whether nebulizer treatments like they do for COPD patients might help. She might want to get some Ensure for easy calories. Sooner or later, that can be the main source of nutrition. I hope you can all hang in there. This disease is a marathon and there are ups and downs along the journey. But you all have a wonderful new addition to motivate and look forward to. Congratulations to you and take care of yourself. P. S. It occurs to me that morphine may be helpful to calm your dad's coughing. Hospice prescribes it for uncontrollable coughing and air hunger. A palliative care doctor can prescribe morphine if it's suitable for your dad. I always recommend a palliative care doctor anyway to help with treatment side effects.
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