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Judy M2

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Everything posted by Judy M2

  1. Your dad is in luck with Tagrisso, and I'm sure his doctor told you that. Be prepared for some initial side effects that everyone seems to go through, like fatigue, diarrhea and skin rash. These are manageable for most people but be sure to report side effects to his oncologist. A palliative care doctor can also help with quality of life issues like sleep and pain. For you, I recommend the private LUNGevity Facebook group Tagrisso (osimertinib) Patients & Caregivers Group, where newbies and veterans can get support. Try to keep an open mind about Tagrisso and take things one day at a time. Everyone is different and there are people on it for years. I've been on it since March 2020 after chemo and radiation and am NED since April 2021. Best wishes to your dad.
  2. Hi Janine, thanks for sharing your husband's incredible story. Treatments, even when successful, can leave us with undesired side effects long-term, but at least we are still here. As a matter of fact, I watched the recent Targeted Therapies presentation by cancerGRACE on Facebook. It was very informative and interesting to hear the participating oncologists' opinions about treatments and emerging biopsy and biomarker testing. I'm not active on their forums, as I already follow several private LUNGevity FB groups relating to my particular mutation (EGFR) and targeted therapy (Tagrisso). I hope you'll stay with us. Many of us (me included) have difficult experiences and it's important for people to know that it is possible to survive the setbacks.
  3. Jack, those of us on targeted therapy are advised to stay away from certain supplements, so as always it's best to check with your doctors.
  4. Piling on to both Michelle and Tom (and maybe Tom said this), I'd suggest that liquid biopsy be added to initial testing for faster turnaround. While circulating tumor DNA is not always expressed by tumors, if it is and testing shows a treatable gene mutation, targeted therapy can begin right away if the patient has a high symptom burden. I watched a video presented by the EGFR Resistors Group yesterday, and Dr. Joshua Bauml explained that liquid biopsy testing could be heading toward RNA also. In another presentation a couple of weeks ago by cancerGRACE.org, the oncologists mentioned that future biomarker testing could use other bodily fluids like urine and saliva, and even breath. The tests need to be developed, but this may be what the future looks like.
  5. @bbkg3, I agree with Michelle that your dad is in the right place for treatment. I am also Stage 3b but with a different, more common mutation (EGFR). Diagnosed at age 66 in October 2019 and finally NED in April 2021. Best of luck to your dad on this trial.
  6. My main tumor (lower left lung) was 6 cm and I also had lymph node involvement, so surgery wasn't an option for me. Chemo and radiation took care of everything. Admittedly, it wasn't easy but I made it through. Please know that there are Stage 4 survivors out there who are doing well. Emma, I hope you were able to have your wedding. I'd suggest that you try to engage your other family members into supporting your dad. Caregiving is very stressful, as you know, and it's an awful lot to carry the load all by yourself. Your parents are lucky to have your support.
  7. We are always shocked at our diagnosis of any type of cancer. But your mom is a survivor and your dad could be too. The waiting is so hard, but once the results of the testing come in, your dad will have a path forward. It's been almost 2 years since my Stage 3b diagnosis at age 66 and I'm now NED (in remission) after chemo and radiation, and I'm currently on a maintenance of targeted therapy for the gene mutation that is driving my LC. Like Babs, I don't plan on going anywhere anytime soon. I just want to caution you and @GawaMarkagainst Dr. Google. Statistics are outdated and do not necessarily reflect current treatment outcomes, and it can be depressing reading. We are individuals, not statistics. To get the most up-to-date information, I recommend the (virtual) LUNGevity International Lung Cancer Survivorship Conference coming up in August (link below). The GO2 Foundation, cancerGRACE.org and American Lung Association are also great resources for information. Hang in there and I hope you'll keep us updated about your dad's treatment plan. https://lungevity.donordrive.com/index.cfm?fuseaction=donorDrive.event&eventID=996
  8. I remember the old days (1970s) commuting to NYC in buses with no AC in the summer. Windows open and traffic would stop dead in the Lincoln Tunnel. In those days, gasoline still contained lead. Add post-9/11 exposure, and I don't wonder why I got lung cancer. If you're in the NY metro area, be very careful of the wildfire smoke coming your way from the West. That stuff is toxic too.
  9. And you should read the report to be sure your doctor doesn't miss anything. Ask questions if you don't understand something.
  10. You should definitely ask your primary physician or a pulmonologist for a chest CT scan. It is not expensive if insurance won't cover, around $125 or so. At a minimum, a chest Xray. Don't take no for an answer. I was mis-diagnosed twice (allergies and acid reflux) before being diagnosed in October 2019 (no family history). Persistence is the name of our game.
  11. I know that LUNGevity and GO2 Foundation have clinical trial navigators and most likely are up to date on the EGFR clinical trials available at the Dana-Farber Chen-Huang Center for EGFR Mutant Lung Cancers, but I think it's worth posting: https://www.dana-farber.org/chen-huang-center-for-egfr-mutant-lung-cancers/clinical-trials/
  12. I've had CT scans with and without contrast. Never had a reaction to the dye. If you think you're allergic to it, I don't think they have a choice but to avoid the contrast. I think a PET/CT scan is better for imaging the 1.8 cm nodule, but it is possible the PET won't show SUV/uptake, which could be considered an inconclusive result. In that case, your doctors would just watch the nodule by regular scans.
  13. Having a good relationship with your oncologist is important because they'll be your care team for a long time, hopefully. My oncologist is kooky but he does everything he can for his patients and expresses his love for all of us on a regular basis. That attitude really does transfer from him to us. I also recommend a port for infusions. It's a simple enough procedure, and the port can be used immediately after placement. Best of luck with Keytruda.
  14. Please ask for a liquid (blood) biopsy. It's less invasive than a tissue biopsy and the results come back in days rather than weeks for genetic/biomarker testing. If there is sufficient ctDNA (circulating tumor DNA), and the liquid biopsy shows a genetic mutation, you could be started on a targeted therapy drug without the need for a tissue biopsy or chemo. However, if there is no identifiable ctDNA, then a tissue biopsy would be necessary for a diagnosis. On Saturday I listened to a Targeted Therapies Patient Forum by Global Resource for Advancing Cancer Education (cancerGRACE.org), and there was consensus among the presenting doctors that liquid biopsy is their preferred first diagnostic tool, particularly if a patient has a high symptom burden. And a little off topic, but the future of liquid biopsy looks like when testing becomes even more sophisticated, other bodily fluids (such as urine and saliva) and even breath could be used. We're not there yet though. I agree that a second opinion would be beneficial.
  15. As lung cancer strikes more and more healthy younger people, the article below got me thinking. I've always thought that environmental factors are the culprit, and the urgent call for research in the article is well-founded. https://www.researchgate.net/publication/311844520_Carbon_dioxide_toxicity_and_climate_change_a_major_unapprehended_risk_for_human_health
  16. @hillham, glad you're feeling better! The side effects of entrectinib do look daunting, but I assume you'll get an EKG and echocardiogram before starting on it. I hope you find the TKI tolerable and it does the job for you. You may want to post your experiences under the NSCLC Group/Lung Cancer Mutations/ROS1 heading here so it's easy for others to find. Fingers crossed for you.
  17. Dona, you're in the twilight zone right now, and waiting can be excruciating. So let's take it one step at a time. Insomnia and anxiety are natural reactions to your shocking diagnosis. Your mind is going to race with all these thoughts. I was like that too for a while. You'll need to get a biopsy to determine what kind of cancer this may be and also whether a genetic mutation is the cause. This genetic/biomarker testing is essential but can take weeks to get results. I assume you'll be meeting with a pulmonologist soon too. The oncologist can prescribe something for insomnia/anxiety, so don't hesitate to ask. I've found lorazepam to be helpful for both. While you wait for all your test results, you may want to address those open items that are bothering you. It will give you something else to focus on and will be one less thing to worry about when you start treatment. Especially make an advance directive/health care proxy if you don't already have one. Every medical institution will ask for a copy. It's just good planning that everyone, even healthy people, should do. When I was diagnosed in October 2019, my primary physician told me that lung cancer isn't a death sentence anymore. Of course, I didn't believe her. But you know what, for me she was right. Today I am NED (No Evidence of Disease) and doing well, with my next regular PET scan coming up at the end of the month. All of us have been where you are today. Once you get your treatment plan, you'll be able to start moving forward.
  18. I think it was a combination of location (lower left lung) plus lymph node involvement.
  19. Pam, your brother should also get biomarker testing to determine if there is a gene mutation causing his NSCLC. My pulmonologist performed a bronchoscopy for biopsy and biomarker testing. These days, some mutations are treated with a targeted drug, even for early stage cancer. A chemo schedule depends on the diagnosis. For my Stage IIIB NSCLC, I had 6 infusions of carboplatin and taxol over the course of 6 weeks (one infusion per week), coinciding with 30x radiation over the same period. Unlike Tom, I was not a candidate for surgery. After that, I started a daily targeted therapy pill for my EGFR mutation in March 2020 and will stay on that drug indefinitely. One year later, I was NED (No Evidence of Disease), and my next PET scan is at the end of this month. I believe that all of the treatments have contributed to my survival.
  20. @BrianK, I personally do not believe you can starve cancer by following a high protein/low carb diet. I was on a keto diet for most of 2019, and while I lost weight, I was diagnosed with Stage 3b NSCLC in October of that year. But I do know people who follow different types of diets. Do whatever makes you comfortable.
  21. Paul, there is a lot of discussion about off-label or repurposed drugs. Some oncologists are open to them, some are not. Examples in the EGFR world are aspirin, atorvastatin (cholesterol), metformin (diabetes) and others. I asked my oncologist what he thought but since I'm NED he doesn't want to make any changes. It certainly doesn't hurt to explore these options. Glad you're looking for an integrative medicine physician.
  22. Judy M2

    CBC results

    I agree with @Rower Michelle, my blood work has been all over the place since I started treatments. Low RBC and WBC at varying times, and still on the low end of normal. And my oncologist does test for tumor markers (CEA) every 3 months. In April, my CEA level was in the normal range at 1.8. Before treatments started, it was 120. So when I do peek at lab results on the patient portal, I can tell from my CEA level how my PET scan results will be.
  23. Rick, I don't exactly remember when the nodule was first mentioned, but I think it was found after chemo and radiation were completed. It wasn't picked up on my initial CT scan when I was diagnosed in October 2019. It's probably been a year now that it's being monitored. My next PET scan is at the end of this month. I really see Michelle's point about radiologists needing to see more of us on targeted therapy. I hadn't thought about it before but it makes sense. Even some oncologists don't have much experience with targeted therapies yet.
  24. I also have a 6 mm nodule in my upper right lung but I'm considered NED. After enduring chemo and radiation and now on an EGFR targeted therapy (Tagrisso), I have to believe that all of the treatments have been effective. I don't worry about this nodule but my oncologist does watch it for changes. It is too small to be characterized on a PET scan (every 3 months).
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