edivebuddy

Sorry to hear about your job and at such a hard time. I do not know first hand, But The NC Navigator Consortium can help. They're free, unbiased, and federally trained. (980)-256-3782 https://ncnavigator.org/ They'll have all the information about COBRA, Medicare,Medicaid, and the health care market. I don't know what stage your wife is but stage 4 lung cancer qualifies your wife for SSDI which makes her eligible for Medicare. those Navigators may be able to help with that. The cancer center your wife goes to should also be able to help with getting help with copays for Tagrisso. You can try yourself by contacting AstraZeneca but the cancer center is going to have loads of experience. Mine did nearly everything for me with Merk. Now they provide up to 25k a year for copay assistance with keytruda. Here's AstraZeneca's Access 360 website https://www.myaccess360.com/patient/tagrisso-osimertinib/patient-affordability.html AstraZeneca Access 360 hotline 1-800-292-6363

i thought this might be a good visual way to understand the explosion in lung cancer treatment options. I keep a list of systemic treatments for lung cancer. Here a count by decade of FDA approval. Mind you the 2020s aren't even half over yet. 1959: Cyclophosphamide (Cytoxan) (CTx - DNA alkylation) 1965: Vinblastine (Velban) (CTx - Microtubule inhibition) 1978: Cisplatin (CTx - DNA cross-linking) 1983: Etoposide (Toposar/Vepesid) (CTx - Topoisomerase II inhibitor) 1987: Ifosfamide (Ifex) (CTx - DNA alkylation) 1989: Carboplatin (CTx - DNA cross-linking) 1994: Vinorelbine (Navelbine) (CTx - Microtubule inhibition) 1995: Irinotecan (Camptosar) (ICTx - Topoisomerase I inhibitor) 1998: Paclitaxel (Taxol) (CTx - Microtubule inhibition) 1999: Docetaxel (Taxotere) (CTx - Microtubule inhibition) 1999: Gemcitabine (Gemzar) (CTx - Pyrimidine analog) 2003: Gefitinib (Iressa) (TT - EGFR) 2004: Erlotinib (Tarceva) (TT - EGFR) 2004: Pemetrexed (Alimta) (CTx - Folate pathway inhibition) 2006: Bevacizumab (Avastin) (Bio - VEGF-A) 2007: Topotecan (Hycamtin) (CTx - Topoisomerase I inhibitor) 2011: Crizotinib (Xalkori) (TT - ALK, ROS1) 2012: Nab-paclitaxel (Abraxane) (CTx - Microtubule inhibition) 2013: Afatinib (Gilotrif) (TT - EGFR, HER2, HER4) 2014: Ramucirumab (Cyramza) (Bio - VEGFR-2) 2014: Ceritinib (Zykadia) (TT - ALK) 2015: Nivolumab (Opdivo) (IT - PD-1) 2015: Pembrolizumab (Keytruda) (IT - PD-1) 2015: Atezolizumab (Tecentriq) (IT - PD-L1) 2015: Necitumumab (Portrazza) (Bio - EGFR) 2015: Osimertinib (Tagrisso) (TT - EGFR) 2017: Brigatinib (Alunbrig) (TT - ALK) 2017: Dabrafenib (Tafinlar) (TT - BRAF) 2017: Trametinib (Mekinist) (TT - MEK) 2018: Durvalumab (Imfinzi) (IT - PD-L1) 2018: Dacomitinib (Vizimpro) (TT - EGFR) 2018: Alectinib (Alecensa) (TT - ALK) 2018: Larotrectinib (Vitrakvi) (TT - NTRK) 2020: Capmatinib (Tabrecta) (TT - MET) 2020: Ipilimumab (Yervoy) (IT - CTLA-4) 2021: Cemiplimab (Libtayo) (IT - PD-1) 2021: Selpercatinib (Retevmo) (TT - RET) 2021: Pralsetinib (Gavreto) (TT - RET) 2021: Tepotinib (Tepmetko) (TT - MET) 2021: Mobocertinib (Exkivity) (TT - EGFR) 2021: Lorlatinib (Lorbrena) (TT - ALK, ROS1) 2021: Sotorasib (Lumakras) (TT - KRAS G12C) 2021: Amivantamab (Rybrevant) (BsAbs - EGFR, MET) 2022: Tremelimumab (Imjudo) (IT - CTLA-4) 2022: Adagrasib (Krazati) (TT - KRAS G12C) 2022: Trastuzumab deruxtecan (Enhertu) (ADC - HER2) 2023: Relatlimab (Opdualag) (IT - LAG-3) 2024: Repotrectinib (Augtyro) (TT - ALK, ROS1, NTRK) 2024: Zenocutuzumab (Bizengri) (BsAbs - HER2, HER3 for NRG1)

Zenocutuzumab (Bizengri) ( a bispecific targetinf HER2 & 3 for NSCLC harboring NRG1 fusion was granted accelerated approval. https://www.fda.gov/drugs/resources-information-approved-drugs/fda-grants-accelerated-approval-zenocutuzumab-zbco-non-small-cell-lung-cancer-and-pancreatic

PET scan cannot confirm malignancy, it can only raise suspicion. Did they perform a rapid on-site evaluation (ROSE) of the biopsy? My last two biopsies were negative, despite SUVs of 6 and 7. If it is cancer, make sure genetic testing is completed before starting any treatments. If there's not enough tissue this time, they can perform a liquid biopsy. They can also test your original tissue samples if genetic testing wasn’t done initially. Why did you lose so much weight? I lost so much that my doctor bluntly told me that if I wanted to live, I needed to gain weight. I had already lost quite a bit before starting any treatments, and chemo didn’t help. But I managed to put on over 50 pounds and only had to go in for fluids twice. I thought I was doing great with hydration, but it seems I wasn’t.

Great news! Keep stringing them together and enjoying every bit life offers.

Hopefully the new treatments are effective for many years.

I'm really sorry you're going through this. it’s such a difficult and deeply personal experience. It does seem strange and frustrating to be presented with contradictory information, so I want to share what I’ve learned: Surgery remains the best option for achieving long-term survival in lung cancer, especially when the tumor can be completely removed. There’s no real debate about this. surgery offers the greatest chance of long-term survival when paired with other treatments as needed. The addition of adjuvant therapies, like chemotherapy or immunotherapy, can further improve outcomes by targeting any remaining cancer cells after surgery. Immunotherapy, in particular, has shown incredible results for some patients, with durable remissions that wouldn’t have been possible before. But, and this is important, it doesn’t work for the majority of patients, which makes it less reliable when used on its own. I hope this helps you navigate some of the mixed messages out there. If you have specific questions or concerns, don’t hesitate to ask or discuss them with your care team—even if it means asking the same thing in 10 different ways. While we can share what we know, offer support, and provide alternative points of view, only your care team has the specific knowledge to guide your personal care.

"It’s important to understand that oxygen is essential for life, and we are all dependent on it. Her shortness of breath is a signal that her body needs extra help right now. Supplemental oxygen is not something you become 'dependent' on in a harmful way. Instead, it ensures her body gets the oxygen it needs to function and heal properly. Using oxygen sparingly or withholding it can actually worsen her condition over time. When the body operates with low oxygen levels, it struggles to heal and perform vital functions. Paradoxically, by avoiding supplemental oxygen, she might be increasing the likelihood of needing it permanently in the future.

Hopefully you had a great Thanksgiving and didn't spendtoo much time thinking about this. Why did they do the most recent genetic tests?if there's no progression I don't think they'll switch to the Targeted therapy. *Don't fix what ain't broke. But if they did it because they did see progression then indeed they'll probably switch. Crizotinib (Xalkori), Lorlatinib (Lorbrena) and Entrectinib (Rozlytrek) are the current ROS1 treatments I know of. Crizotinib is usually the first they try because it's been around the longest.(2011) . Lorlatinib and Entrectinib are newerc2018 & 2019. They have a better ability to cross the blood brain barrier. They may also treat cancers that develop a resistance to Crizotinib like G2032R. I have no personal experience with these treatments so hopefully someone else has some input for you

Thanks Happy Thanksgiving to you as well. Number 5 since my IVb diagnosis.

Sorry you're going through this. It would have been way out of the normal to think of lung cancer without a significant Risk factor. Even with screening becoming more commonly the majority of lung cancers are found incidentally. A significant portion with a standard chest xray. Mine was originally found incidentally on an x ray. 2 years prior it was not on a ct. There's no way of knowing if your symptoms were lung cancer all along or they led to its development. It's normal to be scared. So much is just unknown. But lung cancer treatments have come a long way. Tagrisso is truly a miracle. What was once a death sentence can now be treated nearly like a chronic disease for quite a long time even over 10 years for some. I've been hanging around over 4 years stage 4b. Not only Tagrisso but keytruda. And new treatments are always just over the horizon. The MARIPOSA 2 trial looks really promising MSK is one of the top cancer centers in the country. They have the full compliment of services including counseling. You can tslk ti a patient navigator to help you with every strp.if your treatment. Patient Representative Department 212-639-7202

This is exactly why a specialist is best. An oncologist thinks that if steroids help it's the immunotherapy. I'm sure a radiation oncologist would treat moderate to severe radiation induced dyspnea with the exact same steroids.

What types of treatment have you tried so far? Ive had myalgia from keytruda. In both thighs right above the knees. It was treated with diclofenac patches. Not 100% controlled but I don't notice it much any more.

Sorry you are going through this and at such a young age too. You can definitely lead a normal life. I can't drive because of my brain tumors and subsequent treatments. But I can do just about everything else that doesn't require peripheral vision. I'm 4b for over 4 years now ans still enjoying life. Some may be able to offer advice on side effect if you can provide some details. Alectinib is mm metabolized by CYP3A4 so it's important not to take any supplements or drugs without going over then with the oncologist first. https://www.consumerlab.com/answers/grapefruit-juice-supplements-cyp3a4-enzyme/supplements-cyp3a4-enzyme/

Sorry to hear this. Are you being seen at the VA?