newly diagnosed lung cancer

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  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    I don't see anyone's cancer as minor. Questions and fears are just as real for the stage 0 (Adenocarcinoma in situ) as a person like me stage 4b with an extremely poor prognosis. By staying engaged I believe not only do you help ease your fears you may help others feel they're not alone and what they're feeling is normal.

    6 weeks is actually early. Follow up scan is recommended at the 8 to 12 week point. But earlier can help identify potential side effects like radiation induced pneumonitis (inflammation) that start a about 6 weeks post SBRT. It's just important to know that some side effects like Inflammation, edema, or fibrosis may mimic tumor progressio. This is called pseudoprogression. SBRT is usually very successful. I'm sure they told you that but it is true.

    Definitely not a professional. I just don't want to enter a room or discussion without knowing what the topic may be and the possible answers beforehand. I read everything I can about my own condition And treatments . Keeps me feeling like I'm in charge.

  • BrendaHenry
    BrendaHenry Member Posts: 23 Member

    Hey! Are you the one who's doing all that walking in the snow? You must be in great shape! I used to think my mile and a half to 2 mi with something. I'm on oxygen right now. I don't know if that's ever going to change, but I used to enjoy walking before they put me on this oxygen. I guess you can say that I'm just waiting to breathe normally again. I miss walking so much. I have a floor bicycle that I use twice a day to try to keep my core muscles up, but it just isn't the same as getting out there in nature and enjoying the walk outside. I hope things work out for you as far as your lung cancer. I also hope the same for myself and anyone else who's reading our posts.

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    hey db, how ya doing? Saw my thoracic surgeon yesterday and might not be able to have surgery due to the p-acne’s infection in my failed shoulder replacement. He never even heard of p-acne’s but he is not a replacement guy so that’s cool. They are just figuring out that it is the reason for most shoulder replacement failure. Loosens prosthetic and causes lots of pain lol. If I can it will be chemo, surgery,chemo, immunotherapy, but he wants to take the whole lung because of the nodule involvement. Kind of bummed about that! Know any people who have had a right pneumonectomy, and how they are doing or did? My mom never really felt good after hers, and I remember her saying don’t ever let them take out your whole lung, so that’s floating around my head this morning. No brain Mets so that good. Meet my oncologist and radiation oncologist next week, still waiting on genetic testing, should be. Soon. So that’s my story. Hope you have a great weekend. Batman

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    the surgeon a kid? :) A younger physician might not be familiar with the name Propionibacterium acnes, as it was reclassified as Cutibacterium acnes some time ago. I personally don’t like the name change, as it emphasizes the bacterium’s skin association, downplaying the serious risk it poses when it invades deeper tissue. It’s well-known for being associated with implant-related infections. My wife has had shoulder, hip, and knee replacements, so I have an idea of what that can entail.

    The infection will probably require consultations with an orthopedic surgeon or an infectious disease specialist before surgery. If they clear you for lung surgery, I believe a lobectomy could be safer than a pneumonectomy, particularly in the presence of a C. acnes infection. A lobectomy is less invasive, reducing surgical trauma and the associated risks of complications or infection. Removing an entire lung can temporarily weaken the immune system, increasing the vulnerability of the surgical site to infections like C. acnes. Additionally, a lobectomy generally allows for a faster recovery, which may further reduce the risk of a deep tissue infection.

    I'd also recommend discussing the options of adjuvant or neoadjuvant therapies. Neoadjuvant immunotherapy, chemotherapy, or chemoradiation might shrink the tumor and lymph node involvement, potentially making a lobectomy more viable. Post-surgery, adjuvant SBRT to the margins and a lymph node dissection are worth discussing. Together with adjuvant immunotherapy or chemotherapy, these measures can significantly reduce recurrence risks.

    Ultimately, I would still recommend a second opinion, regardless of the current surgeon’s recommendation. Talk this over with the radiation oncologist and medical oncologist. The more eyes and perspectives you have, the better.

    As long as KC loses, it will be a great weekend. :) It's in the 70s again, so it's time to start gardening and working on the boat. Good luck with the appointments, and hopefully no more walking in the snow!

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    hey db, I’m with you on the superbowl lol! I have told every doctor throughout this entire process that I have an untreated c- infection, dont like the name change either, and not one of them knows what I’m talking about??? I know I will not be able to have that surgery without treatment for my shoulder, I’ve had terrible chronic pain for the last 10 plus years. I cant sleep on my left side period! I was surprised that a thoracic surgeon with 26 years of experience had never heard of this? I will definitely get a second opinion. I checked out his history and he is really good, but you would think he might have seen a similar thing in all his years. Most doctors don’t know about it though. He is speaking with an infectious disease doctor so we will see. Still waiting on the genetic testing. I already have a bunch of autoimmune diseases graves, vitiligo, another one I can’t remember lol, plus I still test positive for lyme. I also had ecoli in2010 and lost a testicle to it. I didn’t think I would get lung cancer as I have had every other weird thing lol. Meeting my oncologist and radiation oncologist next week so I will have some more input. I surely don’t want a pneumonectomy . My mom never really recovered from it, plus I would have to have my thyroid removed as it is already causing swallowing issues and with the shift of organs I might not be able to breathe eat Etc. He wants to do neoadjuvant chemo then surgery then chemo and immunotherapy so it is a nightmare lol, but I’ll keep plugging away at it. Thanks again for the advice. Batman

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    I know that the potential treatments for c acne seemed severe when they explained it to us but still, why wouldn't they treat it? It has to be hard to live with? They may want to treat the infection first. Did you have these autoimmune problems before the replacement?

    Man good luck. Let me know what the bug doc says

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    hey dive buddy. The infectious disease doctor says no way to the surgery with the infection. The reason I haven’t had it treated is I saw one of the best shoulder guys in the country a few years ago and he told me that there was not enough bone to put a third shoulder replacement in and I would only have a reverse shoulder replacement option. Reverse shoulder replacement is terrible and he would only recommend it to people in their late 70 s or eighties because it is useless. You can only lift 10 lbs for the rest of your life and you can dislocate it by wiping your but or scratching your back. They are really only for pain easement. Plus the procedure takes about a year . You get two months of I’ve antibiotics then they take out the old one and put in a biological spacer for 4 months, then if it is clear they put in the new replacement. Then you start pt for 6 months all really very painful lol. It would have left me in a worse position than I have been for the past few years. Now I can do stuff below the waist ie a little raking, shoveling, sweeping, Etc. With the reverse replacement I would have less use of my arm( long explanation) lol. So no surgery . I have EGFR exon 19 with TP53 so good and bad lol. She wants to do chemo/ radiation for a few months followed by immunotherapy ( Tagrisso) . I’m on board but doing research I can’t find any reason for the radiation at this stage. Most just do chemo then immunotherapy, so I will ask the radiation doctor tomorrow when I meet him.by the way my shoulder infection showed really big and bright on my pet scan and they saw a third nodule metastasis so I think I’m n2 with that. I really couldn’t get the surgery anyway with the bad shoulder it would have been a nightmare lol. So love to hear your advice and impressions. As long as the tp53 doesn’t inhibit the immunotherapy I could be around for a while. What do you think about the radiation at this point. I would think it would be something to hold in reserve in case it started growing or never stops. Thanks for listening db ttyl Batman

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member
    edited February 13 #89

    We ended up at the Andrews Institute because the doctor my wife was seeing wanted to start with a reverse shoulder replacement. I told him he was nuts, and we went to Andrews instead.
    I was pretty sure they wouldn't operate, but I was hoping they had a new way to treat the infection.

    EGFR exon 19 mutations are treatable with TKIs (tyrosine kinase inhibitors). Tagrisso (osimertinib) is a TKI, not an immunotherapy. Currently, no immunotherapy drugs are FDA-approved as a first- or second-line treatment for EGFR-positive lung cancer.

    TP53 mutations occur in well over half of all cancers. I have four TP53 mutations—my original genetic testing came back TP53-positive, and subsequent testing provided more details.

    While there’s a chance a TKI could eliminate cancer, that’s not what they are designed to do. TKIs work by stopping or slowing cancer growth, not necessarily by killing it.

    Chemotherapy, on the other hand, kills cancer cells by targeting fast-growing cells. This is why it works well in combination with radiation therapy. Radiation targets the cancer and damages its DNA—this damage initially causes the cancer to grow faster for a short time. If the DNA is damaged enough, the cancer dies. Chemotherapy enhances this effect by attacking cancer cells that are struggling to repair themselves, making the treatment even more targeted.
    This is why chemoradiation is the standard treatment for inoperable lung cancer. Skipping radiation at this stage can have GRAVE consequences.

    TKIs are typically started after chemoradiation. In your case, they’re intended to keep any stray cancer cells inactive and microscopic.

    Your cancer should be very treatable, and after the initial treatment, it will feel more like managing another chronic condition rather than actively fighting cancer.

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    yeah. In the TNM staging system, the N category is based on location, not the number of affected lymph nodes.

    N2 means the cancer has spread to ipsilateral (same side) mediastinal lymph nodes (located in the center of the chest, between the lungs) or subcarinal lymph nodes (just below the tracheal bifurcation). I posted a diagram from the 9th edition earlier.

    N3 includes contralateral (opposite side) mediastinal or hilar lymph nodes and supraclavicular lymph nodes (above the collarbone, regardless of side).

    Interesting note: In the previous (8th) edition, these were classified as distant metastases (M1a) and Stage IVA. However, survival data supported curative intent treatment, leading to their reclassification as Stage IIIC in the 9th edition.

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    Hey db thanks for the info on the tki, and about the radiation, do you know any where I can find a good journal article on the subject all the ones I see don’t mention the radiation just chemo then tagrisso ? Also does my diagnosis change with added lymph node involvement? Yeah don’t ever let your wife get a reverse shoulder replacement, absolute garbage. Yes it was intensely bright on the pet scan looked like shoulder cancer lol. Had ultrasound on my thyroid and seeing my endocrinologist next Tuesday my oncologist said often cancer in the thyroid will not show up on a petscan so I might have to have a biopsy on that additionally? Who knows maybe I’ll be a lucky person and live for awhile from what I have read should have 2- 3 years maybe less but maybe way more. If someone tells me I only have 2 years I’ll live five just to piss them off lol. You were talking about the 70s u lucky sob. We are getting snow and another 6 on Sunday plus maybe an ice storm too. We had an ice storm up here about 30 years ago and I lost power for 17 days man that blew lol. Going to radiation doctor this afternoon and shopping after try to beat the rush of people panicking about the storm. I’m not getting a lot in case we lose power for days on end. I always wonder why people go crazy buying everything when there is a good chance they will lose it because of power outages?? Enjoy your day db I will ttyl Batman out!

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member
    edited February 14 #92

    Currently, the standard of care for patients with unresectable stage III or earlier non-small cell lung cancer (NSCLC) with EGFR mutations typically involves definitive concurrent chemoradiotherapy (CRT) followed by consolidation tyrosine kinase inhibitor (TKI) therapy.

    Links first, as they sometimes don't work correctly here. Here are a few—there are literally thousands.

    References:

    🔗 https://pmc.ncbi.nlm.nih.gov/articles/pmid/31277121/

    Hung MS, Wu YF, Chen YC. Efficacy of chemoradiotherapy versus radiation alone in patients with inoperable locally advanced non-small-cell lung cancer: A meta-analysis and systematic review. Medicine (Baltimore). 2019 Jul;98(27):e16167. PMID: 31277121; PMCID: PMC6635168.

    🔗 https://www.nejm.org/doi/full/10.1056/NEJMoa2402614

    Lu S, Kato T, Dong X, et al. Osimertinib after Chemoradiotherapy in Stage III EGFR-Mutated NSCLC. N Engl J Med. 2024 Aug 15;391(7):585-597.

    🔗 https://doi.org/10.21037/tlcr-20-1081

    Orlandi E, Przypisany R, Peeters S. Combining radiotherapy with targeted agents in non-small cell lung cancer: Mechanisms and clinical evidence. Transl Lung Cancer Res. 2021;10(5):2141–2157.

    Lymph Node Staging

    The number of lymph nodes does not change your N staging—only their location does.

    N1 remains N1 whether 1 or 20 lymph nodes are involved, as long as they are within ipsilateral peribronchial, hilar, or intrapulmonary regions.

    The associated stage depends on other TNM factors (tumor size, metastases, etc.).

    Radiation was the easiest treatment I received. 5 days and done easy peasy. I experienced no side effects during the treatments.

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    thanks for the info, I should have been able to find some articles myself brain fog I guess? Lol I’m getting radiation 5 days a week for 6 weeks and chemo once a week for 6 or 8 weeks then the tagrisso, that’s the plan so far. Been up all night with the old brain racing, oh well it happens. Thanks again, Batman

  • OneDayAtATimexxx111
    OneDayAtATimexxx111 Member Posts: 18 Member

    hey db sorry to bother you but I have a quick question? The research I’m doing indicates a longer survival time with just radiation and tagrisso vs chemo radiation with tagrisso some saying the addition of the chemo. Will shorten my life especially in people with the tp53 mutation. Should I question my oncologists about this. Radiation is targeted where as the chemo kills everything. With my graves and Lyme and vitiligo and one other autoimmune I can’t remember at this moment. I would like your input and reason at why the chemo. I’m trying to find information on comparisons between the chemo radiation and tagrisso vs just radiation and tagrisso. Thanks

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    The Tagrisso is not what is going to kill your cancer—the chemoradiation is. The idea that a TP53-mutant cancer’s overall survival would be shortened by chemoradiation or chemotherapy goes against literally millions of cases observed in clinical practice.

    This treatment approach is backed by decades of proven efficacy. In the 1920s and 1930s, aside from surgery, radiation therapy was essentially the only option for cancer treatment. Chemotherapy came onto the scene later, and by the 1950s, the combination of chemotherapy and radiation was under serious study. By the 1970s, the benefits of chemoradiation had been proven so effective that it became the standard of care.

    By the way, I have four separate TP53 mutations and I’m doing just fine survival-wise.

    Nice to hear there's a plan in place. Do you know what the chemotherapy will be? Have they discussed using the radiation to treat your c Acne? Yours would be a perfect use for a forgotten practice.

    I'll write a proposal for your radiation oncologist if you like. I think it could do you a world of good to combine the radiation you're already receiving with antibiotics to kill the c acne once and for all.

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    This proposal is for your radiation oncologist and infectious disease specialist. Because it involves a non-standard approach to treatment, it needs to be reviewed by the tumor board before it can be considered.

    Proposal: Utilizing Incidental Radiation Therapy to Address Cutibacterium acnes Infection During Ongoing Cancer Treatment

    Background:

    In the early 20th century, low-dose radiation therapy (LDRT) was employed to treat various bacterial infections, including pneumonia, osteomyelitis, and gas gangrene. This approach leveraged radiation's anti-inflammatory properties and its capacity to disrupt bacterial replication, particularly in biofilm-associated infections. The practice declined with the advent of antibiotics in the 1940s, but historical data suggest that radiation could effectively reduce bacterial load and inflammation in deep-seated, antibiotic-resistant infections.

    Relevance to Current Case:

    The patient is currently receiving conventional radiation therapy for cancer and concurrently suffers from a Cutibacterium acnes infection linked to a failed shoulder replacement. Given that the shoulder joint is non-functional, traditional concerns about radiation-induced joint damage are less pertinent. This unique scenario presents an opportunity to potentially mitigate the infection by extending the existing radiation field to encompass the affected shoulder area, thereby avoiding additional invasive procedures.

    Rationale for Consideration:

    1. Challenges of Prolonged Cutibacterium acnes Infections:

    - Cutibacterium acnes is known for forming resilient biofilms on implants, rendering infections difficult to eradicate with antibiotics alone.

    - Chronic infections can lead to severe complications such as persistent pain, osteomyelitis, and the development of fistulas.

    - Standard treatments often involve surgical intervention and extended antibiotic regimens, which carry significant morbidity and may not guarantee resolution.

    2. Potential Benefits of Radiation Therapy:

    - Biofilm Disruption: Radiation may weaken the protective biofilm of Cutibacterium acnes, enhancing the efficacy of antibiotics.

    - Anti-inflammatory Effects: Radiation can reduce inflammatory responses, potentially alleviating pain and improving tissue health.

    - Synergistic Potential: Combining radiation with antibiotic therapy might lower bacterial load more effectively than antibiotics alone.

    - Minimal Additional Risk: Given the existing non-functionality of the joint and the current radiation treatment, expanding the radiation field could pose minimal additional risk.

    3. Risk Assessment:

    - Soft Tissue Fibrosis: While radiation can cause scarring, this is less concerning in an already non-functional joint.

    - Local Toxicity: Potential risks include skin irritation or delayed wound healing.

    - Fistula Formation: There is a rare possibility of creating abnormal connections if the infection is not fully resolved.

    Conclusion:

    This proposal suggests considering the expansion of the current radiation treatment field to include the infected shoulder area as an adjunct to ongoing antibiotic therapy. Given the patient's unique circumstances, this approach may offer a viable method to address the persistent Cutibacterium acnes infection with potentially minimal additional risk. We welcome your expert evaluation of this proposal and any insights into its feasibility based on current clinical practices.

    Citations:

    1. Calabrese EJ, Dhawan G. How radiotherapy was historically used to treat pneumonia: Could it be useful today? Yale J Biol Med. 2013;86(4):555-570. Available from: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3848110/

    2. Oppenheimer A. Roentgen therapy of infections. Milbank Mem Fund Q. 1943;21(1):13-27. Available from: https://www.jstor.org/stable/3348013

    3. Prekumar K, et al. Biofilm formation by Cutibacterium acnes: Pathogenesis and clinical implications. Infection and Immunity. 2020;88(10):e00753-20. Available from: https://journals.asm.org/doi/10.1128/iai.00753-20

    4. Dhawan G, Kapoor R, et al. Radiotherapy for non-malignant disorders: Current concepts and clinical results. Antimicrobial Resistance & Infection Control. 2020;9:75. Available from: https://aricjournal.biomedcentral.com/articles/10.1186/s13756-020-00775-w

  • jojo1965
    jojo1965 Member Posts: 1 *

    hi im new here i just recently got diagnosed with stage 4 lung cancer im trying to fight real hard but i am noticing that there is nothing on teaching you how to die and im scared so any help would be appreciated im here to learn plz and thank you just by telling me what helps to keep you faith in healing please and thank you

  • eDivebuddy
    eDivebuddy Member Posts: 102 Member

    Hello jojo1965,

    I’m really sorry you’re going through this. A cancer diagnosis is overwhelming, and a stage 4 diagnosis can be absolutely terrifying. I completely understand the fear and uncertainty that come with it. But I want you to know you are not alone. Many of us here have walked this road, and some of us were given grim prognoses but are still here years later.

    When I was diagnosed, I was told things didn’t look good. My lung cancer had spread to my liver, neck, brain, and eventually my skin. At one point, I was told I might have only 30 days left and was admitted to the ICU for emergency chemotherapy and a craniotomy. Well, I’m now years past what anyone expected. I’m still here, still living, and still enjoying my life.

    There’s always hope. Hope for more time, for good days, and for treatments that can work. Medicine is constantly evolving, and many people with stage 4 lung cancer live far longer than they were first told, especially with newer treatments like immunotherapy and targeted therapies.

    As for faith in healing, I think it’s different for everyone. For me, it helped to stay active in my care, keep asking questions, and never assume I was out of options. It also helped to focus on today, not the statistics. Just taking things one step at a time. Prognoses are used to guide treatments, not to predict the future for an individual.

    And about fear, I get it. I’ve had those moments too. But you don’t have to go through this alone. There’s a whole community of people here who understand, who will listen, and who will help however they can.

    You’re not just a statistic. You are YOU, and that matters. You’re still here, and that means there’s still time to live.

    Sending you strength,
    eDiveBuddy