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Showing content with the highest reputation since 12/28/2020 in Posts

  1. Our medical world grows in complexity. There are now doctors with titles like thoracic oncologists and interventional radiologists. All this specialization has a place in our increasingly convoluted world of unpronounceable drugs and obtuse procedures. Amid this world of complicatedness toils the general or family practice physician. In my mind, they are the most important physician in the medical system. Why? Last night at about 7:30 PM, I was notified that my first dose of COVID vaccine would arrive at my GP's clinic today. Moreover, the practice nurse would contact me today (and did) s
    6 points
  2. Well, last Thursday, here in NC, due to CDC pressure the Governor changed the phase 1 to include all folks 65+. That afternoon I went online to get an appointment and the earliest I could get was Feb 24th for the first shot and Mar 17th for the second. At least I'm locked and loaded for that. I'm not concerned about the trials. Normally they take years because they are so expensive that companies choose to spread the cost over time to protect cash flow. In this case the government picked up the tab and committed to buying whatever they could produce. I'll keep my head low for the time be
    4 points
  3. To clarify the "held back" doses, I believe that was cleared.up. The manufacturers have them in storage not the FEDs. And they have 10s of millions because we are not the only customer. All they need is a ship to. And to those who are so frustrated please consider the difficulty of the task. As a manufacturer in industry for the majority of my career, and a very diverse history, I can tell you two FACTS. First, the plan never goes as planned and usually the problems are end of pipe issues. Second, the last mile (final delivery) is almost always the most expensive and difficult. And t
    4 points
  4. LouT

    Jeanne

    Jeanne, Bridget has already shared good information with you. For my part I would say you should seek the help of professionals. You have gone through trauma that can result in anxiety or potentially a form of PTSD. I know that may sound odd, but I'm part of a group of Alzheimer's caregivers and I'e heard more than one person discuss how their doctor has determined what they were suffering as PTSD. They relive the most terrible situations over and over with terrible emotional and physical reactions to it. Please seek professional help. You've been in a battle for your Mother's life
    3 points
  5. Kwally, I'm very sorry to hear of your dad's death. He was fortunate to have you as his caregiver. We here at the Forums are fortunate that you shared his and your story with us. As to finding out the cause of death, here's what I think.You said that part of you wants to know his cause of death to see if you could have done something to prevent it In a way, it seems like you're being open to blaming yourself. I suggest you just take care of yourself right now, in the same loving and compassionate way you took care of your dad. Knowng details won't help him and it won't help you. Just kn
    3 points
  6. Hey all Jerseyans-my brother and brother in law in NJ were both complaining today about the vaccine issues. I have no idea what is going on here In GA as 2 docs already said they can’t say for sure if I should get it because of my 3 occasions of anaphylaxis. Seeing the oncologist Thursday so I will get her opinion. Never was in a rush to get it. To me it’s scary.
    3 points
  7. GaryG

    Hello. New to Lungevity

    Hi Trish and welcome. Those side effects are our nemesis when it comes to cancer treatments. Can you please name the Immunotherapy you are taking so we can answer your question? Also how often is your treatment before the scan? i wish you luck with your next scan and please do not hesitate to post the results so we can follow your progress.
    3 points
  8. Tom Galli

    Hello. New to Lungevity

    Welcome Trish! Not a very nice Mother's Day for you, I'd venture. I remember my lament of feeling good some of the time during treatment. Immunotherapy is a God-send. So many have had very positive outcomes, even with stage IV disease, even with brain tumors. I really hope your treatment takes hold. You didn't mention your mid-course treatment scans. What did they show? Improvement? I send this for the new folks. Perhaps it will help. Stay the course. Tom
    3 points
  9. BridgetO

    Jeanne

    Excellent advice from Lou! Bridget O
    2 points
  10. My prayers go out for you and your family. Sometimes the body can only take attacks from so many sides before it fails. An autopsy may give you more answers or not. But will knowing all the details change anything at this point? As Tom said, it can be expensive, not always conclusive as to the exact cause of death and interfere with whatever arrangements you were planning at this time. Thank you for sharing so much with us. I feel lucky to have found your posts and edified by reading them. Lou
    2 points
  11. Michelle: The plot thickens and the wheels are turning. A person who beats lung cancer will find a way around few county clerks😁. One can only wonder Why there are so many discrepancies among states and local Government.
    2 points
  12. Oh, yeah. We had that discussion. He's concerned about the speed of the clinical trials and safety. I reminded him that I wouldn't hesitate to sign up for a Phase I clinical trial which has never been tested in humans. I think in the end when the call comes in from the County, he'll get the vaccine. Our county is so disorganized it's going to be months anyway. We don't have any vaccination centers and have no idea where we would even go if it were to become available. There are five counties that make up the KC Metro, two are in KS. If you live on the MO side, cancer patients are up n
    2 points
  13. I'm so sorry for you loss. You've done a wonderful job in caring for you Dad. He was so lucky to have a loving and committed son to take care of him.
    2 points
  14. BridgetO

    Jeanne

    Hi Z-Jeanne. I'm sorry to hear you're having problems with anxiety. I'm sorry for the loss of your mother. How long has it been since she died? I wonder if grief counseling or a grief support group would help you? Grief takes a lot of different forms and anxiety is a common one. Everybody grieves differently and it can last a long time. Here are some ways I've dealt with anxiety. I have low-level anxiety from time to time. In the past, I've had attacks of worse anxiety.One thing that helps me is taking a walk. If I find myself obsessively thinking about something, while I wa
    2 points
  15. Michelle, has Tim considered the fact that to the extent he's immune, he's protecting you, too? At least from any exposure he might encounter being out and about. NJ is usually pretty good as far as being progressive goes. I have a feeling we'll be better off than a lot of states in terms of getting the vaccines distributed.
    2 points
  16. Kwally, Very sorry to learn of your Dad's passing. I really appreciate you giving us insight into his treatment. Your testament will live on in our forum to help others who battle this horrid disease. If you are asking about an autopsy to determine the cause of your Dad's death, know that these procedures can be out-of-pocket cost. They can be quite expensive and also complicate the scheduling of funeral arrangements. Stay the course. Tom
    2 points
  17. Got a phone call from my Dad over the weekend, my Mother’s oncologist said no vaccine for Mom as she just started Keytruda. Even though my Dad is eligible at 79, he said if Mom can’t get it he’s not going until she can. Then he got a a little testy and said don’t be calling helicopter #2 about it (aka my sister). On Friday I registered Tim with the County-as a UPS employee for Phase II. When I told him about it Saturday Morning, he said, I don’t want to get the vaccine until you can get it. Is this a husband thing? Definitely not a Jersey thing cause hubby is a British/New Engl
    2 points
  18. I agree. I DO hold the federal government responsible for not having a coordinated plan, but that's a failure in leadership. I'm not even blaming (most) of the people involved in the planning--it's just been a Charlie Foxtrot from the start. I do think healthcare providers have to be prioritized, if only because we need to rely on them to keep treating people with COVID and cancer and heart disease and all the other life-threatening conditions being crowded out by resources being diverted to COVID. Apart from that, though, I think getting the vaccine to everyone willing to take it should
    2 points
  19. Hi, Kwally, I'm so sorry for your loss. I agree with everything Bridget said--none of us knows the future or how each event is gonna unfold. You did your best, and from everything I can see, that was pretty damn good. We always think, "If only I'd known," but really, if we actually DO know we spend that final precious time being sad and stressed out about what's coming. Your dad died feeling hopeful about the future. Given the fact that none of us knows what tomorrow will bring, that's about as good as it gets. Sending you and your family many warm thoughts. I lost my mom almos
    1 point
  20. @[email protected]@Rower Michelle @GaryG @Tom Galli @Jennedy Thank you everyone for your thoughts. My world at times feels inside out, and I'm trying to keep busy by helping my cousins move, but being able to share with you and reading your well wishes help make it all a bit more bearable. I'm slowly following the advice of reaching out to close friends and not keeping it all in. Even if they don't know what to say, I tell them to share news about their lives, and I find that it helps. I've updated the previous post with more details of what happened. Right now, my uncle and I are
    1 point
  21. Welcome here! Over the years, I've met and interacted with many who've had Prophylactic Whole Brain Radiation Therapy. This includes folks with small cell and non small cell. I've not had the treatment myself and it sounds scary, but those who've had it seemed to be normal in all respects. We interact with a lady on a zoom call weekly who's had WBRT and she's just fine. Stay the course. Tom
    1 point
  22. I am very sorry for your loss. I applaud your compassion and love for your dad. I am sure you will have good memories for the rest of your life.
    1 point
  23. D iane

    Recurrence

    Golfman, may I ask why your Docs aren't considering the same chemo/immunotherapy again? I have read that patients with 6 months or longer disease free progression, 1st line treatment may be repeated. Sorry, I am not familiar with Lurbinectedin but it is for when a platinum based chemo has failed. A synthetic tetrahydropyrrolo [4, 3, 2-de]quinolin-8(1H)-one alkaloid analogue with potential antineoplastic activity. Lurbinectedin covalently binds to residues lying in the minor groove of DNA, which may result in delayed progression through S phase, cell cycle arrest in the G2/M phase an
    1 point
  24. @Kwally3 i am so sorry for your loss. You have been an excellent caregiver to your father.
    1 point
  25. TrishV

    Hello. New to Lungevity

    Just wanted to introduce myself. I found out on Mothers day 2020 that I have stage 3 Adenocarcinoma. Because of Covid 19 I had to find out alone. That was very hard on me. Since then I've had chemo, radiation and now doing immunotherapy. I feel pretty good most days. I'm starting to get some joint and muscle pain, is this normal? I get new scans done on Monday to see if the cancer is shrinking or spreading. Feeling a little anxious about it. Well I hope you all can help me out with my questions and let me know how you are all handling your cancer.
    1 point
  26. Golfman

    Recurrence

    As background, I was diagnosed with Stage 4 SCLC in Feb 2019. Really, a death sentence. They immediately began chemo and included the newly approved (as of January) immunotherapy drug Tecentriq. Several (3?) rounds of chemo later, I was doing pretty well. Had two pretty nice years. Of course, I had the typical side affects, but really enjoyed myself. Recent scans have shown that this disease has now spread to other locations (i.e. liver and maybe brain, pending a brain scan). On the positive side, I've enjoyed the last 2 years. Probably would not have had them had those smart researchers (Dr
    0 points
  27. My dad passed this morning. I’m in a state of shock and regret that I wasn’t able to hug him at all these past two weeks. This was not the way it was supposed to go. He was fine but in chemo pain just yesterday having gotten chemo the past Friday. did you guys decide to find cause of passing? Part of me wants to know if it was covid related, chemo, heart attack? Maybe I could have done something to prevent it. But that is also could be invasive. -------------------- edit: For future readers, here are details. If just one caregiver finds this helpful in preparing, then this will be wor
    0 points
  28. Z-Jeanne

    Jeanne

    Thank you. In this month of January, I have anxiety attacks. I relive my mother's days before her death. It's as if my body had "recorded" all the suffering. And at every period, it comes back. How do you manage your anxiety attacks? I feel like I'm reliving that very week....
    0 points
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