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Jacob

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  • City
    Pittsburgh
  • US State (if applicable)
    PENNSYLVANIA
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  • Country
    United States
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    Not a patient
  • Interests
    software development, blockchain

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  1. Thank you everyone, it's one of those things where I really just want to trust these people to be handling the situation properly, and so does she, especially since it's the health care system she's worked at for so long, doctors she has known / known of for years. Everyday I ask to call and get updates, but I'll definitely be making calls this week now. I kind of just went along with this limbo thinking this is how things go when having a cancer diagnosis, and that we have to wait, lists are long, or something like that. But now I realize that this is really not how this is supposed to move along. I have been so surprised how non-chalant each person we've spoke to so far have been. It's honestly bizarre at this point. Thank you, yes she has great insurance, but they are of course having her stay in the system she works for. I really can't tell you how many times I've said this is 2023, in the United States, and she's worked for this hospital system for I think over 35 years at this point, and this is how this really goes? I thought no way this is really how people are treated after such a diagnosis. I will be on the ball now and figuring out what is going on here. Thank you, it's good to know that I'm not crazy and her health care providers need to get their things together right now. Thank you Karen, it's just she believes she's a bit trapped with this specific healthcare system she works for in the area since that's who her insurance is through. They work with the hillman center apparently though, so we are expecting the care to be on par. Or at least we were. At this point I'm just going to give them a call and explain what's been going on, and see what they think can be done. Thank you for sending it along. Thanks Tom, she did send me a few emails over the last couple weeks. But it's been a bit hard to respond to anyone lately on anything. I'll get that handled tomorrow and make the connection. I knew there was no way this is the norm.
  2. Hello Karen, Sorry I have not been giving any updates. I was hoping to come back with some good news for once, but our experience with her hospital system has been not good, to say the least. This is her 3rd week after diagnosis, and she has not received a biopsy, any plans for radiation treatment, or better pain management. She was prescribed the simple 5mg Oxycodone, and told to take every 6 hours, and given 1 week supply with no refills. We are told to run out on a Friday, and get a new prescription each Friday. It does not work. She is in often excruciating bone pain since it has reached her ribs, and needs the oxy 24/7 to stay coherent. She can't eat or sleep when the pain exists. I want to convey the level of the pain but I'll leave other details out, hopefully this gets the point across. We have asked multiple times, saying please give her some better pain management, so this week they prescribed her 5mg Oxycodone again (basic tablet, not extended release or anything), which has consistently taken 30 mins or longer to kick in, and lasts about 3 hours at its best. So, she has been taking it every 4 hours to be able to function. Based off all this information we gave the thoracic surgeon's office (not her PCP, he refused to provide any prescriptions or help on that side, and said that is up to the thoracic surgeon's office who has been scheduling her care), they instead prescribed her 5mg Oxycodone this week again, but a 2 week supply, and instead of recommending 6 hours, the bottle now says every 8 hours. I don't understand what they were thinking, but they made it worse. So now it is week 3. She received a call a few days ago apologizing for some kind of mixup from the radiation oncologist for not having either biopsy scheduled, and no treatment plan in place. The needle biopsy is now scheduled for Thursday, and more bloodwork tomorrow for something, I forget. That is another worry, since they told us about the rates of collapsed lungs caused by it, but I guess due to the location of the tumor nothing else is possible (?). She has worked for this hospital system for 35 years, and somehow they have managed to allow her to go 3 weeks since diagnosis with no pain management beyond a 2 week supply of 5 mg basic tablet Oxycodone, no biopsy, no treatment plan. I won't lie, it has been very hard to wake up most mornings to my mom crying because of how bad her pain is, and how the oxy is not helping for more than a few hours through the night. Very hard to watch her be ridden to the couch, because it keeps her stiff in a position she can be somewhat more comfortable in versus the bed. Very hard to watch these things happen while spending every day hoping for a call from someone to move things forward. After the CT scan however, we were able to visit the thoracic surgeon who reviewed it with us in the room. I forgot to make it clear whether or not it seemed to be multiple tumors outside the lung, but right now it is a fairly large one in the upper left lobe, that seemed to have either grown through or around the rib bone behind it. She had the PET scan a few weeks ago, but we've heard nothing about it since. I'm assuming the radiation oncologist from a few days ago has ahold of it. My mom and I have decided to not look at it, as we've decided ignorance is a bit of bliss during this turmoil. I really, really wish I had some good news to give. But it has been extremely rough, with the pain she is in and having to motivate her to make the phone calls to find out why nothing is going on. It is coming down on her, that she's having to make sure people are doing their job while they refuse her better pain management even in the meantime. The thoracic surgeon's office actually told her to cancel a pain management appointment she made with the local place, as "they will be handling that". Of course she is not going to do that, especially since they told her she won't receive an appointment until the last week of June, unless a cancellation comes up. I'll bring back updates as they come, hopefully better news. But I am extremely fed up with this hospital system, and the fact that she worked for them her entire adult life, and know she is in horrible pain in her back and ribs, and have moved nothing forward without heavy push from our side. I have however got a better regimen going for her. The first week was rough, but the second week was much more rough. There wasn't much leaving the couch, let alone going outside, and no leaving the house due to the pain. Fighting for the pain meds worked though, even after being denied by the family PCP. This helped her to get back outside and we've even been to some stores and shopped as normal. I am on her HIPAA forms now, so I will be making many calls this week to get their problem fixed. I also should put here that she is around 5'4 or so and hovering around 120/130 lbs, normally quite active. I hope this is not TMI. But this is the raw experience right now, and maybe I'm hoping someone tells me this is not how this is supposed to go, and the hospital is truly messing up here. Or maybe this is normal, I don't know. But I'm fighting for her and making life as comfortable as I can at the moment.
  3. Hi Tom, thank you for responding, and sending those links over. I read all of the Lung Cancer 101. I understand the warning for not trying to understand every corner of this. I'm definitely trying to, and it's probably making things worse, because doctors are currently moving slower than the panic I'm having calls for, and its against all the information I'm taking in about the urgency of the situation. Currently just from the CT scan it's known to be in her lung (grapefruit sized mass), in a rib bone (apparently the doctor used the word "massacred" for explaining the rib, and my mom is afraid of moving wrong and breaking it now), and in her t3/t4 vertebrae as some sort of mass I think. Right now I'm also trying to target diet. I came home to all the food that was sent to her, which was dessert after dessert. To my understanding, 0 sugar is required since it's like jet fuel for the cancer cells. I've read some about this idea of "starving" the cells in any way you can, just to slow the growth at some rate. I appreciate you telling your story. I've certainly been praying every night lately; I don't believe anyone in the world deserves something like this. Thanks again. Hi Karen, thank you for sharing your story. My mom has not seen an oncologist yet; I thought that's who she was seeing on Monday, but her PCP directed her to have a call with a surgeon, who she is now meeting on Friday (it's Wednesday right now). Her PCP prescribed her Tramodol for now, for the rib pain. I'm not sure if things are moving fast enough, as she clearly needs something more fitting for the pain right now, and it doesn't seem there was any speak of a biopsy or meeting with a lung cancer oncologist or any oncologist yet. She thinks the surgeon will lead her to one after speaking with them Friday, but I'm not sure if things are moving fast enough at that rate since it seems up in the air. I might / probably will try to find a lung cancer oncologist in the Pittsburgh area to email today, to get things moving. I'm trying to wait, it's just so hard with her having active pain all day in the rib and the back. I wish there was something more I could do right now. CBD, creams, anything. Thank you again for responding, I sincerely appreciate it.
  4. Thank you so much to all of you. I really, really appreciate it. You have very kind souls for even taking the time to give me any information. Okay, she's having a call with an oncologist today (as long as her PCP didn't forget to get it scheduled), otherwise she'll be making calls around herself. I'm definitely hoping it's NSCLC, because it seems targeted therapies would be a much more likely option, and I'm also hoping the mutation is not one caused by the (light) smoking, since it seems those mutations are more rare and harder to target still. This hospital seems to be the leader in Pittsburgh for LC treatment, who is partnered with our neighborhood nearby hospital. I am completely open to taking her to any corner of the earth for the best treatment, but insurance and such is going to be quite annoying. I told her to mention to the oncologist today about the biomarker testing if NSCLC, and about getting some sort of sample to find out if NSCLC. Thank you again. Thank you Lily, I appreciate it. I'm starting to understand the process here, you summed it up well. NSCLC? Common mutation that has a known targeted therapy / treatment options for it? I've let my family know to stop consulting Dr. Google, including myself, since all I keep reading are stats, but I do realize that treatments for this disease have progressed a lot recently. Once I get home, I'll be grocery shopping for healthy foods, taking her on walks each day as she is able, and getting that immune system boosted through this process. I think it will improve mental health as well, and help us think more clearly through this all. Thank you again so much. I actually quoted some of what you said and sent it to my brother. It's one thing to find these new accredited research articles online on LC treatments popping up, but it's another to hear from someone that advancements truly have occurred. I know not many decades ago was LC considered a sentencing, so I'm trying to get the modern-science-hope energy across to my family. Hi Rikke, thank you. I hate to bring people back to the past, but you seem like a soldier. I see your from the UK; my mom's father (never got to meet him) was Scottish, and served in the royal Air Force in WW2. He was actually captured by Germany and released at some point. He had 8..? children I believe, so I have quite the extended family. It's been a dream of mine since childhood to visit London and Scotland. It seems that getting personalized treatment plans is the way to go now, considering not two of you in the 12 person group is on the same treatment. I'm going to try to be in the room with my mom when she speaks to doctors to stay up to date. It's always helpful to hear that Dr. Google is not the best reference, since I know my family and I probably all jumped straight on google and typed in the same sentences. I like the way you think of this disease, as a chronic illness and not a sentencing. I hate to admin it but the first think that popped into my head upon waking up to the phone call was a giant timer. But seeing this as an illness to battle helps shape it differently. I'll be doing my best to help her avoid painkillers (maybe too much information, but I grew up around many people addicted to them and things worse, so I fully understand the effects they have on the body, brain and soul), and since marijuana is medically legal in Pennsylvania, and takes about 5 minutes to get a license for, I won't be surprised if she goes that route. I know there are edible versions that stop the pain but don't mentally affect you. If that doesn't work, then onwards to other options. I'll be speaking to her about acupuncture since I've only really ever heard good things about it honestly. I am prepared for the marathon. I've accepted that I may never come back to where I moved (8 hours of non-direct flights, not including the 1 hour drive to the airport from home), and am willing to leave all things behind, besides what I bring with me, to get this situation under control. I hope that it doesn't come to that and things calm to where I can go back and forth without anxiety, but I'm prepared at least. Thank you for responding with your personal experience. I sincerely appreciate it. I'll introduce my mom to this forum since I think speaking to people that have been in her situation will help her feel less alone. As much pain as I'm feeling and everyone else is feeling, she's the one going through it at the end of the day so I'm sure speaking to others will help a lot. What a blessing this forum is. Thank you again.
  5. Hello, I'm 24 years old and moved out of home last year, but flying back in a few days after my mom received the diagnosis a few days ago. She has been having a specific back pain since last October, and some rib pain she thought was indigestion. She was taking aspirin and Tylenol for the pain much too long, and was originally getting scans for related issues. She got a CT scan finally recently, and found out while at work Friday that it's lung cancer. It's in her left lung upper lobe, t3 and t4 vertebrae, and one of her ribs. Apparently the rib is not looking good and will probably need removed. She's seeing a specialist on Monday (tomorrow), to figure out where to go from here I guess. I've been researching like crazy, I couldn't get a decent flight until Wednesday so I'll just be panicking until then I guess. I'm here to find out what to do, where to go, what to tell her, etc. I'm completely lost. I know she's lost too. She lives alone, we have family in the area but they have families of their own, so I'm fully expecting to fly back and help her wherever I possibly can, and don't care if I ever come back to where I moved. I am fortunate enough to work remotely so there is no worries there. She works for a hospital system outside Pittsburgh, PA, and has for most of her life as a transcriptionist and a front-desk assistant, and was due to retire in a few years. She's definitely not heading back to work now ever again though, she told me she's taking the week off since she has so much saved up PTO to figure things out. So I guess she will use all of her PTO, or however that works, and do some kind of medical leave so she can have insurance to handle the storm that just arrived. Since we live within an hour from Pittsburgh, I've been researching anyone in the area to help us with getting some sort of biopsy to figure out exactly what mutated. To my understanding, there are targeted drug therapies available for specific mutations, as well as new-ish immunotherapies such as TCR Gene Therapy. I also found some hope here. I'm assuming a combo of surgery, chemotherapy, followed by immunotherapy is in the near future. I'm trying to create a plan, and so far I have the following: Get back home as soon as I can and help her with absolutely anything she needs (she's in good shape, not overweight, but has smoked 1/2 cigarettes a day most of her life) Find out what she can take right now for reducing the back and rib pain so she can sleep properly at night (looking into CBD edibles or THC, doesn't matter, just anything that will help the pain that's not Aspirin or similar). Get to the specialist on Monday and devise a plan with them Get a biopsy scheduled to figure out exactly what kind of gene mutation she has as soon as possible to devise a treatment plan I want to note, I'm a software engineer so I (think) I am capable of understanding complex treatments and the situation here, and am familiar with advancements in using artificial intelligence to personalize lung cancer treatment, so feel free to dump absolutely any help on me regardless of how complicated. If anyone has any knowledge of places in the Pittsburgh area, or anywhere in the world really, that use these newer methods using AI of finding treatment / targeted drug therapies / immunotherapies, or anywhere that uses T-cell gene therapy, please let me know. I am a firm believer in data, and prefer to work with any treatments or clinical trials that focus on such. To whoever reads this, thank you so much for taking the time. I'm terrified and so is she / our whole family. Our dog recently passed away in January, who was my sisters who passed away in 2012. My mom has been through more than any human should go through, so I just want to spend as much time as I can with her and help make this time worth living through. Thank you, Jacob
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