Larry
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I have permission to share this stuff. I am posting transcripts of PMs that we had. THere’s a lot of irrelevant detail, but you all will get the gist of what’s going on. I know nothing more than what I posted.
Some of the days might be off, but the timeline is correct.
So, with concern, I post this.
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Larry 12 days ago:
LARRY: Question.... I have pneumonia. At the ER they said my blood oxygen level was 98 when she checked it in the waiting room. They had me in a wheelchair.. by the time they had rolled me into the ER my blood oxygen level was 88. I was there for 7 hours, all sorts of monitors going at once.., my blood oxygen level seemed to hover between 90 and 92.. the doc said it was marginal, but acceptable. Sound right?
Also.... they drew about 8 vials of blood, tested for literally everything.. even got a little blood from an artery to test blood gases. Did a chest x ray with me sitting up in bed.., the works. Like i said, i was there for 7 hours but a lot of it was waiting for a radiologist to read things, it was night time so there wasnt a dedicated ER radiologist.... am i correct in assuming that if they had found anything bad like lung cancer the ER dr would have told me? He was an olfer guy, long time as a dr, but he seemed to not have much personality....
ME: 88 is seriously low. Seriously. 90 to 92 is marginal, but I wouldn't like it. Mine hovers about 94-95.
Chest x-ray is appropriate diagnostics, but it won't tell you WHAT the cause is. Did the x-ray show a pneumonitis? The arterial blood gases was the right thing to do as well.
Any radiologist should be able read a chest film, by the way.
ER docs are a strange breed. They do "shift work," and frequently DGAF. Sorry, but that's been my impression.
Do you have a fever? Is your white blood count elevated? If so, how high? Are you coughing anything up? If so, what color? Are you short of breath? What, exactly, did the x-ray show, other than "you have pneumonia?"LARRY: What I'm coughing up seems to be clear mucous. I had a fever, but it has been normal now for just over a week. Don't know about my white blood count, it surely that was one of the tests they ran, and the nurses said my tests "looked good"
I don't know what else the chest fray showed. That's primarily what I'm asking.... if it showed something deadly serious even a DGAF ER Dr would have told me, right?ME: If it's clear shit, that's good. It's probably just inflammatory stuff from the infection. No fever is also good.
Could very well be a viral pneumonia which can make you sick, feel like shit, etc. Fortunately, it's usually self-limited and will go away after a while. If it were bacterial, I'd expect a white count elevation, persistent fever and sputum that is not clear - yellow, green, whatever.
Yeah, if you had a tumor, he'd say, "I really recommend you follow up with your primary....ASAP."
Yeah, find out what the X-ray shows.LARRY: Thanks George.
ME: Please keep me posted.
11 Days Ago:
ME: Doing OK this AM?
LARRY: I had the best night last night than I've had in 4 weeks. I was sitting watching TV around 10pm coughing up junk, when all of a sudden I coughed one up that made me almost throw up.. a few minutes later my breathing was almost normal, I could literally feel my strength coming back, and by 10:30 I actually wanted to eat something....
And, so far so good this morning.
ME: It sounds like you might have had a mucus plug in an airway. If you get dehydrated, your normal bronchial secretions dry up and can "plug" a smaller airway. That's a setup for infection.
I wonder if something just broke free.
LARRY: I was hospitalized for dehydration a few weeks ago....ME: Well, well. Maybe I was on to something.
LARRY: About time, huh........,.,
That was meant as a joke, btw....
ME: Of course. I know you well enough ferchrissakes!LARRY: Oo.... I'm getting scared. No appetite, food has no taste.. I'm wasting away.. no strength... ant breathe... 10 steps an.di8m hyperventilating from trying to get air.. all in all I feel like im dying.....
Sorry for all the typos
ME: Sounds like it...doesn't it?
DO you have a pulse oximeter at home? Are you vaccinated?
If you're still bad, get your ass to an ER.LARRY: Blood oxygen is 95, pulse is 87. Ive had vaccine 1 and 2, no booster. Why am i hyperventilating???
ME: No clue. Possible you got COVID, your symptoms sound like it. You were hospitalized not too long ago with pulmonary issues (I thought a mucus plug causing pneumonia). Perhaps a recurrence?
LARRY: I've been tested for covid twice, negative both times. The mucus plug isn't just one, I just keep hacking up gunk. It makes me wheeze, I cough until something comes up, then I can breathe better for a few mi utes. Then wheezing again, repeat...
ME: I'd consider a visit to an urgent care/ER. If this is a sudden onset of new symptoms, it needs to be evaluated. If it's a slow thing, it might wait for a day or two if you don't improve. No fever, or anything, I assume?LARRY: This has been going on for a month, with a short lived improvement after I went to a urgent care, another short lived improvement after I went to the ER. Was over the fever the day after I noticed I had one, 2 weeks ago.
ME: If you have a primary MD, get in touch and tell him/her what's going on. I wish I had something more to suggest, but it sure sounds like you need more evaluation.
LARRY: I do have one, I just hate dealing with the hospital process. Slower than molasses.
ME: Yeah. I totally understand. If you can send an email or message your PCP tonight, you might get some answers Monday.6 Days ago
ME: No change?
ME: Update?
2 Days ago:
ME: Update???
Three Days ago
LARRY: Seems I have lung cancer as well as pneumonia
ME: Jesus. Hopefully it’s a type that is easily treatable. Please keep me posted. If you want to talk, you have my phone #. We don’t answer “unknown callers” so leave a message and I’ll get back to you.
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Three days ago:
I have a single tumor on one lung. The lung specialists says it will be Monday before he will say it's cancerous or benign, but that it's most likely cancerous. First an ICU nurse said "I think people should know what's ahead instead of being blindsided.... you have cancer in the lower brain, both lungs, and your spine" but my family Dr got upset at her, told me that wasn't the case.
The lung Dr says that the tumor is so closely packed in behind my heart and major arteries that surgery can't be done. I guess that leaves chemo and radiation.
Sarah has flipped out. She wants so badly to be strong and put on a calming face, but she ends up crying like a baby, telling me ow much she loves me, etc.
Oh.... its ok to tell this on the forum.
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2 days ago (Sunday)
Larry: New update: Dr XXXXXXX is NOT a surgeon. My mistake. But a PA stopped to visit this morning from my primary Dr, and told me that yes, it's stage 4.
I guess I'm terminal.
Me: You need an oncologist and a surgeon to coordinate your care.
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That's all I know as of right now.
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Damn.
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Shit.
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Oh no, that’s just awful. George please send him our best if you get the chance- he really is missed here.
Proud supporter of Plan 2525. Everything you think, do and say will be in the pill you took today.
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@Doctor-Phibes said in Larry:
h no, that’s just awful. George please send him our best if you get the chance- he really is missed here.
Our entire conversation was via PM on the forum, not email.
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Damn, that sounds really bad. I'm so sorry, Larry!
I wonder why an ICU nurse would tell patients something like that when it's not true.
From what I understand, while stage 4 is always pretty bad, a lot now depends on the details, such as the exact histological type, the size and localization of metastases, ...
I wish there was something we could do.
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I wonder why an ICU nurse would tell patients something like that when it's not true.
From his messages, it appears that it was true. Or at least somewhat true - stage 4. Nevertheless, it is not the role of an ICU nurse to do this. It's the role of the docs taking care of the patients. She should be reprimanded.
From what I understand, while stage 4 is always pretty bad, a lot now depends on the details, such as the exact histological type, the size and localization of metastases, ...
Yes. A big medical center should be able to make those determinations and direct further therapy.
I wish there was something we could do.
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Larry, I hope you can get this message, or George can share it with you.
Please consider coming to Mayo here in Minnesoooota. You deserve top tier docs and oncologists, and we have them here. I can help if you or your wife need some tips, info, or whatever on coming to Rochester, and I would be very happy to help you and your sweet bride.
You could at least get the Mayo doctors' ideas on what options would be best for you, and they may have options that have not been presented to you yet. Mayo will have a team of docs, not just one, that will review your case and come up with various options. You're worth getting another set of expert eyes on your health situation before you make decisions.
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Mayo is good. Used to deal with their lab all the time. But there are other good institutions, with strong treatment areas. When I think of cancer, I think of M.D. Anderson.
And I have no idea how much Larry would like to travel. A lot of patients dont like to venture too far away from family support systems. Vanderbilt is not too far. I know they have a cancer center. Duke would be to the East.
Every patient is different. Like Jon, my mom had lung cancer...Small oat cell. Mom had the oncologist shaking his head, because she made it almost four years. That was back in the late 90's, and I'm sure we have better treatments today, than back then.
