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Thread: Fuck Cancer
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11-20-2021, 05:19 PM #1051
I missed that you were going through all this. Like others, I don't check in on this thread because it's hard. And I'm trying to cut down on my social media consumption in general.
But, I'm glad to hear you're feeling strong and fit. I hope we get to ski a lap some time soon.
I hope for the best for everyone else in this thread, too. This shit is obviously very difficult.
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11-20-2021, 06:01 PM #1052man of ice
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Thanks man, I'd love to take a lap or three with you. I kept all this stuff on the D.L. until I was done with treatment so only a couple people knew and I asked them to keep it quiet, not really sure why but it seemed like the thing to do for whatever reason.
A lot of people bitched about 2020, it was a walk in the park compared to 2021 over here! Seems kinda crazy that all this stuff from start to now was this calendar year. Sure seems longer.
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11-20-2021, 06:21 PM #1053
I never looked into comparisons between dandelion products (I read about that a few months late), I just started drinking dandelion tea from my grocer's organic section. Sometimes "probiotic" sometimes not. It's not my favorite tea, but it's not bad and like the man said, why not? It can go well with some other stuff, like chocolate protein powder.
There's a ton of little things like that and you'll notice the researchers are often in love with whatever they found. For example: resveratrol and quercetin, often from grape seed extract, which seems a favorite topic in Australia (I did get doc approval to take trunature's GSE after finding an Aussie study showing reduced heart impacts for patients taking GSE during 5FU treatment); India loves turmeric (maybe too much?); Japan and China both have formulations of turkey tail mushroom extract they give most cancer patients; low dose aspirin seemed to show a lot of promise (I was told: yes, but after surgery) and hyperthermic treatments abound (with encouragement from the ACS I went for a home version, but stomach and skin make that a little more accessible than most others).
Don't get too excited about in vitro studies, it's usually less effective in humans (see Ivermectin, CBD....) Gasoline could kill cancer in a petri dish. To me the first question was side effects/toxicity and the second was whether it would interfere with my chemo. My doc was skeptical of anything that hadn't been tried in combination with my chemo drugs, but that's where things like that Aussie study are really handy: they can provide a chance to prove you aren't going to screw up your main treatment with some screwy gamble.
I had an experience similar to the milkshakes: woke up one night praying for my natural killer cells and thought "what do I need to make more?" Google said vitamin E, so I started taking like 2000 IU per day. A week later a chemo nurse said: watch out for what you take that might interfere because they gave smokers in Germany vitamin E to try to protect against lung cancer and it turned out the study group got more cancer than placebo. Freaked me right out! I looked it up and they'd been taking the same E I had (alpha tocopherol). The freak out led me to studies saying that delta and gamma were a much better idea. I made a spreadsheet of all the foods in the FDA database that contained any of those three nutrients, sorted from "best" to "worst" on that basis and referenced it regularly. For milkshakes it's simpler: exercise, which is huge anyway.
You'll probably never know how much this stuff matters. But if you're the kind of person who needs to take an active roll it can at least help you cope with the inevitable schedule and insurance conflicts.
As another example, though, my medonc stated our plan the first time we met: "we're going to get a PET scan and if there is no cancer in the lymph nodes or the liver we're going to kill the tumor dead, scan it again, and we're gonna call Ryan and he's gonna cut the crap out and biopsy it and if it's all dead I won't argue for more chemo." So that set my goal: kill it all the way before surgery so we could stop the chemo. We both expected to miss that (I was happy just to get surgery), but it turned out we didn't. It was dead. Set your sights wherever you need to, but keep moving forward. Some morning when you wake up listless and uninspired say out loud: what am I going to do to kill cancer today? Then do it.A woman came up to me and said "I'd like to poison your mind
with wrong ideas that appeal to you, though I am not unkind."
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11-21-2021, 04:35 PM #1054
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11-21-2021, 07:26 PM #1055
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11-21-2021, 08:30 PM #1056
Fuck Cancer
From a physician perspective…the blinders can be necessary to just keep moving forward. I’ve walked out of the hospital and sat and wept in my car before I could drive home.
When I’ve talked to Neighbors’s and friends about the struggles sometimes I usually get “but that’s your job”. I don’t really talk about it outside my profession anymore.
Anyway, just a perspective. I haven’t had cancer but had lots of people close to me go through it. I’ve had my own medical issues and like to think I’m more compassionate because of it.
Good luck to all
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11-21-2021, 09:35 PM #1057
Jesus, this thread…. Positive thoughts and sincere wishes for the best to all, and I’m glad to hear good news when it happens.
Fuck cancer. Just fuck it.
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11-22-2021, 12:19 AM #1058
Thank you. Different perspectives make the communication challenging, but being prepared for it helps (especially with the expert halo), so hopefully we gripe with a purpose. I'd ski with any of my docs/nurses any day of the week they aren't too busy saving lives. They're my favorite people (and these days theirs are about the only blinders I can stand). I try to find excuses to visit, actually, just because a couple times a year I remember how rare it must be to get a happy reunion and that sucks.
My favorite infusion nurse quit about the time I finished. She had to change it up. We always used to talk about post-cancer goals and I could tell she struggled to put a brave face on stuff given low expectations. She did it well, but the toll of that. Damn. Just fuck cancer.A woman came up to me and said "I'd like to poison your mind
with wrong ideas that appeal to you, though I am not unkind."
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11-22-2021, 12:45 AM #1059
Couple of things about this.
I don't disagree, but...the blinders are kinda necessary for a couple of reasons.
Most importantly, the clinician's job is to try to focus on and stay abreast of the best and most efficacious therapy, specific to the situation. It's difficult to know everything, including good NIH-vetted studies on Manuka honey and mucositis. I imagine the Rad Onc is doing her best to manage the slew of data that may be more specific to her field (although granted, side effects like mucositis are definitely relevant to H&N radiation, no doubt). But, there are likely the myriad intricacies of the numerous individual clinical scenarios she's faced with every day that she's dealing with as well. Which is not to say the NIH study is unimportant, but bandwith is limited, and even the most motivated clinician is only human.
Second, as detrusor alludes, a degree of detachment is sometimes necessary in order to not burn out, which is a real thing. Not so detached that you don't give a flying fuck, or only care about how much $$ you can extract from the patient, but detached enough that you're not breaking down weeping in your car every evening, which is a recipe for a quick exit from the field. It's a balancing act.
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11-22-2021, 01:18 AM #1060
The head of our hospital was a pediatric oncologist. The most mild mannered, calm, unprepossessing, low key, almost passive guy. I have no idea how anyone can do that job, let alone be that way.
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11-22-2021, 08:27 AM #1061Registered User
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Seems like there should be a middleman doling out advice for cancer patients who need direction. Or does this job exist already?
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11-22-2021, 12:22 PM #1062
There are people who do this for a fee. But it shouldn't be necessary if the docs are doing their jobs. Many if not most cancer cases should be discussed by a multidisciplinary tumor board to design a plan of treatment. If multiple specialties are involved in treatment one of the specialists should be the main point of contact and organizer of treatment. But it doesn't always work that way.
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11-22-2021, 02:21 PM #1063Head down, push foreword
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I have three guys working together. Oncologist, surgeon who specializes in colorectal cancer and a gastroenterologist who is a liver specialist.
I’m afraid the schedule lady has a vendetta against me. My first treatment that was scheduled for Wednesday got rescheduled without my knowledge to Monday. With a 2 hour wait between the lab/oncologist visit and treatment.
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11-22-2021, 02:57 PM #1064
Did you get a positive biopsy yet? Any chance there could be legit reasons to push you out a day or two while they make sure they get you the right treatment? It can be surprising how often some of the staff are on top of that kind of thing without the doc saying it directly. Even if they're 90% sure of what they'll do, if that 10% would result in a vacancy there's a good reason for the scheduler to prioritize someone they are 100% sure about. And sometimes those people know how to read the doc better than you'd think. Don't let it rattle you. (But do make friends with the scheduler, it can't hurt.)
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11-22-2021, 03:53 PM #1065Head down, push foreword
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^ thanks for that. I should get the answers during my chemo consultation in one hour. At least I hope!!!
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11-22-2021, 04:40 PM #1066Good-lookin' wool
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I stayed out of this thread for awhile for selfish reasons as we were dealing with some diagnosis for my daughter and I just couldnt bear to read more bad news. Havent pinpointed exactly what is up but did finally rule out the most nefarious stuff like C. I was a wreck for awhile. Heavy stuff I missed though and vibes to each on their journey.
I quoted the above because I agree that I'm not sure how that job can be done and its interesting to get these takes on what is a forced barrier and what is an innate ability to compartmentalize. I know I couldnt do it. After the death of a young family member, I challenged myself to be more active in some way and I now volunteer with the Seattle Pediatric Hospice, but I am so far removed from the actual day to day.
We originally loved our pediatrician because she was very calm but super transparent. Piercing honesty without much sugar-coating. I never wanted her to downplay anything of concern, but man she was candid in this go-around.
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11-22-2021, 06:27 PM #1067
I've done this for a half-dozen people. I don't take money and they're usually a loved one of a friend. I always defer to the treating physicians and instead focus on supporting them through education (think ... how did this happen?, what does stage "x" mean?, what's my prognosis when the doc says "x"), selecting between otherwise comparable therapy options and providing information about clinical trials that they may be eligible for and which hold the most potential. It's the last bit that the treating team usually doesn't cover well.
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11-22-2021, 06:42 PM #1068
I think every doc does that, but I was thinking about businesses set up specifically to offer patients advice on cancer treatment without providing any treatment themselves. Having never dealt with one personally maybe they are worth what people pay them but I would hope they would be unnecessary. The fact that they exist means that some docs aren't doing their jobs.
I'm not in any way discouraging second opinions but I would hope people would understand their options and outlook after meeting the treating doctor(s). Those cancer consulting businesses just seem a little unsavory to me. It does often take more than one visit to absorb all the information and choices with many cancers. A second person at the visits is almost mandatory. And no one should feel rushed. Except in very unusual situations there is time for patients to understand and consider the choices.
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11-22-2021, 08:25 PM #1069
More unsavory than a for-profit healthcare system? Maybe. I don't know. But, cancer diagnoses put people in desperate situations and even the perception of a healthcare system that has something other than patients' best interests in mind is enough to make people look for answers in other places.
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11-22-2021, 09:05 PM #1070
There are many reasons (as I’m sure you know) this breaks down. Patient is overwhelmed by the news of their diagnosis or prognosis. Treatment options increase every year as we walk toward more personalized Therapeutics. Docs are constantly pushed to see more patients, etc.
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11-22-2021, 11:30 PM #1071
Yeah, all 3. As I alluded to before, in a not-as-shitty world patients would have a second visit scheduled at least a few days after the first. with more to follow as needed. Too much to absorb in one visit. But how many docs have the time, or make the time. I think it helps everyone to slow down and take a breath. We used to have a breast cancer metric (Kaiser is big on metrics) on days between biopsy until the lumpectomy or mastectomy. (Definitive surgery). That made no sense to us. Creates a false sense of urgency.
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11-24-2021, 09:43 AM #1072Head down, push foreword
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My chemo starts Monday. 5.5 hours in clinic and the 48 hour ball to take home. Also infusing immunotherapy and a handful of meds and vitamins to help my body cope.
12 cycles 2 weeks apart puts me into the first week of May.
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11-24-2021, 11:57 AM #1073
We all wish you well in your upcoming battle. Keep your head in as best of a spot as you can.
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11-24-2021, 01:33 PM #1074
Good luck! Don't be afraid to take advantage of the steroids they're gonna include to get extra strong and stuff.
Just curious, are you getting 5FU from the ball? I got my 5FU orally (Xeloda/Capecitabine) but it seems like about half the patients I've talked with wound up with a ball and half pills. It's maybe a question for Tri-U etc as to what kinds of factors drive that decision for different patients. The pills were pretty easy, although they stretched out longer into the cycle (which had its upsides).
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11-24-2021, 01:58 PM #1075man of ice
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