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Thread: Fuck Cancer

  1. #1051
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    Quote Originally Posted by ötzi View Post
    Thanks for sharing that Berko. My situation was parallel but a little opposite. Surgery sucked but wasn't that bad, I mean it sucked but it was a one day deal and I have a ton of experience having to rally from physical stuff and I'm okay with it as long as there's progress being made even if it's slow and not completely linear.

    Radiation really sucked, it was 5 days a week for 6 weeks and it just kept getting worse every day. They burned the living fuck out of my neck, the pics I have are pretty gruesome. They warned me going in that it would get worse and worse because it's cumulative and that the worst week would be the week after treatment ended and man were they right, I was miserable. It hurt a ton. Really fucking hurt. But after that week it started getting better slowly. 6 months out my neck is still fucked up with lymphedema and fibrosis. I go to PT and massage therapy every week and it's slowly getting better.

    But despite the fact that my neck is still pretty messed up I feel great. I'm still alive, and I'm in probably the best shape I've been in since maybe college? A long time anyways. I lost a fair amount of weight, I was at 212 when it all started and I'm at 185 right now and plan to keep it this way.

    I'm not a God guy in the least but for lack of a better word I feel blessed. I got so fucking lucky. If I had ignored it I would be in a world of hurt by now and left to my own devices I probably would have ignored it for a long time but my dentist saved my ass. Might have saved my life.

    It's been something to go through, and I'm still going through it in some ways, but it's all good. One thing that helped me was researching the hell out of things. Not so much the course of treatment (although I did get a second opinion from another hospital) as ancillary stuff outside of the hospital, like diet (for example as Jono said above, cancer loves sugar) and additional stuff that helped, like acupuncture, and other stuff that they just didn't mention.

    It's like the Docs have blinders on, they're focused on what they're doing and they're good at it but they're not thinking about what happens outside the hospital walls and of course most of your time is outside the hospital. Probably the best example I have of that is Manuka honey. A very common side effect of neck and mouth radiation is mucositis, essentially sores that develop in your mouth and the lining of your throat from all the burning going on. It's important to control it because if it's bad enough you basically can't eat and a lot of people get put on feeding tubes because of it.

    Well there's a study from NIH that shows an 80% reduction in mucositis with a course of Manuka honey (I'm now kind of an expert on Manuka honey btw, it has unique and potent antibacterial and antifungal properties, but much if not most of it is counterfeit), with a teaspoon of it immediately prior to radiation and another immediately afterwards and a third before bed. And it worked. No mucositis for me.

    When I asked the radiation oncologist about it she kind of shrugged and said, yeah, some people say that helps. Well NIH isn't exactly just some random dude on the street, so wtf? I dunno, but I'm glad I found out about it. So be your own advocate when it comes to the treatment, but don't limit it to that. Let google be your ally. Don't start doing wack shit but if there's science out there you want to know about it. Good luck mang.
    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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  2. #1052
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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.

  3. #1053
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    Quote Originally Posted by Game Over View Post
    Fuck- thanks for the info on sugars.

    My doc also said eat whatever you want, and my patient portal even has a piece on how sugar is not bad…. So I’ve been eating a ton of ice cream and one or two milkshakes a day trying to put on weight.

    Gonna stop that right now.

    Edit- holy shit double thanks for this dandelion study https://www.ncbi.nlm.nih.gov/pmc/art...__ffn_sectitle

    Edit 2 - any particular type of dandelion root extract I should look for over another? Thanks again- greatly appreciated
    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."

  4. #1054
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    Quote Originally Posted by ötzi View Post

    It's like the Docs have blinders on, they're focused on what they're doing and they're good at it but they're not thinking about what happens outside the hospital ….
    Im convinced this is so because the vast majority of docs have never experienced any of the diseases they treat.
    In with the 9.

  5. #1055
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    Quote Originally Posted by ötzi View Post
    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.
    Count me in for that when you're in the beehive state. You'll probably kick my ass with the weight loss. I'm still dragging around the COVID weight gain.

    Again, I'm glad to hear you're on the upswing.

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  6. #1056
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    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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  7. #1057
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    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.

  8. #1058
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    Quote Originally Posted by detrusor View Post
    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
    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."

  9. #1059
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    Quote Originally Posted by ötzi View Post
    It's like the Docs have blinders on, they're focused on what they're doing and they're good at it but they're not thinking about what happens outside the hospital walls and of course most of your time is outside the hospital.
    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.

  10. #1060
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    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.

  11. #1061
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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?

  12. #1062
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    Quote Originally Posted by muted reborn View Post
    Seems like there should be a middleman doling out advice for cancer patients who need direction. Or does this job exist already?
    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.

  13. #1063
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    Quote Originally Posted by old goat View Post
    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.
    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.

  14. #1064
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    Quote Originally Posted by Game Over View Post
    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.
    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.)

  15. #1065
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    ^ thanks for that. I should get the answers during my chemo consultation in one hour. At least I hope!!!

  16. #1066
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    Quote Originally Posted by old goat View Post
    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.
    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.

  17. #1067
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    Quote Originally Posted by old goat View Post
    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.
    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.

  18. #1068
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    Quote Originally Posted by huckbucket View Post
    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.
    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.

  19. #1069
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    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.

  20. #1070
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    Quote Originally Posted by old goat View Post
    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.
    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.

  21. #1071
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    Quote Originally Posted by huckbucket View Post
    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.
    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.

  22. #1072
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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.

  23. #1073
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    We all wish you well in your upcoming battle. Keep your head in as best of a spot as you can.

  24. #1074
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    Quote Originally Posted by Game Over View Post
    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.
    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).

  25. #1075
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    Quote Originally Posted by Art Shirk View Post
    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.
    Shit man so happy it seems like good news, at least better than feared. Hope it ll works out.

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