› Forums › General Melanoma Community › Annual survivors thread!
- This topic has 19 replies, 8 voices, and was last updated 7 years, 1 month ago by
ToddC.
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- December 9, 2017 at 6:11 am
Hi long term melanoma survivors. Time to chime in on the old MPIP board… let us know you are still alive and kicking! I remember this board from years ago before it became run by the "MRF" which I'm not sure I believe in anymore but I'll avoid that discussion here. I'm sure there are a lot of people like me that never accepted the drugs and found some natural ways to control this condition so let's hear your story again and give people here some hope.
I had stage 4 mel from arount 2008-2013 when some lifestyle changes I made seem to have made my condition go away and to my docs amazement it has not come back since. I recently had bloodwork and want to report back, no indicators of cancer and vitamin D level of 55. LdH below threshold, WBC and CRP is totally normal, everything looks perfect at age 53 now, thought I would die in 2013 but I'm still going strong. You can survuve this thing, your body has amazing recuperative ability. You just have to give it what it needs to win this fight baby!
Good luck everyone, I will spare the details in my case but I want to hear from anyone like me out there who made it through the worst of this and lived to tell about it.
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- December 9, 2017 at 8:05 pm
Hi Todd,
Glad you are doing well. However, your past posts note that you were treated with surgery and radiation!!! That's a bit more than Vitamin D and a lifestyle change, don't 'cha think??? But, thanks for sharing! I wish you my best. Celeste
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- December 9, 2017 at 10:35 pm
Many surgeries and one final gamma ray treatment for a nickel sized tumor right next to me heart lol that made me motivated to get rid of mel. I was too chicken to do a second thoracic surgery to cut that last one out, those are a bear to get over! I had no chemo or anything else, just dietary change and getting a UVB lamp made most of the difference for me. All in all I had about 7 tumor surgeries for my clogged lymph nodes that grew these lame tumors back then but I figured it out before it got me.
Where did all the other old posters go? hope they chime in and say hi. Watched a lot of people suffer with this stupid ailment on this board and in my medical experiences over the years, just curious how many are still doing well.Would like to thank James Sennel the crazy Vitamin D guy from many years back, wonder if he's still around? He seemed kind of crackers but strangely he was on the right track I think… cudos James if you're still around
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- December 13, 2017 at 12:36 am
Hey! I'm still here alive and kicking! 18 rounds of Pembro and surgery kicked Mel to the curb. Surgery, chemo and radiation gave Larry (NSC Lung Cancer) the boot. I'm tired (just finished radiation Monday) but I should be bouncing back by the new year!
Great to see you here!
Julie
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- December 14, 2017 at 11:12 pm
Hi! I've been on and off of here for a long time, so long that I no longer had a profile when I came back here today to say hi and check in LOL. My first diagnosis was 1999, .29mm, WLE and nothing else. Fast forward to 2011, they found another .9mm (different area), had another WLE, then nothing. This year, they found two separate basil cells, no further treatment needed.
NOW, I take Vitamin D3, get regular sun here in FL (not more than 15min a day), and stay away from ALL dairy and meat and try to avoid sugar and gluten. I am definitey a survivor, but not without work. I am blonde with blue eye and fair skin, so go figure.
I need a bit more time, so I'm hoping it's on my side. My girls are now 20 and 17 (first dark black melanoma was found while I was pregnant with my oldest), so they still need me. 🙂
Personally, I feel like any major hormonal change (pregnancy, fertility drugs) has caused my melanoma/my dna to shift in my skin. Hoping to combat pre and menopause the right way and keep myself "even," so I don't see another melanoma. Two has been MORE than enough.
Looking forward to hearing everyone respond!
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- December 16, 2017 at 2:12 pm
Hi Aimelise… congrats on being a survivor! I quit taking the D3 a long while back and only so the UVB lamp plus get a little midday sun too. When I started that routine I noticed my D level went up to mid 30's. Then I quite using soaps on my arms, legs, trunk, and let the natural sebum, build a little. After that my D level went to mid 50's and has stayed there for about 5 years now. Another benefit I think was my awful arthritis is mostly gone as well. Anyway I'm glad there are some of us out there still… hope more chime in. This board got kind of scary for me with all the talk of chemo and immune drugs. My mom passed away from melanoma treatments about 3 years back, mostly IMO due to the drugs and not the cancer itself. I only post around the end of the year on here trying to give encouragement but I guess its usually taken as quackery by most. Convincing people there are alternatives that are outside the social and medical consensus about treating cancer or mel in particular is hard and most are not receptive to that but I still try!
BTW I totally agree the dairy and gluten are bad bad… casein protein in dairy clogs up your lymph system and gluten also cause large scale inflammatory response which is what cancer needs to grow. But I still smoke and eat meat which I'm unwilling to give up but like I said above, my bloodwork last week looks damn good according to my GP and I feel great. Oh well… we are just medical anomalies I guess! Good luck and stay healthy.
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- December 16, 2017 at 3:47 pm
Really Todd, once a year of this stupid shit that you are pushing is enough for us all. I didn't bite this year until now, when you starting promoting tanning on a skin cancer web site!!! This is my edited version, if I wrote what I am really feeling, I probably would be kicked off the site!!!Ed
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- December 19, 2017 at 3:29 am
lol… thats MRF I guess. You should be able to post what you want Ed.
I only come on here once a year because people dont get it or maybe I suck at communication. Your response is pretty common to my postings. People usually mistake what I did with tanning but its really not the same thing, the amount of uv one absorbs from a vitamin D lamp is pretty miniscule compared to a tanning bed fwiw. Apparently I had some issues absorbing vitamin D from a pill and needed to get more sunlight but I couldn't due to my job so I used a lamp is all. There does seem to be a goldilock zone or too little or too much with regard to uvb
I think allowing one's skin oils to accumulate helps a lot and attenuates much of the uv light anyway since the interaction of those wavelengths in cholesterol based sterols is what creates vitamin D which is actually a precursor steroid hormone and not even a vitamin to begin with. In fact I would posit that this entire melanoma problem is caused by a steroid hormone production problem for most people, low vitamin D, low cholesterol diet or taking pill to control cholesterol and the fact that sodium fluoride slowly degrades your enzymes which make these hormones basically control your gene expression downstream and that is what is failing imo. Look at the research and see people who have high cholesterol levels also low have vitamin D, in fact your liver is producing large quantities to try to replenish your skin oils (which most of us bathe off daily) so when you go in the sun you can make this stuff… its all a big feedback loop. So when you add inflammatory sources like casein proteins and glutens your body cannot effectively deal with the reaction and you wind up with tumors growing is my guess.
So my vitamin D level has been 55 ever since and I don't seem to grow the tumors anymore I attribute that mostly to getting that level back to a normal reading for humans and not 22 which mine always seemed to be before. There were some other things I did as well but I think the lamp was the most significant. Anyway, I'm not promoting tanning or anything… you can take my story as advice or BS doesn't matter to me. If you had the same success, I'd be disappointed if you didn't at least try to tell people about it. I think we are all preconditioned to believe what we are told from an early stage and mine is a hard story to believe so put yourself in my shoes. Would you at least try to make mention of this or just keep it bottled up for fear of offending others?
Look I have nothing really to gain here and I'm not working for the tanning people. The original point of my post is I wanted anyone else out there with long term success by some natural means to chime in. When I was sick with this stupid condition I wished there were old timers on here but there don't seem to be many left. Is that because if you survive this thing you don't care to revisit it or something? Always wondered about that… I guess Im pretty anomalous or something lol
Oh btw, I used to be terribly arthritic which also an inflammatory ailment but that too has all but vanished! … more snake oil I guess Good luck and keep an open mind sir
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- December 20, 2017 at 2:42 am
Again…surgery and radiation?????? Why don't you ever mention your participation in those effective melanoma treatments????? They are not 'state of the art', but still. They are a far cry from Vitamin D…no matter from sun, pills, light bulbs, etc. now aren't they???? And SERIOUSLY!!!! YOU STILL SMOKE?????????????? Good luck with that! I wish you my best. c PS….I AM an old timer. Guess you just don't remember some of us.
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- December 20, 2017 at 2:46 am
Smoking is a real threat….just in case you'd like some data: http://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/smoking-is-associated-with-mets-in.html
With "new" and effective immuno and targeted therapies….there are more and more of us "old timers" just hanging around!!!! Melanoma survivor since 2003!!!!!!!!!!!!!!!!!!!!!!! yours, celeste
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- December 20, 2017 at 3:49 am
But I did mention those things right Bubbles? I never try to dissuade folks from medical therapies which yes are way better optiions today than the old interferons. In fact I was a candidate for the clinical trials of what became yervoy eventually but I got rejected since I didn't meet the BRAF criteria. It would be stupid not to avail oneself of medical treatments but there were not many goods ones back then. So I only had the option of chemo drugs and not much else.
I opted to hold back on that until the FDA finally approved the yervoy but when I went back for follow up testing there was no more tumor growth so I never needed to do anything. You think this stuff just stopped growing because it was cut out and radiated? As an old timer you know that is highly improbable once it gets rooted. I think the reason I'm still around is evident in my bloodwork changes over the years though. I was growing these stupid tumors like crazy and after I made some simple changes they stopped so if that's not worth sharing I don't know what really is on this board. I do remember you from old times though so congrats on being a survivor! Oh and yes the smoking thing, and drinking still… vices I guess. Obviously they had no real bearing on my problem since I'm still around amazingly.
I turned my cousin on to my ideas about 2 years ago since she had a serious liver tumor growing with a 5 month prognosis. She tried what I did and is still going strong as well, her tumor also vanished. She did opt for the optiva for fairness and her doctors of course take full credit for the cure. Perhaps this works great as an adjuvant therapy since most in her condition don't usually respond fully. What I did doesn't seem to be incompatible with chemo or immune drugs it seems. I guess it may eventually cause some issues if one carries it on too long and in high doses but I'd rather have these stupid tumors on the surface than growing internally. But seriously I have not noticed any skin problems after about 5 years of doing this.
Anyway thanks for chiming in on the old timers thread… continued good health wishes to you!
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- December 29, 2017 at 8:02 am
So I’m hearing you speak of casein, gluten, and inflammation, but smoking is fine? Thank you for the sound advice, but I shall respectfully disagree. I am happy you are doing well, but I would hope no one who reads this thread would take your initial post literally as it could easily be misinterpreted as misleading. You did, in fact, undergo medical procedures to treat your Mel. Regardless, I wish you good health and many blessings in the new year!-
- December 31, 2017 at 3:32 pm
Like I'm advocating smoking lol. I'm not, I did say that is a bad habit. I somehow was able to be rid of this health condition called melanoma even though I smoked all through when I had it and still unfortunately do a bit. Not like I'm proud of that or something, I'm just pointing out that our bodies have a remarkable mechanism to fix these problems. I think you need to give it some of the natural things necessary to fix this thing.
IMO mel is a steroid hormone deficiency cause by low vitamin D and excessive accumulation of sodium fluorides such as you find in toothpaste, teflon coatings, municipal water and many pharma drugs. This highly reactive waste product that industry has convinced us somehow is good for us really messes up your enzyme activity over time and that is what causes steroid hormon production to fail resulting in a lot of issues but importantly immune system signaling failure.
Mel is brought upon us by overconsumption of sticky casein protein molecules as one finds in dairy and soft cheeses. Casein proteins are used in industrial glues due to their bonding characteristics and high levels will cause the lymphatic system to lose fluidity so immune cells cannot freely navigate back upstream to attack tumors. Coupled with that, consumption of glutenous products seem to result in excessive inflammatory responses which provide the perfect environment for these tumors to grow and be masked from immune cells.
There you go, take it or leave it. None of what I'm saying is going to cause your cancer treatments to fail and a little UVB lamp treatment is nowhere near the UV you would absorb on a sunny summer day so its not in fact dangerous at all as I found out. It does provide a consistent source of this important biological presteroid hormone which is useful in getting rid of Mel, some people I would point out have a very difficult time absorbing enough D3 from vitamins so natural sunlight is best and UVB lamp even better as I discovered.
How many posters on here have had surgeries and radiation only to have this stupid condition return? I think its a lot, I was one of them… suffered with this for about 8 years before I figured it out. So for offering a truthful account of what I did, I usually get rejected on this board. I would swear its mass brainwashing or something, the old MPIP board was receptive to my sort of message but now just seems about drug and pharma treatment options.
What I did was not that difficult to accomplish and its not like dangerous or something. I find the reactions to my posts here amusing like I'm some kind of freak or something.
Oh well, good luck people for 2018, its now 6 years since my last episode with melanoma tumors. Recent bloodwork still shows no more signs it is a problem, very low LDH reading, good WBC's, low C reactive protein and very good vitamin D reading.
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- December 31, 2017 at 4:55 pm
Whoa Nelly. All I said was that your initial post was a bit misleading. I never once dismissed your other claims except for a finger-wag at your smoking.I have just recently been diagnosed and I have been doing as much research as I can to educate myself and to be able to make better choices. I absolutely agree with making dietary changes when diagnosed with any type of cancer. (Sure changes should have been made prior, but I’m human.) Vitamin D levels have been shown to be strongly associated with increased survival as well as disease-free survival in melanoma patients. I am learning more about the whole casein thing now. I’m not a huge milk lover but I can get down on some cheese, so that is definitely something for me to assess. For quite a while, I have felt our food is killing us. There are chemicals ranging from questionable to downright toxic in almost everything we consume or use on our bodies. I truly feel it is the biggest reason for the increased prevalence of all types of cancer in the past several decades.
And as far as UVB goes, I thought it was UVA rays such as those in tanning beds that were the nasty ones, but I don’t have a lot of knowledge on that subject.
I am truly sorry you feel people don’t take you seriously. I’m not totally sure why that is since most of what you have proposed has at least been moderately to vigorously studied. More studies are needed in some areas, but links of association have been made. I for one am making changes with the first one being the Vitamin D supplementation and just trying to eat cleaner. No way can I just go purely plant-based as some literature has suggested. I need meat, and no veganazi will ever make me believe I wasn’t meant to eat it! (Although organic and moderation are key.)
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- December 31, 2017 at 5:40 pm
Sorry about your recent diagnosis, Mel sucks for sure but its totally survivable these days and thanks for clarifying. Guess I'm too sensitive 😉
Also look into boron and trace mineral supplements, much recent research in that area is positive. Also learn about how boron is necessary to maintain RNA and DNA stability so I think is becoming clear that is a key mineral nutrient we don't get nearly enough of, possibly that is due to modern farming techniques.
Also some people say its a good way to chelate the accumulated fluorides we seem to get by middle age which is when most seem to come down with this condition. Google the many threads about consuming a little borax diluted in water over the course of a day as a way to achieve that. I know borax has a warning label like its as bad as cigarrettes lol but small consumption is not a problem as I found out.Less toxic than table salt as it turns out.
Yes, its the UVA which I think is not so great as that wavelength penetrates deeply and probably does cause some genetic damage. You get a lot of UVA driving in cars or sitting behind glass since UVB is totally filtered out. UVB on the other hand has just enough energy to catabolize the steroid molecules in our skin oils. When these are reabsorbed through our hair follicles when we perspire, our enzyme systems can make all sorts of important hormones. In fact we have an elaborate system to transport these molecules from the skin and into our fat cells but we do not have such a system to do that from orally injested VD3. I would also point out most sunscreen does a remarkable job of completely eliminating UVB and thus any vitamin D production in the skin. You can tell if your vitamjin D level is low by fingernail growth it turns out. When you use the UVB lamp as I suggested, your fingernails and hair grow like crazy
I never really did a lot on changing my diet except for I reduced gluten and casein injestion, upped my share of cholesterol laden foods, make kale smoothies frequently (use fresh ground flax in those). I read somewhere fresh omega 3's from seeds really help with replenish your hemoglobin. Maybe that's why the Gerson diet sort of worked to some extent? Anyway my cholesterol levels are completely normal in spite of eating a lot of eggs and other fatty meats which I think is because a leave my skin oils on my skin and have a high vitamin D level, there seems a feedback loop that keeps cholesterol from being overproduced in our liver when you are at a normal VD level for humans.
Hey good luck and thanks for clarifying your remarks!
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- January 1, 2018 at 7:54 pm
"Mel sucks for sure but its totally survivable these days"
All I can saw is WOW
Rob
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- January 1, 2018 at 9:15 pm
Todd- I am glad you are thriving after all you have been though. I do believe there are a multitude of factors that line up to produce melanoma or any disease state.
I have been a vegan for most of my adult life, a total focus on nutrition and fitness; even directed my masters and doctoral degree projects on healthy foods. I was blown away two months ago to be diagnosed with stage 2 lentigo melanoma. I am age 62, one risk factor; and was a freckled child, 2nd risk factor; Caucasian, 3rd risk factor. That is it. Now, I will live with a skin graft covering half my nose, continue my healthy lifestyle, and thank each new morning for the invitation to live.
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- January 1, 2018 at 10:28 pm
No worries! We can all be a little too sensitive about our health and well-being especially when you’re dealing with something that could potentially kill you. I don’t think that’s necessarily a bad thing. That same passion and thirst for knowledge is the reason great strides have been made in melanoma management as well as other diseases!Thank you for the interesting tidbit about VitD levels and nail/hair growth. While it makes total sense, I’ve never thought about it like that! Is a Vitamin D level a special lab draw, or do they routinely check it after Mel diagnosis? I am almost positive I am deficient, and I would love to know my actual level. I will ask my surgeon about it when I see him on the 8th. I still have to establish with a dermatologist as this whole “You have melanoma” thing hit me like a ton of bricks. I want to arm myself with as much information as possible so that I can be my best advocate.
I will definitely look into boron supplementation. As a living organism, all we are is just a bunch of cells smooshed together in a very specific manner. So many things are required to make us “work”. When things (vitamins, minerals, pH, etc) get out of whack, so do we eventually. I think the main reason for the big warning on borax is misunderstanding of the actual chemical. Boric acid is toxic but borax is not the same thing. Or maybe because there can be some nasty side effects when consumed in large quantities? Who knows? I found a few sites which talk about how to use it in other ways as well as drinking the solution. I may have to try it. Very interesting indeed!
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- January 2, 2018 at 4:40 am
Yes make sure you get a bloodwork readout that includes LDH (Lactose Dihydrogenase), Vitamin D, C Reactive Protein, White blood cell counts (Lymphocytes), Blood Sugars, Various mineral content, Usually a CBC Complete Blood panel would include a lot of those. Put the bloodwork redults in a 3 ring binder and monitor those levels I suggest over time
You want LDH to be falling or low since that reads the level of tumor necrosis (white blood cells killing tumors hopefully) When you have a lot of immune cell activity this level rises since it is thought the contents of killed tumor cells increase it so it is watched to determine overall tumor activity and the immune response against it.
Vitamin D is commonly in the 20's for Americans and you really want that up towards 50 or above. You can't get there using Vitamin D pills imo but you can using a lamp as I suggested, possible skin cancer or not… we've already got that anyway so if what I suggest works, any new skin melanomas would not be able to sink roots since your renewed immune cells would kill it.
CRP is a measure of inflammatory response, a higher level is not good. You want this at the low end of the readings and you get there by elimjinating casein and gluten. Goodby soft cheese, pizza, many dairy products… omg I loved that stuff too! Also wheat, corn, most grains unless fermented so you can still have sourdough since yeast bacteria have probably already degraded the glutens to tolerable levels.
Fluoride detox is crucial, most of us have accumulated innordinate levels by middle age due to the factors I mentioned earlier. Its largely the reason enzyme activity is so low in most people, there is a huge upside to one's health to get your cellular enzymes active again. Possible ways to do it, that is dislodge the highly reactive and enzyme degrading sodium fluorides from tissues probably requires elements that would react with Fluroide ions so your injestible options (not without some risk) seem to include both borax and iodine. Start slow and build with these to be sure you can tolerate, if using iodine be sure you compliment that with selenium or you could mess with your thyroid. Don't be surprised if initial detoxing using these elements makes you smell bad at first lol if you may have a lot of built up fluoride contaminants
Monitoring blood sugar is not a bad idea, you can get the diabetic test strips. If your waking blood sugars are high is a good indication your enzymes are messed up since you are probably not producing the requisite insulin and your overall receptor sensivitiy may be diminished. That is almost certainly cause by fluorides, this a is well studied effect even at low levels which most Americans far exceed.
A good amount of other trace mineral is wise, there are some good liquid options. These are the nutrients that are necessary for your enzymes to work and produce steroid hormones. Steroid hormones are important since they largely control genetic expression in other cells and completely affect the types of RNA peptides, the intercellular messenger hormones which are being produced by ones organ cells. They are truly the key to getting your immune function back.
As to diet, just eliminate as much casein and gluten proteins as you can. Cholesterol laden foods are not as bad for you in this regard, good quality eggs are me favorite. A good amount of leafy greens with a daily amount of vitamin C and A (smoothies are ideal) and enough fresh omega 3 oils, fresh ground flax is best and not fish or other stored seed oils imo due to oxidation issues with stored oils in general.
Remind yourself frequently we humans have an awesome immune defense and control mechanism for destorying cancer cells, that is the basis of all modern cancer therapies. Immune modifiers release the killer cells we create inside to unleash destruction on the cancer growth but unfortunately sometimes they do not have an off switch as happened to my own mother so that is a risk for sure.
You can totally get over this imo but you need to understand its not a disease, its your own cells malfunctioning. The above techniques should address the usual issues that need to be fixed imo. I have incorporated most of these into my lifestyle for almost 6 years and would report back my health seems to be stable and without any bad side effects, actually I no longer really worry over this thing but I still get checkups once a year.
Well good luck to you, I remember whan I got my first mel diagnosis… I was terrified too. The panic and self pity can be overwhelming. I'm uniquely stubbern person with respect to medical treatments and was lucky to have had a lot of time to figure out what was causing my own melanomas to grow. I recommend follow your medical council with the awareness none of the things I mention or suggested are inconsistent with what the docs want to do. On the contrary they would almost certainly benefit most melanoma treatment options in my opinion.
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