Back again! Now at Stage 3a. Help, hope and advice needed please

I am sorry you are going through all this, Jess.  It is not easy.  AND, we know melanoma sucks great big green stinky hairy wizard balls!  So….you can't take anything for granted!  BUT…it is still unlikely that the node that lit up is melanoma.  However, you are forced to figure all that out given your diagnosis!

I guess the most important thing that I decided as a Stage IIIb patient in 2003 (when NONE of the current FDA approved treatments for melanoma were available, but with two kiddo's aged 10 and 12) was that while I may die from melanoma (or any number of things!!!), that day is ~ NOT TODAY!!!  I refused then…and when I advanced to Stage IV in 2010…to give melanoma my life before it took my life!!!  

On the bright side, I finally got access to what is now called Opdivo in a clinical trial after being rendered NED though radiation (to a brain met) and surgery (to a lung met).  After being treated from Dec 2010 to June of 2013 – I remain NED for melanoma with no further treatment!!!  So….if this can work for me and ever so many others….it can work for you as well.

Unfortunately, one more serving of carrots is not going to cure or prevent melanoma.  I've studied EVERYTHING that has been touted as helpful in melanoma for YEARS!!!  Bottom line….a healthy diet with exercise and all the things we've always known we should do to take care of ourselves will help you be your healthiest self.  On the other hand…there are a few things like Vitamin D and curcumin that do have data behind them.  As does eating foods with "active cultures" in them seem to help with response for folks on immunotherapy.

I recently posted this for another person looking for diet and lifestyle data as it relates to melanoma.  I've copied and pasted it here.  I fear the links are not going to survive the "copy" process, but you can copy and paste them in your search bar if you are interested:

If you want literature from real live studies…girl….I got it!!!  I have been following EVERYTHING that "cures" or "kills" melanoma in the RESEARCH for YEARS!!!

Here was the 10th reivew with links to prior posts:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/04/everything-cures-melanoma-installment-10.html 

Lots of things (foods and compounds) kill melanoma in its tracks ~ in the petri dish!  The difficulty is how to make them do that when you eat them.  Curcumin is one of the few supplements that has demonstrated REAL results.  Here are tons of reports on curcumin itself: 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/02/for-melanomaeat-that-curryagain-we-just.html 

Here's a review of many of the diets touted to cure, prevent, ameliorate – you choose the word – cancer:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2013/01/better-diet-advice-for-melanoma_13.html 

Like red wine and need radiation?  Here you go –

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/01/red-red-wineboosts-radiation-effect-for.html 

Now, Vitamin D has shown to be important in melanoma:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2014/12/vitamin-d-and-melanoma.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/vit-d-and-melanoma-part-2.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/01/vitamin-d-low-levels-associated-with.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/vitamin-d-and-melanoma-folks-with.html 

Reports (with links within) on alternative medicine:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/06/alternative-treatment-for-melanoma.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/05/combining-alternative-and-conventional.html 

There's work on NSAID's –

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/09/an-aspirin-daykeeps-melanoma-at-bayand.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/trial-to-test-aspirins-ability-to.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/04/celecoxib-stuff-thats-in-nsaids-like.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/06/asco-2016-final-odds-and-endsa-study.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/08/soooadvil-works-for-some-melanoma.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/aspirin-nsaids-and-melanoma.html 

And work on anti-oxidants:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/10/the-latest-antioxidant-contraversy.html 

Some very interesting data regarding our intestinal biome (esp as a way to enhance response to immunotherapy):

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2015/11/cooties-in-our-gut-keep-us-skinny-smart.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/02/intestinal-bacteria-as-way-to-determine.html 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/06/asco-2017-melanoma-anti-pd1-and.html  

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/11/back-to-cooties-in-our-gutsagain.html

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/01/microbes-againand-how-they-may-be.html

How antibiotic use may affect that as well: 

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/02/antibiotic-use-may-decrease.html

This study on meds used in general by melanoma patients while on ipi:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2016/09/a-look-at-effect-of-routine-meds-used.html 

Smoking as it impacts melanoma in sentinel nodes:

https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/05/smoking-is-associated-with-mets-in.html 

Cancer and sugar:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2017/10/cancer-and-sugar-oh-lordy-lordy-here-we.html 

Alkaline diets:  https://chaoticallypreciselifeloveandmelanoma.blogspot.com/2018/04/alkaline-diets-and-complementary.html 

Whew!!!  That's a lot of research over a lot of years.  I am not ANTI-alternative or complimentary meds.  I AM anti scammers taking money from cancer patients for bogus treatments.  I AM anti desperate folks opting for bogus treatments instead of those that may actually save their life.  I am FOR anything that will help melanoma and cancer patients.  That said…if eating yogurt would do it…or that one extra serving of vegetables…none of us would be in the predicament we find ourselves in!!!  Still…I believe in a healthy diet.  I have eaten ALL the vegetables for years.  I believe in exercise.  Been doing that too.  I have never smoked…and don't thing anyone should!!

Overall, however, I think the only things we can definitively say really help prevent or minimize melanoma (apart from targeted therapy, radiation with immunotherapy, etc, etc) is:  a healthy microbiome (eat that yogurt after all), possibly curcumin (add mustard and curry to everything), possibly coffee, exercise, sunscreen, no tanning beds, and vitamin D.

Don't know if this helps you.  But the data is real.  Take from it what you will.  It was free!!!  Wishing you all my best.  Celeste

Just saw that my links do not work (as I feared would be the case with the copy/paste technique) nor did they copy properly.  Here is a link to the thread on the board that contained them if you are interested:

https://www.melanoma.org/find-support/patient-community/mpip-melanoma-patients-information-page/anti-cancer-diet  

Hope that works!  HA!  c