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I'm new here. Feeling alone and afraid.

Nashelba
Posts: 1
Joined: Dec 2012

I was first diagnosed with stage 3 Melanoma back in 2008. I just recently found out that it is back. Metastatic lessions have been found in my liver, the base of my left lung, one node in my thoracic cavity, another one under my right arm, and also my brain.

It has been spreading very quickly. In early December there were 3-4 lessions in my liver and "several" lessions in my brain. I started Zelboraf late in Jan. (It took that long to get ahold of it.) The lessions in my liver spread throught my whole liver while I waited to obtain the Zelboraf. The lessions in my brain have become "too numerous to count" in spite of the zelboraf. I'm starting whole-brain radiation within the next week or so. So, yeah, I'm pretty scared.

The thing I think scares me the most is that I am a single mom with 3 teenagers at home. The youngest just turned 14. The thought of having to leave my children while they are still so young is unacceptable. Yet, I realize I may have no choice in the matter and it really gets me down.

Any advice or words of encouragment would be appreciated.

joelcairo
Posts: 8
Joined: Mar 2013

Sorry about your situation. I don't usually hang around here, but I found this and thought I'd give you my point of view...

Do not give up hope, even if you're dealing with an oncologist who clearly doesn't believe remission is possible. Responses do happen. Your doctors have some good conventional treatments available to them (Zelboraf, Yervoy, possibly several other drugs).

My personal philosophy, based on having read hundreds and hundreds of scientific studies, is that there are many, literally hundreds, of drugs, foods, supplements and lifestyle choices that have anticancer effect. These are not necessarily cures, of course, but they make the body less hospitable to the growth and spread of cancer. There are dozens more that promote cancer. To put it in the simplest possible terms, maximizing the first category in your life and eliminating the second category will undoubtedly have a positive effect.

The negatives include alcohol, most omega-6 ("bad") fats, iron, copper, vitamin B1, folic acid, zinc, cadmium, chromium, casein (milk protein), aspartame, and of course SUGAR AND OTHER CARBOHYDRATES. These all promote various hormones and signals that trigger cancer growth. Also stress and negative emotions, so figure out a way to manage these, via meditation, therapy, laughing yoga, whatever.

The positives include omega-3 ("good") fats, melatonin, curcumin, genistein, quercetin, tocotrienols, astragalus, ashwagandha, artemisinin, sulforaphane, bee propolis, lycopene, caffeine, pterostilbene, vitamins D, K and K2. Also superfoods like cinnamon, garlic, ginger, green and black tea, coffee, cocoa powder, blueberries, and mushrooms, lots of mushrooms (especially shiitake, maitake, reishi and cordyceps). All these things are nontoxic or have very low risk of toxicity or damage to healthy cells.

Also Celebrex (800 mg), along with some other NSAIDs such as aspirin or indomethacin. The evidence for these is very strong, not just as a preventative but for blocking cancer at all stages.

Seriously consider a ketogenic diet (extremely low carb, like Atkins induction phase), especially if there are mets to the brain.

Finally, EXERCISE. Exercise is highly beneficial. In my opinion this is largely due to the need to keep body tissues oxygenated.

Of course you should check with your doctors to make sure nothing you're taking is contraindicated because of whatever treatment you are receiving.

Here are some common dosages of key supplements for cancer patients. This is from memory, so please do some research on your own and don't assume everything I'm saying is correct. You might want to work up to these doses over a few days.

- curcumin - 8 grams per day; the Meriva formulation is much superior to plain curcumin, and liposomal curcumin is the best; if you go the liposomal route, you may not need as much as 8 grams; note that liposomal is kind of expensive and hard to find, although there are a couple of suppliers that can be found online

- green tea extract (EGCG) - 4 or 4.5 grams of EGCG per day; take with a small amount of sugar for absorption and with coffee, tea and/or cholocate for the epicatechins, which are synergistic with EGCG

- ashwagandha - 6 grams per day; you might want to cycle this on for 1-3 weeks and then off for a similar length of time

- modified citrus pectin - I have not used this yet, but it blocks galectin-3 (IIRC) and helps prevent tumors from subverting your immune system; dose is 15 grams of powder per day

You may not be interested in going this route. If you are, there is a lot of detail packed in here and you should do some research in reasonable, progressive and curent books on cancer, and also in Google Scholar.

Good luck

 

joelcairo
Posts: 8
Joined: Mar 2013

P.S.

Cruciferous vegetables: brocoli, cauliflower, kale, cabbage, brussels sprouts, mustard, horseradish, etc. These have so many healthy substances in them. I eat them every day; if I were in the same situation as you, I'd eat them at every meal.

Probiotics. Good ones. Unfortunately good ones are expensive (50 cents to a dollar per pill).

IP-6. Take on a completely empty stomach with a full glass of water, 4 hours after eating and a half hour before eating anything else.

Metformin, an anti-diabetes drug which is preferentially toxic to cancer stem cells. How exciting is that? It's been around for many years. Cheap and quite nontoxic.

Shop online, at Swanson Vitamins or a similar retailer. Between their house brand products (which seem pretty good to me as long as you are getting standardized extracts and not just raw herb in capsule form) and the discounts they offer on name brands, you can cut your costs in half.

MelanomaisNOTme's picture
MelanomaisNOTme
Posts: 3
Joined: Mar 2013

My name is Rick.  I was diagnosed with Stage 2a Melanoma in January of 2012.  It has changed my life completely.  I have passed my one year anniversary and just took my yearly x-ray of my lungs.  No one knows how I feel...not my three children (all teens), my wife (who I am currently separated from), my parents (though mom has dementia and dad is dying from locally aggressive prostrate cancer), or my siblings (I am the youngest of seven). 

The only one who seems to have an inkling of what I am feeling is my girlfriend.  She is supportive where everyone else is dismissive. She gets that I have inner turmoil at times.

I get a lot of "You'll be fine." which infuriates me to no-end.  People do not seem to grasp the concept that the sun is no longer my friend. They think that skin cancer is "no big deal."

I wish I had the words to reassure you.  All I can tell you is that you are not alone in your fear.  I hope that is reassuring somewhat.  You are NOT alone in your fear...and I do find it reassuring that I am not alone in mine.

Please reach out to me at any time...day or night.

http://www.youtube.com/watch?v=qoGa84U5hDo

Zod66's picture
Zod66
Posts: 28
Joined: May 2008

You did not go into any detail on your relationships with your children so I will assume they are positive in nature. With that assumption I would say they are of age that you need to ask them for help and keep them informed and involved in what is going on. Treat them like adults. They love you and want to be there for you so let them. Don't "protect" them from the truth. Be up front, honest, and take them to doctor visits with you so they can ask their questions. Let them know you're afraid and cry together not alone in the dark with your face buried in a pillow.

Go through this together as a family.

irishhopeful
Posts: 11
Joined: Apr 2013

Nashelba.....you're with a community of friends here....and i'm a newbe, and have felt such warmth over the past week or so....take heart in the support you will get here and know that all are behind you.  Zod66 and joelcairo have great points there....wrap your family round you...they love you and they are of an age that they would want to support you....and, also....I've read that cruciferous vegetables are a v/good source in our fight against this disease.....have increased my own intake of broccoli etc.  Best wishes for you and your family.  

jorles
Posts: 2
Joined: Nov 2008

You are right in that this is extremely frightning.  And you first thoughts are to your children.  You look to others to tell you it will be alright but you also need facts.  This is a path that all cancer survivors must go through.  No one can eliminate the initial fear you feel but knowledge and action are the keys to getting through this dark time. 

There is excellant advice that has been posted by others on this board. Detox you diet immediately.  Remove sugar, white flour products and add vegetables.  Excercise (every day) even if it's just a walk around the block.  And de-stress, this is not easy at this time but just take a moment to take deep breaths through out the day.  Make sure you check with your doctor about any suppliments you take to be sure they don't interfere with any meds you may be taking.  Move forward to battle your disease.  I realize this is a month after your original post so hopefully you have already made some of these changes. Best of luck.

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