Cancer is just a symptom of disease

HLB

Hello, I thought I would share with you all my new plan. I have been on letrozole and xgeva for about three years and doing well, but my tm has gone up three times in a row, to 108 right now. eeeeek! I am supposed to switch to aromasin/afinitor. after spending hours reading the afinitor threads and other places, and also knowing someone who took it I became really really afraid of this drug. I do not usually get many or bad SEs, but they are just too serious and not as rare as what I would like to see in a treatment. I went to a holistic Dr yesterday and here is the new plan:

Metformin 500 mg, 1 am and 1 pm

Celebrex 100 mg twice a day

melatonin 10 mg at bedtime. he mentioned this going up to 20 after a bit.

Meriva-SR 250 mg, 2 caps twice a day

get the book Ultrametabolism and follow the diet.

I will aslo take the aromasin and continue with the xgeva, and get rads to the one angriest met at T6. I have three active mets on the spine but the other two are a lot smaller and moderately active. I have about 4 other bone mets that have been quiescent from the beginning of treatment.

there are other supplements I have been taking that I will continue, the usual magnesium calcium vit d etc. he also took 5 tubes of blood for another tm to see where we are at right now, estrogen, testosterone, inflammatory markers, A1c, NK cells. some of the tests are still pending, but the estrogen is low and the A1c is at the top end of normal so that made him think the metformin was a good idea. Inflammatory markers are normal.

I am so relieved to have had this appointment and be able to talk with someone who understands why I don't want to lower my immunity and is willing to do all of these blood tests and really thinki things through! my onc is standard of care and absolutely nothing else. this dr spent an hour and a half with me asking for every little detail of my cancer and treatment history> he looked up the mechanism of action of the afinitor, I could tell he really thought through what the best thing to do would be.

I hope this is effective enough to keep me off of afinitor. I am feeling relaxed and good about this where for the past two weeks i have been in turmoil over trying to decide on this drug. This happened with chemo way back at stage 2. I think so much it drives me crazy because i'm afraid of what some of these drugs can do to me and possibly leave me without a fighting chance, and on the other hand so afraid that if i don't do the drugs the cancer will just eat me alive!

anyway, i have been lucky to have an almost normal life since the mets started, working full time and the only real SE I have is tiredness. I just was not ready to jump into the world of mouth sores, possible pneumonitis, compromised immunity etc. I thought there would be more than just one easy AI treatment before it was time for all of that. So anyway, we shall see. thanks for reading and best of luck to everyone, whatever your treatments are, i hope they are working!

lightandwind

Hi HLB, Good seeing you again. I really got a lot from your posts before. Supporting you here in whatever you decide. Thank you for sharing. Wishing you all good going forward.

DayLily15

hello

i wanted to say i have watched this thread with interest.

even though i have cancer , i "feel" my immuno systems fighting it, showing me the symptoms of a very busy system right now.

seems a bit of a word game - disease,malaise,cancer, symptons, immuo etc.

not many humans forgo ALL modern tech, and not many forgo ALL alternative knowledge.

we all need access to both.

hope some smart scientists are working on a nano-bot computer to "defragment" our DNA .

lightandwind

Found this interesting...

"The key to killing cancer stem cells"

https://jesichashope.wordpress.com/2015/03/11/the-...

labelle

About studies and all that: the Susan B Koman (I'm not a fan of pink but) has a section on alternatives. About flaxseed and breast cancer

it says,

It has been proposed that the lignan components of flaxseed may protect against hormone-sensitive cancers. Early evidence suggests that flaxseed supplementation may benefit the prevention or treatment of breast cancer. Additional research is needed in this area."

The thing is, almost all the things many of us are doing: DIM, flaxseed, Co10, grapeseed, green tea,Vitamin D,

(about Vitamin D "Many studies have looked at the effects of vitamin D on cancer. Positive results have been reported with the use of vitamin D alone or with calcium. Vitamin D intake with or without calcium has been studied for colorectal, cervical, breast, and prostate cancer. A reduced risk of colorectal cancer has been shown with vitamin D supplementation. However, there is a lack of consistent or strong evidence. Further study is needed.")

it says that yes, studies have been done, there is evidence that these things can be beneficial and merit more studies.

However more studies will not be done, because there is no public funding for them and the pharmaceutical companies have no interest in spending money studying substances that could prove as effective and safer than the products they are selling - why would they want to do that, it would be crazy on their part,

The studies for various alternatives are generally early, small and incomplete, but often promising and most importantly, they do exist. It's not like there are no studies and no science backing the choices many of us make.

lightandwind

Personally, if I come here to the alternative forum to share my experience with others and for support, I really think I have a right and reason to expect that, because that is what members on the other forums receive. Alt members deserve that every bit as much as anyone else here. I do not want a bunch of questioning and critiquing of my comments because that IS rude.

I remember the vain thread. Yes you ladies were a bunch of meanies to alternative gals, openly making it hard here for alties, occupying the alternative thread in it's entirety, for pages and pages, suprising people that came there as you posed as alties, only for them to find you pushing chemo, chit chatting, discussing your recipies and making fun of alternative members. They were actively and unapologetically divisive Debic. It happened...and plenty of us remember..

As an alternative member, I am not here to explain myself to anyone, I don't think I should feel obligated to answer questions of people who are doubtful of me, or don't believe me. I don't want them to either. I am not here to explain myself, or educate anyone on alternative treatment. I just want to be left alone with my like minded friends with whom I can share my experiences who will support me as the members on other forums.

I suspect that if enough conventional people wanted to gang up and take over the alt forum again, that would be allowed, and I don't want to be surrounded by mean people. I and no one else deserves that when they come here for support. For that reason, I don't think I'll ever feel comfortable coming here for support.

But if I did, I feel it's certainly not my place to answer questions for people who are always here condescending, pretending to be concerned, while critiquing everyone. Why should I spend my energy on that. As an alternative member if you have a question for me....Google it!

DayLily15

lightandwind thank you for the link. very interesting.

annieoakley

Lightandwind, regarding the article you posted about killing cancer stem cells. One of the nurses who visits me weekly talked to me about proteolytic enzymes and their ability to strip the fibrin coating from cancer cells so that the immune system can recognize and destroy them. She suggested for me to order something called Protease NK. This is the first time other than her talking to me that I've seen something about that. I find that exciting and promising. She said the cancer stem cells hide under a cloak of fibrin which makes it difficult for targeted therapies or the immune system to target. The enzymes essentially strip the stem cells of that protective coating, which is exactly what the article talks about. 

lightandwind

AnnieOakly, yes, I've taken proteolytic enzymes since diagnosis. Really helps support digestion too. Daylily, you're welcome.

annieoakley

Lightandwind, can you tell me which brand of proteolytic enzymes you take? I'm especially interested in this because of the radiation I've had and worry about it creating cancee stem cells. 

lightandwind

I used to take wobenzym, or zyflamend, but now take a rainbow light All-zyme. It's cheaper,

annieoakley

Thanks so much for sharing this. I guess my nurse knows quite a bit about complimentary therapies and this was one of the main ones she recommended. I'm also low in vitamin D so I take 5,000 iu's daily and a once weekly 50,000 iu tablet. When my vitamin D level tests at the high end of the range I will drop the 50,000 iu tablet and keep on my daily maintenance of 5,000 iu's. My oncs are on board with this.

lightandwind

Labelle, I like flaxseed. I take it a lot. Regarding vita d, here's something I found about vita d, acting as a hormone precursor, talks about it's effect on breast cancer. https://www.womentowomen.com/nutrition/is-vitamin-...

Leia

I started this thread. I have read through it, but it has gotten more and more away from my original point in posting it.

Which was to share Dr. Major's podcast about how he put at bay his Stage 4 Brain cancer. That he didn't die in months, as his oncologists told him would happen.

The very first criticism was that Dr. Major is a chiropractor; so, whatever he says should be discarded. That and other comments totally misses the point.

In the Podcast, Dr. Major is making the point that he is still alive today after a Stage 4 Brain cancer diagnosis 4 years ago. And in this podcast, he describes specific scientific/medical tests that he took to understand his own body. And based on the results of those tests, he took action for himself. Only himself.

One of many was that his body does not process sugar; of any kind. He hasn't even eaten fruit in 4 years. The fructose in the fruit is just as deadly to him as High Fructose Corn Syrup.

That is probably not so, for most of us.

Again, the point, this is specific to him. And so emphasizes, when we get cancer we should seek out treatments, specific to our own bodies.

I found this empowering. Which is why I posted it here. I have always been for Alternative Treatments. As I've said, the FOCC changed my life; literally. But Dr. Majors provides a scientific basis for Alternative Treatments.

As I said in my original post, I am NED 11 years from my Leio cancer and 9 years from my breast cancer. With both cancers I only had clear-margin surgery. Nothing else.

If cancer comes back for me, I'm going for Dr. Majors tests. I will never do these conventional treatments.

lightandwind

Leia, I support you wholeheartedly!! Takes a lot of work to research, draw links and conclusions to obtain clarity, and new found confidence in helping yourself be as healthy as you can be. Take care and PM anytime!

sandcastle

I...LOVE the Alt Threads.....even though I do not post a lot on any....I have really learned how other people think....I do lean more towards this way then conventional....but I read both....Liz

leggo

Leia, I apologize for taking your thread off- track. It's important information. Thank you for the link. 

juneping

leggo - thanks......my ankles are much better after i stopped the tamoxifen. I will give my MO a call next monday to update her what the primary doc said. the primary doc said it's probably the SE from tamoxifen because my lungs are clear from breathing, no swelling at my groin and abdomen, it's not blood clot because my lower legs are not in pain and no knotting. but he ordered a blood test for me....

leggo

You're welcome. Glad they're better. Frickin' drugs. They always manage to make you a shell of your former self and nobody warns you. Good that your primary is on top of it.