An Alternative approach to Stage IV Health and choices

Wow, that's life.....You really do a lot of reseach!  I think that's what helps us understand why WE got our cancer....or maybe not.  I mean who can really tell?  You read about the women who are life-long athletes, who are ideal weight, always eaten "right" and get cancer at an early age.  Even Vegetarians who are so in-tune with their bodies, get breast cancer.

I read once that maybe it is because we were "injured" when we were small...Maybe our breast was hit, or had trauma along the way, and then years later cancer developed.  Or maybe it was all those hormones, like "the pill" or the estrogen therapy I took since I was 27....Or maybe again it was the Saccharin I have used, like in the diet sodas!  

Honestly, no-one can say "why" I got breast cancer. And no-one can say why Tamoxifen made me go deaf! It just did..... There is nothing I could have done, to not have this happen.   Sometimes when you think you are doing all you can for yourself, that road takes a sharp turn & knocks you silly!   Who knew?   All we can do is go on.....................and not try THAT one again.

I think if we take care of ourselves, are aware of what we are eating and doing, or NOT doing, then that's about all we can do.

When I reasearched "Deafness from Tamoxifen" I also saw an article about this on PubMed.... And again, researching the link between breast cancer and artificial sweeteners, they swear you get cancer because of using that!   

Sometimes there is no "right" answer.... We are all different.

I guess I'm like Marybe, in the feeling that I'm gonna live as best as I can, and not let breast cancer or any other disease control me..... It's like I'm going to live until I die.... or something like that.   Take good care.

thatslife has welcome to this thread any bc women who or stage who might contribute to who are looking for alternative approach to treating their cancer. For those who think I have no right to be here know that thatslife invited us to this thread. I do not go to the stage IV threads. This is a thread hopefully to educate and to help us improve our lifestyle, and overall health. No one knows for sure what caused their cancer, but we all know that sugar feeds cancer, and lack of exercise does not aid our immune system. No one here has all the answers.

And for those who are offended by me being here, please take in consideration that right now as the doctor said I won't be staged until after surgery and further test. So, far the biopsy, 2 Cem puts me at idc with the aggressive her2+++. I've living in the unknown factor until after my surgery on Dec 27th. All the early stagers know that if we aren't proactive that we too could very well be stage IV.

So, the alternative forum is for those who are working together to share what's working for us. Sorry if any of you stage IV bc sisters are offended by sharing that a positive attiutde helps with pain. Perhaps this is why I feel that Maybe has been pain free, who by the way has bone mets.

I like hearing everyone's viewpoints. I think it's important to keep an open mind. I just read on another thread for example that DMSO and/or (?) ethanol might work together with Avastin to enhance tumor angiogenesis (blood vessel growth) inhibition.

Marybe, mushrooms are supposed to be cancer fighters! I think it was a Chinese study that showed the combination of mushrooms and green tea reduced breast cancer risk by 80%.

Regarding obesity (thanks, thats-life), a related study shows a link between insulin levels and breast cancer risk. http://www.sciencedaily.com/releases/2009/07/090709170819.htm

In one subgroup "women in the upper third for insulin level had a more than three-fold increased risk for breast cancer compared with those in the bottom third." Insulin is known to enhance breast tumor growth in animal models. So getting insulin under control by diet, exercise or by taking metformin (as a calorie restriction or exercise mimetic) can help us.

Speaking of diet, now that I'm no longer fasting, I am losing weight. I guess I ended up eating more than I should.

On a new anti-cancer strategy for me: I saw my onc recently and he readily prescribed baby aspirin after I questioned him about it. He mentioned that it was a good idea to prevent colon cancer as well. A new study shows that platelets are a key player in metastasis. To the extent aspirin suppresses platelets, this could be part of the reason along with COX inhibition for its anti-cancer effect. http://web.mit.edu/press/2011/metastasis-platelets.html It's interesting that platelets and white blood cells are now being seen as likely factors in carcinogenesis and metastasis. This would suggest that not just aspirin but some chemo might actually benefit us by suppressing our immune systems, and not allowing cancer to get a free ride on our own immune cells.

But maybe this paradigm isn't for everyone, nor would the same dosing apply to everyone. It would probably pay to seek out a "functional profiling" lab as in this video. I wonder...Anyone do this?

http://www.youtube.com/watch?v=4bwx-Z2ANq4

Sorry, I know this post is ALL over the place. But I just wanted to get my thoughts out.

thats-life, your on it!!  I am amazed at the information you post. 

I have often had the same thought about people who probably lived years with cancer only to die within months of taking chemo. That was one of the first thoughts I had when I was diagnosed.

Morning gals!  That'slife.... Yes, that is one of the websites I was referring to.... But there are at least 4 other gals on these boards that also lost their hearing, and 2 are much younger than I.  I just wanted the drug companies to at least put a "Warning" on the labels...

Yes, drugs can cause hearing loss, sometimes only temporary, like taking a LOT of aspirin at one time, but the hearing came back in that person.

I used ear candles, which always helped remove wax...(I still do)  I used the "Netti-pot" nasal rinses, plus a prescription nose spray.  (The PC first thought it was allergies)...AND the Claritin...  I even tried holding my nose closed & blowing...they pop, but never open..... The ENT said it is permanent, but it's just hard to believe that....

 And yes, Medici ....my left ear especially will "click" and ring, or "roar"....and sometimes it's worse than others.  The Costo Audiologist gave me "Calm Ear"....Because I was allergic to the little plastic "anchor" things that stabilize the tiny plastic piece in my ear.  But that all cleared up...

Honestly, the Hearing Aids are great...from Costco...  At least you know you can get help.  And their test is free.

That'slife, I don't have a orderly exercise program, but I'm always busy doing something, or we go walking all over the malls, Mile Hi Farmers Market, and in the Summer I'm always working in my gardens, and cleaning our yard.  My Daughter & I just installed a Laminate flooring in the bedroom, but we gave up on trying the big dining/living room!   We had a flooring guy do THAT job!  Man, my knees took a beating!  And I love to paint and  lay floor tiles, re-arrange closets, etc.  But I think I do pretty good for being 74. Ha!   I really believe in staying active...But walking is what we do best.

Heidi...I didn't know about the Maldives treatment.... But I have used "ear candles" for wax removal...it's really simple, and my PC says, "whatever works."  It's better than when they put that fire-hose in your ear to flush it out! 

Sorry about all the ear-talk gals, but maybe it can help someone....

Thanks for the pic, chevyboy. Now I know not to go too far with those q-tips so as not too damage those hair cells.

Here is a link to a 1965 article on the natural history of breast cancer. Raises some interesting questions. Wonder if some have been answered in the intervening four decades.

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1847027/pdf/brmedj02607-0018.pdf

Natural History of Breast Cancer

Cancer of the breast is a notoriously malignant tumour. It

spreads relentlessly through the parenchyma and surrounding

fat to the overlying skin, and soon metastasizes to the axillary

lymph nodes. But its lethal effects are related to the frequency

of blood-borne metastases in distant sites such as the lungs,

liver, and skeleton, especially the vertebral column. The

duration of life in untreated cases is usually about three years,

but the range varies from a few months to over thirty years.'

Some of these tumours are hormone-dependent, and a regression

may follow bilateral oophorectomy and adrenalectomywith

or without hypophysectomy-but the effect is only

temporary.2 3 In four cases metastases regressed spontaneously

after mastectomy.4 Breast-cancer cells tend to lie

dormant in the tissues for long periods of time,' and metastases

may suddenly appear as long as thirty years after the

successful removal of the primary tumour.6 Intercurrent

illnesses and operations sometimes act as precipitating factors.

It follows, therefore, that no matter how early and thorough

the treatment there is a danger of recurrence and metastasis

so long as the patient remains alive.7

Despite the variability of the course of the disease, it is

possible to predict the degree of malignancy of individual

tumours with reasonable accuracy. H. J. G. Bloom and his

colleagues have investigated the prognosis of breast cancer,

and find that the two most important factors are the extent of

spread, or stage, of the tumour and its degree of differentiation,

or grade.8'- Thus a tumour confined to the breast itself

(stage I) and well differentiated (grade I) has a much better

prognosis than one which has spread to the axillary lymph

nodes (stages II and III) and is very poorly differentiated

(grade III). In a series of untreated patients they found that

22% with grade-I and grade-II tumours survived over five

years, whereas no patient with grade-III cancer was alive after

53 months.'1 Age itself bears no relation to prognosis,9 but

pregnancy and lactation are periods in which particularly

lethal tumours occur.

It is very common for a patient treated as promptly as

possible to succumb to widespread metastases within a year.

The value of early treatment in reducing the mortality rate

from cancer of the breast has been seriously questioned, since

sometimes spread of the tumour by the blood-stream may

occur so early that interference is impractical. Furthermore,

the good results of treatment in stage-I cases might be due to

many of these tumours being intrinsically non-lethal and nonmetastasizing.'

2 1 But even in treated stage-I cases with

grade-I tumours the survival rate falls with the passage of

time, and most of the patients die of breast cancer." So also

do the great majority of untreated cases; only 5% succumb

to intercurrent disease while the tumour remains confined to

the breast." The value of treatment is confirmed by the

finding that 82% of treated cases of grade-I tumours and

33% of grade-III tumours survive over five years as compared

with 22% and 0%, respectively, of untreated cases.'"

Nevertheless, it is common for patients who delay over a

year before seeking help to survive at least as long as those

who are treated as soon as the disease is detected.9 In a

recent paper Bloom has investigated this paradox, analysing

the relevant factors in great detail."5 As cancer spreads with

the passage of time, and the prognosis worsens as the stage

advances, it follows that delay must affect the outcome of the

disease. But in tumours of great intrinsic malignancy distant

spread occurs so early that even the most expeditious treatment

can seldom prevent death. As the most malignant

tumours tend to produce the most alarming symptoms, they

are likely to be diagnosed earlier than the more slowly

growing types of cancer, in which early treatment does

prolong life and delay is most serious. This shows how

important is the intrinsic malignancy of the individual tumour

when the effects of delay or a particular therapy are being

assessed in relation to survival rate.

Unfortunately it is very difficult to assess the intrinsic

properties of cancer in an individual patient. As regards

breast cancer, grading in terms of differentiation and nuclear

morphology has been shown to correlate fairly closely with

the pattern of behaviour of the tumour.8' While even

tumours of low-grade malignancy may metastasize at an early

stage, probably these develop slowly and become active much

later than do the metastases of highly malignant tumours.'0

Perhaps the intrinsic malignancy of a tumour is related to

factors of host resistance, and the degree of differentiation is

merely an expression of this. If this is so it might be fruitful

to spend more time studying the metabolic, immunological,

and psychological responses of the patient herself.

Medici, I was told that any drug can have bad effects on the nerves in our ears, especially ones like Tamoxifen, which also caused my hair to really thin out, and since the nerves in your ears are like little "hairs" they were damaged.... An emergency Doc I went to a few months ago, looked in my ears, after I took the aids out,  (I had bronchitis & asthma....) & I asked him, "Have you ever heard of Tamoxifen causing hearing loss?"  And he said, "Yes, a few times, although it doesn't happen enough to be reported." 

Heidi...thanks for that link and article....I have to read it over again & then "save" it with my medical information!

I've had tinnitis for about 12 years, but it is suddenly much worse, and consistently so.  I had wondered if Femara was to blame...

But then again I've been drinking a mug of coffee every morning since the weather cooled, and I know for a fact that coffee, too much salt, and poor sleep have always made my ear ringing noticeably louder for a day or two.  The volume also rises remarkably for several days after any surgery.

heidihill -- can you tell me more about putting coconut oil in your ears?  How do you do it, and why, and does it seem to help?  Thanks.

About ear candling... please, y'all be careful with that.  I stopped candling many years ago when some scorching hot wax dripped back down the candle and burned the living daylights out of my eardrum.  You can't imagine the pain, trust me.  It took a long time for my ear to recover from that.  Frankly, I have wondered whether THAT incident is what damaged the cilia (little hairs) in my ears and caused my tinnitis in the first place.  

Sometime after that I became skeptical of the claims about candling, and as an experiment a friend and I lit a couple of ear candles and let them burn over a clean plate to see what would happen.  We examined the candles afterward, and were dismayed to find that the collection of matter inside those candles was identical to matter we had observed inside candles after ear treatment -- leading us to conclude that all that junk which we had been led to believe was ear wax, pollen, and such was actually just the residue of the effect of heat on the candle material.  So... I don't know what I think about all of that anymore.  

If you think candling helps you, just please be super careful!  At least have someone shine a bright flashlight on the candle the whole time it's burning.  That way if they see a shadow of anything dripping downward, they can spare you the agony of a scorched ear!  And it IS agony, believe me.

Oh Dang!  I just lost a post by going back to read that article you posted Heidi!  Thanks again for that....I copied and pasted & will read it again!

Kaara.... I don't mean to scare you about Tamoxifen....because it doesn't happen to very many women....  And actually the SE's were not that bad for me.  I only wish I could feel "safe" like I did when I was taking it!   It just scared me so much, that I didn't want to even try the other Als....

But your team is right, you won't know all about your cancer until the "Final Pathological Report" and be sure to ask for a copy!  That will tell you the size, margins, about your lymph nodes, etc.

Your biopsy was only a clarification about your having a malignant tumor, and the approx. size.   Also they will send some of this tissue to be tested for your Onco test, if you have one.

That was funny.... About growing old gracefully...Ha!  I know I'm growing "older" but I like to think I'm just growing up....I like the "gracefully" part....