For Informed People Using Alternative Treatments

yes, my time before diagnosis was very stressful - I'm sure it was a contributing factor.  I'm working on ways to deal with stress.  The biggest way that I have dealt with stress is that I went from full time work to part time work.  I take care of my 93 year old mom, my husband has a chronic pain condition, and I realized it was all just too much - that I couldn't do it all and something had to give.  Unfortunately it was work - but I didn't really think I had a choice if I wanted to have the time to take care of myself.   Doing things like exercising, shopping for or growing healthy food and preparing it all take a lot of time....

Lizzie, about the sugar, it is sort of a myth, as follows: Sugar goes to your stomach and gets digested. Digestion turns it into glucose and it enters your blood stream. However, all kinds of food you eat get turned into glucose and enter your blood stream. That is how you stay alive and are able to walk around.

It is thought that spikes in blood sugar and the accompanying spikes in insulin may not be a good thing for cancer patients. So, it is not really about sugar per se. It is about keeping your blood sugar low and stable. To achieve that, it is probably a good idea to go easy to very easy on sugar, but equally you want to skip fruit juice, white flour, rice and other foods that would give you a glucose rush. So, you want to eat high-fibre and things with a low glycemic index (as much as possible). Also, it helps a great deal to get some exercise. Even a 15-minute walk after meals can do a lot to regulate blood glucose.

gary has been talking about diabetes 3, "alzeimers", & how raw organic coconut oil can help cognetive function

How does the CST find circulating cancer cells?

Kireeus, thanks for the info. I will ask my doc, since I happen to be in Greece

Kireeus, one more question, I see your DX, but no TX. Have you not had surgery?

Hello Kireeus,  Are you getting your treatments at a particular center?  Are they covered by insurance? You and I have a similar diagnosis.... I was too afraid not to go mainstream with treatment, also was unwilling/unable to travel outside of my area to get alternative treatment, and don't know of anywhere close by that does things like IV Vitamin C or artemisenin..... although I have told myself that if I do get a recurrence I will go alternative - I gave the surgery/chemo/radiation a try, and if they didn't cure it, they aren't getting a 2nd chance.

Flaviarose, sorry, I neglected to answer your question about insurance.  The IV treatments aren't covered.  Neither was the expensive chemo sensitivity test ($3500). It would have been less if they hadn't found any CTCs.  By the way, Dr Chue says he's had a lot of success with the combo of carboplatin and herceptin for Her2 positive cancers.  But I'm in the rare position of having CTCs greater then 5 per 7.5ml, and they're not the same as the triple positive tumor, in fact they're triple negative. But Flaviarose, I doubt that you are in my unenviable position,  I think you must have much less chance of having CTCs because your tumor was so much smaller than mine.  Plus i bet you have a much better immune system.  How's your ph?

BTW, I was wondering if other people are monitoring their ph?

Also, I wanted to relate what Dr Chue says about the chemo sensitivity test, "it's good at predicting what won't work, but not so good at predicting what will work."  He says that this is because of the differences between in vitro Vs in vivo effects.  He then told me about fascinating stuff that they're discovering about the way cancers in the body  can avoid chemo, like growing blood vessels to route the chemo away from the tumor, and making membranes to encase themselves.  Also, he says that the tumors have ways of turning off the immune system.  He thinks that too big a blast of chemo at once also suppresses the immune system, that's his argument for the low dose chemo.

So despite the limitations of the CST, personally I think it's worth it to know what won't work.  

I have only randomly monitored my ph... last time I tested it was 7.  It really does make sense that if there are tests to see if our tumors are responsive to chemo, we should all be getting those tests..... sigh.  the whole medical/insurance complex can be daunting to navigate.

For me, I'm feeling pretty darned good.  I finished radiation today, will start arimidex Jan1.  Still will be getting Herceptin until June.  My oncologist says that I'm cancer free right now - and I'm choosing to believe him.  Still somewhat anemic, but it is slowly resolving.  I always thought I had a good immune system..... then I've been reading about a possible link between root canals and breast cancer, and since I have 14 root canals in my mouth, I do suspect that my immune system has been working on keeping any lingering infections at bay, and maybe isn't working as well as it could.  My nutritionist said that if it is the case that the root canals are an issue that olive leaf extract would take care of it.  I'm going to ask her more details of that protocol, and probably start that sometime this winter or spring.  Also want to do a candida protocol.....  I'm actually feeling pretty good - eating really well, taking tons of supplements and super foods (spirulina, chlorella, wheatgrass, mushroom extracts, etc.) losing weight (a very good thing for me), not strong enough to exercise as much as I'd like, but doing some... 

that totally sucks that you got leukemia from radiation exposure.   I also suspect radiation as a possible causal factor in my cancer.  When I was 23 I first had a breast lump - a fibroadenoma - and they said since I was at high risk, they recommended a yearly mammogram - fast forward 36 years - that is a lot of mammograms - and back then they had higher doses of radiation - and often they'd need extra pictures because of dense breasts - and another lump when I was 46 with more radiation.... eh.. who knows.....  and it bothers me that I have had a lot more radiation through this process - especially just having gone through 6 weeks of getting radiation "treatment" - again, it was fear of not doing it that made me go ahead against my own strong negative opinion/fear of radiation....

The R.G.C.C. CST doesn't test the responsiveness of solid tumor cells to chemo, only the tumor cells circulating in the blood, which most people with early stage disease don't have, supposedly.  On their website there is an article that compares this to the way we treat bacterial infections now, where labs get a sample of your bacteria and then test to see  which antibiotic kills it.  On the downside, it's expensive up front, but I think that it must lower costs in the long run because oncologists can rule out useless treatments.  Plus it allows you to know which non-toxic, cheap treatments to use, like IV C in my case.  But the way that protocols are determined now is through the drug studies.  It would mean a big change. It would mean individualized treatment.

I'm very curious about ph because I noticed that in the four or five years prior to getting the breast tumor removed my ph was always low, at most 6.0, even with green juicing and alkaline water.  But since removal of tumor, my ph is low first thing in the morning, but then rises up to 7.6 after a big glass of green juice.  So, I'm speculating that this might mean I don't have any significant tumors.  It looks like I'll be able to test this theory somewhat because I have scheduled a Pet CT scan for next Friday.

The cool thing about monitoring the ph is that it's so cheap and easy. I would love it if lots of people with breast cancer would keep track of their ph and then report any correlations with disease that they noticed, or didn't notice.

Flaviarose, I do think you're right to suspect all the mammograms, not that you had much choice, I  was kind of shocked at how difficult it is to get a breast ultrasound.  I called up a bunch of places and although it's easy to get a mammogram without a doctor ordering it, I never could figure out how to get an ultra sound without one.  Considering the relative risks of the two, this seems so backwards.  I don't get it.  Maybe it's different elsewhere?  I'm in WA state, USA.

Abigail48-You've inspired me to increase ginger use to size of my thumb.  I read a study that said ginger powder was better absorbed than fresh ginger, so I might start experimenting with that too.  It took awhile of eating the medallions from my tea water before I got used to the explosive taste.

Kayb- I can understand the ultra sound interpretation difficulties.  When I look at the images, they just look like shadows.  I admire the people who are able to interpret them.  It almost seems like an art.  But then, I have the same problem with mammograms or dental x-rays.  When the dentist points to some elusive shadow and asks me if I can see whatever he's pointing out, I eventually kind of say, "oh yeah, sure."  But actually...it just looks like a smudge to me.  So I think that it's best to get a trained radiologist to interpret results for both Ultra Sounds and mammograms.  And I'm sorry to hear about the scarcity of them in your rural area.

In the Seattle area, there are lots of ultra sound clinics, so around here i don't think it's the lack of clinics or trained radiologists, it's the rules.  I was in the Bellevue Imaging Center waiting room a couple days ago, and a woman came in asking to schedule an ultra sound of her breast and they told her that they required a mammogram first.  I wanted to run over and recommend a naturopath, since I've discovered that they can order ultra sounds-but I didn't want to seem too crazy.  I don't know if this rule is to protect themselves legally, or some FDA requirement, but it seems like if you're allowed to go get a mamography or Thermography exam without a doctor's permission, why not an Ultra Sound?

I don't understand the rules that don't allow people access to non-invasive technology without a doctor's permission.  I'm not even sure where the rules are generated, or how to go about opposing them. Are they FDA rules or AMA rules or just rules for legal protection? 

Theoretically I think the mammogram technology could be used to scan pregnant women instead of using ultra sounds, but I think everybody knows that would be bad for the baby.  I think for change to happen people have to start acknowledging that the same technology that's bad for a fetus, is also bad for grown-ups.

Odd about the U/S. Here in Greece, I can order my own ultrasounds, as long as I pay. In fact, that was the first thing I did when I found the lump in my breast - booked an ultrasound.

kireeus-If your reliance on saliva pH is to have any significance as an indicator, first thing in the morning, before you drink, eat, or brush, is the most reliable time to test.  Base any decisions you make on that reading.

Momine - even offering to pay for it myself, I wasn't able to find a place that would allow me to order an ultra sound on my own.  I finally got lucky and found a sympathetic surgeon who ordered it for me.  And now I've found a naturopath able to order it.  

BrooksideVT- My breasts are dense, but small sized and my tumor was very close to the surface.  They examined my entire breast and all along my underarm, looking for cancerous lymph nodes .  which makes me wonder- do mammograms show lymph node involvement? So I don't personally know how we'll it works for larger breasts with deeper tumors.  But considering that they use the same technology to look at your organs - they were even able to measure the size of my spleen - I think the sound waves can look pretty deep. Personally,   I'd just like to have the option to make my own decision about getting one, like you did in Greece, Momine.  

Miffwine-thanks for the ph advice.  Years ago, when I first started taking it, I only looked at the morning urine ph.  In fact, it was always so low despite my diet, that it depressed me and I gave up checking it for years.  And then after noticing the lump, prior to removal, I took an interest in my ph again, and that's when I noticed that not only was it low in the morning, it was locked into being low, even immediately after drinking green juice or alkaline water.  In contrast, post tumor, my ph goes up immediately after drinking anything alkaline.  Just my personal experience...I don't know if anyone else has experienced the same.  But I am curious to know...

For me it was a mammogram first, then another mammo for additional views (they clearly knew something was up) with a biopsy on the same day, then the dreaded diagnosis, then an ultrasound, then an MRI and finally surgery. Well, the first surgery!  

I was led to believe that all are useful tools to detect something abnormal but mammo is the gold standard before they will order anything else. By the way, none of those were able to effectively determine the size...surgery did that. I went into the lumpectomy surgery thinking I was stage II and came out stage III. Had a bunch of chemo and then a MX. 

re tea bags.  I also think about what was the paper bleached with, & the string.  some organic teas have natural paper/string