natural girls
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MBJ- Thanks for the tip. None of my doctors seem to want to test my hormones as they say "they fluctuate", not the MO or RO or BS. I will try to get my general practitioner to test them as I am due to check my vitamin D level. When I asked why they don't at least check to see if my blood is back to normal after chemo and rads I was told "we don't want to go asking for trouble". Whaaaaaat? I have accepted that I have to look out for myself.
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I'm not sure the estrogen 2:16 ratio can be determined through a saliva or blood tests. I just had one and my NP (Nurse Practitioner whose specialty is bioidentical hormones) used a urine sample.
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Designer Mom- mu onc ordered the full hormone panel as I said that was the only way I would try an AI- at the time I had been on my DIM for about a month-she did not realize when she celebrated how very low the numbers were that I had only taken one arimidex and quit before it completely killed me- the one dose knocked me off my *ss and took alomst two weeks to clear...she said I told you it would work...sigh, I just said yep you are right and said we must test this every three months and she said no problem - of course she has no idea it is biorepsonse DIM/activin grapeseed extract, fish oil, coQ10, multi, D3, calcium that I am taking instead of the AI...that is fine...I want the monitoring -so I can lie to save my life....
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annette- Thanks for the reminder that it is okay to fib a bit in order to get the lab tests we need to stay healthy. Here I am searching for labs to pay for tests out of pocket (over $200!). Maybe it is best to just "play along" and do my own alternative aproach and get their medical lab tests.
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impositive,
for my mother-- urine sample was also taken for the test.. she was asked to either
- hold her urine for 10-12 hours and capture all of it in the morning
- or capture all of her urine (10-12 hrs) in a sanitized container
she chose the latter as she cannot hold her urine that long.. she started capturing her urine 8pm in the evening until 8am in the morning-- then she had to give it a big shake-- and use a syringe to get a sample.. then I had to call the Lab-- to pick up the sample from our house before 2pm of the same day.
results was delivered to her endocrinologist---then the endocrinologist explained his analysis of the report to us..
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designermom,
a few ladies I know from different forums also took the saliva tests which can be ordered online.. in the absence of urine test-- probably saliva tests will do
once you receive the results- you probably still need an expert to read the results/analysis back to you..
my mother's results came with a written analysis in plain English-- but initially I was confused about all of the different pathways-- so I had to listen to the endocrinologist explain it using paper/pencil -- diagrams
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cyborg,
about raw diet.. good on you-- it seems Canada, particularly Ontario is supportive of Alternative/complementary theraphies-- I heard it is even covered by insurance..
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designermom: I find I sometimes have to do alot of begging to get certain things done, and you are correct, we do have to be our own advocates. I'm lucky I have some pretty pro-active doctors, however, I still have to ask for things sometimes and sometimes I also have to get pushy.
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Great new research that D3 with Melatonin act synergistically when taken together. Member Timothy (who is a great researcher) posted a new thread:
http://community.breastcancer.org/forum/79/topic/767331?page=1#post_2336615
Thanks for the advice on hormone testing everyone. I'm on the hunt and will let you know what I find out.
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You can got to healthcheckusa and get bloodwork requisitions. You print it out and take it to the nearest labcorp to get the blood draw. There is a hormone panel available and their prices are great. You can then take the tests to your doctor. Dr. Raschid still thinks blood tests are the best way to test hormones. She says they are more reliabel. But who knows, I have had hormones tested by three different doctors. One uses blood, one urine and one saliva. Hopefully, as we get more specialists in this field there will be a consensus. I have the hormone discussion set up for those who want to ask her questions. I am hoping she can come in and reply sometime this week. I am going to add the blood vs saliva questions.
Designer Mom, it was very interesting to me how you said you lied to your doc because he would not order tests. I did an interview with a radio doc and I was telling him how I pretended I was following doctors orders too (at first, now I blow off any doc who will not listen to me). The radio doc's mantra is that we need to be consumers first and patients second. In other words, it is our body and our money and we have a right to demand good service. It always bothered me that people would feel they could tell teachers how to teach, but never doctors how to doctor. We put them on these pedestals. Remember half of their training is from drug companies. We cannot expect them to know much about alternatives. They are taught not to even consider them. So in that respect, we are more educated than most doctors. The bottom line is that we need to stop letting doctors tell us what to do. We need to take their advice and then educate ourselves before we make decisions. It is our bodies. No one should have control over that.
As for the Dim/I3c, I had to stop it because it made my eyes dryout. This probably meant it was working. One of the issues with low estrogen is dry eyes. But I have such bad vision already, I just could not deal with blurs.
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vivre- Thanks for the lab info. I totally agree that it is sad we have to act like deceptive little children in order to "trick" our doctors into doing what they should be doing all along. Thanks for the Melatonin! I have a package headed your way, I promise, I haven't forgotten!
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vivre,
just a question--- isn't it that the blood test and urine tests although considered hormone tests are complementary to each other, and one does not replace the other? I maybe wrong..
I am on your thread on as well-- will wait for Dr. Raschid..
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What a puzzle !!!!
Vivre: I'm staying away from I3c, as I figure I have thyroid problems although the endocrino says I'm within normal range....I hate it when they tell me that ! I've had dry eyes for years (big problem with me) and the ophtalmo referred me to the endocrino for that reason !
Round and round I go
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luan,
how about taking iodine along with DIM/I3C?
vivre,
are you taking Myomin instead?
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Good morning, ladies!
Just wanted to ask a question re: Vitamin C. Does anyone know the difference between Ester-C and plain old Vitamin C? My nutritionist gave me Ascorbic acid vitamin C powder that I am supposed to put into my water several times daily. My husband starting using it for his allergies, and then wants to give it to our children for their allergies. He bought Ester-C for the kids to use, and I am not sure I want them to take it without finding out everything I can about it.
Thanks in advance!
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Nanay: I take a kelp tablet once in a while. The $%?&* problem is I dun't no if I'm hypo or hyper. Endo tells me I have the clinical signs of hyper but I SAY I have the symptoms of hypo. Sound familiar ??? My aunt had thyroid cancer before she developed BC and I'm trying to do a little prevention here - so frustrated
Kinda scared ot taking iodine if I am indeed hyper, no ? Read about some ...... iodine in other posts, can't remember the name of it.
Marianna: I believe Ester-C is a much higher grade than what your nutritionist gave you
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Luan-I have a bunch of iodine info if you want me to email it to you. Iodine is not something to fear. You just need to totally understand it before you jump in. My girlfriend is going through a detox now with iodine and she wants to quit because she is so lethargic. I went through the same thing. It is important to understand the complete protocol. Also Dr. Brownstein insists that we should not put all our faith in test numbers. The standards or norms on tests are just that. They do not apply to us all. If you have low body temp, cold hands and feet, low energy, etc, you are probably hypo. If you feel more energy and warmer with iodine, that is the proof in the pudding.
Nanay, I did try the myomin, upon the recommendation of my compounding pharmacists. Same problem. I have been able to keep my hormone levels pretty low with diet and exercise, so I am forgoing the supplement, though I do eat cuciferous veggies as much as I can. I know there are some on the iodine group who think they are not good for the thyroid, but I happen to believe that foods are the still the best medicine and that I am taking enough iodine to keep my thyroid replenished. Also, I remember one of the hormone docs I spoke to said that the tests give different info and cannot be compared against each other. One will have more info on one aspect and one will have more on another. She said she decides which test, depending on what she info she is looking for.
Maryanne-I just posted a video about lypsomal-c on my website. This is a way to get high levels of C into the body. I heard that the cancer treatment center of america in Chicago is actually now doing a study of using LypsomalC as a chemo. They have know for years that high doses of C will kill cancerous cells. Imagine if this study makes an impact. Throw chemo drugs away. I sure hope this comes to pass. In the meantime, I tried some of the Vit C powders. They are very bitter and were hard on my stomach. I do add lemon to my water all day long. Great for the digestion and a great source of C. I also use Usanas PolyC as it is a combo of sources of C.
Designer Mom and Donna-Glad you found the pure rest helpful. Does melatonin make you have weird dreams? I have this airplane dream where I am on the ground, crusing around in an airplane. We have taken over roads and highways. I find that sitting in the sauna is the best for me. I sleep so good when I do a suana before bed. I can just feel the stress melting away. It is so amazing.
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Hullo Vivre - thanks for the post, would love to receive info on iodine, am doing so much computer these days and with the dry eyes and all
Also, I think you had offered some of us re hormones to be linked, how does that work ?
Hugs
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Morning gals! I've been trying to catch up on all of your posts, and I'll finish as soon as I post this...
How often do you go to your Oncologist? If you are done with Chemo and Rads, and are not taking either Tamoxifen nor Arimidex, or the other Als, are you still seeing an Oncologist for your blood-work, and how often? I stopped taking Tamoxifen because I lost my hearing..... 100% in my left ear, and 50% in my left. I researched this for 2 months, copied all that I could, sent all this info to my Oncologist, the Radiologist, and I quit that pill. It is Deafness from Tamoxifen...So now I wear hearing aids, and THAT'S the reason I am don with taking any more meds. The Medical Profession just does not want to believe that any of the treatments we are supposed to take, cause serious problems, but sometimes they do!
Sure I'm a lot older, but I can't lose many more parts! It's hard enough just putting up with the growing older stuff... So I'm asking, besides the many supplements I take, are you doing anything else, besides eating better...etc.?
I take COQ10....VITD3....A MULTIVITAMIN...GLUCOSAMINE...FISH OIL/OMEGA 3....DIM-PLUS.... CALCIUM, AND AHCC, which is the CHAGA....... So I don't think I need any more supplements ..... Thanks!
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Hi, I'm new to this great thread...I appreciate if I can get some input on my situation...
After BC in 2009, bilateral mastectomy, reconstruction, total hysterectomy, no need for AL's of any kind (And I'm so thankful to that!), my major problem now has been severe hot flashes and all the other side effects for lack of estrogen, and my onco will not put me on any, neither I want to take anything that will increase my chances of BC again.
I've taken Black Cohosh, Dong Quai, CO2 10, Evening Prime Rose, fish oil, mutiple vitamins. None seem to work. I started on DIM-plus yesterday and I'd like to know if any of you had any luck with it for hot flashes.
Thank you, Erika
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Hi ladies,
Anyone hear of filter bubbles on the web? Apparently, not everyone gets the same google results! They change from computer to computer, based on previous browsing history. Here's a video that explains it further: http://www.vimeo.com/21422747?ab
I'm mentioning it here because it might be a good idea for all of us to make it a practice to include links to places where we've found things. I'm thinking about how heated some threads get around here. In light of these 'filter bubbles', it really makes me wonder if those who are so staunchly rooted in mainstream dogma would ever find the same sites that we find. I propose that we all include more links in our posts! Let's burst all those filter bubbles that keep alternatives in the dark!
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chevyboy- I read of your awful hearing loss due to Tamox on another thread. I hope you filed an official incident report with the FDA. Hearing loss was not a SE that I have heard of. If you haven't already read it, I would recommend "Anticancer A new way of life" by Servan Schreiber. It gives great info on lifestyle, nutrition, supplements with lots of research to back it up. You might also want to look into iodine supplementation (lots of us are taking it). You can find out more at breastcancerchoices.org. Good luck.
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Thanks Designer...I saved your link, and I'll look into Iodine.... And yes, I did file a report with the FDA....still haven't heard back.....
It's just that it is so hard to get anyone to believe that this happened....I have talked to several other women, who this has happened to also....but it's too late for me now.....I just want to do all I can, to prevent cancer from coming back, by taking supplements, and also to maybe prevent this hearing loss in other older women! Thanks....
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Chevyboy, nice to see you here! I was wondering about you and the hearing loss. I had started doing a lot of research to see if tamox can cause hearing loss, and I think there is some minimal evidence that it might, but there is also evidence that several of the "big guns" chemotherapy drugs can also cause hearing loss. So I was wondering if yours might be due to your other chemo drugs - the effect can occur after stopping therapy - so you might want to think about that as well as the combination of chemo plus tamox. I am happy that you are able to hear with hearing aids, but know it takes some adjustment. Warmest regards - Linda
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Morning Linda! I found where Tamoxifen is a drug, belonging in a class with the chemo drugs. From what I understand, this is permanent damage to the nerves in my ears...The nerves are like little tiny hair follicles in your inner ear... So not only does chemo cause you to lose your hair sometimes, a chemo drug will do the same with the hair-like nerves in your ears. And from what I read, it happens in women over 60......SOMEtimes....
http://www.chemocare.com/BIO/index.asp
I didn't ever have chemo...just radiation. And I was going to take the Tamoxifen for the 5 years, because my SE's were minimal.... Except after 12 months, my ears just stopped working.
http://www.ehealthme.com/ds/tamoxifen+citrate/deafness
http://www.aro.org/archives/2005/2005_773.html
I wrote the FDA... It would just be helpful for Oncologists to know, that this SE is possible in older women! And it should be taken seriously...
My Daughter's friend, who has BC, and is under-going treatment, was told by her Oncologist that Deafness could be one of the SE's...from Tamoxifen. And this woman is 86, so she is getting chemo, and it is an up & down battle for her....She won't get Tamoxifen though.
You know, it's just so sad, to see younger women with small children fighting their way through this, and for me, feeling like I'm way past that, and wondering how much time I DO have left, but being older, we still try and fight for as much time as we can get!
Sorry, I just got going there.....thanks for posting Linda! Jeannette
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Jeannette,
I looked at the chart on one of the links you sent. It reported 33% of those taking Tamoxifen 2-5 years suffered deafness? I admire the research you're doing. Please keep us informed. I wonder how many women do not receive the deafness disclosure when prescribed Tamoxifen.
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I DIDN'T !!!
and was wondering why I could only hear mumbo jumbo sometimesNor did the onco tell me that Taxotere could leave me permanently bald. One year later, not much hope
AM GONNA HAVE TO FIND ME A NEW ONCO !!!!
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Sorry Luan....From my experience, the Oncologists are supposed to prescribe the known meds to keep us from getting cancer again. They deal mostly with the drug company representatives, and give us prescriptions just for the "prevention"..... I know the meds, are all that we have, but sometimes they really hurt us...while they "help?" a lot of other women! So I would never say they are not worth it....Well maybe I would, in MY case.
I think that if we have a early stage cancer tumor removed, with clear margins, with no lymph node involvement, and have radiation....that THIS is the best we can do...or can expect, that it won't come back again. The Serms and Als, are an extra added precaution, but just SOMEtimes, the SE's are worse than the cancer... Check with your Oncologist, but man, I'm having a hard time trusting them anymore.
Hi Luan....I have not been able to find ANY disclosure about deafness possiblility, even though I have read 5 different sites where they talk about this...Nothing is printed on any Tamoxifen literature....
I even tried thinking about what HAPPENED to me when I was little? What caused this to happen within one month! I took Tamoxifen for 14 months... I wondered if I had some infection or disease, or a brain injury, or WHAT? But all the ENT's know that "some medications" can cause permanent nerve damage. So that's when I started researching this.....
And no, the Oncologists aren't familiar enough with all the "possible" SE's.... I know deafness has happened before, with a few here on BC.ORG, but we have a hard time finding proof, or written articles on this....OR getting our med team to believe this!
I don't even want to see my Onco next month....She wants me to go on Femara...and I am just as afraid of that.
I don't know what to do anymore.....So I'll just go play in my gardens.....
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There is an excellent book that some of you may want to read, and I think should be required reading for every oncologist, cancer surgeon, primary care, radiation oncologist, and every medical student and resident, and every other person who takes care of anyone with cancer: The Journey Through Cancer by Jeremy Geffen, MD. c2006, ISBN 978-0-307-34181-5
Dr. Geffen is a holistic practitioner, believes strongly in making aggressive therapies available, but not in all cases. He advocates for patient values to be taken seriously. He does not necessarily advocate for alternative therapies, but does for complementary therapies.
There was also a recent article that I read that I cannot locate now that indicates oncologists overestimate benefits and underestimate risks and adverse effects when discussing treatment options with patients. I had suspected that, and now there is a study to prove it.
So much of chemotherapy and other drugs cause horrific side effects, but the docs just don't have much better to offer in many cases, except maybe no drugs and some symptomatic support. And did you notice the little disclaimer from the cancer guidelines that indicate they believe ALL patients are better treated within clinical trials? This means there are MANY treatment options and none of them are truly proven standards yet.
Also, I found out that the US population is 4% of the world's population and uses 80% of the world's medications (and 90+% of the world's hydrocodone!). Makes me go "hmmmmm....."
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designermom and chevyboy, how do you notify the FDA about an adverse effect of your drugs? I have been plagued by peripheral neuropathy after taxotere that has affected the nerve endings in my teeth as well as fingers and feet, and I don't think my MO has filed a report. I met a woman who is on the dental faculty here recently and she is going to do a little research on it. I did a Medline search and found that peripheral neuropathy CAN affect teeth and one should AVOID major dental procedures to alleviate it because they can just make the problem worse, but I did NOT find anything that specifically implicated chemo as a cause. I suspect I am not the only person who has had this problem (and I believe there is at least one or maybe 2 more on the taxotere thread who have had similar problems), and I am not sure the FDA or the post-marketing surveillance of taxotere is aware of this. I am getting my hair back, but would trade it in a hearbeat for full function of my fingers (I no longer am able to play piano or other musical instruments, use a dictation system for email - hence the very long posts) and teeth (I puree all my food, am not enjoying eating and am not able to gain my weight back).
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