Treating estrogen responsive cancer naturally
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ive read those studies too
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I'm 55 and had HORRIBLE SE's with 2 of the AI's. They have them down as allergens for me. I too am looking at quality of life over quantity. I have gotten over most of my SE's, but a few may be permanent. We'll have to see. I am 95-100% estrogen+, 15-20% Progesterone positive. My doc said that the + progesterone is actually a good thing. They tell you massive numbers like 50% greater chance of survival with the meds, but when you extrapolate it out, it's much lower; especially when they consider "surviving" as living 5 years. For me it's like 7-9 MONTHS. And in return you feel like crap and expose yourself to known carcinogens. No thank you. Bottom line for me is that 89% survive without taking anything. Pretty good odds if you ask me given the SE's of the drugs.
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You sound like you had a similar experience to mine Mini1. They wanted to put me on a 2nd AI, or to take a break and take the same one.......I told them that the definition of crazy is to do the same thing over and over expecting a different result. Im not crazy......
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I wish someone would explain the "cancer math" to me. I am not sure how to calculate my odds if I don't take the Tamoxifen.
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Here is a link to the SLOAN KETTERING site. You need to know your pathology. You plug in your info and it gives you your rating, based on your stats and treatment.
http://nomograms.mskcc.org/Breast/DuctalCarcinomaInSituRecurrencePage.aspxHere is another one called CANCER MATH - tho I like the Sloan Kettering one better
http://lifemath.net/cancer/breastcancer/outcome/0 -
Interesting, I have re-started letrozole as was told it is SO important for me, but only taking half a pill (my idea) and within just a few days my sleep is seriously disrupted again......
I was 95% ER positive and 85% PR positive so does the high PR give me an advantage?
I am taking I3C too and Salvestrol and D3........I did the cancermath and it said it gave me an extra 4 YEARS but I am not sure that can be correct......will check out the other site and see what that says, although I always find statistics depressing for me!
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Sloan Kettering does not work for life stats for invasive cancer, told me 90% chance I had cancer in other lymph nodes apart from sentinel but all axillary nodes were removed.....
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Lily - sorry about that - i guess its limited as far as that goes. I didnt realize.
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Thank you so much for creating this forum! I am a 6 year survivor of stage 3 Breast cancer. I have been off Arimidex for almost 3 years now because I did not like the side effects. I am currently looking for natural alternatives. Thanks so much for all the info! I can't wait to get started!
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I had my estrogen levels measured and they were "infantesable." So low they could barely measure them. I have virtally no estrogen. Music to my ears with CA that is 95-100% estrogen positive. :-)
I'm going to go in to see how the other site compares to the site I used for cancer math.
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CA that is 95-100% estrogen positive. :-)
I just dont get all this then.
If your cancer really is/was 95-100% then how it it your levels are so low ? Are you saying that lowered that much that soon? Who tested and how, may I ask ?
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Mini1..I don't get it either, what lowered the ER level so much???????
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My regular doc ordered the testing for me (I asked her to). You'd think with all the things he checks quarterly my MO would do it, but nope. I am menopausal, so that helps, and I've been really diligent about watching what I put in and on my body. I don't know if that helps or not. I don't do any more dairy or meat that's not hormone-free, and I'm uber-careful about what's in my supplements. I don't do packaged foods or drink more than an occasional soda (I'm wasn't drinking any but fell off the wagon). I've got pancreatic issues, but I don't know if that would affect the hormones or not. I didn't think to ask her that. I am small - 98-100lbs. I don't know if that makes a difference either. I'm just glad it is what it is.
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I just wanted to pipe in that I have been taking DIM now for one month and I am amazed at how great it has made me feel. I have more energy and just feel healthier overall, better than when I got diagnosed. My hair feels thicker/healthier. Best of all my period has reduced by about 75% what it normally is. Also, this may sound wierd, but I am noticing that my body type is changing. I have never had much in the way of curves (no waistline) and I am noticing that my body is changing to be curvier. At first I just thought it was the reconstruction but even my husband noticed that I was thinning out above my waist and my hips seem more pronounced. The only wierd thing is I am getting off and on itchy face near ears which I can only attribute to the DIM as I take no other medications at all, except Vitamin D, so maybe that could be it also as I started taking them about the same time. It is really easy to take a pill that makes you feel noticeably better. I take 2 in the morning with a Vitamin D pill and then another 1 at night. Thank you all on this board who mentioned DIM as this is where I found out about it and I am thrilled.
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My regular doc ordered the testing for me
Mini
Do you mind saying of this was a blood test or urine?
Thanks for any info.
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I had asked my oncologist to tell me what my circulating levels of hormones were prior to starting Arimidex. His assistant told me it was under 12. Apparently under 12 is about what you are pre-puberty. When I asked him directly he said that basically it was so low that it could not be accurately detected.
So the question I then asked was why I needed to take a drug that reduced the estrogen if it was already so low that it was not detectable. His answer was that the cancer cells would find even the tiniest amount and grow on that. Well, from my point of view, then it doesn't really matter even if I take Arimidex because there will still be some tiny amount of estrogen floating around. In addition, I have read posts of women who took hormone blocking drugs and still had recurrence.
I have read posts that have postulated that estrogen is not the problem and that it is the balance or other factors. I did a lot of research on various studies and there were many showing that providing more progesterone counteracted the over-abundance of estrogen and stopped breast cancer cells from growing. When I presented them to my onc prior to submitting myself to chemo, he said there was no money in it for drug companies so no clinical trials would be done. (All the studies were in vitro or in vivo, no human trials).
From what I have learned here, DIM has a moderating effect on estrogen. I don't advocate everything that Suzanne Sommers says but I do believe that in regard to hormones she may be on the right track in balancing them in her body and also boosting her immune system.
I have been taking vitamin D and Calcium and Magnesium plus other basic vitamins (the B's, C) and I also take Biotin and N-Acetyl Cysteine for hair - and I have grown back much thicker hair than I had prior to the chemo. I just had a bone density scan and there is no evidence of any bone loss form taking the Arimidex. So the D and Calcium seems to be working especially since I don't eat a lot of dairy. I use Almond milk for my oatmeal or coffee.
Since I stopped taking the Arimidex a few days ago I feel so much better it's amazing. I saw a friend yesterday whom I hadn't seen in weeks and she said I looked so good and that I was "glowing". I have my energy back and no more depression or weepiness. Thank God.
Kathy
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Totally agree with you - about the balancing of hormones - not removing estrogen from the body completely - as we know what THAT does to us - those of us who have suffered the extremes in SEs from doing that.
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Re-posting this for anyone who is older and hasn't seen this.
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Sure makes more sense to me too! Using a pill that kills all the estrogen is taking the easy way out for the researches. And it is a "fits-all" dosage too which is even more mind-boggling!
I remember when birth control pills first came out. They were way too strong and caused heart problems (if I remember correctly)
The hormonals are still "a work in progress."
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I was stage three with lymph nodes involved and very hormone positive, chemo not done for other health reasons so hormones important for me but so is quality of life.....it is a real dilemma as i was pr positive too so how does that impact? ........
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Has anyone else on DIM had their periods practically stop after just one month of being on it? Normally I have a very heavy period that lasts 5-7 days, and it is extremely heavy the first 2 days. My period this month was almost non-existent and it's already gone after 1-1/2 days. I know my onco said that for hormone positive BC stopping the periods altogether would be beneficial but drastic to have a hysterectomy because that has it's own set of problems so the fact that DIM practically stopped my period in one month has got to be a good thing? I know Tamoxifen stops periods for most women. I also had no moody PMS symptoms this month (which I normally do) but I did have a couple of small cramps. Anybody else have DIM be this responsive so quickly?
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I was wondering if anyone has had their onco- ok the use of DIM. They told me at MD Anderson not to take it for it had estrogenic properties. They even double checked with a pharmacist.
Sharon
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It's supposed to reduce the bad estrogen but leave the good estrogen alone. I would think if it was estrogenic that my period would have been at least normal - not almost completely stopping it. I also have an itchy face near my ears which is another sign of menopause and I am definitely warmer - not to the extent of having hot flashes but definitely get hotter than I usually do (I used to walk around freezing a lot of times). My onco had never heard of it but he was going to research it. I have 2 friends who are pharmacists so I'll be sure to ask them about it.
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Thanks Mepic-can you take it with Tam. I am going to the Block Center tomorrow and I will ask them about it.
Sharon
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Ditto to everything above.
Purple - I had blood work done. My levels were less than 11.
My MO is aware I'm taking DIM and hasn't commented on it one way or another.
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Thx mini.
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If you are on a blood thinner you shouldn't take it. I guess it has too much vitamin K in it.
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dogsandjogs - thanks for the link. It applies to those with no node involvement. However, I just can't completely buy into the fact that only nodal involvement makes a difference. There is vascular. Too many women who had no nodal involvement had recurrence.
I absolutely agree about he one size fits all thing. That applied to the chemo and radiation as well. I was very uneasy about the chemo becasue apparently if you are hormone positive it doesn't work as well. Then I was told I was in the "gray" area regarding rads but, hey you need to do it in case. So again there you are doing something that might not even be of any benefit because the medical community has to abide by the rules and also cover their asses.
I asked the onc at the outset if I did absolutely nothing except the surgery, how long would it take for the cancer to come back assuming it would based on my stats regarding speed of growth. He said I would be in my eighties. So what did I gain by doing the chemo and rads? Maybe I damaged my lungs or my heart or both and I could kick it sooner than that anyway!! It's actually morbidly funny.
Kathy
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P.S. I'm going out to the kitchen right now to pour myself a nice glass of Cabernet.
K
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I didn't do the rads because the doc told me my heart would be in the radiation field. Also, I my lung would be slightly damaged and there was a possibility of rib breakage (due to my severe osteoporosis)
He was very up front about the negatives and positives and when I found out the difference was only 4 percent, I decided against it. He left the decision completely up to me which I really appreciated!
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