Team ILC Warriors
Comments
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Anyone see this study on Avemar? Supposedly more effective than other hormonal therapies! http://www.alternative-cancer-care.com/avemar-cancer-treatment.html
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Joelle, I have come across this product before. Apparently, ER+ patients should be cautious with it, according to MSK:
"Further, WGE increased estrogen receptor (ER) activity in vitro. However, when used along with tamoxifen, an ER antagonist, it enhanced efficacy of tamoxifen in ER positive breast cancer cells (5). The antitumor effect of WGE is comparable to other endocrine treatments in animal models (11). WGE also increased production of tumor necrosis factor and cytokines that are responsible for tumor cell death (6). Data from pilot studies indicate a beneficial role for WGE in patients with colorectal cancer (7) and in reducing treatment associated febrile neutropenia in pediatric cancer patients (8). It also prolonged survival of patients with melanoma when used with chemotherapy (13). However, these effects must be confirmed by large scale, well-designed clinical trials.
Because it potentiates estrogen receptor activity, patients with hormonal sensitive cancers should use WGE with caution. Reported mild side effects include diarrhea, nausea, flatulence, soft stool, constipation, and dizziness." http://www.mskcc.org/cancer-care/herb/wheat-germ-extract0 -
Hi there...I clicked on your link for Avemar and don't see where this quote is? What is WGE? Form of Avemar?...Can you send me the study? Thanks!!!
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Hi Sisters! I'm back from my MO appointment. Good news on my end ~ no chemo! My oncotype score was 15 and having chemo would only lessen my recurrence rate by 1-2%. My doctor said, "I do not recommend it. However, if you really want it and push for it, I'm not going to say no." I'm taking her advice as well as listening to my gut instinct. Unfortunately, the first available appointment for my rads consultation is not until the 14th. More waiting. In the meantime, I'm going to go enjoy a nice, ice cold glass of beer! A treat that I rarely indulge in anymore. :-)
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Joelle, it is not a study, just a synopsis of the available info: http://www.mskcc.org/cancer-care/herb/wheat-germ-extract
WGE is the acronym they use for wheat germ extract, since Avemar is a product name.
As far as I can gather, the product can be helpful for certain cancers in conjunction with conventional treatment. I doubt, however, that it is a reasonable substitute for AIs or tamox.
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Great news, Amy! Congratulations!
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Congratulations Amy on your low oncotype; radiation will go faster than you think. I am 3/4 of the way done and anxious to start Tamoxifen. Happy to hear your good news.
Be well, Nancy
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Here is a study saying it's more effective than tamoxifen...http://www.alternative-cancer-care.com/avemar-cancer-treatment.html
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Joelle, the link I gave you is fully footnoted. The study you linked is part of the synopsis I gave you (footnote 11).
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I will look more closely...the quote you quoted is a discrepancy to what i had quoted...I will investigate!
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The link you provide is a Disclaimer...I don't see any footnotes? I must be missing something?
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Joelle, I really don't know why the link does not work for you. It is the site of Memorial-Sloan-Kettering. If you google that and "avemar" it should come up. The article gathers all the references on this substance.
The study you linked was done on mice. The MSK site notes this. I am guessing that there are other factors at play in actual people. In any event, it would probably be good to check with an onc, if you plan to take it.
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So many studies out now saying Tamoxifen does not help ILC as they had previously thought and may not be worth the risk of side effetcs..http://www.medicalnewstoday.com/articles/127571.php
So, I am definitely taking my DIM, cutting out hormone factory farmed dairy and meats and going to look into Avemar further...
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I chose an ooph and an AI to avoid the tamox. It was purely on gut, but now I feel justified by the studies that came out. That said, it is not that tamox does not work at all or anything, it is just that the AIs work better.
I too try to avoid hormone-loaded dairy and meat. At the same time, I am not sure how much of a difference it really makes. The bottom line is that if you are pre-meno, your body produces its own hormones, and even when your are post-meno, your body still produces some hormones. There is no real way around that one.
What does seem to help is a lot of fiber and probiotics, because they can help get rid of estrogen through the bowel.
It also seems like keeping a modest to low weight, exercising and possibly doing a calorie-restricting diet 2 days a week may make a difference. I am contemplating trying the 2-day calorie-restriction.
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I am worried about an ooph due to an increased risk of heart disease...big side effect. What to do...what to do...? scary decisions...I am doing the iodine protocol, magnesium, DIM...and going to look into Avemar first I think and also metformin..
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Although, i have a distant history of ovarian cancer in my family, so maybe still consider an ooph...
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Good to hear that you won't have to do chemo, Amy! Hope you enjoyed that beer. :-)
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After reading the links, I am looking forward to making the switch from tamoxifen to an AI. Hope my estradiol numbers stay low.
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Yaay way to go Amy - great news.....
I started Als before radiotherapy? I think you can without a problem so if you want to ask about that
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Amy that is great news!! Enjoy ever sip of that beer!
joellelee- Did you refuse rads and chemo? And were they suggested? I also have been doing a ton of reading about DIM, iodine and just recently read something about the magnesium. I also read about the alkaline/Acid levels. Its all overwhelming, not sure what to beleive or which regimen to follow. I really dont want to do the tamoxifen. The more I read about it the more my gut tells me no. I also would like to keep my ovaries as long as possible and am no where near menopause. Did you see a Intragative onco? I found one fairly close to where I live. My MO wouldnt even discuss anything else but tamox. I also noticed you had DIEP. If my brca is + that is what I want, hard time finding a PS in area they all do TRAM, but finally found one that still does DIEP. How was your recovery? I am actually considering it even if brca- just so scared of a return. Its a decision I have yet to make but am going to need to do soon. I am afraid rads will do too much damage and they I wont be able to have it if I dont do it now.
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Thank you for starting this thread, Lemon. I was diagnosed with ILC in December of 2012. I felt a small, thickened area in my left breast. The mammogram confirmed it to be a suspicious area and the biopsy showed ILC. I opted for a bilateral mastectomy because I was concerned about the difficulty of picking up ILC on imaging. I'm delighted I opted for the BMX. I had a total of 5 tumors, 2 in the left breast and 3 in the right. I also had multiple areas of LCIS in both breasts. The sentinal lymph node from my left breast was clear. My largest tumor (1.8cm) wasn't even the one that was picked up on the mammogram.
My tumors are highly estrogen (99%) and progesterone (88%) positive, so I just had a hysterectomy on Monday to shut down the estrogen production of my ovaries. I found the hysterectomy to be much harder than the mastectomies. It isn't that I have so much pain due to the surgical sites; it's more that I still have a big belly full of gas due to the gas that was pumped in during surgery. Both my bowels and bladder shut down for more than 24 hours after surgery. My abdomen looked like I was 8 months pregnant between the full bladder I couldn't empty and the abdominal gas. The nurse finally straight cathetered me to empty my bladder, which made the pressure more bearable.
My next step is to see my MO in a couple of weeks to begin Femara to shut down the estrogen production of the adrenal gland. No chemo for me. My oncotype scores were 13 for the left breast tumors and 7 for the right breast tumors. My MO said adding chemo would only reduce my risk of recurrence over the next ten years from 9% to 6%, and that the benefits would not outweight the risks for that reduction in risk. By the way, my risk of recurrence would be 18% if I didn't take Femara, so Femara reduces my risk of recurrence far more than chemo.
I had stage IVa thyroid cancer three years ago. No sign of recurrence. Amy, I'm originally from Livonia, but have lived in Cincinnati for 27 years. My family has had a lot of cancer. My brother died of leukemia when he was 17. My little subdivision in Livonia was a hotbed for leukemia in the 1970s. There were three boys on my block alone, including my brother, who had leukemia at the same time. Childhood leukemia usually occurs in 1 out of 10,000 children, so we had far higher levels than average. I truly believe our environment has been poisoned with toxins and our food has been tainted with hormones. There are probably genetic factors thrown into the mix that make it more likely that some of us will develop cancers.
I am grateful and humbled to be among a group of such intelligent, knowledgeable and supportive women. Thank you all for being here. God bless you every one.
Julie
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Joelle, yes, heart disease is a risk with the ooph. In my case, I was very close to menopause anyway and there is no family history of heart disease. My cholesterol numbers are very good and I exercise regularly, have a low weight etc. My mother has been through ovarian cancer, and her sister has had uterine cancer. ILC likes the ovaries. I am happy to be rid of them.
It really all depends on your risk profile, but both my docs were very much in favor of the ooph.
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Choochoo, yes it is a great choice to have made for you, the BMX. We knew there were multiple cysts in the same breast (the entire inner side from top to bottom) as the tumor (4-5) and two in the other breast (outer right upper quadrant). Some cysts were found on the US and the others were found on the MRI. There was ADH and ALH in multiple cysts on the left and on the right was ADH and PASH.
I've seen two Gyns with different opinions. First said you'll need the ovaries out if not an entire hysterestomy; Second said they're fine and healthy, no need to rush at taking them out. I'm not so sure that makes me comfortable so I'm seeing another Gyn who is rated very highly. I'd seen her before in 2004 for annual pap and mammo. Wound up having a second mammo and then a biopy which turned out to be a fibroandenoma. Between that and the fibrocystic breasts since I was 19, almost feels like a portent of things to come. So I want an entirely non-VA opinion about all of this since I'm 80% ER+ and 90% PR-. Currently I'm on Lupron and Letrozole (Femara).
All we can do is make the decisions we are comfortable with and that we've been dealt a good hand of cards.
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Julie, welcome to our group! I am just so sorry you are here with us though. I really hope that you are feeling better soon! 😊 I cannot imagine going through all of the surgeries that you have gone through. I keep thinking that may be a possibilty in my future because of the ILC but I will cross that bridge when I come to it.
I'm sorry to hear about your brother passing at such a young age. And three on your block with leukemia! Wow! I have only lived in Livonia a little over two years but I have lived in several "hotbeds" around the world because of my husband's job. I grew up in the Upper Peninsula of MI but lived in a county that had an extremely high incidence of cancer. We don't know why that is. Still to this day my mom calls to say "so and so" was just diagnosed. After uni I moved to the Central Valley of California where pollution is so bad I didn't realize Fresno was surrounded by mountains until two months after I had been living there when I finally saw them after a rain. Sad. I lived in CA for 11 years. After CA my husband and I ended up moving to Cairo, Egypt, for 8 years where the sky is brown and that's not just from the sand. The particulate matter is so heavy in the air it's suffocating. I could go on about the pollution, dirt, garbage, sewers but I'll stop here. I don't know if mine is environmental or genetics or just a crap shoot. But I have drastically change my diet and I'm getting regular exercise again. I've gone as organic as possible, added whole grains, am trying to cut out refined sugars (that's hard!), have pretty much cut out the alcohol save for a glass on special occasion, and cut out my habit of diet coke. I've lost six pounds in the past month and am feeling great with the exception of knowing there is cancer in my body. 😉
Do you still have family in the area? PM if you'd like. 😊
Sending out hugs to all of my sisters! Thank you for being here and cheering me on and for cheering each other on! Go warriors!0 -
ILC warrior sisters!
Can someone tell me what the adrenals do--hormone wise? I'm confused...I only have one adrenal, and I wonder how this might affect my ER/PR + status, my ILC, and all that.
I hope all of you are having a wonderful weekend.
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This is what I found regarding the hormones-
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Adrenal glands are triangle-shaped glands located on top of the kidneys.
The outer part of the adrenal gland is called the cortex and produces steroid hormones such as cortisol, aldosterone, and testosterone. The inner part of the adrenal gland is called the medulla and produces epinephrine and norepinephrine, which are commonly called adrenaline and noradrenaline.
Cortisol I think has to do with stress. I dont know what the things it produces are and if it plays into ER PR.
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Claire has now got me thinking. Do any of you have a goiter? I was diagnosed with a goiter and 2 small nodules on my thyroid about 8-10 years ago. Thyroid worked fine. Used to have it monitored once a year by ultrasound to see if nodules changed. Stopped going about 3 years ago. Now one more thing to worry about.. guess I should go. Wondering what the corolation between the thyroid, goiter has to do with hormones??
I guess I will go and do some net searching..
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Thyroid and para thyroid regulate metabolism of all systems in the body - an anecdotal link between people who are hypothyroid and breast cancer has been noticed but it does not seem to be especially understood yet......if your thyroid is out of sync so will your other hormones be
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Interesting about the possible link between hypothyroid and BC. Years ago, when I must already have had cancer I went to a doc convinced that I was hypothyroid, because the symptoms fit.
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Yes I am hypothyroid and so is every female in my femaly who also has had BC or DCIS
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