natural girls
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Yazmin, I wish there was such a doctor in my area....I'm in NC....a BIG hospital state and not user friendly for those of us looking for a more natural approach. The wellness center I have been going to is as close as I can get and I don't have great confidence in their ability to help me sort this all through as most of what I'm taking has been prescribed by them. It takes me days to get a return phone call if I have a question. I'm just not a very happy person right now. The only thing I want is to feel HUMAN again. I was so great at Christmas and then we started changing and adding, etc., now I feel old and weak and that's not ME and I refuse to accept it. It has now been a full week since I stopped it all and I'm slowly getting back to myself. Today was a great day and I hope tomorrow will be also....Thank you for your input. Wish I lived in a big city like you.
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Irish, I am wishing you another great day today! I am sorry that you have been feeling so yucky.
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Also, Irish: some of the ladies on this Board are VERY knowledgeable with supplements and anything natural to help build yourself up. Case in point: Vivre, on this Board, uses a brand of supplements called USANA, I believe, and which I am planning to try in the future; and it appears to be one of the very best brands around.
You might not have to live in a big city to get help: it might be possible for you to work with a naturopathic doctor by email (OK: after seeing him/her at least once and getting all the necessary lab work done, I guess)......
I know this is hard, but don't give up the search!
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Hello everyone, My name is Susie and I need your help please. I took Arimidex for about a year and the bone pain is so debilitating that I just can't take it anymore. My onco changed me to tamoxifen, I've taken it for about a week and have terrible muscle pain, the kind that you wake up crying from. The Dr said she thinks that's coming from the tamoxifen and told me to stop taking it. I can't live like this, but I'm really scared to completely stop hormone therapy after just a year when my cancer is ER+. Does anybody know any natural alternatives? The pain has been so bad that I've used up all my sick days for the year already, and I'm using my vacation time now. I don't know what to do. If you know any natural alternatives to the hormone therapy would you please share them with me.
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Yay! The thread works again.
Susie- I am sure you will find lots of help here.
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Susie--I too have had the muscle pain from Tamox. I took it for 2 weeks with several side effects. MO took me off of it for three days because of stomach issues. Put me back on it and the muscle stiffness went away. I don't think mine was as bad as yours. I also have hip joint pain but that is getting better as well. This is a great thread with lots of knowledgeable ladies. I'm sure someone can help you.
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Oops, not yet, still goes to the top of the page. For me anyway!
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Dear Susie,
Hopefully we can share our experiences and that will help guide you in your journey. I like to think of this thread as a sharing and caring environment. (Yes, even when we're venting.) Seems we had a similar diagnosis and because it was nearly stage II (thankfully) my team of doctors suggested I receive a second if not a third opinion as to my course of treatment and that set me on my path.
I too didn't like how I felt on tamoxifen and after three months stopped taking it. I had just come off of three major surgeries and felt my body needed time to heal. I too had six weeks of radiation and no chemo. My oncologist went over the tamoxifen stats and shared that the studies are primarily based on post-menopausal women and since I was 38 years young (I always love how he says that) the studies didn't reflect my patient population. That may have changed...it was ten years ago.
For me, reading Jane Plant's book and no longer consuming dairy products and only very, very limited amounts of organic meat, as well changing my lifestyle to limited exposure to chemicals, etc. has (I believe) been extremely beneficial in keeping me healthy. I also used to juice nearly every day because I wanted to create a healthy environment inside and out. Yoga was also great to gain back the movement and flexability in the arm that had the lymph nodes removed.
Hope you take comfort in whatever decision you choose for you. You've landed on a great thread!
Best health always!
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Susie- there are also supplements which can directly reduce the amount of dangerous estrogen. Only you and your doc can decide what's enough for you to do as treatment but it certainly can't hurt to add these things to your regiment. The big ones I know are flax seeds, ground (not oil)- I do 2 tbsps /day), DIM, and calcium d glucarate. All 3 of these directly decrease the amount of estrogen in your body. You can do a lot with diet as well. There's a lot of info out there, and on here. Stick around! It could maybe be the case, also, that even if it doesn't seem safe to go off the tamox, you can find supplements/dietary changes that can make the side effects better.
Aside- how come we never talk about progesterone? Does it just not matter? My onc never does, the nutritionist never does, no one here does- but I (many of us) are not just ER but also PR+- what's the deal?? Anyone?
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Thank you so much for your replies. What is DIM? Do I get it from a health food store? I was taking Osteo Bi Flex to combat the bone issues from Arimidex but my Dr took me off that because it had baswilla (??spelling) in it and she said that also could be adding to the muscle issues. I don't have ovaries anymore so I'm hoping I can suppress any estrogen from the adrenal glands with natural supplements and lifestyle changes. No dairy and no meats are a good idea, that way we're not getting "second hand" hormones. What do you eat to get enough protein in your diet?
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Suze: In addition to the great advice above, you might want to check out two sites: www.breastcancerchoices.org and also www.drlam.com which have tons of great info.0
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Susie- with the oopherectomy, it is possible- that's exactly what I'm doing, wih my onc's full approval and participation. So far my levels are very low, and side effects minimal, nothing like on the drugs. DIM is a concentrated (very!) form of the compound found in cruciferous vegetables, and you can get it at a health food store, or online. As for protein, I eat a lot of protein powder. I also eat soy, which everyone has their own thoughts on, but the most recent research makes me feel it is not only ok but an additional weapon against the bad estrogen. And a lot of beans. But protein powder is the key thing I think. I use a whey powder from Vital Nutrients, because it is from pasture raised cows- it's expensive. All the protein powder is expensive.
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Quinoa (pronounced Keenwah) is a great source of protein! I eat it every week. I usually make a big batch and keep in the fridge and then take some out, add to it and enjoy.
Examples of what I mix with it.....Black beans, chopped japs, chopped red pepper, cilantro, lime juice, olive oil, spices.
Avodado, grape tomatoes, chopped, mushrooms, asparagus, garlic...any or all of these.
Can also mix with almond milk, chopped almonds, raisons, fruit, etc with a bit of agave on top as a breakfast cereal.
For those that don't know, it's cooked like rice and can be used in place of rice in many dishes. It's just much more nutricious than rice.
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For those who have been following me, I wanted you to know that I had my lumpectomy yesterday. It ended up happening around 7 p.m. Pacific Standard Time. One positive note is my breast are the same size for the first time in two years! The bc surgeon took out about a quantrant of my left breast. Now I need to buy new bra's. I won't have to stuff the right side anymore
I had asked my surgeon not to take the sentinal nodes. She left me a message to talk about it. I didn't get the chance to talk with her but thought good enough to leave it as is. I had taken pain med's so I was tired and droggy. I also felt vulnerable. I didn't read the consent form well...but did write something about talking to the doc about node removal...not. When they put the wire in they also gave me a shot of isotope for sentinal node removal. I was shocked. They said to chat with my doctor. She came in before surgery and at that time I felt it was too late to fight about it. I tried...not successfully. So they are gone! I haven't looked under the dressing...afraid to. I'll know my pathology report on Friday. Hopefully it's all said and done.
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eveberry, I'm glad it's finally over for you. So sorry about the sentenal node issue. Take it easy the next couple of days. Let us know about the path report when you know more.
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eve, thanks for the update. I hope you make a great recovery and get a good path report on Friday.
rachelka, what a great article you posted on the previous page! It's so encouraging that some studies are showing benefits of supplements during chemo. I get so sick of hearing 'there's no evidence blah blah blah' when the lack of evidence is tantamount to nobody looking for it! So glad to hear someone's looking! and that they're finding results that we've seen in our own experience right here in the natural girls thread.
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my one experience with armidex was so horrifying....well, my supplements are the way for me....
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evaberry,
Glad you're holding up. That's not too cool that you expressed your concerns over the nodes and didn't get to have the talk before they were taken. But at least youve had the beast taken care of and I wish you well in your healing.Rachel
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You ladies who were nice enough to say thanks for the posting on doing antioxidants while undergoing treatment: you're most welcome. MBJ, thanks for info on what may be causing my weight gain, especially in the gut. Will check out drlam.com
Also, I'm getting all turned around, but I think it might have been on this thread that someone was asking about alternatives to tamoxifen and what she could do diet and supplement wise? I noticed some good advice brought back to her. Here's another quick piece. Something I'd done on foods to stave off recurrence of estrogen positive BC:
Foods may stunt estrogen-positive tumors
Here's news for the 75 percent of breast cancer survivors whose cancer is estrogen-positive: Pomegranates and certain other fruits and vegetables may suppress estrogen production. Research at the City of Hope in Duarte, Calif., suggests that the way these foods block estrogen is by interfering with an enzyme called aromatase. Aromatase converts androgen to estrogen. In choking estrogen with their armotose-blocking ability, phytochemicals or plant-based foods, may help slow or prevent the growth of estrogen-responsive tumors. That's what the scientists believe who are zeroing in on these foods' role in helping to fight breast cancer. Some plants and vegetables reported to act as aramatase inhibitors are white button mushrooms shiitake, portabello, crimini, pomegranates (pomegranate also slows early stage prostate cancer), and some brands of grape seed extract The findings were surprising and promising, and researchers continue to learn more on how food-based armatose blockers work and how much of what ingredient is safe for who.
More information:
http://nationalevents.cityofhope.org/site/PageNavigator/walk_super_foods eight lifting good to prevent lymphedema
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oy, my head spins....:( I thought pomegranates were bad because they were estrogenic. I love them and the juice but have been avoiding them.
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barry! So glad you are doing ok! keep us posted on the pathology.
Gentle cyber hugs to you!
Lox
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After I finished rads, and before being put on Arimidex, I used mushrooms to get the same effects I later got with Arimidex... flushes and hot sweats. I put links on this thread to Dr Chen's research into Grape Seed Extract and mushrooms before but had no response. Being ignored is a big hit to the ego which I'm trying to become impervious to. Ego = pain. Lack of ego = peace, freedom and healing.
I wonder if the AI side effects that are so debilitating are due to the lack of estrogen or the individual drug? Also I wonder what effect it has on young women who regularly use mushrooms or GSE without realising the AI effect. I wonder if it affects their fertility?
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Sheila, even though my attention span is 100 times better than it was during chemo, I still have trouble remembering what was said even one page ago. We need longer pages!! The good thing about this thread is how well we get along here. The downside is it's hard to keep up with everyone here in our safe haven. You have lots of great insights Sheila, so please, blame chemobrain and feel free to repeat yourself.
Just a few days ago I could've sworn someone on this thread was asking about supplements and what to do when living in a community where it's hard to find an integrative physician. I was going to suggest that person get familiar with places online where you can order your own labs. If there's a deficiency somewhere, it can often be discovered with labs, and some doctors can do consultations by phone to help you interpret the results.
jessamine, I had the same exact question as you about progesterone years ago. So much focus is on estrogen and how to suppress it. All the while, just a few paragraphs from Dr Northrup's book on women's health stuck in my mind. In a nutshell, estrogen makes cells cycle in, progesterone makes them cycle out. Same goes for iodine -- it regulates apoptosis, cells cycling out. I never made it past biology in school, but good grief, it seems obvious to me that it would be beneficial to focus on what makes cells cycle out instead of trying to roadblock what makes them cycle in. Lo and behold, there is a doctor who did just that. Dr John Lee who wrote ... geez, I can't remember his book title. It has breast cancer in the title. I'm sure it had a thread of its own at one time if you want to search.
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Evaberry,
Healing vibes are being sent to you. I am glad to hear you're finished with the lumpectomy, and we are glad you are back.
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Hi everyone. I had my blood work done last week and I finally got the results. Looks like in addition to BiEst, I will now be taking bioidentical Progesteron and also Prefnenolone. I am hoping this will all sort itself out so I can quite losing hair, quite melting from hot flashes and finally sleep through the night. Anyone else out there doing this?
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MBJ, what do the docs think is causing the hair loss and hot flashes? Tied to chemo or adrenal fatigue (I think that's what you called it? Adrenal fatigue?)
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Rachel: I did a bunch of reading and high DHEA with low progesterone can cause hair loss. So can adrenal exhaustion. I am getting a consult with Dr. Lam's clinician/dietician next week to see what they recommend. Dr. Lam says many with Adrenal Fatigue also have sub clinical thyroid or hypoglycemic symptoms. It's a delicate balance and I hope they all get it right. The pregnenolone is supposed to help with the brain fog. I also found some posts from Dr. Mercola fans who said they were able to balance their DHEA by not eating grains which also cut down on the hot flashes. So right now I am trying to only eat Ezekial sprouted breads. I have also heard that cutting out starchy foods helps, like pasta and potatoes.
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MJB- I don't mean to be snarky, I'm truly curious- but, wouldn't bread count as a grain? Are sprouted grains ok? I'm very interested in cutting down on hot flashes! I don't eat potatoes, and hardly ever have noodles, but I eat a lot of whole grains...as well as the ezekial bread. Also (serious tangent here, sorry) I eat this bread from Berlin bakery which is nothing but whole spelt flour and sourdough that is truly one of my favorite things on earth. It's expensive but it's so good I can't believe it's actually ok to eat! Totally recommended.
Althea- thanks!! I googled and if anyone else is interested, the book is called "What Your Doctor May Not Tell You About Breast Cancer -How Hormone Balance Can Help Save Your Life". I think this was one of the books someone gave me when I was first dx-ed- it's all a blur, but I don't remember being blown away. I think I didn't think much of it, in fact, But maybe it's time to revisit. Anyone else have thoughts? Read it? I'd love to hear what people think...
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ladies-I don't post here much but find lots of good information from you sharing your knowledge. I have a question regarding Vit D levels. Mine is currently 42.7 which is on the lower side of the normal range. I am taking D3 2000 iu's daily per dr. request. I will see him in 2 weeks and will be tested again. What range do all of you try to keep your Vit D level at, am curious to know others opinions on this.
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Jessamine: You weren't being snarky, lol! I am not sure as I don't go to the Mercola site but I am following the advice of Dr. Lam's site and he says whole grains only in moderation like Ezekiel breads and oatmeal are fine. I don't eat potatoes, white bread, regular pasta either. What I do want to know is where can I get the sourdough bread! That sounds so yummy!
I did read the book above, and the only thing that I got out of it is why progesterone didn't work for me! When I was put on bioidenticals prior to BC, I had horrible uterine fibroids and every time I tried to balance with progesterone I would bleed. In his book he confirmed my Adrenal Exhaustion diagnosis and he also said if you have very large fibroids, supplementing with progesterone will make it worse plus I had symptoms of POCS and I couldn't treat either. I am hoping the fibroids are now gone after changing my diet and I am hoping I can now take the progesterone. I started yesterday..
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