Alternative drug to Arimidex
Comments
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In answer to the OP, I was eating half a large mushroom a day and taking Grape Seed Extract (GSE) as natural AI's prior to being prescribed Arimidex. They caused strong flushes and sweats so I knew they were working to reduce estrogen but I was concerned that I was just swapping artificial AI's such as Arimidex for natural AI's and there are no studies to show any potential changes to side effects or recurrence rates from the natural AI's.
When I started Arimidex I had a few weeks where I was feeling stiff in the hands and knees with a little pain on awakening. This eased off but my knees are now stiff on many occasions, therefore I can see that the effects of natural AI's vs Arimidex is different for me and have no idea whether that would help my DFS or not. One of the Arimidex vs Tamoxifen studies showed that the effects of Arimidex were there regardless of the dose of Arimidex so I'm seriously considering cutting the Arimidex tablets in half and taking them alongside the mushroom and GSE so as to get equal benefit from natural and artificial AI's. I'm only about 50Kgs / 115lbs so the Arimidex is probably strong for me anyway.
That's typical of me, I'm always sitting on the fence.
Oh yes, and I'm following the progesterone and natural hormone threads to some extent, but really choked on the Lee book when I borrowed it from the library during chemo. I'll have to read it again now that I'm not so overwhelmed with the chemo and RT behind me. Maybe my brain has recovered enough to understand the book now.
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Sheila - you hit the nail on the head! WE, as breast cancer patients, need to push to get the facts from the doctors and the researchers! I have taken the plunge and gone off my Femara for the month of May after being on it for 10 months. So far I have not notice the side effects deminishing, but I will keep you all informed as to what I feel off of the medication. I was on Arimidex for 4 months and off for 3 weeks with major improvements. I would love to see research on survival rates for anyone one taking AI's vs. those who don't bother. Anyone found any such animal out there?
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Somebody posted a video interview link by well-known Boston oncologist who reported that there two ongoing studies to determine Arimidex's absolute survival. He didn't say what the studies were.
I seem to recall that SO FAR, one study seemed showed slighly less survival and the other showed slightly more survival. I got the impression they want to test Arimidex a few more years to see if there is any survival advantage.
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Hi WBLibrary,
I saw your post and although I am TN I have a very dear friend also looking for alternatives for Tamoxefen & Arimidex. There is a great book that I am reading right now called "What Your Doctor May Not Tell You About Breast Cancer" by Dr. Lee and I think you will find many answers to your questions. It is hands down the best BC book I have read besides the Anti Cancer book!
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MBJ - I have ordered the book from Amazon.com. Looking forward to reading it before my next onc appt. So far - off of Femara for 18 days - I really don't notice much of a change in the side effects. I'm still very fatigued, insomnia still going strong, joint pain, etc all still very much a part of my day. I'm still sticking it out till the end of the month - then I'll make up my mind whether to go back on it or not. All the research I've seen of the AI's is AFTER taking tamoxifen for a few years before switching to the AI. I want to see statistics of just being on AI's for 5 years. Also someone else brought up a good point - why aren't we all being checked for our Estrogen levels while we are on these drugs? The more I read - the madder I get that there's not enough statistics out there. I'm worried the side effects of NOT producing Estrogen can do more harm to us than good. No one seems to have an answer. Sorry - had to vent a little today. Thanks for the advice and I will be reading the book shortly! You aren't the only person who has recommended it.
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wb- My onc started me out with Femara, but the effects were very pronounced, especially with my cognitive abilities. The drug must have soaked up all the estrogen in my brain because I couldn't remember anything. Also, I had a lot of joint pain in my knees and feet.
Then I tried Aromasin. At first I had digestive problems with it, so I cut the pill in half, and the digestive problems went away, but I still had some joint pain. What helped with the joint pain was increasing my vitamin D3 dosage to about 5000 ius a day. After a few months I tried taking the whole pill and at that point had no problems. I really don't notice any side effects at all now.
I don't know if the vit. D3 would work for you, but I thought I'd pass it along.
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In clincial trials for cancer drugs the control group must ALWAYS receive the current gold standard treatment, never a placebo.
I've been on Arimidex for a week (plus zoladex) and have NO side effects. It is early, I know. But I suspect it won't be bad if I get any since I'm off to a great start.
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I have started to read Dr. Lee's book and discovered that Melatonin is also one of the chemicals we need to have in our system to help prevent cancer. I started taking it and it's also helping me sleep. I see my oncologist on Wednesday - will discuss prednisone cream with him. Still having side effects from AIs in my system - mostly fatigue. Just can't seem to stop yawning all day long and feeling like my pillow is calling my name!
Sandilee - I take Calcium and Vitamin D suppliments and have even BEFORE BC - I feel I need them since the deep end of menopause AIs put us into causes bone problems. Not everyone gets the horrible joint pain with the AIs though. I just seem to be one who is bothered by all the side effects. It's boiled down to a quality of life for me while I'm still here! Thanks for the info
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Well, I'm going to go back on to Femara as of 6/1. I will stay on it until the end of the year at least. I talked with my oncologist and he's a firm believer in the AIs being the best form of preventative care for me. He believes it's even more important than chemo. He said the latest and greatest studies are showing that even just 2 years of being on them decreases significantly the chance of recurrence. I guess I just have to resign myself to the fact that I'm going to ache being on it and not be able to sleep, but there is a light at the end of the tunnel to look forward to. At the end of the year, we will discuss the subject again. So I started taking Glucosamine 1500mg a day, we'll see if that helps a little with my aches and pains. Melatonin is helping a little with sleeping, but it's still hit and miss. Everyone have a wonderful Memorial weekend!
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P.S. My oncologist did NOT recommend cutting any of the AIs in half.
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I was on arimidex for 6 months and had a really hard time. I fell into the 34% who have debilitating bone pain. Stopped for one month got switched to aromasin. Onc. said he was okay with me cutting them in half. Incidentally, I had my hormone levels checked and my estrogen is in the desired level for non-recurrence. Was advised to have them checked again in 6 months. Mind you, there is always the risk of recurrence from radiation which can occur several years down the road.
Gosh, aromasin are tiny pills, was easier cutting arimidex in half.
Wblibrary: Obviously, Oncs are not going to generally recommend cutting AI's in half because there are no studies done on only 1/2 dosage, these drugs are "one size fits all" and we are not one size women, we are all different. The onc. adresses the health problems related to the side effects vs a reasonable quality of life.
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Painterly, what does your doc think is the desired estrogen level for non-recurrence?
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Hi Wblibrary-One thing you really need to be concerned with on Arimidex is the bone loss. I was also very afraid to go against what my oncologist told me, but with a lot of personal research on the subject and prayer, I got off of tamoxifen and went to a naturopath in Houston. I keep my vitamin D level up, take other supplements and use bioidentical progesterone. Thank the Lord I sleep through the night, my bone density improved, my skin, hair look good again. I am also a registered nurse and am convinced that the docs do not have all the answers. Best of luck to you.
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Ruthy - I have Dr. Lee's book and I'm seriously thinking about using the progesterone cream. How did you regulate how much bioidentical progesterone you take? I've never had a bone density test done before or after BC. I take 1200 Calcium & Vitamin D tablets daily. I also started taking Melatonin. It was working for a while helping me sleep, but no longer. I am off the Arimidex totally and I have been on Femara for 10 or so months. I just took the entire month of May off to see if I saw any major changes in my aches and pains - not much change - I'm sad to say. I started back on the Femara June 1st. I plan on staying on it till at least the end of the year. My onocologist basically scared me back into using it. He did say after two years of being on an AI though - we can discuss if it's worth staying on for another 3 years. He was telling me the latest studies show recurrence usually shows up in the first 2 years and staying on AIs for 5 years may not be necessary. This seems to the be opposite of what I've read. I have NO idea where he got those facts - he said it was one of the latest studies. He did tell me though that if I can't handle being on the Femara, we could try Tamoxifen. I'm defiintely post-menopausal (uterus removed when I was 32!). I get SO frustrated with the whole lack of information about these drugs. It scares me that by taking them, perhaps there will be some side effect from them that would be worse that getting a recurrence in the long run. Heart problems are my true fear. My sleeping patterns are way out of whack! I've basically become nocturnal. I just want to be able to take something and not have to worry about what it is actually doing to the workings of my body. I want to feel 56 and not 76 every day. I want some stamina to live life. A simple wak around the neighborhood sends me to lie down for an hour. This is not normal - it's not quality life. Please let me know about the progesterone. Thanks! WB
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Dear wblibrary,
I found these links where people talk about their symptoms/problems while on Femara.
http://www.askapatient.com/viewrating.asp?drug=20726&name=FEMARA
http://www.topix.com/forum/drug/femara/TFTS86D0FBSP8CEL8
I tried to post , had a long post and it came out with all these really odd "things" all through it. I will try later to post what I really wrote.
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Hi Wblibrary
It can take more than a month to get over SE's from the AI's. I am now almost 3 months since I stopped Arimidex and some of the lingering pains are finally going. My onc. said the same thing as yours "it is the first 2 years after surgery which are critical for a recurrence" and 5 years may not be necessary. I was offered tamoxifen also since it is so much easier than the AI's in terms of SE's, but with that drug we have to have a pap smear every 6 months because it thickens the uterine lining. No good for me as I spend 6 months in Fla. every year and it would be totally inconvenient to take it but in your case you don't have a uterus so it could be a consideration.
As far as the progesterone cream is concerned, my ND said studies are still inconclusive and she wasn't all that keen on me using it. She recommended only a small amount of the progesterone cream if I felt that I couldn't manage hot flashes and lack of sleep. There is a thread on progesterone cream - check it out.
I had a hell of a time with the Arimidex. Got switched to Aromasin and took only 1/2 a pill and had an allergic reaction to it.
This might be a good time now for you to check out the Natural Girls thread.
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Wblibrary
but in your case it could be a consideration
I take this comment back! I was just watching Dr. Christiane Northrup on PBS TV. She was commenting on tamoxifen. She said if we take this drug for 5 years 40% of us will have a recurrence in the other breast and a bigger tumour! Wow, that's scary!
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Doctor's have to give the party line on the drugs...when I told my oncologist that I would not take an AI anymore because of side effects--he said tamoxifen...When I said no to that--and he knew I meant it--he said fine--get your hormone levels checked and go with progesterone--he said that pre-other hormone drugs they used it all of the time! Doc's are sometimes afraid of progesterone because they themselves don't understand that PR + does not mean tumors are fed by progesterone. Do your own research! I am on Vitamin D, Dim, Calcium d-glucarate, and Kelp--my levels are fine and I feel sooo much better...Best of luck.
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Hi Sarabhealed,
Oh, so you are on kelp...I might get that one as it is an over the counter supplement. I couldn't find Iodoral. Thanks for your input. (Are you still using the progesterone?)
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painterly - You can't find Iodoral? Did you get on breastcancerchoices.org? That is where I buy mine.
Patty
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Hi Patty,
I was hoping I would find Iodoral at the local health store as I hate using my credit card on the internet.
After watching Dr. Northrup on PBS, seems kelp is just as effective.
Glenis
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painterly - I did see some of that show. I recorded it and will watch it tonight. What I did see she was amazing! I did some research awhile back about the kelp. Of course with my memory these days I don't remember what I read but decided the Iodoral was much better than the kelp. I have purchased from that site for over a year now. I have had no problems and they have great customer service. It gets shipped immediately. Hope this helps!
Patty
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You can't get enough iodine from kelp tablets
PLUS in one of the tapes, Dr. Flechas said 9 out of 10 kelp tablet products one of the doctors had tested at an independent lab was contaminated with arsenic and heavy metals.
Not enough to kill you but enough to weaken your system.
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Chrysin is a natural estrogen inhibitor used by many body builders. I
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Thanks Mathteacher and Patty,
I will definitely get the Iodoral!!!
PS. I missed the first hour of Dr. Northrup. Let's us know if she says anything significant.
Glenis
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That was it mathteacher!!! Thanks for the memory jog! lol
Glenis - I too only saw the second part, darn it! I think I will see if the library has the video.
Cranegirl - I have been taking chrysin for a few months now. I did read you need bioperine to help the chrysin to absorb well. Also it stated to be careful how much of the bioperine to take. I think one should not take more than 10 mg. a day.
Patty
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I took tamoxifen for 26 months. I had the stomach flu one weekend, didn't take the tamox, then a day turned into a week, a month, and more. Then it was time to fess up to the onc. I was apprehensive, had the highest bp reading ever in my life. When the onc entered the room and I spilled the beans, I swear, the man nearly yawned. He shrugged his shoulders in the same way he responds to my complaints of fatigue, and said 'some women do fine on tamoxifen and some find it intolerable.' He didn't mention one word about arimidex! Perhaps he thought he knew me well enough to know that I wouldn't want to take it, but it still strikes me as strange he didn't even mention it.
Other things I don't recall ever being mentioned were percentage estimates of my survival of with vs without pharmaceuticals. And what really chaps my hide about these studies that report on survival, the context is surviving just the bc. If I get heart damage and die of a heart attack, I'm a bc success story. Well, I say fat lot of good it does me to survive bc treatments if I end up dead from a heart attack! Every single time I see that Leann Womack commercial about heart health and how more women die of heart attacks than breast cancer, I wonder every single time, how many of those women were bc survivors before the heart attack came along and killed them? ...this probably doesn't belong on the arimidex thread. It's chemo and rads that are more notorious for heart damage. But these studies that spout one set of stats after another really should include information about deaths from other causes. ok, stepping off that topic's soapbox...
wblibrary, I've had help with sleep from taking valerian root (for a while at least, then not so much). Some people get help from melatonin, which doesn't do squat for me, but 5-htp helped for a good long while. Now I supplement with magnesium (I use a spray on my skin, which never seems to cause any 'bowel tolerance' issues, which is sort of a guessing game in other forms as to how much you can handle). Magnesium is very important for bone health, plus it helps people sleep and for those with joint pain, it helps sometimes for that.
I also take iodoral and get it from breastcancerchoices.org.
ruthy, how do you like your naturopath? When I get some money saved up (I hope that will happen in this lifetime), I'm willing to travel to find a practitioner worth a copay. If you need something from a compounding pharmacy, can your naturopath get you what you need? I gave up on doctors in my town 2 years ago.
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i must say, you ladies are lively in your research! im new to the game, having just newly decided to not take als. i have hyper sensitivity to all drugs. i have multiple sclerosis, so have 2 watch taking ANY antioxidants, so am very limited. so far, 2000 mg. alaskan fish oil, and vit. d. am going to research if i can take DIM, it sounds promising, and looking into 13C,, caN SOMEONE PM ME, TELL {sorry) me how 2 research them better? thanks..3jaysmom
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I heard an oncologist on a video say that at least 30% of women prescribed Arimidex stop taking it because of unbearable side effects. Has anybody else found that statistic?
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Hi Janeluvsdogs:
Yep exactly...My onc. said 34%
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