Arimidex - Coping with the SE's
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I guess it beats the possible alternative
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PN does NOT always go away after chemo - I've had it for four years now and my drs. say it is here to stay (they've been saying that since the six month mark).
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A friend of ours had very bad neuropathy and his doctor recommended alpha lipoic acid. The doctor started him out on 1500mg per day for two weeks and then down to 500mg per day. Our friends neuropathy almost completely disappeared. So, my husband checked with his cardiologist to see if he could take alpha lipoic acid. The Cardiologist said that is was not only good for neuropathy but it was also good for the heart muscle. Then my husband checked with his GP because my husband has diabetes. The GP said, "Didn't I tell you about it? You should have been taking it all along." My husband had neuropathy up to his knees and now after a year, he only has mild neuropathy in his feet.
http://www.ncbi.nlm.nih.gov/pubmed/22632266
One can find it in most health food stores in capsule form. Of course check with your doctor before taking it.
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Thanks for all your replies. I tried Claritin back in the spring when my hips were bothering me and it didn't help, but the day i posted here I tried it again and it did the the edge off of the pain. I'm counting on the acupuncturist to help with it also. I also find the more active I stay, the better. My husband calls me the perpetual motion girl. I'm doing something almost all the time, until I crash and burn... dam white pill.
I found the naturophic oncologist through this organization:
Oncology Association of Naturopathic Physicians.
Dr. Gouin's college roommate got breast cancer during college which led them to do lots of research. It became her passion and specialty. She's totally supportive of using it as a complement to the traditional route. We'll see if I last on AI.
I was already taking a bunch of supplements precribed by my OB/GYN/Endocrinologist while I was goiing through menopause and while he was trying to fix my adrenal fatigue. But she added Melatonin for breast cancer prevention and sleep (up to 18 mg at bed), increased my Fish Oil consumption to 4000 mg daily and changed to a better quality one, this is to reduce pain and for neurological support. Evening Primrose Oil for hormone balance and as an antiinflammatory and to add more Omega 9s to my diet, she increased my magnesium glycinate and has me drinking Sage Tea to reduce night sweats. She's going to do a saliva test for hormone levels (my OB/GYN/Endo used to do this but he died in a car accident, one of the worse days in my life was losing him), got a bunch of blood work and back to the acupucturist. She was very pleased with my physical condition, exercise and diet so no major changes there.
I'm still worried about my bones so I'm not convinced I'm going to stay on this stuff even if she can make me feel better. I hate the thought of osteoporosis, I'm only 56, I want a lot more use out of these bones! What experience have others had with Osteoporosis? I don't want to end up on another drug because I get that. I had my first bone scan about 5 years ago and it showed osteopenia. My OB/GYN/Endo said it might be osteopenia or just that I'm small but we would watch it.
So experience with deteriorating bones? I'd like to hear about your experiences.
Nancy
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Yep, had osteopenia 5 years ago at age 55 and declined a RX for Fosomax at that time. Most experts agree that osteopenia does not require treatment. I have been on Arimidix generic sine June and got a baseline dexa scan at that time which showed osteoporosis in spine. I am an active 60 year old, and intend to stay active. I went to endocrinologist for advice and after blood work to determine rate of bone resorption ( breakdown) I have decided to go ahead with Reclast infusion. Endocrinologist gave me option of weekly fosomax or the Reclast once a year. Even though is is not an approved indication for cancer in my particular case of early non- metastatic breast cancer there is some research supporting some anti cancer synergy with aromatase inhibitors. So i figure kill ( or at least wound). 2 birds with one stone. It is not a perfect solution. There are side effects to Reclast. But I have decided to deal with the side effects of the Reclast rather than the SEs of osteoporosis. My infusion is scheduled for next Monday. I will let you know who it goes.
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Hit remove from my favorite topics rather than back to top...panic ensued until I found you again-whew. Won't do that again!
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I also had osteopenia for the last 4 years, no treatment needed and stable. I had my Dexa scan 6 weeks after starting Arimidex and had gone to osteoporosis. My MO recommended Prolia infusion every 6 months. There's another name for this drug that's used monthly for bone mets BC patients. Prolia was approved last fall for non mets breast cancer patients with osteoporosis. I decided to take the treatment because the SE from Prolia sure beat osteoporosis and I'm not willing to give up the protection Arimidex gives me, SE's and all. I'm 64, always been active, and intend to continue being so as best as I can.
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Getting one's Vitamin D3 level up to at least 50ng/ml will help stablize bone density. One just needs a simple blood test. I take 4000 IU per day to maintain my level at 55ng/ml.
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I had my vit D level tested 3-4 years ago and it was 42. After taking vit D for 6 months, it tested 44. Somehow that doesn't seem quite right. I would feel better if I could get it higher. I have osteopenia and a strong family history of osteoporosis.
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Wren44.
Are you taking D3? The prescription stuff is D2 and IMO it is useless. If your are taking D3 (over the counter stuff), how much are you taking?
One also needs calcium and magnesium.
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Musical: I just have the plantar fasciitis feeling on my left foot. I don't know if it's related, but that is also my treatment side. When I had plantar f. a few years ago, it started on the left, but pretty soon was both feet. I did everything my podiatrist recommended and it went away in a couple of weeks, until now. I've been wearing shoe inserts, do the exercises and stretches, and it doesn't really seem to be getting better. I've been super-active lately, so possibly I'm using it much more than I realize.
Right now it's my left shoulder that's bothering me, but not related to breast cancer or treatment...well, not directly. I'm participating in Swim Across America's SF event on Sept. 29 -- a 1.5 mile swim in SF Bay, from the Golden Gate Bridge to Crissy Field, a fundraiser for cancer research at the children's hospital where I work. I swim every day in a pool, but have been swimming in the bay in a wetsuit once/week for the last few weeks. I've also added pilates to my workout regime for a couple of months. I think last week I overdid, a 1.5 mile bay swim on Sunday followed by a super-power pilates class on Monday. I was terrified it was lymphedema, but my nurse reassured me it was workout related (phew!)
If anybody is interested in learning more about Swim Across America, my link is at http://www.swimacrossamerica.org/site/TR/OpenWater/SanFrancisco?px=1141508&pg=personal&fr_id=1531
Think warm thoughts for me on Sept. 29! I'm swimming in honr of my late friend Kathy Kamen Goldmark, who passed from breast cancer this year, and who I coached with Penguin Cold Caps.
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Hi seb, well I hope your swim goes well and child cancer sure is a worthy cause. Sorry that your friend has passed to this monstrous disease. Hopefully you dont get LE as that is just something you can do without. Actually it would be interesting how your wetsuit would affect your arm if you did have it. My BC is on my right side and PF on the left foot. When DX with it years ago through an injury, I had a special moulded insert, which really helped at the time. I think Arimidex has just generally made anything I had in the past, sort of resurface.
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Read this yesterday and couldn't help but think of those of us who have trouble sleeping on the A train:
"The last refuge of the insomniac is a sense of superiority to the sleeping world." -Leonard Cohen
I don't know about you, I don't feel superior-just tired...
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I'm having surgery October 22, so starting arimidex as soon as I get funding. How bad is the insomnia? I already take generic Unisom.
If you have weight gain, is it a lot? Or just several pounds? Ive been overweight all my life. I don't need another reason to gain.
Blessings
Paula
FIGHT LIKE A WARRIOR0 -
Soteria
Have you already had chemo or are you going to start it after surgery? I haven't gained any weight in almost 7 months on Arimidex. No insomnia for me...other than the odd night! That is normal for me.
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Thanks schatzi. I'm supposed to start chemo 4-6 weeks post surgery. I saw the mo on Wednsday, and she said, chemo isn't definitely on the agenda yet, but biopsy showed some cells in one or two nodes, so who knows?
I do have an awesome medical team at the Stephanie Speilman Comprehensive Breast Center. It's a part of the James Cancer Center at OSU.
The ladies on this site are incredible! Thanks to all of you, I know more than I ever thought I'd need to know about BC.
Blessings
Paula
FIGHT LIKE A WARRIOR!!!0 -
Hi again
Sounds like you have everything in order. Once you get the full diagnosis, things will just fall into place.
I wish you well and hope whatever treatment you decide to take, that the SEs are few.
Please keep us posted
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Nonself, I'm taking 1600 D3, 400 calcium and no magnesium. How much of that should I take? I had some cal, mag, zinc pills but I think I tossed them because they were way out of date. I don't take a multi because I was on the bad side of a vitamin A trial and never want to take any again.
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Yep kjibi, Peoria is supposed to be a good sized city,check with your grocers and if they dont have it,chances are that a health food store does.
I am with you all, I had to get rid of the "evidence" aka my McDonalds bag cause I had a coupon and stopped by there on the way home from my pre op to grab a small burger and an iced coffee. My fiance would have a fit,he thinks he is on the Gary Null honor roll..LOL and he can nag me to eat better and I can nag him to cut down on the beer.
I thought the Femara was helping with my hot flashes but they came back,could it be cause I ate some chicken and beef? Any vegans we can ask? I was on the McDougal diet for about a week to see if I could lose weight. No weight lost but I noticed I only had like one hot flash a day compared to the usual hourly bell ringer. It's from the book "The Starch Solution" so I was eating brown rice and veggies which can be just a tad boring to me altho surely healthy.
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Layla,
I'm a vegetarian and have been for 25 plus years and I'm here to tell you I had hot flashes for 10 years going thru menopause! They were so bad I had to carry hankies ( aka sweat rags...lol) for about 2 years. So, it didn't help me or if it did, I'd hate to know what it would have been like! Jump forward another 10 years, and here's arimidex causing more hot flushes ..... I guess a girl can't ever win can she? It's possible it's the starch getting you more than the meat ala the macdougal diet I suppose...
Wren, I'm supposed to be taking 1200 calcium and 2000 D3 daily. Some docs tell me that I should count my dietary calcium calories toward my totals as its possible to overdose on calcium.0 -
I didn't have hot flashes with menopause, so I'm praying I don't have them with arimidex either.
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Wren44,
You should be taking between 1000 - 1200 mg per day of calcium split between morning and evening. The daily requirement for magnesium is 250 mg. You may be getting enough from your diet; I wasn't. You will know if you have too much magnesium because it will cause loose stool. I take 250mg of magnesium every other day. A blood test for calcium won't help you because if you don't have enough calcium in your blood, it will just take it from your bones. The good news is the range I have given is the recommended daily intake. If you eat a lot of cheese you may be able to take less supplemental calcium.
I take 4000 IU of Vitamin D3 every day. Before you change your intake of vitamin D3, you should have a blood test to check your level. Different folks need different amounts of D3. Your level should be at least 50 ng/ml but no higher than 65 ng/ml.
I had normal bone density before going on Arimidex. I then developed osteoporosis in two vertebrae of my lumbar spine and osteopenia everywhere else. This year, after having my Vitamin D3 level above 50 ng/ml for one full year, I have only one vertebra with osteoporosis and all of my bones have increased in bone density. I hope to have no osteoporosis by next year and possibly have normal bone density.
Before I started requesting blood tests for Vitamin D, my doctor didn't routinely check. When I started taking 4000 IU per day I had my level checked after 6 months to make certain I wasn't taking too much. This year he started testing all his patients who were over 50 and he says 75% are low in Vitamin D3 (levels under 30 ng/ml). He was very suprised to see my bone density increase (it was a small increase but still).
Get you Vitamin D3 checked, take more calcium and if necessary take magnesium.
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Soteria205: I haven't had any insomnia, weight gain, or other effects. I had bone pain about 3 weeks in, but found that was completely alleviated by taking a daily Claritin 24-hour tablet.
For hot flashes: I found that any kind of sugar or alcohol (which converts to sugar), and to a lesser degree starchy foods which convert to sugar, triggered hot flashes -- especially sugar and alcohol. Eliminating or reducing those foods has helped greatly. Now, when I have a glass of wine and start to flash a little, by the time I get to the bottom of the glass I don't care :-) It helps just knowing that this is one of my triggers. Although, I stopped having hot flashes about 2-3 months after starting anastrazol (I had a year+ of tamoxifen before that, with much heavier hot flashes and other SEs).
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seb...like you I have been taking a daily Claritin 24 hr. I began to wonder about taking another drug for 5 years and the possible SEs. I decided to limit myself to one every OTHER day and see if my SEs are still gone. If the pain returns, I will start to take a daily Claritin again! Just curious. The less junk into my body, the better. I take so many different things if I can eliminate even one, I would be happy.
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Did any of you get depressed when you started Arimidex/anastrozole? I don't know if I'm feeling bad because of that or something else.
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schatzi14: I hear you on keeping the number of meds as low as possible. I do have to take Claritin during hayfever season, and in terms of taking it daily -- I made a pact with myself when I began chemo, that I was not going to let myself suffer for a single second throughout all of this. I have suffered enough by going through this dx, treatments, and having it hang over my head for the rest of my life. Let me know if taking Claritin ever-other day works for you -- maybe I will try that also!
Susan
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So, I'm managing the side effects though I don't feel well most of the time. What worries me the most is my bones. I'm an active 56 year old. About five years ago my first bone density came back with osteopenia and the same this past february. Five years ago the doctor said it could just be because I have a small frame and it's not really osteopenia. I take my liquid calcium, my magnesium and Vitamin D (level being tested now).
I'm considering ditching AI and going on DIM. Anyone go through that thought process? What made you stay with the AI?
Thanks
Nancy
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etherize-unfortunately it's a side effect, but discuss with your physician.
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seb...will do...so far, so good, today
BTW I am also a Susan!0 -
etherize, I think some of the depressed feeling comes because of all you have been through; when you are in active treatment, you are in the 'fight' mode and all of the sudden you are 'done', but of course you are not really done at all. And that takes a mental adjustment (plus the physical adjustment to the drug added in there as well).
Nancy, get a yearly DEXA. A friend of mine, who just finished her 5 years, went in with osteopenia and managed to come out with no futher bone loss, she is very small framed also. She did weight bearing exercise like crazy, which no doubt helped a lot.
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