Arimidex - Coping with the SE's
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Can you get the brand "Bosco" in the USA? They make terrific products for gluten free and a good sized range of products as well. I use their Almond and Apricot muesli very very tasy. The gluten free cake mixes are especially good.
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Good morning ladies, you hear about all kinds of things happening while asleep and then having absolutely no recollection, Rocket I hope this isn't some crazy se for you! Great to hear you have a wonderful husband to save the day. I would definitely try taking A in the am, there's been a lot of talk about that here. Such profuse sweating to be dripping off your elbow! That and the awful pain, no wonder there seems to be some escape mechanism in effect. I hope if you do change A to am, that it works well and gives you peaceful nights.
Ronna, good luck, wishing you the best possible results on Friday!
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Rocket....my arm continual pain/burning/throbbing is exactly where your's is, around my back, down my arm to elbow, all the way around my arm like there is a tight band around it (yet, no swelling), but it does go around all the way to my shoulder blade at times...I feel for you, mine is not to the extent of yours, but very bothersome, more at some times than others....When I mentioned this pain to my surgeon, he said it was not from surgery, but I know it is, it started before going on the arimidex...I wish doctors would get off their high horse and admit some of these se's and try to help..
AS FROM YOUR ROCKET'S LINK LISTED ABOVE:..."Women who had new joint pain but not new hot flashes or night sweats were less likely to have breast cancer come back than women who had new hot flashes or night sweats but no new joint pain. Women who had new hot flashes and night sweats AND new joint pain were less likely to have breast cancer come back than women who had EITHER new hot flashes or night sweats alone or new joint pain alone."
I don't know what to think about that article but I never had a hot flash before and thought that the arimidex would certainly cause those horrible sweats..My mom and my sister look as though they just got out of the rain forrest at all times...But my other sister (she's had a total hyterectomy) and I have not (knock on wood) been tortured by them....But the article seems to say it's better if you do have se's, I wonder if it has to do with the meds that we take for the se's or if the worse the se's the better off you might be in the long run..I do follow a very healthy anti-cancer diet (most of the time) and thought that may be a anti-hot flash se and I also keep my weight down, but the article makes me wonder if the arimidex is working, oh yeah, I have numb toes, yippee, I do have se's..
I am considering going gluten-free since it also seems to have many health benefits..I take my arimidex in the morning with coffee, don't know if that would help your sleep, but might want to give it a try....Peaceful nights to you, that is scary that you don't even remember awakening with all that pain.....Thank goodness for that nice DH of yours, mine is like that, we are lucky......
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BocaCiegaBabe: I will be 62 in Feb. If the dr. recommends going MWT, try it.
I started Femara Au. 29 every other day and so far so good.
Julia257, thank you for your good wishes. Hugs to all.
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Well DH said I did it again last night. I woke him at 1 am yelling in pain that my shoulder hurt. Again I have no recollection of the event. I do remember waking at 3 am to use the bathroom. The poor guy is going to be exhausted at this rate.
Somanywomen: My surgeon dismissed the nerve pain as well, and it was pure agony. Needless to say, he's no longer my surgeon. As soon as I got to an oncologist (after my mastectomy) she immediately prescribed Gabapentin and it began working shortly thereafter. It also would hurt in my shoulder blade. Each evening (before getting the Gabapentin) I was so worn down by pain that I was sobbing. It was over three weeks after the surgery before I got the medication. I suffered a lot during that time. I tried every painkiller that was given to me, but nothing worked until the Gabapentin. Narcotics don't work on nerve pain.
I will begin taking A tomorrow morning instead of evening and hope that it will make a difference. I also follow a very healthy diet and am not overweight. I sure hope it works and I can get a normal night of sleep. Thanks for the encouragement everyone.
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I'm not on Arimidex, but on Aromasin, but just wanted to chime in on what's been said about hot flashes/night sweats being a GOOD s/e. My oncologist is DE-lighted that I still have hot flashes & night sweats, he says that's a VERY VERY good thing. (That was on Tamoxifen for 3 1/2 years/chemopaused/Aromasin since 9/13). I don't LIKE them, but if they help with no mets/recurrences, I will endure them....grudgingly, lol. ~juli
ronqt: BEST of luck on your MRI, keep us posted?
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Uggg! I thought I was doing good because my SEs had gotten easier. I don't even know what is an SE or what is just my usual daily aches, pains and once in a while I get too hot. I hope your Onc is wrong. I will ask my Onc about that next appt. Maybe he can take some type of test to see if my Arimidex is still working. I am on my 6th year and I would hate to do it another 4 if it's not working. Anyone else have any information to confirm what Julio212 has posted? Thanks!
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MTG...I did find the Tumeric capsules...my white counter tops love me again (thanks to you)! A little pricey but I got them at Walgreens...Wally World is likely cheaper (WalMart, that is).
Funny thing about this gluten thing...I had my gall bladder out in Jan 09 and I started to notice bread and pasta were bothering my tummy so, I started to try to eliminate gluten. I like the Chex cereals and noticed that all but the Wheat Chex are gluten free. My tummy started to like me again. Then when I was dx with mets in Sep 09 and started Arimidex, I saw gluten free again about the joint pain. That is when I started to do more that just the cereal - it is really amazing! The cost is ok...the thing that gets me is the reduced size - like the Bisquick...it is a tiny box compared to what I usually buy and it isn't going to make enough pancakes when my Marine son comes to visit...will have to get a bunch of boxes! The Red Mill brand is much more cost and quanity friendly.
And thanks for the good wishes on the numbies...so far, so good - again, amazed at how about 2 minutes of isometrics every morning (and throughout the day sometimes) can eliminate the whole issue! Rocket, I sympathize - no amount of pain meds was doing a darn thing for it for me either - as long as these isometrics continue to work, I should be ok but I will keep the Gabapentin in the back of my mind in case it becomes an issue again - OMG that pain was like nothing I ever had before...so glad you got a solution too!
Hugs all...Low
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We are still unsure of many things. I had four chemo treatments, three weeks apart. Two chemo drugs. Had 33 radiation treatments, had issues with everything. Algeric to taxotere had to be pumped with steriods to tolerate it. Infections gallore. Then had bad radiation burns. I am very nervous about side effects of arimidex. I have degenerative discs in my back. I work out three times a week on an ellipitcal. Nothing for 7 months because of treatments, counts always low, risk of infections. Need to lose 45 pounds not gain. I'm 49, no history of bc anywhere. I was on a hormone three months before bc was diagnoised. It could of brought out the bc. It stopped a 58 day period. Chemo has thrown me in menopause. Stage 1, not in lymph node. 2 cm. Husband and I keep wondering why so much treatment since I'm low risk. Has anyone been through all this without taking a drug for five years. I can't find statistcs on women that choose not to take the drugs.
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Lowrider54 wrote: MTG...I did find the Tumeric capsules...my white counter tops love me again
Too funny ! As much as I love it, I got a little tired of eating curried everything.
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KMQW, have you browsed the DCIS thread as well. You may find much more information there as well about different treatments. Since you're still new you are limited to 5 posts a day until you reach 50 but you can PM any member (click on their name) posting there if something is posted that you want to know more about. For women who choose not to take drugs, you might find more on the "Alternative treatment..." thread (it may be under 'natural girls'). There's so many places on BCo to get info so hang in there.
HUGS to all my sisters.
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It is not uncommon for me to wake up soaking wet from sweating and getting up first thing in the morning walking like an old lady cause my feet hurt. By the time I get to the bathroom everything loosens up and I can walk normal. Funny how that is.
This old body hike/climbed to the top of Mount Washington New Hampshire on the 12th and I am soooo proud of myself that I made it to the top. Took the Cog Train down, LOL.
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Good Job, Deb!!
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sunflowers: Do you "really" want to know what those abbres are?
I think MWF (don't get nervous) meant Monday, Wednesday, and Friday per the content of the poster's post. MWT could be Monday, Wednesday, Thursday. If not, maybe the poster will clarify. 0 -
I could think of some things it could mean, but I don't want my post to be reported......
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Ruth: I think you're thinking of WTF, or WTH? LOL ~juli(always room for a bit of humor?
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I think WTF and WTH both are 100% appropriate for Arimidex. As for MWF, I understand why women would do it if the side effects are bad and the end result is the same. However, if it were me, I would want to make 100% certain that the end result is the same or at least sufficient to do what A is supposed to do. Thanks to the women here, I found out about the Serum Estradiol test - which for some reason has not yet been linked up to those who are taking half a dose.
The Serum Estradiol test is sensitive down to 3pg/ml so will specifically tell the amount of estrogen in our systems. If A is working - whether at a full or half dose - the level will be very low.
I did some research and found out that a major, nationwide lab, LabCorp, offers the test. It is an RIA Estradiol, Sensitive test #140244. https://www.labcorp.com/wps/portal/findalab/ I'm just got an Rx and will be scheduling the test, not because I'm taking a half dose but because I've been put into artificial menopause via Lupron and want to make certain my estrogen levels are are low as they should be. Just wanted to share.
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MTG: Yes, that's a good idea, and it's a test my oncologist tests for twice a year. I am definitely on the very low side, hence the switch from Tamoxifen to Aromasin (now post-menopausal). We who are estrogen+ really need these hormone medications to work, whether 1/2 doses or full dosing. (BTW: Aromasin is SO tiny at my 25mg. daily dose, I could not possibly cut that one in 1/2!) ~juli
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Sunflowers.....it's your RISK, not your total cholesterol number that is important.
I was worried about my bloodwork, as total is high, so is my HDL, and also my LDL. Very low triglycerides. They have algorithms to determine risk (plug in your readings and other factors, and it comes out). Turns out mine is something like 2%.
So not something you would treat. YAY!!!!!
BTW - my numbers are consistent with prior blood work. LDL might be a bit higher, but not to the degree that I can blame anastrazole.
I went out and bought the bacon blue cheeseburgers on sale to celebrate.
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sunflower and I will keep our abbreviation thoughts to ourselves.......what are bacon blue cheeseburgers? They sound quite sinfully delicious! 0
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No bacon blue cheeseburgers for me..Just got cholesterol results today and good HDL stayed the same, but the bad LDL went up...I believe it has something to do with Arimidex since last Oct total was a high of 235, I dropped it to 200 before Arimidex by changing my diet, I still try to follow same and it is back up to 217...Has to be the little white pill....My D level was 28 at first check last year and now staying at 45 last two checks....
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The local market makes them. Lean beef patties with wonderful blue cheese and top shelf cooked bacon. I just cook up and eat plain.....doesn't need anything else.
Fortunately, I froze the other package.
Yes, they are that good
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Yum, I HAVE to exercise because I can so not eat fun food!!! Somanywomen, I take niacin and that really helps kick the 'good' cholesterol up.
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My HDL is 85 and was 88 last year at this time.
That is why no action needed.
BUT.....I am having salmon burgers and veggies from farmers market for dinner tonight. Prior to my doing endurance cycling events HDL was in the low 60s. But that was 10 years ago.
Wine helps.
I am still laughing at the "food chart" in my Internist's office. It lumped grapes, grape juice, raisins and wine together as one of the "recommended foods". Heck, I will skip the "grapes" part and save myself some work. Wine stores better too.
BTW - my butt is still sore from those hills I cycled last Sunday. But then I just dragged enough veggies back from the farmers market to flatten a water buffalo.
(Forgot to mention, the slice of wood fired chanterelle mushroom pizza I had there...YUM.)
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ruthbru, thanks for niacin tip...
QUESTION for all....Say if I were going to stop Arimidex for a few days to see if my leg/toe numbness would go away..How many days of stopage should I aim for???????....Just want to see if it is the cause......but don't want to stop Arimidex more than a few days....
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I'd never stop any of my meds without my oncologist's knowledge. I personally have neuropathy from chemo, so I'd never know if my Aromasin is causing any of those symptoms, but I'd not stop it, just my .02 for whatever it's worth!
Niacin: If you're prone to flushing, niacin will add to that. It is a great supplement for high cholesterol, I use Omega 3/9grams daily for high triglycerides and WelChol (Rx) for high familial cholesterol (the other drugs for high cholesterol trigger my migraines worse).
somanywomen: I love your signature, and know U2's version of "All Along the Watchtower", LOVE it! Cool! ~juli
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juli...Jimmy Hendrix also did a version....I've been in toooo much confusion for almost (few days) a year now...Can't find no relief!!!...............The reason I thought I might try the self-test above is because I can't get a straight answer from any of my Docs on this leg numbness, since my two toes next to my little toes have been numb since starting arimidex I thought maybe if I only have to go off for a couple of days it might be worth it to find out if it i also causing my leg numbness/burning...I follow a very healthy diet and will try to eat mostly estrogen inhibiting foods those days...0
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and talk to your GP about the niacin; I get my cholestroel checked every 6 months, and it took some experimenting with doses to get one that was 'just right'. Also don't get the non-flushing niacin as it is not as effective, but rather the slow release (I buy mine at Walmart), and haven't had any problems with flushing.
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ruthbru, yes, that's why I made sure to mention if you're prone to flushing, the niacin will increase that. (that is me, urticaria--no niacin for me) My GP recommended years ago the 9grams of omega-3s and she was spot-on, at least for the high triglycerides I had, they've been normal for years now, but yes, it takes awhile to get dosing right with anything, I also take WelChol, and my levels are still a tad high. (nope, can't take the 'usual' cholesterol meds, tried them all, mega migraines).
somanywomen: Yes, I've also heard the Jimi Hendrix version, and love U2's the best! It's a great song and awesome lyrics (of course, Bob Dylan! Just like Bob's song "Positively 4th Street", I have that in my car, and it makes me laugh every single time at the last line...the lyrics are the most poetic/REAL ones...just love it)...sorry to go off-track here! I don't have advice, as of course, I'm not a physician, but I'd just be very wary stopping the medication. But, I hear ya on the numbness problem, that is frustrating. I DO know that Aromasin (and I believe Arimidex) have feet pain/burning as a s/e, many have mentioned that on the Aromasin thread. How long on Arimidex? Maybe it's a 'temporary' s/e? Good luck with that, I know how that goes.
~juli
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Assuming that most of us are older than 40, here's how the total cholesterol results break down:
Low risk: total cholesterol less 240 mg/100mL
Moderate risk: total cholesterol 241 to 260 mg/100mL
High risk total cholesterol more than 260 mg/100mLTotal Cholesterol to HDL ratio for women:
One half average risk of heart disease = 3.3
Average Risk = 4.4
Two times average risk = 7.0
Three times average risk = 11.0HDL Level
Less than 35 mg/dL is considered low and increases the risk of coronary artery disease
Greater than 60 mg/dL is considered high and protects against coronary artery diseaseNote: HDL levels are higher in people with hypothyroidism, and lower in people with hyperthyroidism.
LDL Level
Should be less than 70 mg/dL in people at high risk for hardening of the arteries
Should be less than 100 mg/dL in people at moderate risk for hardening of the arteriesTriglycerides for women older than 19
40 to 128 mg.dLNote: estrogens increase triglyceride levels, Vitamin C decreases triglyceride levels.
So, Sunflowers, your total cholesterol puts you at low risk for heart disease, Your triglyceride level is normal, your HDL is just at the protective level, your LDL is porbalby ok unless you have other risks for heart disease/hardening of the arteries (high blood pressure, hisotry of a heart attack, congestive heart failure, kidney damage). Your Total Cholesterol to HDL ratio is 3.4, putting you at about half the risk of heart disease of an average person. All in all, very good numbers!0
