Arimidex
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Weety - When I started Arimidex I had symptoms like you - my ankles would creek with every step when I first got up; if I sat down my knees would crack. I think I described it here as "Snap, Crackle and Pop" I also had stiff and creaky hands, esp between the thumb and first finger as well as the wrists.
Now, 4 months in, things have vastly, vastly improved. In addition to Vitamin D3 and Calcium, I take the following daily for joint pain as well as other benefits: (1) Omega 3 Fish Oil (800mg of EPA and 400 mg of DHA, (2) Glucosamine Chondroitin & MSM (1,500mg of Glucosamine, 1,200mg of Chondroitin & 1,000mg of MSM) and (3) CoQ10 (400mg). I also eat a diet high in antiinflammatories ( fish, almonds, olive oil, cayenne, tumeric, lots of fruits and vegs and avoid foods that are know to cause inflammation. I can PM you a list and some articles if you'd like.
Things really do get better !
Ooo, almost forgot, here's another reason to take fish oil: http://www.aolhealth.com/2010/07/09/fish-oil-may-reduce-risk-of-breast-cancer/?icid=main|htmlws-main-w|dl5|link4|http%3A%2F%2Fwww.aolhealth.com%2F2010%2F07%2F09%2Ffish-oil-may-reduce-risk-of-breast-cancer%2F
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Hi Weety, I understand very well your hand problems. Me too with that. My onc wanted to see what would happened if I went off for one month, I have been off since 6-17 and I go back to him 7-21. Excruciating pain in my left hand, if you read some of my prior posts.
My onc recommended that I see an orthopedic surgeon which I recently did, he also mentioned a rheumodoid arthritis dr. (I have not seen that one yet). I was tested for carpel tunnel. It is not that, just soft tissue, tendonitis and arthritis, (never had it before taking A). I feel for you. I know the pain and most of us gals do as well. It has gotten a teeny better since off A.
I have about another week and a half of freedom, but I do want to get back on my medicine.
One thing I can tell you is every morning when you get up, take a wet hot cloth and squeeze it. Try bending your hand with fingers down one way and the the other way. This could somehow help you. I also take Calcium 3 x a week, Oscal with D 2x every day, and fish oil 1,000 once a day.
Wishing everyone a good night.
P.S. I am also taking advil two in a.m. and two in p.m. Any more would give me heartburn.
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Hi sunflowers, do you have to get used to those Shape-ups? I tried a pair and wasn't too crazy about it. It's like standing on a rolling log with your toes up and trying to get your balance. But if everyone likes them and they're beneficial, maybe I'll try again. I so agree with Ruth and make sure I walk at dawn everyday ~ 45mins, hills and dales. For the rest of the day I'm prone, does that count?
About 3 weeks now for me on A and TG, so far so good. A few months ago, before all herring broke loose, MTG I was taking your regimen but stopped absolutely everything including vits during the course of chemo. I know others didn't do this, but my way of thinking...I didn't want anything at all to interfere with the big guns. So about all that good stuff you're taking, have you checked it out with the onc patrol? Thank you...waiting for daybreak to hit the slopes.
(typo edited)
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Hi Ladies, please excuse my ignorance but what are Shapeups and where do you get them? Also can you tell me how many post do you have to do before the no more than five in 24hrs is lifted? Sorry about all the q's. Love n hugs
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I wear my Shape Ups (actually mine are made by Curves) for walking only. Even after a year of wearing them I am a little unsteady in them. I feel a bit like a "weeble" who would fall down. BUT they have been great for my legs... really toned up.
Several companies now make this style.
pam
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joycek, my appetite isn't what it was and meat is also, for me, most of the time, pretty unappealing. I don't know if it's the Arimidex or another med I'm on or both. (Or just my old vegetarian habits kicking back in). I haven't lost a lot of weight but my weight is slowly going down because I know I'm eating less (and healthier, most of the time). I exercise or try to but so far I know I'm not exercising enough to cause weight loss so I attribute it to what I'm (not) eating more than anything. If your weight loss becomes significant or eating becomes a problem, I'd think about contacting your doctor, but otherwise, I'm not complaining about that SE!0
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Hi Joyce! I've had very mild nausea and almost complete lack of appetite on the AIs. Anorexia is listed as an uncommon side effect of Arimidex.
Hope you start to adjust to the meds and feel better soon.
E
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I never could get used to my shape ups and they sit in my closet...... but I know that many people swear by them (maybe it's because they are Sketchers & I should have gotten a bigger size?). And back to a question awhile ago, you should NOT be taking any suppliments or even vitamins during chemo unless OKed by your doctor first.
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Thanks for all the replies and helpful tips. I will try some of them and see if they help. I have been taking vitamin D,as my numbers were "normal" but at the low end, so I've been trying to bring them up.
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Joycek - I have both gained and lost weight on Arimidex. Pre BC I was a great healthy eater - lots of veggies - well balanced meals. Post BC can't cook. Veggies and meat go out in the garbage. There is something emotional keeping me from food. At first, I ate comfort foods and frozen entrees (hence the gain) but then I just lost my appetitie and weight. Now I stay away from meat - I can't get it in my mouth.. Eat lots of fruits, veggies I eat raw like an apple and otherwise try to eat small non-meat meals. Weight changes nave not been significant either way.
Both weight gain and weight loss are side effects on arimidex. I wonder if taste buds are affected by the drug and thus food preferences have changed. Fatigue is also a factor. Complex food preparation overwhelms me.
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Julia257 wrote: MTG I was taking your regimen but stopped absolutely everything including vits during the course of chemo.....So about all that good stuff you're taking, have you checked it out with the onc patrol?
Yes, absolutely. I check everything with my medonc, breast surgeon (who I respect most of all) and GP, as well as researching various web sites. All agree that Vitamin D3, Calcium, Omega 3 Fish Oil and Glucosamine Chondroitin & MSM, in the quantities I'm taking are ABSOLUTELY GREAT for me. As for CoQ10 - the vote is split; my MedOnc says he doesn't think it will do anything; however, when I asked if he thought it could hurt, he said absolutely not. (I was very briefly taking Reservatrol but one of my docs mentioned some possible adverse effects ~dont rememebr what now ~ so I stopped it).
And you ladies have inspired me yet again. Gonna head to DSW for a pair of Shape Ups/ Curves whatever tomorrow. Sounds like fun. Does anyone wear them when walking on a tread mill ?
Edited to add: by the way for those of us (myself included) who are too tired at the end of the day to cook healthy meals, try any of those Steam Fresh frozen vegetables (or, for a tiny bit more work, i.e. opening a bag a putting the veg into a microwave safe container, any frozen vegetable) I use the combinations - like broccoli, cauliflower, peas and carrots. You can eat them hot or cold, alone, on a salad, some sort of carb like rice or pasta, or with a meat or meat substiture, with whatever sauce you like (best to skip the mixes that are pre-seasoned so you can maintain control). Sometimes, I'll add additional vegetables. And when I'm inspired, I even curry them An easy way to get your vegetables !!!
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MTG ... what fish oil are you using? My docs told me to stop the one I was taking because it contained soy and my tumor was ER+. I see that yours was also. Basically my docs said to not take any supplements containing any form of soy. Onc is OK with foods conatining some soy but does not want me taking soy in supplements. I have started looking at other fish oil supplements but they all seem to contain tocopherols which seems to me to be a soy-oil based ingredient. Or am I missing the boat here?
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Deerone,
In the Soy vs No Soy controversy, I'm one of those that doesn't worry about it too much so, although I wont actually take a soy or flax seed oil supplement, my fish oil does contain soy. (BTW, its from Vitacost, NSI's Mega EFA and I love it. No extra vitamins, no after taste, ultrapurified and no aftertaste).
With that said, check out Kirkman Labs and Carlson Labs, both have soy free options as part of their search engines.
For Kirkman:
Kirkman Labs Max EPA® Omega-3 Fish Oil , "Does Not Contain Gluten, yeast, wheat, milk, milk derivatives, lactose, soy, egg, corn, grapefruit, shellfish, sweetener, sugar, starch, preservatives, artificial color, artificial flavor, sodium. http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@459.aspx
Also has soy free Vitamin D3 http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@312.aspx for 1000IU;
http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@462.aspx for 2000IU
And soy free Glucosamine (although without Chondroitin) http://www.kirkmanlabs.com/ViewProductDetails@Product_ID@200.aspx
Carlson's web site seems to be down so I cant check it.
And there's also:
Jarrow Formulas Max DHA say "No wheat, no gluten, no soybeans, no dairy, no egg, no shellfish, no peanuts/tree nuts." But I'm not certain if that would also excluded soybean oil http://www.jarrow.com/product/90/Max_DHA
and
Nature's Answer, Liquid Omega-3, Deep Sea Fish Oil EPA/DHA, Natural Orange Flavor, 16 fl oz http://www.iherb.com/Nature-s-Answer-Liquid-Omega-3-Deep-Sea-Fish-Oil-EPA-DHA-Natural-Orange-Flavor-16-fl-oz-480-ml/7908?at=0
Hope this helps !
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JoyceK - I have been on "A" for 18 months and have faced the weight loss in the last few weeks. I have no appetite and have to be reminded to eat. I can go all day without eating. I have stopped losing weight so that may be a good sign. They have done all kinds of tests and I'm fine. So they say. I just don't eat and sleep 9 hours a night. I stated it might be "A" and no one would listen to me. Guess I was right. Now what to do about it.
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Hi ladies, Had a 6th month checkup today (all is OK, whew!!!!!) & visited with my onc about the generics. He said he would have no concerns about anything manufactured in the U.S. as, by law, they will have to be at 95% potency as compared to the original. He would not get anything manufactured in a different country (even Canada).
We also talked a little about how he feels about extending the Als beyond 5 years. (People who hate arimidex should stop reading now). He says that, of course, each case is individual, but more evidence is showing that, if a person is young(ish) and her bones are holding up OK, going beyond 5 years may be a good idea, as with ER positive there is always the reocurrence factor even years later......they are still doing studies & I still have 2 years left......but something to watch anyway.
Balsie, how did your appointment go?
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Ruthbru - congrats on your 6 month check up. How often do you see your onc? I see mine every four months. After two years it is every six months I have also heard that being on Als longer than five years is beneficial in keeping a reocurrence away. I still have four more years to go so maybe by the time I hit the five year mark they will know if taking it longer with be of any benefit or they might have something else for us. I have only been on Arimidex for a little over a week and so far so good without any SEs. I'm keeping my fingers crossed!
Diagnosis: 4/10/2009, IDC, 1cm, Stage I, Grade 2, 0/2 nodes, ER+/PR+, HER2-0 -
I did every 3 months for about 1 1/2 years & now am every 6 months for I don't know how long, maybe forever? My doctor said that research is moving so fast in BC. They are finding new treatment options & making advances all the time. If I had been diagnosed today, there would already be a couple things we would have done differently than even 3 years ago (bad for me, good for people after me!). They are doing clinical trials on extending the Als now, so hopefully we will have some good ideas on the benefit of taking them longer (or not) by the time we need to make those decisions.
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Ruth ~ My appt. went well all my blood test came out ok with the exception of the cholesterol..that was 211 and it is usually around 165-175. I would think with all the juicing I have been doing that it would be way down or at least what it normally is. He also wants me to have a PET scan because I complained about lower back pain. He also mentioned taking "A" longer then the 5 years to me.
I also had zometa today for my bones...I do this every 6months for 3 years. The first time I had it I got really sick , flu like things going on, but not today and so far tonight nothing....hooray!!
Super glad yours went well too!
warmly~ Balsie
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Hi everyone-
I haven't been on here for awhile. I had my 6 month checkup on Weds. All is going good, my bloodwork showed everything is in normal range. My glucose was a little high, but nothing major. I have to have a vitamin D and bone density test next time I go in. I have my visit with PS in early August, then pick my date for exchange surgery. I'm thinking late August.
balsie-I also have constant low back pain, I'm sure it's from 'A'. I had 2 back surgeries and my back has been really good until I started on 'A'. I talked to my onc about this, and he said it's a side effect and to keep moving and exercising.
ruthbru-I love my Skecher's Shapeups. I wear them to work every day. You do need to order 1/2 size larger as they run small. They felt funky at first, but now are very comfortable.
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Hooray for the good checkups!!!!!! I will have to give the Skechers another try, maybe more for just everyday walking around instead of my daily walks, where I go faster & feel like I'm going to fall off and sprain my ankle.
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Hi Horsegal,
Aspercreme and I were tight prior to diagnosis and I find it really helps with knee soreness. Also ibuprofen. I often need both prior to long bicycle rides. My back is fine and well-muscled.
So was wondering if it might help you and Balsie.
Otherwise, I have very few SEs from Arimidex. BTW - my knees were no bargain prior to diagnosis. - Claire
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Just got a call from my oncologist. Seems they checked my vitamin D level after I left last Weds. It's very low, so I'm now on 50,000 IU of vitamin D once a week, and also 2000 IU of D3 daily. Man, I am sick of all these pills, hard to remember so I write on the bottles in 'red' marker so I don't goof up!
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I bought one of those daily pill organizers (actually two; one for the arimidex & a bigger one for everything else), otherwise I can't remember what I took or even if I took it!
Thanks for the natural fish oil tip, sunflowers, I will look for it.
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Without having to read through all the posts here what is the normal range for Vitamin D. My onc tested mine and he said it was 34. Is that good or bad? He said it was normal and left it at that. Now I am wondering if maybe that is low and should be taking some kind of supplement. Any advice?
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Ruth - I do the same with all my pills. I have two organizers - one for my Arimidex and then one for all the vitamins that I take.
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Ruth - I do the same with all my pills. I have two organizers - one for my Arimidex and then one for all the vitamins that I take.
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Ruth - I do the same with all my pills. I have two organizers - one for my Arimidex and then one for all the vitamins that I take.
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Hi, I've been taking Arimidex since Sept. 2009. Fortunately I haven't had many side effects. BUT, has anyone noticed strange, vivid dreams??? They are long and detailed, but not disturbing. I asked my doctor about the dreams that began at the time I started the Arimidex. He said it was possible but he hadn't heard of it before. At least they aren't bad dreams and I still feel rested in the morning.
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ruthbru wrote: "[My onc] said he would have no concerns about anything manufactured in the U.S. as, by law, they will have to be at 95% potency as compared to the original. He would not get anything manufactured in a different country (even Canada)."
The trouble is that it's going to be hard for us to tell where these generics are really being manufactured.
Here's an example: My pharmacist said the generic Arimidex she is stocking is coming from Breckenridge Pharmaceutical. She said Breckenridge is a large company with a good reputation.
The trouble is, I could not find "Breckenridge" on the list of companies whose generic versions of Arimidex were approved by the FDA. So I Googled "Breckenridge x anastrozole", and, sure enough -- Breckenridge "launched" a generic version of Arimidex at the same time as all those other companies. But, it turns out, Breckenridge does not make the anastrozole they are selling.
One announcement I found said this: "BOCA RATON, Fla., June 28 /PRNewswire/ -- Breckenridge Pharmaceutical, Inc. announced today that they will launch Anastrozole 1mg Tablets. The U.S. Food and Drug Administration has granted final approval for the Abbreviated New Drug Application (ANDA) for this first time generic, which is being supplied under a licensing agreement." [I've highlighted the important part.]
After some more searching, I found out that the anastrozole being marketed by Breckenridge (at least here in the U.S.) is actually being manufactured by Natco Pharma Ltd., a company located in India. If you look at the list of FDA-approved manufacturers, you'll see Natco is on that list.
Here's a link showing what's going on: http://www.labeldataplus.com/detail.php?c=23144
Scroll all the way to the bottom of that web page, and you'll see the key information. The version of generic Arimidex that my pharmacist has is being manufactured by Natco Pharma Ltd., and being distributed by Breckenridge Pharmaceutical, Inc. They have to put that information on the label of the original bottle -- the one our pharmacists use -- but we rarely see that container:
(Sorry if that image is fuzzy. It looks okay in original form and I can't fix it here.) Anyway, I guess it's another example of "buyer beware."
otter
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Claire~ thanks for the aspercreme idea ... I just put some on my knees and my back..so we shall see.
My PET scan is set for Monday. The nurse told me that I need to rest the whole day before I go in. I think I will tell my family it is rest for two day prior and that maybe I have to have them every couple of months. I doubt that will work. Any one else have a PET scan?
enjoy your night!
Balsie
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