Arimidex
Comments
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My onc tests my blood every 6 months. I asked once what my tumor marker was and his nurse told me they didn't do one on me before surgery so I don't have one! Is that "normal"?
I have been on arimidex since June of 2008.. right after my BMX. I only had BC on my left side but chose to do both. I had chemo first (4 A/C, 1 Taxol, 9 Taxotere) I had so many side effects from Taxotere it is hard to know which ones are now from arimidex. I have gone to a neurologist who prescribed Lyrica. I believe it has helped reduce the amount of leg pain and the "lead foot" feeling...which I don't know if it is from the arimidex or from neuropathy which was a SE of the 1 dose of Taxol I had.
I still have some joint aches, leg aches and pains, right hand and wrist ache and lately my fingers are so stiff it is hard to bend them (mostly in the morning) I used to have hot flashes and even a rash when I was hot (oddly enough if I walked into a/c and cooled off it would immediately go away) thank god tho...the hot flashes and rash are gone now. Oh ..I forgot... I take Zometa...once every 6 months also.
Chemo brain... I find myself forgetting things very often these days... my memory was bad before all this started (I was Dx on 10/12/2007) but it is really bad now. I write things down and forget to check the list!!
oh..and my hair seems to be getting thinner and has lost any "body" it had before.
oh well.. I am still here..that is what counts!
Good luck everyone!
Pati
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Hi everyone, I just got back from a vacation and am quickly scanning through the site; glad the toners are working out for people, soy lectin in different from soy and is OK to eat in the vitamin D chews (candy bars etc.). If wine works; then I'd say that it IS the real solution
!!! Lakewoman, you ROCK!!!! 0 -
I've been switched to every 4 months now too. Restless Leg Syndrome is a SE of Arimidex. I take 3 ibuprofens twice a day. Went to the beach for a few hours today. Felt good to relax and enjoy the sunshine. The more I walk and exercise the less SE's I seem to be having. Now I have no appetite and they are trying to figure if it is a SE or not. I have to make myself eat everyday. I don't even want to eat my sweets. Back to work on Friday. Have a great weekend.
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sobx -
I have no appetite either and have been losing tons of weight. I read somewhere that anorexia is a possible side effect of the AIs,but it's one of the lesser-known ones and is mentioned in tiny letters. LOL.
Is there anything to be done for restless leg syndrome?
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I have lost 20 pounds in 2 months totaling 50 pounds since this nightmare started. Losing the weight has been great but now I am down to 120. Read the same thing about Arimidex. My doctor is recommending a 1 month 'holiday' because of bone/joint pain (turns out I had a broken heel for months) and numbness in my arm and fingers. I am looking forward to this 'holiday'. I have been on Arimidex since mid-February.
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Kamico,
I have tingly hands and numb fingers. On the phone ONC triage nurse said to see my GP, GP said to talk to the ONC. On the phone the ONC triage nurse said to take an arimidex 'holiday'. I have been taking it for 3 months. Started having joint/bone pain after one month. I was Dx with broken heel on 5/15 (after 2 months of swelling and pain in my foot ... they finally did an x-ray and found a broken heel).
I am looking forward to the holiday. I hate having to call and see all these doctors. I hate being bounced between the GP and the ONC triage nurse. I feel sometimes like they'll think I'm a hypochondriac but then I remember that after my 3 calls complaining about the pain and swelling they finally ordered an x-ray and found broken heel...it seems like cancer is hard enough and diagnosing a broken heel shouldn't be this hard.
I have osteopenia, had CT chemo 4X (finished 2/14/10), had ovaries removed (2/23/10), have a thyroid disorder (5 years), have familiy history of osteoporosis, have a bone fracture (dx 5/15/10) and when I asked -- on the phone -- if broken heel could be related to osteopenia and loss of bone density I was told no -- there was no relationship. I am not being treated for bone density and haven't had it checked since before this BC thing started. I am concerned that no one is concerned. I am frustrated and want to just give up and forget about it all. It's too exhausting to deal with ... I have a life to live and don't have time for all this ... what an oxymoron...lol.
big sigh...take care and God bless
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I may have asked this before but How do you know when you may have something more wrong than simple SE from arimidex? My knees , feet , ankles and lower back hurt all the time...much worse in the mornings. This has been on my mind alot lately ..... I hate to go in with every ache and pain but then if I don't something could come up. I want to catch anything that happens right away. Anyone else going through this?
Hugs~ Balsie
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Balsie, it sounds pretty classic arimidexy to me; SIGH!!! Anyone else with another thought?
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Hi brendaskids, it's no wonder you're discouraged and I can only imagine the pain from a broken heel. I hope it heals fast and that you get the best possible care so that you are in good health in no time at all. All my best wishes.
I feel the same way Balsie, we absolutely need to know what we're dealing with to know what to do about it. I hope you have a good Primary Care Physician that will give every issue the proper attention.
Hi ruthbru, welcome back. I don't mean to be confrontational but how do you know soy lecithin is ok? It seems to me that if there is any hint of a possible negative, rather than take the risk, it would be safer to stay away.
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painterly....That's interesting about the stocky women and thinner woman with the se's being worse for the thinner one..It does seem to make a lot of sense that the dosage for different size/weight women might be a consideration to help with se's of Arimidex, just makes sense!!!!
enjoyful..your comparison of pedaling a bed-bicycle is a great way of describing the foot action that happens with RLS (restless leg syndrome), I loved it!!!...I have had RLS for years, before bc so I do not believe mine is related to Arimidex..However, a couple of years ago, I was eating a lot of popcorn in the evenings and my RLS would be worse on those nights..I started thinking it had something to do with the salt in the popcorn..I started minimizing my salt intake, esp., after about 4pm and low and behold my RLS improved dratically!!...Now, I can be assured with heavier salt intake that the crazy worm symptoms followed by pedaling will reactivate...My friend also had RLS and she can also be assured of worse symptoms with heavier salt use...It's an easy fix and worth a try if you're lucky enough for this to have the same effect for any of you that is dealing with this..
brendakids...that's terrible you had to wait 2 months for docs to take you serious about your foot pain only to find out you had a broken heel...My toe (on both feet) next to my little toe is numb most of the time, strange how it is just that toe..I am on my 5th month of arimidex....
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Good morning all, I went to Onc. this past Wednesday and I told him about my left hand with swelled fingers and poor wrist movement. He asked if I had been to an orthopedic surgeon, did I ever have carpal tunnell? He also said my hemoglobin test results were a little off. My main concern was my wrist. I am now on a 1 month holiday of no Arimidex. Go back to him on July 21. He said my joint and wrist problem was a major complaint with Arimidex, but he doesn't understand why 1 hand and not two. Hopefully we will find the answer when I go back to him.
I am wondering if I abused my left arm and hand when from Oct. 30 after mast. of right breast I could not move my right arm for awhile and relied on my left arm completely. He said it will take about 1 week for s/es to go away. Can't wait to feel "normal" again. I started to read Dancing In Limbo. So far, so good.
Have a great day.
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Ronna,
My "joint" pain that I totally attribute to arimidex is only in my two little fingers on my left hand (left side lumpectomy). Both pinkie and ring finger look perfectly normal but are exquisitely tender and do not fully bend. They are worst in the morning, loosen up as the day goes on.
It's a mystery :-)
Best wishes,
pam
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I take ibuprofen for the RLS. It seems to help and my joints don't hurt as much in the mornings. I couldn't hold a cup in the morning for a few weeks. (Hard to drink that hot tea through a straw.) I have played around with eating different things and seeing how my body reacts to it. When I eat sweets at night I have night sweats. My joints don't hurt as much now as when I started "A". I think the weight lost is from "A" but will see. I've been on it for 17 months. I had to lay off of some of my exercising but will get back into it. I had surgery on my leg and couldn't walk for a while and now the heat is really humid. My dog doesn't even want to go out! I'll keep you informed on how things go.
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Julia, I'd have to look it up in my files of research (of which I have a whole closet full which I need to get organized as everything is all thrown together), but I was worried about that too as almost everything lists soy lectin, but one of the things I read said that whatever is suspect is taken out of the lectin (sorry that I'm not more clear but would have to dig through all my notes to find the source), another thing I read was that if, when you read the ingredients, if something is not listed in the first 5 ingredients, it should be OK also. I go by that because if I worried about every single thing I would be crazy (or crazier anyway)!!
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Hi Pam; This whole joint thing is a mystery. Can't wait to see what happens by next week.
Now I have to worry about red cells not normal and being anemic. Again, the next blood test will tell on July 21. You don't mention wrist problem, just fingers. I guess different s/es for everyone.
Being off A for 1 month kind of scared me. I asked him if my cancer would come back and he said no. He better be right!! Oh well, I have to enjoy my holiday of one month free.
Have a great and healthy rest of the day.
Regards.
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somanywomen - some times I wish that there was a way for doctors to experience what patients experience (i.e. chemotherapy, Arimidex, heel fractures) maybe then it wouldn't take so long to figure out what was going on. My GP is very good but he doesn't have the specialized knowledge the Onc has. I just wish there was some way to address all the joint pain.
Julia267 - Thanks for the encouragement. I am feeling better. I just had my last day of school today and can now relax and let this heel hear and enjoy this 'Arimidex Holiday'. I hope the nurse is right about it not effecting the cancers return. Take care!
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Ronna, what happens after one month, is that se not supposed to return when you go back on? I just don't understand or is it just to give you a break? Just wondering.
I have to report that my hip pain is tremendously alleviated. I threatened to stop the glucosamine but didn't however I did increase my daily D3 from what I get with the calcium and multi-vitamin and added D3 supplements. I'm taking about 3300 IU's a day for almost 2 weeks now. Wonder if that is helping the hip? It has not helped the trigger finger and I've been feeling tightness in my other wrist but that may be the carpal tunnel so I'll wrap that up tonight.
< sigh > - having fun yet?
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Hi everyone,
This is day 15 of Femara for me and the joint pain is at least as bad as it was with the Arimidex. Grrrrrr... I will focus, keep my perspective and take lots of ibuprofen or perhaps something stronger.
Bonnie
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Stronger? Just heard on the news about a 197 proof alcohol! Hmmmmmm, if I drink that it would probably put me out of my misery for the remainder of my Arimidex joourney (44-1/2 months left).
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Joint pain had recently been bugging me a lot as well - pain and stiffness in my hands and lots of creaking in my ankles - so I started researching. Since inflammation and joint pain are common not only to AI users but people with Diabetes and Lupus, I looked into some of the suggestions I found in articles related to them.
Now, it may simply be that the glucosamine has suddenly, coincidentally kicked in or that I've upped my D3 (Thanks Patoo, I wouldn't have thought that could help, but now you've got me thinking) but, for the last week I've been avoiding foods known to contain substances that can cause inflammation and joint pain (except for coffee, can't give that up!) and eating lots of anti-inflammatory food. The result: my joints actually do feel much better.
We all know about exercise, glucosamine condroitin, fish oil and avoiding sugar. For anyone interested, here's the list. For everyone else, sorry about the length of this posting !
1) Foods to Avoid: processed and canned foods; white-flour foods (crackers, white rice, white bread, and white pasta); fried foods; sugar; caffeine; and hydrogenated or processed oils (found in margarine, peanut butter, potato chips, etc.; but extra virgin olive oil, macadamia nut oil and hexan free coconut oil are fine),
2) Other foods to possibly avoid: Figure out your food allergens-they can trigger inflammation. You can be tested for these allergies or try an elimination diet. Every two weeks, eliminate one of the foods below for fourteen days. Pay attention to how you feel during that time. Slowly reintroduce a modest amount of the food, and track how you feel. A journal can help you put the pieces together. Avoid a different food from this list every two weeks. The most common food allergens include dairy, wheat, peanuts, eggs, red meat, eggs, brewers & bakers yeast and "Night-Shade Vegetables" like white potatoes, tomatoes, peppers, eggplant, cayenne pepper, pimento, and paprika also contain a substance that can cause joint pain
3) Eat foods anti-inflammatory food:
Vegetables: Asparagus, Bell Peppers, Bok Choy, Broccoli, Broccoli Sprouts, Brussels Sprouts, Cabbage, Cauliflower, Chard, Collards, Fennel Bulb, Garlic, Green Beans, Green Onions/Spring Onions, Kale, Leeks, Olives, Spinach, Sweet Potatoes, Turnip Greens
Fruit: Acerola Cherries, Apples, Avocados, Black Currants, Blueberries, Fresh Pineapple, Guavas, Kiwi, Kumquats, Lemons, Limes, Mulberries, Oranges, Papaya, Raspberries, Rhubarb, Strawberries, Tomatoes
Herbs & Spices: Basil, Cayenne Peppers/Chili Peppers, Cinnamon, Cloves, Cocoa (at least 70% cocoa chocolate, Licorice, Mint, Oregano, Parsley, Rosemary, Thyme, Turmeric (there are also inexpensive Tumeric supplements)
Nuts & Seeds: Almonds, Hazelnuts, Sunflower Seeds, Walnuts
Fish: Cod, Halibut, Herring, Oysters, Rainbow Trout, Salmon, Sardines, Snapper, Striped Bass, Tuna, Whitefish
Drinks: Green Tea
Here's one really good article, http://heartspring.net/inflammation_joint.html. I can provide others if anyone's interested. Hope this helps !
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Hi Patoo. My only real complaint when I went to Onc was the wrist pain and finger swelling in left hand. He has asked me if I had previous problems with carpel tunnell. I did not complain about anything else, because basically that was the worst of it. My leg pains have subsided due to my taking Advil. 2 in morning and 2 at night. I am now in my 3 day off and feel like my head is a little more clear. I hope all this makes sense.
He said stop the Arimidex for one month and see how it affects my joints in the left hand. I don't know if he will put me back on Arimidex or try something else. I prefer to stay on Arimidex because after 7months on it, I feel like it is part of me. After I go back on, I am sure all s/e will return which I was able to deal with except for the hand, and if I still have trouble with the left hand I will go to either an orthopedic surgeon and/or rheumoad arthritis dr.?? (sic). I think already I am beginning to feel some normalcy with the wrist problem. Having to deal with this is all bs but it is better than alternative.
Also, after his reassurances to me that cancer won't return during this time away from Arimidex, I am still very nervous.
Just can't wait for July 21.
So basically he wants to know if Arimidex is the cause of the severe wrist problem. Time will tell.
Have a great day.
Hugs.
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Thanks ruthbru, wanna buy stock in soy beans? M, thanks for the list. I'm with you on the coffee. I saw a study out of England that connected 4 cups of tea/day and the incidence of RA. No such connection was made from drinking coffee. Say it ain't so...peanut butter is a no no!!! I can't go on!
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Thanks MTG for the list. I gotta have the coffee too, no matter what any study might ever say!! Or else I will have to join patoo with the 197 proof alcohol........and we can all reconnect in a couple years at an Alcoholic Anonynous website. 0
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It was bugging me that I couldn't back up what I said about the lecithin, so I went online and quickly looked up a couple things for us (still to lazy to dig through my stacks!). Here is something from a nutrition website:
Q: I have a question regarding soy products and breast cancer. I was diagnosed a year ago with DCIS, ER/PR+. I have read that people with this type of breast cancer should not consume products containing soy protein isolate. Is the same true for products with soy lecithin?
B.A.
Harford, Conn.A: The relationship between soy intake and cancer is a topic that has been studied extensively. However, to date, the results have been inconclusive as to whether consumption of soy products, particularly excessive intake of isoflavones, can stimulate the growth of ER+ tumors.
Soy is naturally rich in isoflavoves, a phytoestrogen, that can bind to estrogen receptors (ER) and create weak estrogen-like effects. Chemical components of soy isoflavones have non-hormonal properties that have been associated in numerous prostate and breast cancer studies with decreased cancer cell growth. The majority of studies showing a benefit to soy intake have used "whole soy" products such as soy milk, tofu, soy nuts, tempeh, and edamame, which are all healthful, lean protein sources. Moderate consumption of foods high in phytoestrogens is unlikely to have any adverse effects, such as 2-3 servings per week. What should be avoided are soy products that are concentrated sources of phytoestrogen such as dietary supplements, pills, powders, and soy-based protein bars, as you mentioned in your question.
Soy lecithin, extracted from soy-bean oil, is often used in numerous foods, like chocolate to help keep ingredients emulsified. Many food labels will list a soy-based emulsifier like lecithin. The amounts are generally minute and don't contribute a substantial level of phytoestrogens. Products with soy lecithin do not need to be avoided because they have such minor amounts.
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here is another one from an BCO 'Ask an Expert' conference:
CarolC: I have had estrogen-positive breast cancer and must avoid phytoestrogens found in soy, flaxseed and oil of evening primrose. How much of a risk is there in eating foods with soy or flaxseed in them? Almost everything "lite" contains soybean oil or soy lecithin. Everything has soy lecithin or soybean oil in it that I purchase. I take Arimidex daily.
Answer -Beth DuPree, M.D., F.A.C.S.: Unless you are adopting a diet that is so heavily weighted in soy products, I do not believe that you need to worry about the tiny fine print on foods that you are purchasing to eat. The phytoestrogens that are found in soy can have estrogenic effects in the body, but unless you are eating a diet that is so heavily loaded with soy products and soy milk and tofu, etc., I do not think you need to worry about the soy bean oil and lecithin found in the fine print of some of the processed foods. I do not believe that women that have been diagnosed with breast cancer should change their diet to increase the amount of soy in their diet, as the studies involving soy in the diet are very conflicting. Therefore I would not change my diet to increase the soy thinking that you're adding a benefit. But I also would not avoid products in your diet that have soy or lecithin as such minor components.0 -
Ruthbru,
love your new avatar!
pam
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Thank you, me at my niece's wedding in NC, a great time!
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Love going to weddings! Best ever was DD's... 7 years ago. Went to a wonderful wedding in Nantucket several years ago. Recently attended a very New York style wedding in Orlando. It's so fun to see each couple put their personality on it. Happy Days.
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Ruthbru - I like the new pix too. Where was the wedding in NC? Everyone stay cool this weekend.
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By the way, Ruthbru... how do you get from North Dakota to North Carolina? Sounds like a long trip! But well worth it :-)
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