Arimidex - Coping with the SE's
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Welcome, Marie2 to the club no one wants to have to join. Glad you found us, and glad the boards are helpful.
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Marie2 - I just finished with radiation and was able to work through the whole treatment. My appointment was scheduled for right after work and I work and live close to the hospital so that was a big help. Hope it works out for you as well.
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Good Morning ladies. Well, I've been on Anastrazole (from Costco) for 3 weeks now - with onco's approval I waited until after rads in order to deal with one set of SEs at a time. With A, so far so good, but I expect that many SEs take some time to show up. I'm certainly not complaining, and hope to continue this way!!!!
Fortunately my DEXA was good. Have been trying to follow the advice and trail blazed by those of you who've been here longer and keeping up exercise, supplements, and eliminating soy, etc. My question about soy is -- is soy oil, which is in almost everything, also estrogenic?
This week's research has been interesting for me and I'd like to hear others opinions.
cancer.ucsf.edu/_docs/cnc/nutrition_breast.pdf (I got to this doc through google, or try www.ucsfhealth.org patient education library)
http://interactions.evidencewatch.com/
Feet neuropathy: I was having some trouble a few years ago (scarey, and the first dozen or so steps in the morning were numb). My doc talked with me about my posture and the way I slept, and especially the way I sat and crossed my legs at the knees. After I paid attention to that unconscious activity it got a lot better; a nerve must've gotten pinched in the process...
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Lost_Creek thanks for the reminder about the Nutrition and Breast Cancer article. I looked at it earlier and made a note of the url after someone else mentioned it on BCO. Here's the link that I have -- http://cancer.ucsf.edu/_docs/crc/nutrition_breast.pdf0
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For those of you who have been on Arimidex and/or anastrozole for over one year.... have you had a follow up bone density test? I had one during my pre-op work up and thought my onc would order one recently, my one year on A was up in July. But she said insurance companys usually would not approve it. My baseline study was normal with one area of osteopenia in one hip joint. I just thought it would be standard follow up to see what A was doing to my bones. Also, I will go on Medicare in a little more than a year. Does Medicare cover bone density tests? Thanks.
pam
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In Maine they don't do bone density before starting arimidex, they do one after 2 years. If that one is ok, then they do a second after another 2 years. But Maine, I'm finding more and more often, is behind the times. I beleive Medicare will cover a bone density test after you've been on arimidex as it is a high risk drug for osteoporosis, but I don't know if it covers one before starting.
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I was told by my onc at my last appointment to ask my pcp to order a followup test in 18 months. The pamphlet that he gave me at that time outlining followup programs after breast cancer treatment says those who are taking Als should be tested every 18 to 24 months.
I've read that the results of tests taken more frequently do not show an accurate comparison of bone density changes, which is probably why your insurance in the US might not pay for it.
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I am on medicare /medicaid and got a bone density test (pre-A) no problem- it's possible it was the medicaid that covered it but I doubt it. Medicare covers most tests.
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Pam
By chance I had a bone density test just days prior to my diagnosis and my oncologist did order another the following year to see if the Arimidex had any effect on my bones. I think while on Arimidex she will order one every year but am not certain. I go to MD Anderson.
Pat
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I am trying to work my schedule so most things get done before 12-30-10 or after I go on medicare in fall 2011. Hope to avoid meeting my really high deductible AGAIN in 2011 :-) So it sounds like I can put off a bone density repeat til I am on medicare. I exercise a lot and have not had any bone breaks thru the years so probably will do fine. Thanks.
pam
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I can't remember who asked the question about having numbness in their hands while on Arimidex. I have been experiencing this with increased frequency. I've been on A since 4/15/10. I finished chemo in April as well. Last night I was awakened four times with my entire hand and fingers being numb and tingling. It lasted about half an hour each time. It wakes me out of a sound sleep. I mentioned it to my onc and she told me that it could be related to the Arimidex. I'm debating switching to Femara, but don't want to battle with additional or different SEs. I'm not sure what I'm going to do just yet. I think I'll stay on A until I can't stand it any longer and then I'll switch to another if necessary.
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My oncologist writes up the orders so that insurance will cover a yearly DEXA. Some other gals I know on Arimidex have one every two years, but I wanted to stay on top of things closer than that, & my oncologist has honored my wishes to do so.
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Pam, I think Medicare does cover bone density scans. I had one in June. We departed soon afterwards for our summer trip to cooler temps so I haven't really had a chance to discuss the results. I got a call on my cell from the dr.'s nurse and she said I was to take 1500 mg of calcium and 1000 B3 per day. My gyn knows about the bc and the arimidex. Before bc, my bones were in good shape but I was on HRT.
I checked the bottle for my generic Arimidex and it is manufactured in India. I got it at a Walmart pharmacy. I'll bet lots of meds are made in India.
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Thanks NMI, the first Chemo went ok. Now that Zofran is generic, I can take it to ward off the nausea, and maybe I can handle it. The worst is the joint pain so far. But I learned very quickly the third day hex is REALLY TRUE.
Now when someone tells me to rest some every day when taking Chemo, I will believe them.
Thank you all for the discussion boards. You all make me feel human again.
I did have a bad week, but I waited to throw my tantrum until after I got back from MD Anderson and finally got a chance to talk to the Patient Advocate. Now that's the person to have on YOUR side ladies, believe me. She is the one the whole Treatment Team listens to, including your Scheduler, the Onc, the Rad, the BS, the RS, and any other alphabet out there. By the time I got teary-eyed talking to her about having to stay four days in Houston waiting for them to schedule my first Chemo, she was ready to go get the Onc on the phone right then.
Cheered me up right proper like. Said it wasn't right, and she was going to find out what happened and why, and to expect a call from my Onc by Tuesday in the am!Sometimes it does a body good to shed a tear!
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Marie2
You will find this thread worth its weight in gold and the members too. True it is a group we do not want to belong to but believe the ladies that did not make it to this point or who have left us since are our angels. I find my answers and comfort with "my A sisters" ...my doctors have been quite impressed with my "cures" from side effects that I have found here.
Best of luck with radiation...keep a positive attitude and don't be afraid to ask questions. Catch our hugs and I know I speak for all of us when I say we will keep you in our thoughts and prayers.
Teri
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Hugs to all from me too! Ruth
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Wow, I just realized it was 1 year ago this weekend I got my official diagnosis. I had my annual mammogram 7/10/09, a call from dr 7/24 saying I needed to go in for further testing and the earliest they could get me in was 8/24- the longes 4 weeks! Did an U/S on the 24th-scheduled a bx 8/31 Monday. I was supposed to have results by Wednesday 9/2. The nurse called said they weren't in, maybe Thursday, but if not, the center was closed on Friday because of the Labor weekend I would not get them until the following Tuesday. OMG (I already knew I had something, just that feeling and the way everyone was acting-it was just taking soooo long to bring this to a conclusion and I knew nothing about BC at this point. I did not know what kind I had, and kept thinking, as we all do, about my kids! When the nurse called the next day and said the results still were not ready, I too "shed a few tears," she said I'll see if I can get some preliminaray results and call you back. I just could not stand the thought of waiting another 4 days! She got the results, my husband and I when in the center and met with the radiologist, and the rest is history! yes, sometimes tears are very good!!
Beverly-- yay!!! for the patient advocate.
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Rocket: It was me who asked about the numbness. Yes, my hands feel like that when I wake up, but I'm noticing the numbness in the left hand only during the day. I'll be talking more seriously about it to the onc when I see him next week.
Sue
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Patient Advocate, now there's something worth its weight in gold! My best to you Mac, I hope treatment flies by without incident and SEs. Great that you have someone engaged and committed to your good health and how reassuring that must be. Carol, it's interesting that you have been prescribed in particular B3, Niacinamide 1k/d. I just bought "super" B-Complex w/folic acid and C, and B3 is nowhere to be found. Need to look into the benefits of B3, thanks for bringing it to light.
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This site is worth more than gold to me, and I am so very greatful for everyone's input. I do have a couple of questions that may have been answered in older posts that I have not gotten to yet.
One concerning alcohol, I do not drink a lot but do enjoy a glass of wine in the evening or occasionally a martini or two with the girls if and when we go out, is it OK or do I need to avoid any and all alcohol? Also about pain relievers, I have some vicoden left from my surgery if the pain gets too bad can I use one of those to help me sleep (they work wonders on me for sleeping). I loved the suggestion about the apple cider vinegar and checked it out online and it is used to counteracts the effects radiation to the skin. I think I will want to try that, also has anyone used or tried utter cream? I use it now and find it amazing in softening the skin and it really help my scar from surgery, I was wondering if it would help prevent some of the effects of radiation. I was kind of bummed to hear about so many gaining weight...I have been doing weight watchers since Feb and find I am losing a lb per week, I am hoping if I stay on it I can prevent the weight gain. I did not join weight watchers, I just started using their point system and it sure works wonders. Also I am going to enclose a gluten free brownie recipe, I tried it and it is not too bad, although I must admit none of my kids liked it (yippee...more for me lol) anyway if anyone would like to try it here it is.
15oz can black beans (drained) 3 Tbls unsweetened cocoa
4 eggs 1 tsp baking powder
1 ½ C sugar 2 Tbls oil
1 Tbl vanilla
Mix all ing in food processor scraping sides to keep evenly blended. Spray 8X8 pan with nonstick spray.
Bake 350 / 20-40 min. Cool and cut. Can top with powdered sugar or whip cream.
Best of luck to everyone in coping with all our issues and SE's, you are all my new BFF's.
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Wow, a brownie recipe that uses black beans! Just goes to show the overpowering influence of cocoa and sugar!
Julia, Do you think Carole meant D-3? Maybe B-3 is a typo? Taking D-3 is commonly recommended as a supplement,.
Happy Labor Day, hope everyone has a good day.
pam
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Carpal tunnel syndrome is a known side effect of all the AIs. I was having hand numbness in both hands last winter and spring, was off arimidex for 3 weeks after reconstruction (they didn't give it to me in the hospital, then 2 weeks of trying to get my reflux and nausea under control dicatated minimal drugs and food) and the numbness stopped. It hasn't come back yet, either. Of course, it probably will at some point, and then I'll bring it up with my Med Onc, but I'm hoping I'll be able to get 5 years of arimidex in. If it gets too bad I can try changing to one of the others, but now that arimidex is generic, I don't want to switch and start paying more again. Expensive stuff even with a prescription plan!
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Hi Marie,
Here are my thoughts about some of your questions:
1. I don't think you have to avoid alcohol all together, but be very moderate it consumption. For myself, I have maybe 2-4 drinks per month. (I always have a glass of wine when my Book Club meets, for example). If I'm at a wedding or some event where there's a lot of drink opportunities, I limit myself to two drinks for the whole evening and have club soda, water etc. in between.
2. I would say to take whatever works to help you sleep, because you have to sleep to function through this. I took Ambein CR every night during treatment and it made a world of difference in my ability to cope.
3. Check out lotions/oinments with your radiation nurses. Do NOT put any lotions on in the morning before radiation (it will intensify the burn), but I brought a little tube of Aquafor with me and smeared some on in the dressing room right after I was done getting zapped, and again at night (just got red at the end, never any blistering or anything horrible).
4. About the weight; three other friends and myself in my small town are all on anti-hormonals. The one who was skinny going in is still skinny, the one who was plump going in is still plump, and the two of us who have always had to watch out weight carefully still have to watch out weight carefully. If you do the Weight Watchers, which has worked for you, and develop or keep on a good, solid exercise program, you should be fine.
All my best! Ruth
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Hi Marie2, ditto what ruthbru said. Definitely talk with your rad onc/rad staff about what to use on your skin and never before rads - must have clean skin only for that. I have maybe 2 or 3 glasses of wine per week. We can't let this disease totally take over our lives. Stopping alcohol if you are not looking at your total lifestyle will not help. So continue your WW or other eating/nutrition habits, continue/introduce exercise, check out supplements, etc. Interestingly, some people gain during various tx while others lose weight so there is no telling; you may stay consistent or go either way. We are all different. But stay with us as there is lots to learn and many to support you through.
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Hi all, I am visiting from Femara World, having taken 5 pills thus far, every other day. Off A since June 19.
Just to update progress of my numbness in hands and wrists. It is not carpal tunnel, as it was diagnosed arthritis with tendonitis all s/e's from A by the orthopedic surgeon and onc. . Well now it is so bad I cannot even move my wrists, I have to manuver my arms to do the work with my hands. It is like knives cutting my bones. The onc thought it might improve somewhat after leaving A, but no, it has not. This is a terrible way to live. My plastic surgeon suggested pain management due to soreness and stiffness on mast. side, along with the wrist and hand problems which is just no picnic. Is this what we survivors have to go through. Why?????? What is the ingredient that gives us the s/e's. It is totally insane. Shame on the drugmakers.
Okay, I vented to you, back to Femara land.
Hugs,
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Youch!!! If it's an A SE, why didn't it stop when you went off? What exactly is 'pain management'? What do other people (ie people who don't take an anti-hormonal) who have arthritis with tendonitis do for treatment? Have you talked to a doctor who specializes in arthritis? I'd do so, you shouldn't have to live in that much pain and loss of function!!! I'd send you a hug, but I'm afraid it would hurt you
. Hope you can find some better answers. Ruth0 -
Hi Wanda....
Was off doing a cycling/camping weekend with friends, so just responding right now to your question. Yes, I do have a slight metallic taste from A, and like you, I didn't have it before. Doesn't affect my enjoyment of food at all, or my ability to enjoy wine.
I was thrilled to be able to out-cycle my much younger friends, so consider myself recovered. I got good at putting up and taking down tents. We used microbrew to smooth over rough patches and had a blast.
That is, except for the cycling back to the ferry in the pouring rain. Easy though unpacking, as everything was soaked and went directly into the washing machine.
With a hot bath and a glass of wine, I am a new woman. Can't wait for a real bed.
BTW - I am doing all the regular medical tests this month with three month in one month's time. Expecting all to be well.
I can live with the metallic taste. - Claire
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Ronna, I'm so sorry for all the terrible pain and immobility you are experiencing. I think Ruth is right, it sounds like for the time being, it needs to be pain/arthritis management meds. Two years ago when I was first diagnosed with Osteoarthritis, the xray also showed tendonitis and the pain level was 8 and 9. I know what you're saying, it's very difficult to live with such pain. I took every conceivable arthritis supplement and gradually the pain level dropped to an occasional 2 or 3. When I started chemo in March, I stopped all supplements and have not restarted, and now I'm almost 3 months on A and the pain level very minimal. It's hard to say if the supplements did the trick or if the acute episode of tendonitis resolved itself. I hope it works out that way for you. Best wishes.
Carole, is Pam right, is it D3 and not B3? I was all set to stock up on the amazing B3 pill! I'll follow you anywhere, dear girl
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Ruthbru and Julia,
Due to the wrist and hand pain which started as a result of A, Onc. took my off to see if it would subside. Unfortunately it has not. However, pain localized around wrist area, stiffness of fingers subsided. That was why I was off A for almost 2 and 1/2 months. Each morning I would get up and hope pain would be gone. Orthopedic surgeon told me of exercises to do and to take 2 Advil twice a day. I have no idea how people live with severe arthritis. My heart goes out to them.
I don't really know what pain management is, I heard it was shots near area of pain. Onc. had mentioned accupuncture.
I do remember now I had some tendonitis in my hands when I was working and I had to go to physical therapy. Umm, now I have to tell onc that. Now I remember as I am writing of the two EMG tests I took twice due to pain years ago when I was constantly typing. Wow, maybe this just aggrevated an old situation. EMG is a way of testing for carpel tunnell, which is way of testing nerve endings. This I believe I told onc b/c you would never forget this kind of test. Joint Disease is a s/e of A and F, thus probably focusing in on where it was vulnerable...oops, I am rambling.
I wish none of you ever have this kind of pain.
Thank you for your responses and concern.
Hugs,
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I have been on A for about 4 months now and started having pain and numbness in my hands within weeks of starting the drug. I have been wearing wrist braces at night, the type used for carpel tunnel syndrome, and have had very little numbness since. My hands still ache and the ring finger on my left hand does a strange jerking movement every now and then. The ache is annoying but does not interfere with my activities including playing tennis every morning. I also bike a couple of times a week and am more aware of the ache while cycling, but it's not so bad that it prevents me from riding. Has anyone noticed more muscle aches on A? I've been have muscle aches in my calfs, thighs and upper arms. I expected pain in my joints,but not the muscles. Anyone else with these symptoms?
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