Arimidex - Coping with the SE's
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I have been told by my onc that women on AI's with osteopenia are insurance eligible for infusions of the bisphosphinate drugs twice per year. I live in MA however, and do not know if this is insurance related to this state.
Susie123 I too have notice more SE after one+ year of being on the A :>( I would consider asking your onc to try a different AI (or even Tamoxifen) to see if the SE are any different.
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Has anyone checked out the better bones supplement program on the Women to Women web site? I have a history of osteoporosis before starting the Arimidex (I see the onc tomorrow) and wondering if I should invest in a full supplement package ($85/mon) I don't know about you guys, but I get confused about which supplements and how much to take (especially vit D and calcium as well as all the rest) especially given the full assault on my estrogen and extra stress etc. Has anyone actually had their Onc address issues of diet, exercise and supplements or are we on our own?
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I've decided to stop the Arimidex. I see the onco next week and am going to ask for an alternative. My 18 year old son told me last night "mom, I'd rather live 5 good years than 20 bad ones". I've made peace with the fact that he's right.
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Susie,
I sent you a private message.
Pam
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Susie: What is "good" years and for whom? Unfortunately, my family still needs the many things I do so they can survive and what might be "good" years for me could end up being very horrible years for them if I were not here to help them. My DD is my main concern because she is trying to cope with a chronic condition of her own. She has made it clear to me that my being here gives "her" the courage to keep going. So how can I be selfish enough to take away from her the help she needs from me? Yesterday, was the worse day in 7 years on Arimidex I have had with depression. Usually I can knock it off by programming myself I have to continue so I can get things done. However, I was in a bad place yesterday and my body is beginning to show a low of pain now. I spend hours daily on the heating pad.
I will have to see if my Onc will be able to give me some help or seriously think about stopping the Arimidex. I am not concerned about quality of life but I do not want to wake up one day and find out my bones and mine are seriously damaged by continuing on with the Arimidex. I can't take the IV infusions to protect my bones. I have stomach problems and it causes me intense pain! So I am in a pickle and it's getting sourer by the minute. However, if your son feels ok with your decision, you should do what is best for you and your family, imo. It frightens my DD when I tell her I may have to stop the Arimidex so I am in a different place than you are.
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Hi Susie, what, if any, supplements have you been taking to offset the se's? Did your med onc never, in the year, suggest anything to alleviate the joint issues and depression? Perhaps the supplements are not working and you need to try some others? I know that many of our oncs are clueless and blow us off when we mention difficulties. You will get all the support here for whatever decision you come to as we have all found out that tx for this disease is definitely personal and different for each of us. It's nice to see your son is concerned about you as well.
I fully understand your son's comment but just wish to have everyone consider that the 5 good years off A should be compared to 5-6 bad years on it (I added an extra year for se's to subside after stopping), not really 5 good vs '20' bad. So when 2016 comes, we can hope that we will be way beyond even thinking of BC.
HUGS.
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Quick question...
Are there different dosages of Arimidex (Anastrozol) or is it the same dose for everyone?
Thanks!
Tori
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Arimidex comes in 1 mg tablets, everyone gets the same dose.
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The dose-finding studies that were done with Arimidex in the 1990's showed that anything less than 1 mg per day did not produce consistent results. Some women on the lower doses (less than 1 mg) had estradiol levels that were considered too high, compared to women taking 1 mg or higher doses. OTOH, 1 mg suppressed estradiol just as well as 2 mg, 5 mg, 10 mg, etc; so taking more than 1 mg per day was considered unnecessary.
Those were early, preclinical studies. A recent clinical trial showed that AI's don't work quite as well in women who are overweight (BMI > 30 I think). Now, people are wondering whether some women should be taking more than 1 mg per day after all. As far as I know, there haven't been any new dose-finding studies to prove that. So, as NativeMainer says, everybody takes the same dose: 1 mg per day.
otter
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If I can be alive and not dealing with cancer; and can see my son graduate from college, maybe see him get married, have grandchildren to know and love and teach and learn things from, if I can travel and spend time with friends and family, if I can walk by the ocean and smell the rain and plant flowers and eat fresh fruit from my garden.......then they will be very good years to me.
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Thanks for the info otter. I know many of us have been wondering.0
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Otter, Do you know if they found the same results for Femara? ( I am currently on femara, but may be making the switch to arimidex now that it is available in generic form. I haven't decided what to do yet, so I was just wondering if femara studies showed the same thing about lower doses???)
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I've been on anastrazole for 2 months and just came back from my GP. My cholesterol was elevated 30 points (237) but the good cholesterol was up, too, so he was not concerned. My WBC's were low, so I'm concerned, but he didn't seem to be. My VitD was good, and I've been supplementing with 1000 mg/day. No SE's that are worth stopping it I guess!
I'm flying to DC today with my silicone foob for the first time. Hoping to not get pulled out of line! Wish me luck.
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I flew out of MCO in December. I was all worked up over the x-ray scan and not wanting it. Thought a pat-down/feel up was inevitable. But did not have to do either. Just put in a glass box while they swabbed my hands looking for explosives residues. I did not have any.
Hopefully you will not be singled out for a serious search. Good luck!0 -
In DC, was not declared the Boob Bomber or anything! Went through the body scanner I think as I had to stand spread eagle and put my arms over my head. No one said anything about the foob I was wearing or the one that was in my carryon! Excellent!
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So... does that mean the TSA is now aware of and sensitive to women who have prosthetic breasts OR does it mean that they just didn't notice or care? Either way, I'm glad you made it through!
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Maybe after the flap in November they have ratcheted it down a notch. I am traveling with my 21 year old son, so I warned him there could be a problem and that he should go through another line if he would be embarrassed but he was right behind me ready to help if needed. Luckily, there wasn't anything to worry about. Hoping for an uneventful return trip on Sunday.
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Just curious if any of you ladies taking Arimidex were initially started on Femara. I have been taking Femara since May, 2010. My side effects from the Femara are very painful. My left hip hurts every day and feels like it is "out of joint," and now my thumbs are so painful. The thumb joint pops with movement. I am 63 and feel much older. Onc prescribed Effexor for sleep & hot flashes, but nothing eases the joint pain.
Would a switch from Femara to Arimidex possibly make a difference in the joint pain? I've read your comments here and sounds like Arimidex also has its SE's.
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emegram--all the AI's list joint pain as a side effect, but, for reasons yet unknown to science, some women do better on one than another of the AIs. Many women are switched from the first one they try to one of the others because of joint pain and find that helps. It is possible that you will have less joint pain on Arimidex than you do on Femara. It's worth a try.
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Seems to be a popular topic. Although, it's going to take me some time to read all 62 pages of it. So, for now, I will just say that I have been on Arimadex since the day after Thanksgiving. Not a problem with hot flashes or anything else that I'm aware of, except the joint pain. If I sit for too long I feel like I'm about 80 (true age 53). Sleeping is the worst. Wake myself up every time I try to move. And, walk like a robot to the bathroom until I unstiffen. The fingers and toes are the worst at night. Can't make a fist or curl my toes for a few minutes after waking up.
I did read the first page of comments and will look into the gluten/sugar free thing. Although, that's going to be tough. I need the sweet stuff. I've been trying to exercise, but can't "pass" the cancer program at the gym. They put me on the cardio program, but until at least next week after a stress test I'm banned from that, too. And, walking any distance right not is just putting me out of breath. But, I'm trying.
I'll be back to read more about this as it's my major problem issue right now.
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emegram
I was started on Arimidex 4 years ago, I think just because it was the most used one at the time - more of a history. The situation with your thumbs sounds like "trigger thumb" - I had it in the very beginning of using Arimidex - and did several things which REALLY HELPED. The first thing was to see a Massage Therapist, who did training with Tracy Walton (Boston, MA) to treat cancer survivors. I know Tracy Walton has trained women who are now working in many states. The massage made the greatest difference for me. I still go once a month. Heavenly.
1) Physical therapy with a person who specialized in "hands." She treated me, and gave me exercises to do several times a day.
2) I wore wrist splints to sleep every night, and sometimes during the day if the pain was very bad.
3) Increased my Vitamin D3, multi vitamin, calcium/magnesium, and glucosamine chondroitin.
4) Acupuncture
5) Stopped eating all gluten. Made a tremendous difference in my overall feeling of well being. Think this was the step for me that was hardest, but worth the effort.
I went from taking about 10 ibuprofen (spelling?) a day to none!
Hope some of these may work for you too.
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Patty9999, take it easy. Your body is still recovering so don't try and do things too soon. A little at a time until you build up, as long as you move a little you will find it will get easier over time.
Caerus, such good information. I really want to get off of the gluten but it's soooooo hard. Takes lots of motivation, which I have little of. I also wore the wrist splint nights and days too for several months. Really helped and now it's very rare that I have to put one on. And it is time for me to treat myself again to a massage! I am on 3 ibuprofen before bed, sometimes one of them is a PM to assure sleep. I've gotten back on track with my Vit D3 but need to get more regular with my calcium, magnesium, glucosamine/chondroitin. All of them do help - I just get tired of downing pills.
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Patoo,
It took me a while to get used to being gluten free. I CRAVED Trader Joe's Three Seed and Honey bread ( toasted, with honey on top!) - so I started using the Brown Rice bread TJ's sold - it is DENSE - I gave a loaf to a friend who has got celiac disease, and she smiled and said :"Thanks for the door stop!" But, again, it was good toasted, and a nice vehicle for cinnamon & honey. THEN, I finally decided to try to deal with the "You have to lose weight" edict of my wonderful oncologist - so I gradually stopped eating all bread. And now, sometimes if I feel like a "sandwich" - I use CrunchMaster Multi Grain crackers( the GLUTEN FREE ones I get at Costco) and make little bite sized "sandwiches." I'm not a fuzzy eater, rarely eat in restaurants, so it's pretty easy for me to control what I eat.
Just a few weeks ago, I said "goodbye" to one of my daily standards - soft goat cheese. Within a few days I noticed a tremendous difference - no more clogged nose, which I was attributing to allergies, I'm not a great duster. A few days ago, stopped needing Breathe Right strips to sleep. JOY! Sleeping.
I'm learning, more and more, how much the foods we eat effect our bodies. Fair warning tho: don't get between me and a lump of cheese for the next few weeks ;-)))
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Caerus: Thank you for taking time to list ways you have coped with the pain in your hands. I would never have thought about a physical therapist specializing in hands. And a massage would also be wonderful. I have been taking Ibuprofen PMs before bed which does help me sleep.
I also know you have valid points with your thoughts on the foods we eat. I am considering the gluten-free diet, and I know it will be difficult for me. Bread is a staple at our house, and we do love baked goods. But if it would make a difference in my joint pain, it would be worth the sacrifice. Also, since taking the Femara my weight is creeping up the scale.
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Bread is one of my favorite comfort foods....would be hard for me to give it up......other items with flour not so hard.....
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Here is something cool from the Time Magazine about why dark chocolate (at least 70% cocoa) improves your overall cholesterol levels; Japanese investigators have found that polyphenols in the cocoa attach to the genes in the liver and intestines, activating the ones that produce HDL, the good cholesterol, as well those that help suppress the LDL, the bad cholesterol.
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ruthbru, That gives me a reason to love my chocolate.
I just wish I would stop gaining weight since starting Femara I have put on 5 pounds.
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Emegram
I don't know if you are a "baker" - but there is a wonderful paperback book Gluten-Free Baking Classics by Annalise Roberts. I get my gluen-free flour in bulk at a local Food Co-op. It's not "guaranteed" to be gluten-free ( important information for those with celiac disease) because it's a combnation of several flours, all made in the same "factory" so it could be "tainted" with gluten - but it is SO much less expensive than the prepackaged gluten free flours that it's what I use.
Ruthbru - I thought of you the other day, in that Food Co-op, when I saw organic cocoa beans! I bought some to make hot cocoa - by grinding them in an unused coffee grinder I have. Surprise, I've been "nibbling" at the pieces - it is PURE cocoa, which means absolutely no sweetness, just chocolate. 100% cocoa - very interesting taste. For cocoa, I grind them in the little coffee grinder, add to a cup of boiled water ( I'm lactose intolerant, haven't used milk in years) add some Agave, and a dollop of marshmallow fluff - heaven! And as it's snowing again ( still) very cheering.
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Sometimes I buy 100% baking chocolate and then eat it with one of my carmel calcium chews; quite tasty as far as 'medicine' goes. It's snowing here too...but not making anyone feel cheery as we are worried about FLOODING in the spring!
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Hello there,
new to the club, was diagnosed last month, still debating my treatment options,
Arimidex VS Tamoxifen. As I am right in the middle of menopause, my onc suggested, inducing menopause thru drugs and having the option of going on Arimidex,
anysuggestions?
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