Arimidex - Coping with the SE's
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Well, I worked out last night. Trainer had me do a crazy circuit which involved running for 1 1/2 minute intervals. Feet weren't hurting and my neck is feeling ok this morning. Still a little sore but not that steel pipe stuck in my neck feeling. Don't know if it's the Claritin or if I just happened to have a good day but so far so good.
Michelle
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WHOA - you mean you might be STARTING Arimidex without having a BASE LINE BONE DENSITY TEST???
So, how can you tell if the Arimidex is effecting your bone density, without a BASE LINE BONE DENSITY TEST?
Something not right here.....PLEASE CHECK. It's pretty much SOC for a woman starting an AI to have a bone density test. Then every 2 years.
GOOD LUCK.
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I second Sunflower on this. Get a Bone Density Test done first. My Dr. also says every two years after the first.
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Some MOs do not do baseline bone density testing before starting an AI. Mine didn't. I got one after 2 years on arimidex and will probably get one again this year (year 4 if I'm counting right). A lot of this depends on the area you are in and the doctor you see.
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Perhaps Schatzi has had a bone density test within the last two years that can be used as her baseline? My last one was a little under 2 years ago, so my MO had me do another one as my pre-AI baseline. I too thought it was SOC.
About the Oncotype: they use a tissue sample from your tumor and I think I had to sign release papers before they sent it in. My score was also a 19, and like you, Susan, opted for chemo so I would have no regrets. I had one positive node also, but it was a difficult decision.
Another symptom - dry eyes - that wasn't bad enough to worry about, but when Kitty mentioned it, I realized it is one of my SE's. I learn so much from you ladies, thanks!!!!
I have to see my RO tomorrow, my radiated breast has been red and slightly swollen, she thinks it may be an infection. It makes me think that I am probably overdoing it with my activity level, trying to catch up for all those months on the couch. Wish me luck! And patience to slow down a little.
Barb
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At my request my oncologist orders a bone density every year. If the numbers start to slide, I want to know right away!
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Barby and Sunflowers
I had a BD test decades ago....was low normal then I had some cockamamie thing on the wrist that my pharmacist wanted to do as a public service thing. She said then it was OK but not to forget a real BD test. I intend to get one since I have been on Arimidex for 3 months now.
My MO seems to have washed his hands of me until I see him in October LOL
While I was waiting to see the hematologist today, I had a chance to see my records...MO's report said I was HER2 negative but at the end of the letter he says "she is to continue on Herceptin"....................jeez I was NEVER on it...I wonder if he meant Heparin? I have been taking Fragmin shots for 6 months but done now.
For sure everyone needs to be proactive concerning their health....
Did anyone see Suzanne Somers the other day telling women it's dangerous to have mammos?
She is pushing estrogen for all women...wonder what her BC was regarding ER/PR etc?
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Schatzi14 - you should read up on Herceptin unless I am wrong, I belive it doesn't work unless you are Her2 positive. Ginger M.
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ginger....
Right ...that was my point...he made a mistake...think he meant to say Heparin...a blood thinner.
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I started taking the Claritin this morning. I do feel less pain today, but the real test will come on a day when it threatens to rain. I am also terribly upset about my cholesterol. It used to be 180 two years ago prior to BC. I don't even eat much meat and rarely an egg. I also take flush free niacin three times daily. My cholesterol is 250! My doctor doesn't think I need medication for it yet as my HDL (good cholesterol) is high enough to offset the LDL. I'm still upset though.
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Rocket, I can SO understand your concern. Mine went to 233 when I stopped Niacin, and even tho it pushed me into "prediabetes" I started it again. Just freaks me out to be above 200. MY doc said same thing, as the HDL is about 75, was a little higher, and triglycerides are very low, about 60? They were 35 with Niacin.
Anyhow, I think we are just conditioned to FREAK OUT when it goes above 200. BUT, and I think this is important for all of us taking AI's - we KNOW that a SE is raised cholesterol, so I guess on balance, we shouldn't be as concerned by that "old" 200 number.
My HDL - I think the following conribute to it's being high: ALMONDS, 1/3 a cup a day ( I know, calories, well, heck, they're my 3 little "snacks" a day to try to also keep my blood sugar level.
Olive oil, lots of it, also sometimes coconut oil, FISH OIL ( Nordic Natural, tablespoon a day) and all those other supplements also with mega multi vitamin. My food, diet, isn't too varied, so I confess I do depend on vitamins to get what I need.
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Oh... I see Schatzi.
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Been on Arimidex since 12-2010. My hot flashes haven't been any worse than before the meds..ha-ha. Oh menopause! Anyway, the biggest problem is the finger joint swelling and pain. Am now diagnosed with arthritis and having surgery for trigger thumb end of the month. I use ice and heat and finger exercises. Also, general fatigue and weakness. I was always a walker and bicycle rider and still am, just taking a little easier.
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MarlaB, Good luck with your trigger thumb surgery. I had it done on my left thumb five years ago. You will be fine once the stitches come out. Joint pain in my fingers is an annoying AI side effect for me, too, especially when I first awaken in the morning. My cholesterol is higher, too, and my HDL/LDL ratio is getting worse. The SE's I dislike the worst are depression and insomnia. Of course, the SE I like the best is not having a BC recurrence.
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spunkyboobster, I've been on Arimidex for 7 months now and last month my neck and upper back started hurting. It was pretty intense for a week with spasms and knots but now I just have "spells." I go to the MO next week so I'll mention it, although he already told me in January the bones and muscle aches might be a cause for a switch in medications even though I felt fine at that point. I really want to stay with what I'm on and stick it out if I can. Other than that, I've had hot flashes and night sweats and my legs ache after doing not much of anything. I've been working in the yard non-stop since Sunday so right now they feel like they're broken (!), more extreme than when I wasn't on the medication, but they feel better than yesterday so that's a good sign. All in all, there's nothing I can't live with...yet.
I didn't have a baseline bone density test either, another thing I'll bring up next week. I've been tested for everything else under the sun so there must be a good reason for its exclusion, even though I can't think of anything...
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Hi, ladies. I started Arimidex yesterday. I'd been having hot flashes and occasional night sweats anyway, since I had to go cold-turkey on the hormone replacement drugs I was taking before my BC diagnosis six months ago.
But last night was awful. I had such bad night sweats that I had to get up at both 1 am and 4 am to dry off and change my nightclothes. I was only wearing panties and a tank top the first time and then switched to an all-cotton nightshirt. Even the sheets were damp.
Do you think that I'll have to face this every night I'm on Arimidex???
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No, your body will adjust. For now, get a big, high powered fan and sleep with it blowing directly on you.
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I'm assuming the hot flashes are a result of diminishing estrogen? When I went through menopause (many years ago) I WANTED hot flashed because I'm always cold, but I only had about 3 of them....figures! Anyway, since I had so few with menopause, am I likely to have few with Arimidex? I certainly didn't mind the few I had naturally.
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Snoopsmom, when I went through natural menopause, I had very few and quite mlld hot flashes. But the ones I've had since stopping the HRT have been much more frequent and severe.
Ruthbru, thank you for the reassurance that my body eventually will adjust. Whew!!!
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Interesting article on how Arimidex is the biggest step forward in 20 years for progress with treating bc:
http://www.dailymail.co.uk/health/article-115350/Breast-cancer-drug-best-20-years.html
Good news for all of you on Arimidex. The article states that Arimidex is working 23% better than does Tamoxifen. There are new rays of hope for us all every day
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Here are some snippets from lizzymack's link:
A powerful new breast cancer drug has produced dramatic results. It greatly improves the chances of surviving the disease and could save thousands of lives. Research findings... suggest that Arimidex could prevent three quarters of them from suffering a relapse.
The latest research findings, from the largest cancer trial ever undertaken, show that post-menopausal women who took Arimidex daily for two and a half years after surgery were 77 percent less likely to develop cancer in the unaffected breast.
Dr Jeffrey Tobias of University-College Hospital, London, who is one of the trial investigators, called the results 'exceptional'. 'The reduction in the development of new cancers was very much greater than we had anticipated,' he said.
Arimidex was also found to be more likely to prevent cancer recurring in the same breast or elsewhere in the body after surgery. Overall, women taking the new drug were about 20 per cent less likely to suffer any sort of relapse.
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ruthbru
That is sure reassuring...thanks for the info
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Thanks lizzymack and ruthbru. That is encouraging.
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Wow! That is great. I am almost done. Doc gave me an extra month. I may just take it. So five years and one month. It is almost gone. Done. Yes. But maybe well worth it.
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I've only been on Arimidex for about 3.5 months but have decided to take a vacation for 10 weeks while on a motorcycle vacation out west. I must be alert and I must sleep in order to not kill myself riding in the Rockies. Honestly, I've been looking forward to this first post-retirement trip for so long, I just want to enjoy it. Am I crazy?
Started Claritin this week and my hips don't really feel much better. Seeing the chiropractor on Wednesday. 5 years ago he did xrays that showed the beginnings of arthritis in this area s maybe it's just that. I can't remember if the hip pain started with the Arimidex or before so the vacation will help me get a handle on what is and and what isn't SE. I'll pay more attention this time.
Other than the hip pain, being a bit tired, night sweats, a couple of hot flashes a day and insomnia that's all of the negatives. Can I expect more SEs to show up in the coming months and years?
Oh yeah, the MO gave me Effexor for the night sweats. Talk about not sleeping, I lasted less than a week on those, They helped the sweats some but you gotta sleep. Anyone have any natural solutions to the sweats? Never been a good sleeper and I have a neurological problem that seriously impacts my sleep. I take a handful of drugs for THAT every night. Other than that I'm really healthy.
So, I'll go back on AI when I get back in August but I suspect i'll end up doing this again next year when another bike trip will take me to northern CA for 1.5 months. Am I playing russian roulet here?
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I'm eager to hear about any solutions to the sleepless, night-soaked nights., too. I haven't been able to sleep well since my DX seven months ago, when the doctor told me to stop my hormone replacement therapy immediately. I rotate my nightly pill regimen to try to sleep: melatonin one night (usually doesn't work so well; 900 mg of Neurotin the next night; and then Ativan, which works best but which I can't take too frequently, my docs say. Now, with Arimidex, sleeping is even more of a problem.
I can't take Ambien.
Anyone else having luck with sleeping??
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Went to the MO,told him about the Arimi SE,he says no way that Arimi could cause those things,all he ever heard was hot flashes and body aches, I told him any American women near age 50 has hot flashes and body aches,that has nothing to do with Arimi! I told him my tongue swoll up and I couldnt breathe,he says oh your allergic and stop taking it, unlikely that the small cancer will return. Huh?? Say what? No alternative drug?! Just exams every 3 months? If its not important,then why give it to me in the first place? Maybe I should crush the tablets and sprinkle on my carpet to get rid of fleas...I showed him the stuff my gen phys had to give me for high bld prz and mouth sores. I still have severely chapped lips after a mth off the stuff. Today I can see 2 nodules under my skin on my thyroid and he didnt say Jack about that! I need a new MO??
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Wave whisper and other sleep deprived: I had a terrible time sleeping after stopping HER.... my primary gave me Prozac for the mood swings and that may be a contributor.....but I was trying Tylenol, Sleep-eeze, and hated using either. My DH saw a Dr. oz episode on May 4th while I was getting a bone scan and had me try his proposed method of laying down with your feet high against a wall (or headboard) , arms out and relax in this position for at least 10 minutes immediately before you get under the covers to sleep. I know it sounds crazy....but it has worked for me! It has something to do with the blood flow. The first two nights of undrugged sleep!!
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Chachamom...oh boy am I ever gonna try that!!! Thanks for the tip!
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Will try it tonight....wonder what DH will think is going on
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