Arimidex
Comments
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Ok .... today I hate arimidex....my joints hurt and my legs are sore and I know it is from the arimidex. I never felt like this before.... I'll be better tomorrow.
Balsie~
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While we are asking questions:
you know how we are told our breast cancer tumors are there for years (like 10 maybe) before they get big enough to show up on mammogram? So does that mean a second breast cancer tumor, seeded from the original, would take that long to show up? What about mets to other parts of the body? How long does a rogue cancer cell take to invade (bone - liver - lung) and show up as a metastasis? I have read that a a lot of "new" mets were probably = possibly present from initial discovery of the breast cancer, just not discovered initially. So, if you did not start out with a met, how long does it take for the cancer cells to get established?
Just wondering....
pam
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Jo,
Being 62 at diagnosis, I am just wondering if, hoping I can manage to die from something else before a recurrence happens. :-) There was a big Danish study in which many older women who died of various other diseases were autopsied. MANY showed undiagnosed breast cancers. Would never have known they were there. I'm for that.
Everybody stay warm. It is even cold in Florida!
pam
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I can only answer from personal experience. In 1996, I had a complete mastectomy followed by chemo. After 13 years , I thought I was doing great~~~ only to find a lump, same side , same location as one of my previous tumors. Just have to wonder how long it was growing. I only found it when my implant which was getting pretty old "shifted" a bit. At the time I found it , my doc said not to worry. "nothing evil" . He thought it was some scar tissue from an old port site. Luckily I wasn't as confident and I asked to have it removed. Turned out to be cancer- same type as last time.. Even with a mastectomy , there was enough tissue left behind .. and the tumor grew... I am now undergoing radiation. finish up 28 tx plus 5 boosts next week and then it is on to Arimidex!!! I just want to go back to the confidence level I had before this second diagnosis. At least they are only calling it a local chest wall recurrence - as of now ~~no mets!! iI hope that is how the news continues!!!
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I took it as 1 1/2 years too. Can you imagine the SE's on 1 1/2 pills. One pill does enough damage! Fingers are stiff and my knee joints hurt. Have trouble getting up and down especially if I have to get on the floor. Old age might have something to do with it too. Go for bloodwork results today. Every 3 months for check.
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Hi Arimidexans!
Does anyone feel like the drug is having more effect on muscles than on joints? I have been introspecting my physical complaints and have come to the conclusion that my stiffness, lack of flexibility, seems more related to tight and weaker (is that possible?) muscles. Yes, it is hard for me to get up from a chair but I've decided it is lack of strength in thigh muscles than hips or knees. My hands are not strong but my joints don't really hurt.I don't seem to have any abdomenal power... heaven forbid I should try a sit-up! I exercise... walk 2-3 miles a day and lift weights... but don't seem to gain any strength. Is it just me? I can do most anything I used to BUT have to be smarter about lifting, carrying, etc. The power is just not there. I've started a multi vitamin. Eat good. Clean living. Positive attitude. What else is there?
pam
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sunflowers,
I am sorry for your discomfort but find some comfort myself in not feeling alone in my symptoms. I am 63 so it is easy for others to say "well, you are getting older" but I feel this change is fairly sudden. My legs were always so strong... not any more! On the other hand, I can walk for 1 1/2 hrs with minimal tiredness so the endurance is still there, thank goodness.
Wishing us both well,
pam
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'They' say that however long you were in 'active treatment', plan that it will be at least that long again to get back to anywhere near 'normal' physically; I'd at least double that amount of time. But keep moving, exercising, lifting some light weights; and after awhile push yourself to do a little more. You CAN reclaim your body!
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I think you're right, Jo. We're all the lab animals in a gigantic Arimidex study. Years from now there will be some reliable data on how long to take it, how well it works to prevent recurrence or new primary, etc.
I MISS MY HORMONES, TOO!!!!! There. I feel better.
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Carole,
Glad you did not call us lab rats :-) I prefer to think of myself as a lab rabbit. Maybe this is our little contribution to the next generation.
pam
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I'm thinking it won't be years from now. I know they had already done a 5 year study before I went on it in 2007; so I bet there should be some new data soon.
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Just got my supply from my new mail order prescription place and the 90 days of Arimidex came in a generic pharmacy bottle. I know someone mentioned a while back that they were starting to get their pills in generic bottle and not the Astra Zeneca container. This may be a good sign. It also gives the generic name on the bottle. Another good sign?? I hope.
Is anyone else dealing with rapid weight gain and stubborn inability to take it off even with stepped up exercise? I am at my wit's end.
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Wow, Bobcat... you are giving us hope for a generic version! Interesting thing happened to me about my RX which I fill at CVS, usually the last few days of the month: A couple days ago the phone rang. It was the pharmacist. My RX was ready. I said well, this is kind of early to refill it and usually I get an automated call, not a personal call from a licensed pharmacist. She just wanted to be sure I wanted it ????? Like I would not? I said yes, but I won't be in to pick it up until the end of the month, LIKE USUAL. She said okay, we'll hold it for you. Strange.
At $388.00 I can't just pay for it with extra change. :-(
pam
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bobcat, did you notice a difference in the price, the generic should be cheaper. I sure hope so... I have to worry about the famous donut hole this year. Turned 65 and on medicare and part d prescriptions, so I should hit the donut hole by may or june. It is going to be a long end of the year if I have to pay full price for 6 months or so ugggh. I will have to refill next week and I will be sure to ask the pharmacy if a generic is available.. you would think they would tell you automatically when a generic becomes available, but I will be sure to tell them anyway. Sharon
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Sharon - I didn't get the generic but they did reference the generic name along with Arimidex on the label. Pam - I'm sure that pharmacist called you because they want to make sure they're getting the $388!! That is so outrageous. I do know that my CVS won't fill a 90 day prescription for anything. They'll break it up into 30 day supply and charge as an individual script each month. They tried this for my bp meds - wanted to charge me $5 for 30 days so I went to Wegmans and they filled the 90 day script for $10. I'm not too pleased with CVS anymore because of this practice. You might want to check around at other pharmacies and see if they would give you a cheaper price for 90 day supply. Just a thought. My mail order price for Arimidex was $70 for 90 days but then again I pay over $900 a month for my insurance now. Ughhhh..... At least I've already reached my deductible for this year.
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Hi ladies, this is off the Arimidex topic but, as this is one of my two favorite posts, I wanted to share a great website I found. I'm sure you all know that we should be wearing medical alert bracelets, so that nobody accidentally puts a needle or IV in our affected arm. I have bracelet, but never wear it, I feel like it is saying "Hey world, something is wrong with me
." Well check out, http://www.creativemedicalid.com/ for BEAUTIFUL bracelets that absolutely are really nice jewelry with a charm that displays your medical info; designed by you to say what you want. (Check out their engraving help page for wording suggestions. I'm also allergic to penicillin and was able to squeeze that in too on one charm). I ordered one, and they are so cute, I might order another. Here is my new motto, "When life hands you a lemon, accessorize with it!" 0 -
Roxy42. I started on Arimidex in November of 2009. The hot flashes have been very tolerable however the joint pain has been my biggest problem . It feels like I have the flu everyday. I too have had problems with sleeping at night and I take my Arimidex in the morning-didn't see much difference taking it at night.I have yet to see my oncologist since the initial visit. Does anyone have any ideas on how to cope with the joint and muscle pain ? It really sucks and I would not consider myself a whiner.
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Jo, I am rather new to this what do you mean when you refer to 'thread'? Is there a website I can visit? I really want to continue with the medicine however I don't want to feel this way. I am very active Ride horses, boating, fishing, camping, 4-wheeling. This really puts a damper on things. And I hate to whine!!!
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Cyndi10,
A "thread" is a topic of interest, like this thread is called Arimidex. There are other threads dealing with Arimidex with varied titles.
In the left segment of the black bar just lower than the top of the page it says FORUM INDEX. Click on that black segment. Now a menu will drop down. Scroll down to TESTS, TREATMENT AND SIDE EFFECTS. Click on that line. A new list or menu will drop down. Scroll down to HORMONAL THERAPY - BEFORE, DURING AND AFTER. Click on that and another list will appear. Scroll down and you will find a few different references to Arimidex that you should find helpful.
Good luck.
pam
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Cyndi - I to have the joint pain. My ONC sugest that I take 3 ibuprofen in the morning and 3 at night. Also to do some exercise such as walking and that will limber you up, Some on here even take black cherry juice. ( By the way how is that going?) It will get better but it takes time. I've been on it since Jan '09. My fingers hurt and I'm trying to get back into x-stitching and it hurts at time. Everyone have a good week.
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Ruthbru - what is suppose to be on the bracelet? My ONC does agree we should be wearing it. If they use the wrong arm it could cause more damage to us. Thanks for bringing this to our attention.
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I have a question - what if you have been in menopause for 9 years, then start the Arimidex. Are the SE such as hot flashes, fatigue, aches and pains as bad as those who are just starting menopause? I am due to start Arimidex in a week or so. Thanks.
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Thanks for the response! Thet docs dx'd the heart failure as chemo induced because of the Adrimycin(sp?) and the fact I had six rounds. I had no prior heart related illness. When I was first dx'd my heart was pumping at 15% capacity. ( i.e. EF (ejection fraction)15%, normal is 60 to 65%). CHF from chemo is rare and it can show up many years after.
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Read a lot of posts have not been on for awhile.As usual all very informative .TY for sight for medic alert bracelet. This has always been an unspoken bone of contention for me with my BC surgeon.After my mastectomy my tough ,,though wonderful doctor,,, came to my bed and looked at sign over bed that said not to use right arm for blood draw or BP. I had had a mastectomy and 3 nodes removed for sentinel node biopsy.3 weeks before prior to my lumpectomy...She asked who put that up there ??take in down ,,I did not order it...Same doctor did my colonoscopy last year and the nurses asked about right arm use She said it was okay to use it NOW I have taken action to prevent the risk by not using that arm for anything! My cousin doc gave me flu shot in that arm I had forgotten!!! I said please put it on my chart never to use it ,,NOW the last time I went back to my BC surgeon the nurse asked which side to do BP in > I am going next week to see her ..reg 4 months check up but I just dont want to get INTO it !! If I buy a bracelet ..she will see it and know I have chosen this on my own. Open to any and all comments! PS HA Had menopause in my 50's ,,,prior to HRT had depression and hotflashes ,,,THIS time and NOW age 70 no depression but hotflashes much worse! I am so proud of me I took a walk today for 1/2 hour Cold winter gave me an excuse.. I now admit it I am out of shape and am going to do something about it...!
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I've been on Arimidex over a year now, the joint pain was so bad at first the ONC switched me Femara for a couple of months and then back to Arimidex, The joint pain has not been as bad this time but it seems to travel to different joints, Does not bother me as muchif I'mup and moving around only when I set or lay down for awhile. I also have the sleep problems, my hair is now thin and lifeless, my eyelashes never came back, the hair on my leggs is so fine I have to use my husbands electric razor (he doesn't mind) I take an Aleve now an then for the joint pain and a sleeping aid now and then. The whole BC thing stinks, and you do have to monitor and investigate your own health and make decissions that are best for you.
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Due to Arimidex I have baby size labia, LOL. I can't believe how much estrogen is suck out of my body. I wonder if I have any left.
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Joy, on the website I sent out, they recommend you put your first name, then NO IV, BP, NEEDLES IN RIGHT (or LEFT) ARM, then their example had phone #, instead of the phone number I squeezed in PNC ALLERGY, since I am allergic to penicillin. Glad I could put it all on one cure bracelet. ALWAYS remember to request them to use your unaffected arm, and thank them when they do. I think medical personnel are very unaware of the potential for LE we face for the rest of our lives
, and it is one of our 'duties' to nicely, but firmly, keep pointing it out to them. I think the biggest thing you can do to overcome the 'creakiness' is to just keep moving! Night All! Ruth0 -
opps, should have said CUTE bracelet instead of CURE (freudian slip, no doubt).
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karenmarie, I was 5 years into menopause when I was dx'd with BC. I had surgery plus 4 rounds of Taxotere & Cytoxan, and I've been on Arimidex for 20+ months. I am pretty sure my hot flashes etc. were worse during natural menopause than they've been on Arimidex. The aches and pains are worse now, but I'm a few years older so maybe that would have happened anyway. I started a thread on this forum a long time ago, asking the same question you asked: Are the SE's of aromatase inhibitors less severe for women who have already gone through menopause? I can't find the thread -- it is deeply buried -- but IIRC the majority of women (not all) had the same experience I had. I've also read since then that AI SE's are more severe for younger women who enter menopause suddenly, from surgery or ovarian suppression.
lakewoman, your surgeon is the type of arrogant, defensive doc I might have fired. It is true that the risk of LE is lower if we've had fewer nodes removed -- especially when a sentinal node biopsy is compared to a full axillary dissection. My breast surgeon (a surgical onco) said my risk of LE was "very low" -- she quoted around 5% -- with 3 nodes removed. Even so, I went ahead and developed a mild case of LE anyway. (I always seem to win those lotteries.) My LE is transient; it was dx'd as "Stage 0" by the very-qualified LE therapist to whom I was referred by my surgeon. Even though my surgeon considered me to be at low risk, she didn't hesitate to send me for an evaluation and LE therapy once I pointed out the subtle swelling and discomfort in my hand and forearm. And, in contrast to your situation, my surgeon was the one who ordered the big sign with bold letters to be put up over the head of my bed in my hospital room: "NO BP's, BLOOD DRAWS OR NEEDLE STICKS ON LEFT SIDE!". The nurses told me she does that with all her BC patients.
otter
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I had a hysterectomy in 1990 and was on HRT before that because of problems with menopause. I couldn't sleep and had terrible hot flashes. So now my estrogen is gone and I've been on Arimidex for a year. (Four more to go) I still have hot flashes in the evening about 7:00 PM. I take Effexor 25mg about 9:00 PM. I thought maybe it would help me sleep. I also take a Meltonin 3 mg at bedtime. I sleep until about 4:00 AM & that's it. I've tried Black Cohash but I don't think it helps. I started taking non-flush Niacin and it doesn't work either. I guess I'm stuck with hot flashes forever. I'll be 73 in Aug. You would think they wouldn't last forever! I guess I have the little white pill to thank for that. But it's better than BC. I wear a bracelet on my right wrist, NO BP, NO BLOOD draws.
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