Arimidex - Coping with the SE's
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I want to give Arimidex another try because I don't like the idea of going on one of the steroidal ones....don't steroids weaken the immune system?
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Femara is also non-steroidal. I don't understand the difference between Femara and Arimidex, and why one would be prescribed over the other. My onc basically shrugged and said their choice was anastrozole. Then they'd try letrozole, and then Aromasin (Aromasin being the steroidal one).
L
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LadyinBama - my oncologists agree with mybee333.
I'm at Dana Farber Cancer Institute in Boston, MA - they too are doing a great deal of research on this subject. Right now, as my SE's are all manageable - the benefits seem to outweigh the risks. A few Clinical Trials ( Phase III) are going on now - don't expect there will be any data for years - so I will happily "err" on the side of caution, and continue.
I think the "5 year mark" was an arbitrary choice with a new class of drugs - AI's. Just as in years past, many said "if you make it 5 years, you're safe" - well, we all now know how not true that is, especially with E+ bc.
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Lewing, good question....however, for me, my main concern was osteoporosis since I lost 18% bone density in one year - and osteoporosis is a side effect of Femara as well as Arimidex, so I guess I might as well stay on the Arimidex.
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Lewing LOL
I prefer the Whole Foods 365 brand Extra Virgin Coconut Oil ( how, please if any one knows, can a coconut be a virgin?) - black container, sold in viatmin department. I love my Trader Joes too, but haven't used their coconut oil. I can highly recommend the Bread for Life Gluten Free Bown Rice bread at TJ's. VERY DENSE. Doorstop dense. And delicious toasted, with some honey melting on top, I pretend it's pound cake, and it's darn close!
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In the main clinical trials with tamoxifen, it was tested against placebo and women were treated for 5 years. Those studies showed that tamoxifen could significantly decrease recurrence risk in women with ER+ tumors; so 5 years of tamoxifen became the standard-of-care.
When clinical trials were conducted with the AI's, they couldn't be compared to placebo because there already was an approved drug that decreased recurrence risk: tamoxifen. So, the control for the clinical trials with the AI's was tamoxifen, and the studies lasted 5 years. That's how we got the 5-year limit.
otter
[ETA: Gingerbrew, you're right -- there is at least one study underway that's comparing continuous treatment with an AI versus 9 months on/3 months off (I think that's how it goes). That study didn't come up when I did my casual search yesterday. I don't know what it's called or what the design details are. For example, did the participants have 5 years of AI already, or 5 years of tamoxifen? If somebody can find a reference to that study, that would help.]
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Ducky- you are welcome....it was not an educated opinion....just thinking of the devil you know vs the devil you don't if it is possible and is not interfering with your living your life..but cost is a factor too....you will make the best decision...sounds like a pros and cons list in the offing:) hugs toyou. these decisions are tough
otter- you my dear are a wealth of information! keep it comin'!!!
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Otter - that 9 month on/3 month off is at Dana Farber. I didn't "opt in" cuz I wasn't willing to face the other part of the same study - 5 more years daily use ;( It's for women who have been on an AI for at least 4 years - the AI they're using on the trial is Femara. It's a new study - just a few months old, I think, so data won't be available for a long time.
I told my oncologist as SOON as there was a glimmer of info, and if the 9/3 was working - I was gonna make my own "clinical trial."
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Has anyone here actually had your estradiol level monitored? I asked my onc about measuring it and she said no need -- if I'm having hot flashes, it's working. Apparently in ovulating women there can be a huge range over the menstrual cycle, something like 50-400 parts/ml. In menopause the general range may be as low as 10-20 parts/ml. So I'm guessing that anything under 50 is moving in the right direction. In March my estradiol level was 24. I had it measured again last week and will talk with my preventive med doc about it tomorrow.
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Hey Gorgeious Women - Thursday is my 'cancerversary', and I'm curious if anyone else had some weird emotional reactions to it. I'm feeling REALLY emotional - weepy, dramatic, that kind of thing. I haven't really had that reaction throughout this journey - which of course, could be why I'm feeling it now! Someone posted somewhere (the problem with reading too much) that we all suffer to an extent, PTSD, and I'm thinking as I finally wind down from all the surgeries, and the chemo, that this might be the case. Part of it could be the amount of pain I'm in (2 herniated discs - I see the back Dr. the 21st), or just an accumulation of everything.
I know a lot of women have had a lot of success with Effexor, but I was on it years ago, due to a problem with depression, and I'm quite reluctuant to take it again.
So, for now I'm riding it out, just wondering if anyone had any input.
Melancholy purrs,
Jenn
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Jenn - count me in on that too! My cancerversary is next Friday and I feel like I am reliving this all over again! Teary, anxious, and all that crap! BC just keep on giving!
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Jenn - now almost 5 years out, I still get the SHIVERS on the date - feel the fear down to my toes, and remember the fear of that day. Still think that day was the most difficult part of the whoe process - including chemotherapy. Something about the 'anniversary' reawakens it all, for me at least. Does get easier, the farther out it is - but still is a "different" day - which, honestly, I don't think anyone who hasn't been diagnosed with bc can understand, no matter how much they love us, or say they understand, it's just a very different day....
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Maryblast- I had mine done when Imet my oncologist (last Nov) then again in May and then in July...it went from 90 to the 40;s and then well below what it needed to be to consider me post menopausal...which I needed to be to switch to arimidex...I had assumed since Ihad had no period in 2 years that I was menopausal...but that was not the case...the tamoxifen kicked me there a bit faster. I had hot flashes on tammi but now that Iam on arimidex, I have my big thick sweater on again!
mpeaches/mamav- my emotions run high when I am in pain....so my back going out a couple of weeks ago made me weepy...and anniversaray or unknown outcomes of dr appointments also seem to make me lose my mind..ie. the week I was going to see the oncologist about switching to arimidex, I quit my job in a flood of tears....very dramatic!Now that I am on it, while Imay have some side effects...I am no longer dramatic. Fear factor and not talking about it...saying I am fine when I am not? I too was emotional around my cancerversary date....
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HI Mpeaches,
I am sorry that you are feeling down on your cancerversary, but glad that you are here and on the mend. I certainly understand your feelings - you have been in the thick of the battle and now everyone thinks that you are fine and should just flip a switch. Maybe you even think that, so it is doubly alarming not to feel positive and ready to move on. You are not alone! One month after chemo was the worst for me. I just so wanted to be back to the old me, but it was not to be. I was aneimic, had neuropathy and like you, 3 herniated disks in my neck that were on fire.
I am now 7 months past my caniversary. I can see now that my body needed more time to heal and I had to figure out how to manage the various side effects of arimidex. I also think that I was in hyper battle mode from the day of diagnosis until the last chemo. Then, there was this big pause....adjustment, as I tried to figure out the right rhythm of getting back to a more normal routine and sorting through various health issues that lingered on or reared their head in new unpleasant ways.
For what it is worth, the herniated disks in my neck ( I got a new one while going through the active treatment part) got much worse on arimidex - probably brought on by arthiritis. My approach has been to take what medications I need when I need them (with my oncs full support) so that I can stay positive, sleep and keep active. When I finished chemo, I needed pain pills for my neck. I transitioned off them to muscle relaxers (alternate between diazapam which is also anti-anxiety and Flexoril (sp?) and NSAIDs.) I take sleeping pills if needed. I am very careful not to increase the dosing as I know these meds can be addictive. It has worked for me, but there are days when the pain is tough and my mood is blue.
Just hang in there. Don't suffer if you really feel down for a period of time. Medication, talk therapy,acupuncture, massage (anthing that can relax you and help you feel good), diet, friendships, venting, walks - whatever it is that lifts you up is what you need.
I also continue to work on my diet and exercise. I have gone to mostly nonfat everything, eat much less meat, less dairy,etc. It seems to help. I recently started back with arm weights (7 months after my canniversary) so it has taken a long time to get here and I still couldn't do it without taking some meds.
Good luck! Beau
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I have had two cancer-versaries and didn't feel anything because they came and went without my remembering their significance. But I have always had problems remembering dates. DH and I have both forgotten our wedding anniversaries!
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I am always crabby and unsettled for the whole MONTH of February. Like Sunflowers, I am almost 5 years out, and I feel queasy even typing about it now. You are still in the really raw emotional 'processing the whole experience/trying put the pieces back together' phase. It will get better with time, or with memory loss
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Been away a while but I did take time a couple of weeks ago and caught up. Started my raisins "resting"...took my first dose tonight after dinner. Not the best tasting treat I have ever consumed...willing to try just about anything.. How long is it suppose to take to see improvement?
On the topic of cancervercaries. I tried to take the high road when I was going through treatment that I was one of the lucky ones that had been diagnosed early and be positive and brave. Walking out of my last treatment I barely made it to my car before I fell into a puddle of tears. I now will drive miles around the cancer center not to have to drive directly in front of it. It has been 2 1/2 years.
Take care Ladies
Teri
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When I have to go past the exit to the cancer center, my stomach still flips over.... I still cry when I get in the car after checkups and they've told me I am fine, I feel queasy when I go to the Drug Store to pick up my Arimidex.......and I consider myself to be a very positive, mentally stable person!
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I'm with ruthbru - I too consider myself a very positive, finally mentally stable ( years of dealing with clinical depression) AND, I get freaky weeks before my annual 6 month checkup. By the time I get to Dana Farber ( about a 2 1/2 hour drive) my BP is so high - just so difficult to describe to anyone who doesn't go for these "check-ups" - friends will comfort me, congratulate me on being fine - and everyone ( BUT ME) seems to not deal with WHAT THEY'RE LOOKING FOR!
And I get an EASY appointment - no tests, no blood work, just a doctor I ADORE talking to me, asking questions, and a "brief" physical exam. Always feel better when I leave, than when I arrive. The people are all so kind, greeted with a smile from the moment I drive into the parking garage, but still......
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Thank you all so much for the reassurance as to how wonky I feel about this cancerversary. I think the reason it blindsided me so, is I had no expectations of feeling so distraught. I'm pretty positive, and I think pretty in touch with my feelings, and very open. Not trying to suppress anything, but I've only cried maybe 3 or 4 times throughout this past year. So this just really came as a surprise, and I so appreciate those of you who have felt the same taking the time to validate what I'm experiencing.
Damp purrs,
Jenn
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damp purrs backatcha...it really is an unusual feeling, especially for us "enlightened ones" who think we have such a "good handle" on all our "stuff." Still hits me, surprises me, and have learned to just accept it as a part of having had bc.
Someone on BCO, can't remember who, has the line from the Eagles Hotel California - "you can check out, but you can never leave..."
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Everyone is so very different. I had days on end where I cried and cried at diagnosis, before and after my mastectomy (esp.!) and at various points in the reconstruction. Just sobbing. But when I go to U of M, pick up my prescription, - I'm relatively happy. So I say if the cancerversary brings tears - so be it. Cry away! It's all just part of the grief process and is nothing scary (hopefully). We all deserve a tear or two.
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I have creid at the pharmacy picking up my meds, cried with my oncologist, his nurse, the radiologist and his nurse, my gp, my counselor, the radiology technicians and my naturopath...and the gal doing her masters surveys on women and their images of breast cancer....and their reacions to it....but most of that ...i am ok with tears....as long as i enter strong, I'm good...hell ...let's all admit it..it is traumatic....we are all strong women and caring women or we likely wouldn't be on these strings, hmm....it will be ok..we will adapt...really....
hugs to all..i am going to bed.
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I agree with everyone about doing stomach flip flops when driving near a treatment center. My rads center was only two miles from my house. I cringe every time I drive past the place now. Sometimes, I change routes just to avoid it.
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Otter, thank you very much for posting this info on the studies that are being conducting. This is all too confusing to me. I thank any girls who have taken part in these studies. Personally, I would be reluctant to participate in a study like this as I would not want to be that person taking the placebo. But then again I did not want to be that person taking any kind of drug needed to extend my life expectancy.
Fearless one, all the best to you, I did not read back far enough to see why you took yourself off the Arimidex but I hope that whatever it was, it gets better. No matter how we look at it, our battle will never be over. I try to do the best I can with the crappy hand I have been dealt but it does get hard and there are times when I wish I could flush them all down the toilet.
Ruthbro and others, I know what you mean about wanting to cry every time I see a doctor, pick up an RX or see anything related to BC. The worst thing for me was driving by the hospital where I "left my breasts". I used to have panic attacks just seeing that hospital and knowing I went in with breasts and came out without them. I was reading my pathology report the other day and could see the exact date and time that they cut my breasts up and froze them then shopped them to California for examination. The mere thought turns my stomach. When asked to make a decision on moving across the country, the fact that I would not see that hospital helped me decide to make the move. My DH got a new job and we had separated for some time. I was at a point where I did not want to move with him. But for me, leaving everything behind, including those daily drives by that hospital, was enough to make the move. Not a good reason to move from coast to coast and now wishing I did not but another story for another day.
I have been reading this thread but not posting. It is interesting to read everyone's experience. For me, I did not have a choice. As much as I would like to rid myself of the terrible se's, I do want to live. And that is key. I often get angry when my legs hurt when cycling or just walking. I was in such great shape before my bmx and now I feel so out of shape. My DH calls me a worm because my muscles got so soft. But I have to accept the facts and learn to live with my new normal. That means hurting both mentally and physically. I feel frustration and anger over not being able to easily do the activities that I truly love but there is nothing I can do. I am working on acceptance.
Sorry for ranting but I am glad to have a place to vent about how I feel. One thing I know, I hate the new normal. But I am alive, I guess that is what is important. I thank BCO for giving me a place to b1tch. Have a good Thursday ladies and I look forward to reading more on this topic.
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cycle_babe, rants and ravings are part of what these boards are all about. And the whole "new normal" thing is one of MY hot buttons. For a provider/doctor/nurse/tech/whoever to tell me to get used to a "new normal" is to tell me that you don't know how to or don't care to help me adjust emotionally and psychologically to the very real physical damage YOUR treatment gave me. It's a cop out statement for all you providers who want the "glory" of "fixing" the problem, maybe even "curing" us of breast cancer. Guess what, geniouses, it doesn't work that way. YOU told me I needed this surgery, this drug, then more surgery to counteract the side effect of that drug and more drugs to manage the side effects of the first drugs. I didn't have all these worries. pains, problems, concerned BEFORE YOU TREATED ME. Would the cancer have killed me? At stage 2, node negative, that's not really an answerable question. It may have not changed for 10 or 20 years or more. Or it could have killed me within months. You can't tell me for sure which. You COULD have told me, SHOULD have told me what the permanent problems would be from the surgery and the drugs you prescibed. You COULD have told me, SHOULD have told me theose side effect were very likely to be permanent. You COULD have told me, SHOULD have told me that lymphedema willh ang over my head for life, but all you said, after the fact, is that it can't be treated. Even that wasn't correct. I really, really resent the fact that I come to you with these feelings, pains, etc and expect you to treat them, after all YOU caused them, and all I get is a pat line about needing to "get used to a new normal." What, you can't make any money off treating the side effects your treatment left me with? Not glamorous enough for you? Do you just not care? Are you a parent? If one of your children died would you accept me telling you to get used to a new normal now that the child's funeral is over? No, you'd say your life has been changed. Well, so has mine. And in just as profound a way as the loss of a child. So tell me, what IS my "new normal" anyway? And what is YOUR role in my "new nornmal"? Cause I'd really like to know.
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Well said Native ...
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cycle babe - there is never a placebo used in these trials - most are Phase III, and different doses of the medication,, but NEVER anything to put a patient in any kind of danger.
Also, muscle weakness is a MAJOR SE of taking an AI. No matter how many weights I lift, squats I do, I can FEEEEEEEL how different my muscle tone is, from before I started taking an AI. Just part of that "new normal" - and again, to add how grateful I am to still be here as healthy as I am, which I attribute to these meds.
I was one of the tremendously fortunate patients - my docs at Dana Farber has been so, so, so wonderful - telling me EVERYTHING, always available by phone or email to answer any question immediateIy, know other women haven't been as fortunate. One of the reasons I still participate on these threads is to share what I've learned too. I feel so badly when I learn of women who haven't been given the treatment, information, understanding we all deserve.
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Native I agree totally with what you said..... Thanks for putting it into words..
Cindy0 -
Any one want to guess what me and my new couselor are talking about currently?
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