Arimidex - Coping with the SE's
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Pam (plils) - good to see you here. Glad your surgery is over and you are recovering! I'm 41 but chemo sent me into menopause and I am now officially post menopausal - so switched from Tamoxifen to Arimidex. Joint aches are much better on Arimidex than they were on Tamox. Had a headache for a week straight after switching, but that has passed as well. No difference on the hot flashes - they still suck - LOL!
I too, have not slept well in over a year! I swear I am aging so much from all of this!
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sunflower~ Thank you....I have coconut oil in saran wrap as we speak. I made a dr appt. for tomorrow but my oncologist called and wants me to see the gyno that did my surgery. That is fine with me...I am sure my VJJ has taken a vacation to arizona dessert land but I want to make sure everything is fine. Hope everyone is having a great night! So right.......are we having fun yet?
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Did anyone "take a break" from it and go back on it? I have been off it about 2 months (long story, bad DEXA scan, surgery, etc) and am ready to go back on it. Did I really screw up by going off it?
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No, I have heard of several going off and starting again....Welcome back to the A team train
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Thanks, Balsie.....
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I am three days off and expect to go back on . Finally my fingers hurt a little less today!
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I was off for about 2 months, though. Bad decision on my part - I got freaked out by the amount of bone I had lost in 1 year. But I should have stayed on it. I am going back on it with Fosomax this time.
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I was taken off it by my oncologist ( Dana Farber) after the first 3 months because of such hand pain, numbness. Stayed off for about 6 weeks until sensation came back into hands.
There is a clinical trial going on now - for women who have been on an AI ( mainly Femara, I think) and the random computer puts you on 1) daily for 5 years OR 2) Daily for 9 months, off for 3 months, for 5 years.
I "drew" a good card for the Clinical Trial I volunteered for, for chemotherapy - just couldn't face the possibility of 5 more years. SO, someday - probably a long time, we'll get the data about the comparison of the 2 different ways of taking Femara. I "joke" with my oncologist- as soon as they get a GLIMMER of the 9 on/3 off working, I'm going to create my own personal cllinical trial
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Saw my Gp last Friday about the swelling in my hands and surgery side...feels like post0-rads all over again.bras hurt, shoulder area is swollen, left and right arm this time, are puffy. I see her again on Friday to talk about whatever the oncologist has replied with re. whether to put me on a diutretic, take me off the damn things or tell me not to worry...this will not affect my heart or cause lymphodema....reallllly on't want to be on this med!
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Thanks for all the mattress info. It's finally hit me that my mattress is almost 25 years old! I'm noticing every little nuance of comfort or lack of it, because the headaches are pretty bad again. Also, have I missed a thousand discussions of mental confusion or fogginess or memory problems as a side effect of anastrozole? I still have to work and it's embarrassing when i can't find my notes. This comes and goes, but I'm pretty sure it's a side effect, could use some reassurance.
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HI Marybast,
short term memory issues and fogginess are mentioned a number of times - myself included. I just power on and thank god for google when I forget something so obvious that used to be easy to call up, but now I just can't.
Sandy, a short break won't hurt and might even help your body adapt. Also, consider adding whatever med might relieve the symptoms so long as it doesn't cause even worse symptoms. I hope they figure out something soon! Remember, you can always try another pill if this one is a bust. Happy HOlidays to all, Beau
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Happy Thanksgiving to all!
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I wanted to say Thank You to you amazing women. I hope everyone has a wonderful Thanksgiving.
And I have a question. I don't know if this is due to the fact that my hyst/ooph was less than 3 weeks ago, or the Arimidex, or that I've had 5 surgeries & chemo in the past year, but I just do not feel GOOD. I do not feel rested when I get up in the morning (and the only way I can sleep is with Ambien), I just always feel as though I've been run over by a tractor. And then it backed up.
Any thoughts? This too shall pass? This is the new normal?
Squashed purrs,
Jenn
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Peaches, be kind to yourself - your hyster/ooph was only 3 weeks ago! You have had 5 surgeries and chemo in the past year - of course you feel like you have been run over by a tractor! I would think that is totally normal. I had my mastectomy and hysterectomy in the same year, and felt the same way at first.
I truly believe it will pass and you will feel better! You have had so much done so soon!
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Thanks Fearless One. Oh, and did I mention the 2 herniated discs? I was ecstatic that it wasn't mets, but man it hurts! (I couldn't get in to see the orthpedic guy until the 21st).
I'm just impatient with myself. I want to feel GOOD again! I'm tired of being in pain, or slightly loopgy from the few pain meds that work for me, and i'd love to be able to sleep unassisted, blah blah blah. I need to go to the 'I bitch' forum.
Why is it easier to be patient with others than ourselves?
That being said, off to take a shower and go to the breathtaking beauty that is Zions National Park.
Thanksgiving Buffet Purrs,
Jenn
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mpeaches, for every hour of anesthesia your body needs a month to completely clear it out of your system. Most of the effects are gone after the first couple of days, but the fatigue and not feeling good lingers. Add to that your body diverting all it's energy into healing what the doctors cut, poison or burn, then factor in instant menopause and it's no wonder we don't feel good for so long. And all that doesn't even begin to count the emotional and psychological aspects of a cancer diagnosis. It's probably more surprising that most of us remain functional at any level during all this, but then we are women. . .
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I am having my sixth surgery in January. This time it's for a bunion on my left foot. I waited too long and now will need a bone graft as well. Eight weeks non-weight bearing. In May I will have the other foot done. This will make seven surgeries in two years. I too struggle with fatigue and a lot of continued joint issues with Arimidex. My trigger thumb required surgery and they discovered that I had also ruptured the tendon in my thumb. Thanks Arimidex! Breast cancer is definitely not for sissies, and yet I am very thankful for this medication as I truly believe it is helping to prevent me from having a recurrence. My BC was 80% ER +. I am sticking with the A-team for five years or longer if the research proves that it's beneficial. Hang in there Ladies!
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Peaches - I've heard that same month thepry which NativeMariner refers to.
ALSO, a nurse I met at Dana Farber Cancer Institute in Boston - said she honestly estimates ( she had bc too) it took her THREE YEARS to get back her "normal" level of energy, well being.
BE GENTLE WITH YOURSELF. Times a million - rest, and stay as active as you can, and HEAL. That's the key, I think. GIve yourself time - to HEAL.
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I agree with Sunflowers, Peaches. Give yourself time and permission to heal.
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Native, I didn't know that about the anesthesia needing a month for each hour you were under - very interesting! No wonder I still feel a bit foggy!
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It takes a long, long time to feel 'normal'. Different places I've read that however long you were in 'active' treatment, you should expect that long again before you feel normal. I'd say it's more like double that time. Not that you don't start to feel better, but it is a gradual process. Interestingly (to me) some of my blood work is just getting back into the normal range, almost 5 years after chemo.....which my doctor says is not unusual.
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I agree with Ruthbru - and the paradox of this healing time, is during that time, I also was dealing with the SE's of Arimidex.
I suggest having a thryroid TSH ( thryroid stimulating hormone) blood test for women over 50, during the healing time. I was too exhausted, and it turned out I needed to start taking medication to jump start my thyroid. Felt much better after I started taking it. Also the VItamin D bllod test, there's a whole thread about that.
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Fearless: I've had 7 surgeries and 12 rounds of chemo in the last year and a half (two cancers, breast, then ovarian) and am now on Arimidex. I'm 3 months out from my last chemo and I am just now starting to feel better. I've started walking again and have a little more energy. Hang in there and give it time!
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sunflower....3 years to get back to herself?!?!?!!? Good grief...I don't disbelieve it but omg....
the last two mornings have women up with numb hands.....from sleeping on my side...scared mesilly yesterday morning and this morning I was angry. the onc gave me Aleve to try....but my pharmacist says because I am on a blood thinner for the stent they put in in March, that I should not be on ibprofen or aleve...mmy Gp said for a week it is ok while we sort all of this out...
My tolerance for people stuff is low these days...I don't honestly care about work any more....domy thing and leave...was accused of not being a team player and I thought ' you are right. I am on team-Sandee right now'.....wake up achey...takes a hot bath or shower to get me moving...I do not have arthritis.....have a bum ankle but have never had joint or ain unless i have sprained something...now my lower back hurts whenever I bend ( and i think at 49 I should be able to tie my showes and bend to put my pants on....)...will give this another week
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ps. should add that mr Gp is sending me for a blood work up wto find out why I am so darn tired....I know healing takes time....but I too was fine during radiation etc...even a few months out from the heart attack due to Tamoxifen, I was fine..this has kicked me to the curb.
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sandee - when that happened to me, numb hands sleeping, during early days of Arimidex- I started wearing wrist splints to sleep - really helped - no numbness, and no pain during the day. I got mine at a medical supply store, but most pharmacies have them. NOT THE STRETCHY pull on ones, but the ones that close with velcro straps so you can adjust them.
Really worth trying it. I still sometimes sleep with them on, if my hands are feeling creaky during the day.
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Thanks Sunflower.....what about your bed,=...hard or soft mattress? I took my memory foam/foamy combo off a few days ago thinking it wold help my back but that is when the hand numbing thing started....thinking of putting the foamy back on tonight to see what happpens.
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Thank you all for encouraging me to be patient, on the road to recovery. I would certainly tell anyone ELSE that, I'm just not very patient with myself!
I can't tell if switching the Arimidex to night time has helped with the hot flashes, but I know the cooler weather has helped a bit. Also hard to tell since the hyst/ooph seems to have contributed to the Hot Flash Fall/Winter Season!
Hot purrs,
Jenn
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I have neuropathy in both feet and in my hands. While mine began during chemo Arimidex can cause neuropathy and the numbness in my hands did increase to pain in the joints taking Arimidex . It would be wise to mention the numbness to your Dr I think.
Ginger
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HI All
Sandee and Jenn,
Please be easy on yourselves! I just want to add to the chorus that it all takes time to settle down - both physically and emotiionally. So many things coming at you so fast - cancer diagnosis, chemo, rads, hear attack!, stiff limbs, no sleep. I mean - everytime you think that you have absorbed the last blow, another one hits you in the chops. You are both amazing women who have lots of courage and strength!
I know my own journey has been rocky. I am now 11 months into Arimidex and things have settled down - at least emotionally and somewhat physically. Somewehre along the line, I just made up mind that "side effects are easier to treat than a recurrence" a la Jo's favorite saying here on this site. (heart attacks excepted to this logic so Sandee, you are one though cookie!).
Please try to find pleasure in a slower pace of life for the time being because I suspect that is what your body and mind need. I for one felt it was important to stay as positive as possible so I took whatever medications I needed when I needed them. My onc supported me in my decision to keep active and involved in my life and kids' lives and to do whatever was needed to make that possible. Niiether he nor I think I have an addictive personality (sort of the opposite as I am always worried about upping any dose of a drug like ambien or oxycodone or diazapam. I just rotate them in and out to be sure that my body doesn;t get too dependent. ) So what works for me may or may not be right for others.
That said, I am now one year past chemo and almost a year into Arimidex. I have adjusted my diet, made room in my day for walks, yoga and meditation. I take supplements like Vit D and calcium. I do feel better and have more energy, but nothing like before "bc",
Even with all these adjustments, my conclusion is that no estrogen in our bodies is like aging 10 years in a day. I have lost all my upper body muscle because with 3 herniated disks in my neck, plus the carpel tunnel (tingling numb hands) that Sandee and Sunflower had, I had to take a break from weights,etc when the arthiritis from the arimidex caused my neck to go nuclear.
My newest challenge is that my bad cholesterol has recently shot up above 200. If I can't get it down through diet, I will consider going on Niacin or a statin.
But the new me is still better than no me. I have set a goal for this year of trying to get some biceps back (I know this seems petty and small, but really, this will be a major accomplishment!). I consider myself lucky to be ER positive and to have had no node involvement. I just pray that I don;t have a recurrence.
This is a long winded way of saying - hang in there.. You are both really strong women. GIve yourself time. You know your body so if it really is kooky, then you can always try another drug.
I am hanging onto the hope that if I can age 10 years in a day, then I when I get through my 5 years (or whatever it turns out to be), I will feel 10 years younger when I am done. May the same happen to you!
Best. Beau
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