Arimidex - Coping with the SE's
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My oncologist took me off arimidex this week and I will start femera next week. The fatigue and depression from arimidex was killing me. I hope femera works better.
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Beau - thanks.I have a dr's appointment tomorrow. hans are not as swollen today,no idea whay but the hip pain that people are taking about here is resonating with me....only at night...at first I thught my bed was too hard but then i remembered..nope....it is memory foam on top of amatterss and actualy something I have been considering changing because I wake up with lower back pain....to the point where I have to roll out of bed....in the am..onceI am in the shower, i am ok again...so..hink it is time for an accupuncture appointment...my blood pressure is actually abit low right now...110/65 insteadof my usual 112/70...might partially be affecting my energy...will see tomorrow...sooooo frustrating....puts mein tears all the time and I don't feel strong..which I really need to feel right now with work crap...I just want to be left alone to do my work....i left the politics so leave me out of it.
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It's been one week since I switched from Tamoxifen to Arimidex. I had a headache every day until yesterday. Hope that is done. I do feel a little more sad than usual, hope that goes away too. No other differences ... still having warm flashes and some joint pain when I don't exercise.
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Went to the dr. and the edema is a very possible side effect or the arimidex so she has put in a call to my oncologist to find out what they normally recommend...change meds? diuretic? or whether they think the side effects will go away. I have booked another appointment for next Friday for my annual pap, breast exam and to recheck a mole and get the info. on this medication....Figure I can handle one more week...but holy crap batman....tight around the bra srap again, in the shoulders..hands aching...I am only 49!!! Going to go to African dance tonight and shake this feeling off.....whine whine whine....pathetic.
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Hi Sandee,
Sorry to hear about your edema. Definitely do not want to live with that so I hope that they can solve it! Did they do a blood test to check your kidney function? Consdier giving up some salty foods? Not sure if that will help given your low blood pressure. Just be sure they figure it out so that you can feel better!
I suppose it is possible that you are having major inflammation/arthiritis from the Arimidex (i.e. lack of estrogen.). When I started up, I worked my way through NSAIDs, pain pills, etc. I too had terrible neck/back spasms (3 herniated disks in neck). I ended up on 10 mg of diazapam which is both an anti-anxiety med and muscle relaxer. It worked wonders. I finallly got free of the constant pain cyce and started living again. Good luck and don't settle until you figure this out!
Ginger, I just want to mention that I too had terrible neuropathy after TC X 4 chemo. My onc reccommended vit. B6, which I started taking right after my second chemo ( and still do). Time was also a big healer in my case. I still have some neuropathy in my feet, but it is must less. My hands were so bad that I burned them cooking twice. Now, they feel fine but for the arthritis nobs in my joints!
Check out the MD Anderson site as well. They were conducting some studies on some other supplements (forget name), but I would definitely investigate. Apparently diabetics have a lot of neuropathy issues so things like B6 have been shown to help them and now we bc folks can try it too. Good luck!
Sunflower, I am right next door to the Dana Farber at Beth Isreal Deaconess. Seems like we both lucked out with our oncs. I tried acupuncture when my neck was killing me and it definitely helped. With winter coming on, I may need to start up again. thanks for mentioning it!
Best, Beau
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Beau - Hi, neighbor! I LOVE being able to get to Boston. Had my surgery "locally" in Springfield, and the oncologist was SO AWFUL - all I'll say is what I was told when I went to DF for my "2nd opinion" - when I told them what chemotherapy the local oncologist thought I should have. "We'll never say anything negative about another doctor, but that's more than twice the chemotherapy we'd suggest, not the chemotherapy we'd suggest and more than we'd suggest. Shudder!!!!!!
I had just moved to this area, didn't know anyone, and "new" friends were volunteering to help me, drive me, etc. I was afraid to ask for anyone to drive me a 5 hour round trip. But, when I told the friend who drove me for the "2nd opinion" ( it was at her urging, insistence, I went for it) what the docs at DF were saying, and how could I manage going to DF instead of locally - she GRINNED and said " I told you so." And I went to DF. I really think they saved my life, my sanity.
The difference between how patients are treated at DF, and how they are treated at the "local hospital" is , well, not able to put it into words. Different worlds. Locally, this oncologist really didn't know as much as I knew from just reading after my diagnosis. It was "one size fits all" and "don't question us." The onl time I cried, was in my one & only visit to that oncologist!!!
ACUPUNCTURE. Just wish I could get every woman suffering from any kind of neuropathy or inflammation, from chemotherapy AND/OR being on the A Team to try ACUPUNCTURE.
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Also wanted to add, something I take seems to really be helping me too. I've mentioned I use products from Village Green Apothecary (used to be called The Apothecary) - well known to people who live in the Washington DC area. It's right net to NIH (National Institute of Health) in Bethesda, MD. When I moved, I started buying the supplements I use mail order.
They have a fabulous website, and also, all the products I use are their own "label" - PATHWAYS. Twice a year they have a 35% off sale, so naturally I buy twice a year! Enough to last me for 6 months.
I used to use Glucosamine, Chondroitin, when I first started going to the Apothecary about 25 years ago. NOW, I use a new product which I LOVE, LOVE, LOVE. No, I am not a salesperson for them, I just love how I feel. http://www.myvillagegreen.com/p-26111-joint-health-formula.aspx
I've had very good Bone Density tests, even being on the A Team for 4 1/2 years. GENETICS is a huge, HUGE factor, my mom had "good bones" too. BUT, I've also been taking this for about 15 years. Pathways BONE GUARDIAN. The "vegetarian" version of this is CALCIUM/MAG PLUS.
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Hi MamaV,
How are you doing?? we were on the Chem and Rad thread. How are you doing?? I just started Arimidex Thursday, but before I had a total Hyst/oop on 11/4 which I started having Knee joint pain right after rads and now 4 days before I started A, I have been having joint pain in my hands which they think are from no estrogen in my system yekkkkk, I am just hoping it does not get worst and goes away... I am 47 and fell like I am 80. Anyway it is nice to see you here sorry to wine about me hope you are doing good you have been through a lot.
Keep me posted on how you are feeling on the big A
Losts of good wishes and hugs.
Pam
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I'm trying to find the source of something I read recently-I'm hoping someone can provide a source.
I read that women on Arimidex who smoke have less hot flashes than non-smokers (which is counter-intuitive since smoking lowers hormone levels in non-BC women which can increase hot flashes).
If this sounds familiar, please send me a source--thanks!
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I'm switching my Arimidex to night time, hoping it will help with the hot flashes at night. Even on Ambien I'm not sleeping well. Of course it hasn't been 2 weeks since the hyst/ooph, either. I'm just VERY glad it's fall/winter!
Hope the A team is going well!
Toasty Purrs,
Jenn
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Acupuncture didn't work for me these first 3 sessions. Going to try someone new. My advice is to fully check out the person. Mine is used to treating athletes from the local University; her preferred method had me in pain - for days. It's called Trigger Point acupuncture, and is not for the faint-at-heart! The next guy is not only an acupuncturist but also an MD - I think that's win-win and looking forward to going to him.
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Jenn, buy a floor tower fan with a remote control. It is the best at night when you have a hot flash.
I am two days off of the anastrozole now and I don't feel any difference yet. My hands hurt a lot! I had to be on an hour long phone meeting and my hands hurt lots right now. I sure hope this lets up soon. Them hurting when I am not usoing them is especially annoying.
Have a good weekend
GInger
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It took me about 10 days to 2 weeks before I felt better after stopping the ARmidex.
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I love tower fans and have several. One at work right next to my computer. Sometimes I pretend I have to check something on the computer, when in actuality I am cooling off!
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Where is a good flash when you could actually use one??? I froze my butt off waiting for the birthday girl on the Tutus and Tiaras ride this morning. We donned the tutus over the long underwear and spandex.
The most fun.
We were warm once we got going. Prior to that, I could have made megabux selling hot flashes. We had "cake and ale" afterwards at a good Irish pub.
Now my butt aches....but otherwise, I feel just great. Anyway, was so fun seeing the guys get into it and also wear the tutus.
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Claire - smiling at your fabulous description!!!
Patoo - i think "word of mouth" is the best way to find a good acupuncturist. Also suggest you look for someone who also has a stong foundation in Chinese Medicine. The hebs my acupuncturist has me taking to control allergies are SO, SO, SO much more effective ( fewer SE's) than the traditional antihistamines I used to take.
Don't know anything about "trigger point" - but deeeeeeeply suspicious of anything which hurts! This is NOT a place for "hurts" - I accept that massage sometimes "hurts" while the real deep muscle kinks are being worked out, but NOT acupuncture...well, that's obvioulsy my verey biased opinion....
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I'm so excited - I just pooped! Percocet is my friend in many ways, but not a friend to my bowels. And I think I'm still a bit spazzed from the hyst/ooph that was just under 2 weeks ago.
Happy Purrs,
Jenn
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Funny Jenn, TMI, but funny so it's okay. We're here for any positive and encouraging news.
Sunflowers, I agree, and the new guy appears to know his stuff in Chinese Medicine. 'Trigger Point' acupuncture is valid in acupuncture (you can google it) but I think it should only be used in rare, very rare, instances.
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Hi mpeaches,
How are you? I also had a hyst/oop about two weeks ago Nov 4th, I feel you when it comes to hot flashes, I started getting mine with Chem then when I was told about having the hyst/ooph I just hope the hot flashes would not get any worst and so far they seem about the same other than I do get a little more sweaty at night. When I have mine my head gets go hot it feel like it is going to explode hate, hate, hate them. How are you doing with the joint pain, once I was done with chemo and rads I started getting really bad knee joint pain which I still have but now I get it in my hands, when I wake up in the morning my thumbs snap at my joints and my fingers are stiff until I work with them and I hope it goes away soon, I head it could be from not having estrogen in our system anymore, any ideals with this issue anyone.
Hope everyone has a great thanksgiving.
Lots of hugs Pam
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I didn't have to do rads after I had the mastectomy. The chemo threw me into menopause, so the hot flashes started a while ago. I started on Tamoxifen, but then almost immediately had severe back pain, so we switched to Arimidex, and the back pain continued. Turns out I have 2 herniated discs in my back! I was sort of thrilled with the news, since I was so worried it was mets.
How are you doing with your recovery from the hyst/ooph? I'm still pretty tired, but not sleeping great. Still pretty sore and poofy.
It's a really cute photo of you - you look really young! I'll be 50 in March, and lately, feel a LOT older!
Purrs and hugs -
Jenn
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Ya for the herniated discs, I would be saying the same thing as long as it is not mets we are doing great, what are they doing for your back? the chemo also threw me right into menopause very quickly and I am in Arimidex fun fun. I am feeling pretty good I had the robot Di Vinchi lap for my hyst/oop so not to bad, I did look pregnant afterwards but it is going down slowly. I am also really tired since March, Lumpetecomy, chemo, rads and not this I think my body is a little tired.. I little things wear me out. I am hoping to go back to work full time in Jan. I have been working all along until this surgery but only part time. Oh one more thing i have not sleep good since this whole thing started with me. I hate it.
How are you feeling?
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mpeaches,
I just turned 47 in Oct.
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I was hopeful the hot flushes would lessen with time but they seem to be getting a little worse. Or a little more noticeable and annoying. It's definitely worse when the weather is warm and humid, as it was today. Nov. 20th and we needed the A/C today.
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Hi everyone! Does anyone have drainage or bleeding from the VJJ? I mean does it get so dried out that this happens. I think I should go see the dr. just to clear up any crazy ideas that rum through my head. Any ideas ladies? Thank you balsie
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If you aren't sure as to whether or not you should see the doctor, that means you should go and see the doctor! Better to be safe than sorry.
I sure like cold weather better now than I used too!
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I suspect I will sleep just fine tonight. Notice a bit of numbness in my fingertips, but suspect a touch of FROSTBITE. Was frosty and nippy out there cycling today. Glorious though.
Hormones are doing just great as three guys and me doing the ride
Not one hot flash.
Baisie....yes, on your question, but for good reasons.
Off to bed, as tired from the day.....church, cycling, a play, work, dinner, online. Time to get ready for the week ahead. - Claire
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I haven't posted here in a while. My hot flashes are improving as long as it is 68 in the house. lol We had a warm spell this week and they were back...so I agree with you on heat and humidity making them worse. I still have joint pain and now am working on a thumb with trigger finger. yuck. Mine middle fingers both lock and have to be pried open. I have found the best way to do this is to push on the joint just behind the finger nail. It does make me want to cry out in pain.
I do have some new numb spots, One in the middle of my back, one that comes and goes on the tip of my nose and the other one comes and goes in the corner of my eye. I am not sure if it is just neuropathy acting up or what but I did quit my lyrica. My scans are next week and I see my Dr. on the 1st. Lots of questions for him.
I also started Weight Watchers and have lost 10 pounds! It has been slow but it can be done.
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Balsie - YES. That's a SE of being on the A Team. Not always blood, but sometimes. I use coconut oil ( take little clumps, roll it in my hand to a suppository shape) put it in saran wrap, keep in refridgerator. When dryness gets BAD, I use it as a suppository just before going to sleep ( with a pad!) and feel MUCH better next day.
Tried Replens, the beads, all the stuff - even tried using vitamin E oil Capsules ( nicking the capsule) used as a suppository. Still searching for a better way - haven't found it yet.
SEE A DOCTOR. That's how I got my diagnosis - vaginal atrophy. BUT, I would be worried, if I hadn't seen the doctor - this was during my first year of Arimidex - I'm now in year 5 ;-)))
Who was it that always used to say ( Otter?) "Are we having fun yet?"
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Thanks Sunflowers for all your great info. I did have acupuncture for my low back and knee along with chiropractic work. I was never one for needles but figured that it couldn't be any worse that I've already gone through so I gave it a try. WOW, it did not hurt and it gave me great relief with my hip pain. All on my left side which is the BC side. So I'm not sure if it's the Arimidex that caused the flare ups from old injury but it really doesn't matter now. As long as the pain is gone, I'm a happy camper. My chiropractor does the acupuncture after his chiro treatments. I feel so relaxed and well when he's done with everything. He also suggested Fish Oil for my joint pain. Any thoughts on that?? Kitty0
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Kitty - I take the Nordic Naturals Fish Oil - in a bottle, from Whole Foods - which, strange to say, has about the lowest price on it. A teaspon a day - SO much easier than taking lots of capsules. It has a "lemon" flavor - don't know how much it helps, cuz I've been taking it for years. I think the Pathways Joint Health Formula, along with Pathways Bone Guardian are also part of my feeling pretty good.
Nothing seems to help with the sometimes just feeling SO tired. That seems to come & go, but generally I do feel that is the major SE of Arimidex for me now. Well, of course, carrying a LOT of extra weight ;(
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