Arimidex - Coping with the SE's
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Day 2 off Tamoxifen and on Arimidex ... so far no change ...
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Yes, it gets better. I would say you need to give it a good (or bad) three months at least to give your body a chance to adjust.....and the adjustment is gradual.....like at the end of one day you are suprised because you haven't noticed anything at all.
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I finally bit the bullet and started this morning, I'm hoping this time of day works for me, if not I will be on here asking how to transition to night?
Praying for all good, and no bad SE's
Ginger
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Good luck, Ginger. I hope everything goes well for you.
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JenBro
In my 5th year on the At Team - I'd say all the SEs have eased, with the exception of FATIGUE which seems to have gotten much worse, cumulative for me, like comparing the 1st infusion of chemotherapy with the last.
Just order my exercise videos - and believe, I really do, that it will help. It's been so snowy, rainy,and b4 that, ragweed filled air, walking just wasn't a viable option.
Two things to check, if you haven't already. THYROID. TSH below 2.5 and Vitamin D blood level above 40. Don't let docs just tell you results are "normal" GET THE RESULTS IN WRITING and exact numbers -good luck.
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My Doc just emailed me to try going off of Anastrozole for a month to see if my aches go away. Then she may see about me taking something else.
I am afraid to stop but even my finger joints hurt now! lIKE ALL THE JOINTS in my fingers! caps sorry. I have been on this since May so I am wondering if it would get better if I continue.
I will wait at least a week before taking a break from it. Any thoughts ladies?
Ginger
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Ginger
worse SE's seem to kick in after 3 months - that's when I started sleeping with wrist splints, went to a physiotherapist to get treatment exercises. Started ACUPUNCTURE, massage, gluten free, raised my Vitamin D intake, glucosamine, Fish oil liquid ( a teaspoon a day) it all helps. Can't remember what you've tried - but you have to be PROACTIVE about this. ACTION.
Good luck.
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Hi gals, truly this is one of those where everybody's body is different. 2 months post Arimidex and haven't started Aromasin yet. Need to get that acupuncture scheduled again! It did help but insurance is pretty limited on coverage. As long as I keep moving, I'm ok - No sleep for me!!!
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Sunflowers
Thanks for your reply. All these SE's really make me nervous. How did you hang in there for 5 years? It seems like an eternity to me right now. I agree though that we have to be proactive as much as possible to counter and manage them. I have been eating gluten free for almost 2 years, take fish oil, upped my Vitamin D. finally found a good Dr. who is managing my thyroid correctly, am eating healthy, and exercising. I have found mixing good muscle building/strength building with Pilates has helped so far. If I don't do some sort of stretching daily I feel as stiff as a board. I haven't tried glucosamine. Did that help? Can you recommend a good brand? Once I am finished with radiation I plan to up my antioxidents and continue to work to rebuild my immune system.
My RO told me today to stay off the Arimidex (I stopped a week ago) for the remainder of my radiation treatment. (4 weeks) He said there are some recent studies showing added benefits to doing both at the same time, but he said with my level of fatigue and other SE's it's not enough of an added benefit and to just focus on getting through radiation and then go back on the Armidex. I appreciate the break but not looking forward to going back on it. It's interesting that we have to deal with so many SE's to battle something that is deadly going on inside of us that often has no symptoms. I have to keep telling myself that the Arimidex is the best defense against a very formitable foe! Thanks for your encouragement!
Hope everyone has a good week and a wonderful Thanksgiving surrounded with good support and lots of love. I will be on an A Team break for the next 4 weeks, but I'll be back.
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JenBro
From what you've said - I really think you're going to be FINE after the initial body adjustment to the AI. Really. The fatigue hits me - honestly, because I am the LAZIEST person you've ever heard of. I read, draw, paint, go to art classes, and watch the sunrise from my cozy bed nuzzled in my flannel sheets. HOWEVER - thanks to the Motivation, Keep Moving, RuthBru inspired women on these boards, I HAVE bought Denise Austin tapes, and am DETERMINED to get moving.
I get all my vitamins from the Village Green Apothecary in Bethesda, MD. I used to live near there, and I use ONLY their own PATHWAYS brands. The Multi Two vitamin, and JOINT HEALTH FORMULA (Nutrients that support healthy joint function including glucosamine, MSM, sea cucumber, quercetin, tumeric, grape seed extract...." 180 Capsules. I take 6 a day.
NOTE: The Apothecary always has a HUGE sale ( 30% off approx) theiry Pathways Brands in December. If you check out their website, and get on email list, theyll give you exact dates. I forget. Buy ALL my stuff on sale ( July & December) have use it for more than 20 years.
Also use their Calcium/Magnesium, CO-Q 10, Vitamin D3.
I trust them completely. http://www.myvillagegreen.com/ MIss not being able to just pop in & buy stuff, but they are very good with their mail orders. They will also mix what ever you need, do lots of that kind of 'special order' stuff.
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Go in thinking that you will NOT have bad SEs, and the ones you do have will subside with time. Most people are fine, it is just natural that the people who have problems with it are the ones posting more, the rest are just out living their lives. Remember that it is our best medical weapon in our fight against recurrence and we are really, really lucky to have it (just ask a triple negative gal)!
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The stiffness and the swelling in my finger joints of my right hand is awful. Have any of you been told that it could be lymphdema and that it could take a year for it to surface. I only had 2 centinel nodes removed so thought it wasn't an issue. Any thoughts on this????
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Golfer, my fingers on both hands are hurting. I think it is from the arimidex.
I think you mean lymphodema(sp), not lymphoma. There are threads dealing with lymphodema and people with lots of experience in that area on here. Maybe someone can direct you? Good luck
GInger
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Thanks for your quick reply. I have just been on the sites. I was switched to Femora about 2 months ago because of the SE from the other two. Seems a lot of us have hand/finger problems on this drug and some are blaming it on the "fillers". Hard to cope with these SE......fourteen months ago, before BC I was feeling great, now every day seems like some new darn symptom.
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Am totally wiped out and retaining water....went to my lymphodema massage therapist this afternoon and she said 'wow!!! you are really retaining water. She initially thought it was onset lymphodema and then saw tha the other hand was just as swollen....think it might be the Arimidex since it is th eonly thing that has changed....taking adrenal support with my naturopath....4000iu vit d, coQ10 60mg and fish oil...plus the heart meds and arimidex....good grief....
Think the idea of gluten free is something I need to do...was told by a friend that I look totally relaxed and look great but saw a picture of myself and thought 'how come I look so fat!?!?!?'. achy...Ruth, good advice re. three months etc.....I am assuming these side effects willgo away and or I will get used to them ...between exercize, good food, massage, naturopathic help etc.....well...something has to work right?
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I broke down and went to the pain clinic last week. I just couldn't stand being in pain 24/7 with no relief. I had gone 5 months without pain meds but with the winter weather setting in - I hurt more than ever.
My knees are hurting along with my fingers - that is new SE for me. Been on Arimidex since April and will be switching over to Tamoxifen in January. Don't know if that affects my survival statistics or not - need to ask the Onco about that one.
However my hips - let's just say MAJOR VENT ABOUT THE PAIN! I can't sleep on either side because my hips hurt so very much. The only thing that gives me relief are narcotic pain meds.
I remember having all of this pain on Tamoxifen which is one reason we switched to Arimidex but hey....didn't really seem to matter much.
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Hi Ginger,
I had a really hard start with Arimidex and would agree with Sunflower - it was the worst around 3 months. I did take 10 days off around then at my onc urging - he said that 55% of folks have some improvement with taking a break or switching to another AI. I can't say that I am back to my old self - I have joint stiffness, carpel tunnel, insomnia (not fatigue), but I manage it much better. Combination of improved diet, regular exercise, meds for pain or sleep as needed; these things have all helped me settle back down into a fine routine.
I do have the lumpy finger joints now that I remember my mother getting when she was 80 so I may consider switching to Tamoxifen at some point (studies suggest that 5 years of mixed therapy of both tamoxifen and AI have highest overall survival rate). New studies yet to be published may nix that idea, but I hang onto that hope on my bad days.
I know for me that at some point in the first 3 months, I really wanted to go AWOL. This site with all it's knowledge and support really helped me get through the worst of it. In the end, I just decided that I had to suck it up. I have 2 kids - age 10 and 13. I know in my heart that if I quit AIs and IT came back, I would never forgive myself.
9 months later, (3 more months until 1 year!), I will tell you that I know that I am going to stay the course. Things do settle down and you figure out how to keep going.
Sandee - sorry to hear that you are swelling up so much. Just to be on the safe side, it wouldn't hurt to see your doctor. Get your blood pressure checked, kidney function, etc. That said, low fat and (mostly) gluten free diet has really made a difference in my level of discomfort.Hope it works for you too!
Best, Beau
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Beau
I FORGOT to say - I too was told by my onc ( Dana Farber) to take a 6 week break at the 3 month point. Think it made a HUGE difference. Did a lot to help myself during the break - physiotherapist treatment and exercises for my hands, acupuncture, slept with wrist splints, and went gluten free when I went back on Arimidex.
Forgot about that - thanks for reminding me. Doc was INSISTENT I stop until hands were back to "normal." Such pain and NUMBNESS, what a strange combination, I couldn't sleep. Those wrist splints really made such a positive difference. Think they really saved me.
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Thanks for your feeedback.
Yesterday I noticed that the neuropathy inmyhands is increasing. My feet have been numb since chemo and my hands somehwat numb but now they are tingling and on top of every joint in them aching. I also had a huge muscle spasm down the left side of my back, I have never ever had that happen before. I have had back surgery L4L5 and sciatica but no muscle spasm before. Oh my gosh, if I had been walking oit would have taken me down! Is this part of SE for Anastrozole? I know my chemo brain is increasing with it too.
Hearing that it can imporive after a break is encouraging. I have been so afraid to stop but I think my life will be limited if this all keeps on increasing like it is. 55% is a good number to me.
Of all the side effects the chemo brain is the worst for me, I always enjoyed being smart. I enjoyed understanding what was presented to me and being able to communicate well. I lose SO many words now. I was trying to describe annual flowers I have grown when I lived in themidwest on another thread and I could not remember even one! Not one!!!! #$^%@*#@ That is maddening.
I am at 6 months now. Like the rest of you I would hate to just quit and maybe live a shorter life b ecuase of it.
Your SE buddy GInger
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I've been lurking on this board for a couple of months, reading through all the posts. You ladies are beyond awesome, and I cannot thank everyone enough for taking the time to answer questions, post anectdotal stories, etc.
I started on Tamoxifen in June, but had almost immediate excruciating back pain. Mid-back, right where your bra strap hits. So my onc (who is not only beyond fabulous, he's GORGEOUS!) switched me to Arimidex (well the generic form). Back pain cont. Brief pause for an ooph/hyst a week ago Monday (why did I not have any idea how unpleasant THAT was going to be?) then a spinal MRI - turns out I have 2 herniated discs. Waiting now to see an orthopedic Dr. Beyond glad it's not mets, and it's not just in my head, you know?
Having a lot of trouble with hot flashes since the surgery, which surprised me.
One very odd side effect I've had on the Tamoxifen & Arimidex is LACK of appetite. I've had weight problems my whole life, and NEVER lost my appetite before. I've lost about 15 pounds since starting on these drugs, (bringing my total weight loss to about 60 pounds in the last 10 years - I'm VERY proud of that only being 5' 1"!)
So much rambling, mostly wanted to say Hi!
How sweaty purrs,
Jenn
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I am going to do the break from Arimidex. I am at 6 months. I will let you all know after what the results are.
My current SE from Anastrozole.
hip pain, during sleep especially
knees hurt
finger joints hurt
hands tingle and feel sort of burning.
feet continue to be numb, some return of shocky pain in toes.
headaches
intermittent crankiness, this is unusual for me
increased chemo brain, especially in recall of catergories of things I know, i.e annual flowers I have grown.
Lower abdominal achiness which Dr prescribed a estrogen cream to apply on tissues but not vaginally.
poor balance, but no new falls
Low energy
back pain middle, and l4 l5 area too.
back muscle spasm, first in my life.
lots of night terrors with screaming
That is all I can think of now. I thought a list to compare with would be beneficial.
Laters
GInger
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Ginger - sounds like my list at 3 months.
PLEASE also try wrist splints for sleepiing, ACUPUNCTURE for all the physical SE's and massage to make yourself feel SO good, relaxed -
I also need physical therapy for my hands, that & the exercises she gave me helped so much!
GOOD LUCK. let us know how you feel.....
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Has anyone else experienced an increase in being anxious? Or is that just the normal stress of cancer and money problems?
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I'm guessing from reading the thread that neuropathy is a se from Anastrozole? I'm starting to feel in my fingers
what helps this Vitamin E???Ginger M
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Hello to all you beautiful ladies,
Just started on Arimidex today, It all started for me in March 2011, since then I have had a lumpectomy, Lympnodes removed, chemo, radation and two weeks ago a total hysterectomy/oopectomy so now it is time for Arimidex since I was knocked into menapause during chemo.
I have been reading about all the SE which having cancer we all know there is SE to everything we take or do but, I started have knee joint pain about 2 weeks after my last Rads, and 3 days ago I started having the joints in both thumbs pop only first thing in the morning then they get better so considering I just started the Arimidex today they think because of me having my ovaries removed it is from a lack of estrogen so now I am thinking can it get worst and I now know what the answer is yes it can but I am determined to beat this joint pain shit...I just need to figure out how and thanks to all of you I have lots of things I can try.
Let me tell you since I was diagnosed with breast cancer the only thing that really helped was this site and all the great people giving their experience with everythink I do not know what I would do without my ciber family, love all of you.
Pam
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Sunflowers, how does one find an acupuncturist. Do they have credentials or certification of any kind. I am not particularly afraid of needles, I gave myself the shots during chemo (can't remember the name).
My wrists don't hurt it is my hands, joints and tingly increased neuropathy, would wrist splints help that?
I wonder if my SE's are more severe because I was on estrogen unopposed and then had a hysterectomy in 1996 and then was on estrogen unopposed for about 12 more years untill about 2008. I don't even think my query makes any sense just now. Sorry.
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Ginger_mea
I got neuropathy during chemo. My feet becamse very numb, so much so that I had a book light inside my slipper and I couldn't even feel it. Chemo was stopped two short of the 8 I was scheduled for. Now with Anastrozole, generic for Arimidex, the neuropathy in my hands has been increasing. Feet remain numb.
Everyone is different and you may not have any of the SE's that I have. \
Hugs Ginger
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Gingerbrew, I had during chemo too and my onc had me take vitamin E, I'm guessing it helped nothing to compare it to (and hope I never do) so how can I really know. So I guess it is from the Anastrozole, I will ask the Onc. office when I go Tues for Herceptin and if I should go back on the Vit E.
Pilis, you look beautiful too!
Hugs to you too, Ginger
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THe wrst spints help to kee pour hands at an even level with your wrists - keeping those places where the nerves, blood vessels, lymph can get cramped - allowing maximum circulation to your fingers. I had SUCH severe trigger thumbs - both, after 3 months on Arimidex - that I literally had to move a thumb with the other hand when it "locked" in place. PAIN, PAIN, PAIN, - the physiotherapist and the exercises she gave me to do, literally gave me my hands back. OOOhh...gives me goosepimples to thnk about those days - all is well now!!
Massage - a place to start is with Tracy Walton http://www.tracywalton.com/ and she if she has trained anyone who works inyour area.
Acupuncture - word of mouth? any friends who see an acupuncturist? Your doctor? My doctors at Dana Farber suggested it might help with the joint pain, neuropathy - there is a Complimentary Care Center at Dana Farber in Boston with an acupunturist on staff, also a Complementary Care Center at Sloan Kettering in New York city. If there is a major cancer center near you, they'd know of a good acupuncturist. If all else fails, start with the phone book, or google your city and acupunturist. The "freebie" magazines in Health Food Stores always have listings of good people doing complementary work.
There is growing evidene that acupuncture can relieve the symptooms of neuropathy. I have severe, I mean severe knee pain, almost couldn't walk - it is GONE. I see an acupuncturist one a month now. A lot more often when I started - but now all I need is once a month. SO WORTH IT!
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Thanks SunFlowers.
I will go through your suggestions. My Oncs nurse told me that Accupuncture does a good job on things our medicine doesn't.
Right now my hand meurois acting up and the tingles are feeling more like burning, not fun.
If my feet could be normal again that would be good! I hope my ahnds stop getting worse.
Laters Ginger
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