Arimidex - Coping with the SE's
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sacphotomom - lots of times the initial reactions to Arimidex go away within the first 3 months or lessen greatly. The joint pain, sadly, is not one of them but the heavy hot flashes and night sweats do get less with time - I have 'warm flushes' and no night sweats anymore at all.
The MOJO thread is a good one - I swear by the Karma Sutra products.
Caerus (I just can't get used to you not being sunflowers...LOL) Yes, the muscles/tendons do need to relax and then get strengthened - now that the pain is becoming manageable - I can start to do that but since the mets is all in my spine right above the disc issue, I have to be a little careful about any 'rough' manipulation so the bed top yoga was a good place to start and then move to the yoga in a chair which will then really begin to work on strengthening the 'core' so I build the muscles to support the spine. I will never be pain free but as long as it is manageable, I will accept 'better living through pharmaceuticals and continued eastern medicine' - as long as life isn't one big ball of pain - then that is LIVING with mets...LOL
Happy Friday All!
Low
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sacphotomom I find that Replens seems to be a popular product too. I've been lucky as there have always been a few left in Walgreens. Have you tried purchasing it online?0
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Oh so Caerus used to be Sunflowers? That's funny because I went into the "Member List" to see if Sunflowers was still around as I remember enjoying her comments. But she hasn't "been seen" since December. So okay, now I know that Caerus is Sunflowers.thanks.
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I remember her saying that she is an artist and I am an artist also, so that is why I made a mental note of her ID.
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Caerus/Sunflowers, how about posting a painting for all of us to see?
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Lago ...Going to try buying Replens on line that's what I came onto do today but had to stop here first. read up on all talk. first thing I seem to do these day is check on BC.org first.. lol any way have a great weekend everyone!
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Lowrider, I so agree with you it is hard to eat a glutin free diet. I will say I really know when I do get glutin though. The other day I made habergers on the grill, so of course I wanted a bun with it. Well I really had joint pain the next day.
I've found another SE from the little yellow pill, it's dry eyes. Saw the DR. yesterday, and now I have to use trops several times a day. If that doesn't do the trick he will be giving me a perscription sronger dry eye drops.
As far as the DR's suggestion for estrogen, this is the same DR. who didn't even look at the mammo at the beginning of this saga who thought it was my 30 year old daughter who had brest cancer. What the heck. Yes I am reseaching to find a new GP.
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Good move, Kira, on searching out a new doc in whom you can have confidence. I've been through several in the last couple of years, initially leaving the one who found trouble in a mammogram but did not share that info with me. That delayed my mastectomy & subsequent treatment one & a half years!
I'm going to do better at the low gluten diet and see if the joint pain lessens. It's so convenient to say "yes, please" along with everyone else.
I need to remind myself that doing things the same way will not bring about different results. So many things in caring for myself I can do better. I am proud that I've given up all alcohol at the age of 62, knowing that sugar is a cancer-feeder.
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Hi,Painterly,
My computer crashed - and I couldn't rremember my password - couldn't get online, so changed my registration - now I learn some people "change their identities all the time" -mostly it seems not for good reasons - anyhow, tried to get Sunflowers back - and was "told" by BC.org screen it was already taken
I am still in Western MA, eagerly awaiting SPRING - it's all of 30 today - a bit of snow still around.I am a real beginner at drawing - and love it - now using soft pastels, I call it finger paint for grownups! Have a digital SLR camera I someday plan to learn to use
mostly I like doing lanscapes ( have a zillion old calendars I cut up and saved & use for "inspiration') also love the picture SoCaLisa posts on several threads. Have also used watercolor paints, but they are SO unforgiving - and I tend to over work them. Also colored pencil - some incredible art being produced with colored pencils now. Love the Faber Castell Polychromos...Hey, maybe we should start a Lets Inspire each other to CREATE thread????
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Hi Caerus,
Great idea about starting a creativity thread! I have a few questions/comments for you, but I don't want to hijack this thread. So if you don't start a new thread I will comment on the thread where SoCal, and SV post, because they are artists too, although SoCal says "she is no artist" but her photography says otherwise! (It's the one BarbaraA started.
Glenis
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Painterly ..If your starting a new one on creativity.. I'm there.. Nothing brightens my mood like looking at art. I inspires me to get out there with my camera.
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Ok ;-) Thanks for the support. I've started a thread on the Friendships after treatment forum. Wow, just wrote it and can't even remember the name - CRS!! Well, I'l go back & find it: Let's Inspire each other to be Creative.
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Hi, I'm new here. I've been on the Arimidex generic, Anastrozole, since Feb. 8 this year, after bilateral mastectomy on 12/29/10. I already had some joint pain and haven't noticed more, but the little toes on both feet have become numb and swollen. I didn't have chemo, so I think the numbness must be from the Arimidex but my oncologist said she'd never heard of numbness from Arimidex, only from chemo. I'm taking a bunch of supplements recommended by a preventive medicine doctor to fight potential bone loss and the oncologist insisted the numbness must be from a supplement. I've eliminated each supplement, one by one, but my toes are still numb. I'm wondering if the generic is slightly different from the original Arimidex. Anyone else having numb toes who hasn't had chemo?
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Maryblast I was supposed to start my anastrozole on feb 8th too but started March 1st instead. So far I still don't have joint pain just heartburn issues but I'm not sure if that is left over from chemo. I'm still having fluid retention but again I'm not sure if its still left over from chemo, herceptin or anastrozole.
I still have a numb heel left over from chemo. I also know someone else on this board that developed some neuropathy after chemo was done. I've been told that most of the time (those of us who got mild neuropathy) will go away with time. I would ask your onc if it could be nueropathy from chemo that can be a SE from the taxanes.
BTW are you taking vitamin D and Calcium to prevent bone loss?
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I didn't have chemo, just the aromatase inhibitor, so the numbness has to be from something I'm taking.. Yes, I'm taking mega-doses of calcium and vit. D; my blood D-level so far is 45 (oncologist told me 40-60 is target). Also, I bought a treadmill and am 'walking' every day rain or shine, speaking to my bones, telling them to get busy and withstand the chemical effect.
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I just took myself off of Arimidex, the SE's were through the roof. Joint achiness, tiredness (more than usual, which is saying something) and the emotional SE's which were awful. I will talk to my hematology oncologist after the radiation. One assault on my body at a time. I am wondering if it is really worth it. Want to sit my doctor down and get him to give me percentages.
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Marybast,
Time to educate your doc. The swelling IS from Arimidex. Food contributes to it, and since taking A I have stopped using salt, had to. My "cankles" look like they had been transplanted from an elephant! I hurt my knee, misstep on ice a few weeks ago, and after a while sitting, the knee I hurt swells down to the anke (cankle), treestump thingie on the bottom of my leg.
Walking helps - keeping it elevated while the muscles, tendons heal, not as fast as they did years ago either, which is another rant for another day
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I develooped neuropathy from Taxol, my last four chemo treatments. It's still present in my left toes and possibly my left hand (though it's hard to tell with the carpal tunnel syndrome, also aggravated by something.) Isn't this a delightful mind game, trying to figure out what results from ehat?! Sheeeez -
My treatments were sequential. First chemo, then radiation, then neurologidal treatment of brachial plexus nerve damaged in radiation, then Arimidex onset, then lymphedema therapy. A lot of things not part of the advertised package at diagnosis
I have said, "There's a lot we're not told in LaMaze." This is similar, I guess.Everything is noticably less problematic when I abstain from all alcohol. Alcohol, of course, is a bad idea for us anyway as it actually causes BC, then the metabolized sugar feeds it. Still, who appreciates a glass of wine more than we gals who've been through so much? Catch 22!
Best to us all -
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Caerus & I were posting at the same time. Interested to read of the connection with swollen ankles. I've noticed my left ankle (left again) a bit swollen, not horrible but enough I noticed.
Oh, to have a crystal ball and see what's ahead. A mixed blessing, I realize! Ideally, a do-over ... I'd be up for trying this whole thing with surgery only, no further treatments. Would need a crystal ball along with that risky choice, for sure.
Sometimes I think how ironic it is that I'll never know if my treatments were the way to go or not. Only living it more than one way would reveal that answer and that's not possible. My chemo complications were severe, my body warning me repeatedly this may well not be the right path for me. Well, enough of that pontificating; just thinking out loud with fellow BC sisters who might actually understand my ramblings.
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I took Gabapentin while undergoing Taxol so I never developed neuropathy - everything else including shingles but not neuropathy. I also did not exercise during chemo or radiation - I was flat out exhausted and dealing with a lot of joint pain from the Taxol.
I started walking again on January 1st. Been walking every day since in the evenings, rain, snow, sunshine - doesn't matter I will walk and I am feeling better. I don't know if this is what is helping me now from not experiencing more joint pain from the Arimidex? I hear everyone saying how good it is to exercise even if it is just walking and I hate to exercise other than when I am riding my horse.
Is exercise that beneficial?
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Yes, it is!!!! Not only for the SE of the anti-hormonals. It is also one of the biggest things we can do for ourselves to decrease the risk of recurrence. Plus all the other overall health (physical and emotional) benefits.
Heaven, I waited until after rads to start Arimidex. I felt like one set of potenial SE at a time was enough to deal with. And from what I had read, waiting those 6 weeks wouldn't make a difference anyway. My oncologist was willing to do it either way, so no fight there.
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Speaking of shingles
I had the vaccination as soon after chemtherapy as I could - my oncologist wanted me to wait at least 6 months. So glad I had it. Have heard of a few friends getting shingles - ouch! that's one I'd like to advoid if possible. Suggest everyone asks their docs about the vaccination. Think it's mostly for women over 60????
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I haven't asked about the shingles shot (it is generally for the over 60 crowd); but my GP had me get a pneumonia shot the next fall after I was done with treatment (it is generally for given at 60 too) even though I was younger; because of the chemo, because can weaken the immune system. The oncologist never mentioned anything (but was fine with it when I told him), but my GP was very insistent that I needed to get one (good for 10 years). I will put 'shingles shot' on the 'to ask about' list. Thanks. Everyone who has done chemo should probably ask about the pneumonia shot too.
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Heaven - Please let me know if your onc gives a percent chance with recurrence with or without arimidex. I have only been taking it for 2 months and my biggest SE is hot flashes - 7-12 or more a day! It doesn't effect my sleep but I am on ambien cr which I want to get off of. I can't imagine coping with these hot flashes for 5 years! I know the next step is to try another hormonal but they all have hot flashes as SE's! I know I should give arimidex another month but I may call the Onc sooner (next appt is in may) and try Femara. I think I read somewhere that arimidex increases your chance of no recurrence by 12% but I could be wrong. My DH thinks that eating high fat foods increases hot flashes and i'm going to see if there is a connection by writing down what i'm eating and when the hot flashes occur.
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Zenith there are foods know to trigger hot flashes. Wine and spicey food is on the list but everyone has different triggers. I don't get many hot flashes anymore but I do think I get them when I eat at this one Chinese restaurant. Doesn't matter if the food is spicey or not. Mabye it's MSG.0
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Zenith - I probably wont see onc for a couple of months, but when I do, I'll post it on here. Should be an interesting discussion...
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HI Zenith - not sure if you want to try Effexor - My Onco prescribed is as I was having awful hot flahses as well. every hour all day and all night. I'd be dripping wet. Within 6 weeks of being on Effexor - the hotflashes are 99% cured. I only get them now if I drink wine or alcohol..
Good Luck
Bevin
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Pristiq has just been approved by the FDA for hot flashes too. I'm lucky, I only get warm flashes, most of the time I can't tell if it's me or the weather (since I live in a desert). but at home, clothes on, then clothes off, on, off, on, I'm never satisfied. I also drink a large glass of cold water, helps some.
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Pristiq is long acting Effexor...Effexor is also used in low doses for hot flashes...
VJSL8.....its wondow open, window closed, covers on, covers off!!!
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April 15th will be my one year anniversary of starting Arimidex. I still have joint pain every day, but like Ruthbru, I will continue to be thankful for this drug. It is a big gun in my arsenal as I'm 80% ER+. I will take it for as long as I can and longer than 5 years if the research proves it to be effective. I had a lot of problems with trigger thumb and still struggle with carpal tunnel as well. I've had cortisone shots in my left thumb which did help. My right thumb can't get shots because of LE, however it is better since time has passed. I experience at least 5-8 hot flashes and night sweats daily. I take both Effexor and Neurontin for hot flashes and nerve pain. I still have a lot of shoulder, hip and knee pain. Med onc did a bone scan to check some new back pain that I was experiencing a couple of months ago and thankfully it only showed degenerative changes but NO CANCER! Relief just overwhelmed me! I sobbed like a baby at the good news. Taking an AI is no picnic for me, but the alternative for me would be worse. Psychologically it has helped me greatly with anxiety. I know that I'm doing everything that I can to prevent reoccurance. I can understand why some of you come off of it and I also understand those of you that remain on it. It's a very individual decision.
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