Arimidex - Coping with the SE's
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HI ALL
With respect to Claratin users/ would be users, I take one pill,usually in the morning. it is supposed to be the "non-drowsy" kind of anti-histamine, so I don't take it at night in case it might keep me awake. What I notice is that the swelling has gone down in my feel and hands and hence some of the pain. It definitely takes the edge off for me. Best, Beau
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Sunflower - I have been reading that five years is not the norm anymore for some people. I am afraid I will probably be one of those people since my ER was 98%
I still have a few years to go before I have to worry about it. Maybe by then they'll have it figured out.0 -
don23, I've only been on the Arimidex (generic) since Septemember and at my list visit, the oncologist told me he might have me take it for 7 years depending on the results of a study going on now. They'll probably be finishing up a 10 year study by the time I reach 7. My ER was high, too, so I figure I'll be on it for the long haul.
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Claritan does have side effects. Most are not any problem fro most people. I can't take it because it makes me throw up. Zytec helps some but not like the Claritan. I take it everyday but when I was on the neulasta shots, I took an extra dose on those days.
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My MO also recently said the standard is moving more toward 7-7 1/2 years. Thought I only had 2 more years but he said I can expect 4 more now.
katiejane, I also have a problem with words, like finding the correct one. I used to be so good with synonyms and now I can't even remember the word I want a synonym for. It's annoying but, for me, not a show stopper on A. As for memory, I just stay in the present and look toward the future. that way I don't have to try and 'remember'.
Not sure how much is attributed to A. Probably a combination of that and age (I'm 63).0 -
When you talk about joint pain, do you mean knees and wrists, etc? I'm been on Arimidex for about three months and I have general stiffness and pain in my entire hip area. I don't have any other joint pain.This is fairly recent but i don't remember if it started before the Arimidex or not (no memory either). If i'm moving around it's not a problem, but if I've been sitting for a while, when I get up I feel like I'm 80 and it hurts to walk. This is distressing. Is this AI aggravating arthritis or just the AI? Others feel like this?
Insomnia has been a problem as well as night sweats, an occasional hot flash during the day. I have a neurological problem that compounds my sleep problems. Saw my MO last week and she put me of a low dosage of Effexor for the hot flashes which has helped some.
It seems like I'm in bed for 10-12 hours a day which isn't going to work for me for long. I'm at normal weight, and work out 1-2 hours a day and I eat a healthy diet.
So, I'm not on top of my game. I'm rarely feel my energetic self anymore. Tired and draggin my feet though I push myself to keep moving. But way before this nightmare started we had planned an 8-week motorcycle trip out west where it'll be hot. I'm going to have to be alert and on my game if I'm going to survive this trip without killing myself in the Rockies on my motorcycle. I can't behaving hot flashes under full gear in 100 degree weather and I'm going to have to sleep. I talked to my MO about stopping the AI for the 8-weeks we'll be on vacation and though she hesitated she agreed as long as I start it again as soon as I come back. I really don't know what to do. I imagine if I do stop it'll take a couple of weeks to get it out of my system, so I should stop before we go??
Any comments, suggestions? We leave in a month and I need some input. You're a great group. Thanks for being here.
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You'd have to stop for a week or so beforehand to feel a difference. I've taken mini-vacations from Arimidex and there's a startling difference. All of your symptoms are similar to how I feel - the lethargy, joint pain and insomnia. I also have night terrors, restless legs, and a bunch of other crap I can't think of right now because my memory's affected. GAH!
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Been lurking ... Not much to say lately ...
Arimidex brain for me is much much worse than chemo brain! Chemo brain was like a fog. Arimidex brain is exactly like sunflower said - Swiss cheese. Full of holes. Stops me mid thought, mid action. I hate it!
Joint pain is bad - feet, hips, shoulders and hands - going to see my PCP to start PT to see if that helps.
Oh! And osteoporosis - I had a bone density test - I'm at -1.9 (osteopenia is -1 to -2.5. Osteoporosis is anything lower than -2.5). They said I have increased fracture risk already! Really? I'm 41!!!! What the heck is this drug doing to me? And what will I be like years from now when I'm on it for so long????
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I think we all have the memory issues; may or may not be A related however.
nancym712, just like the se's start at different times for each individual, they may also take their time to go away. I've seen some sisters on these threads that still had some se's weeks and even months after stopping. It may depend on how long the person was on but, again, it could be different for each. Have you tried changing the time of day you take it? Maybe that will help with the sleep issues? Are you investing in moisture wicking clothing which may help with flashes in that heat? I'm glad you are being proactive because that seems to be a pretty taxing trip. Good luck.
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nancym712 - yup, sounds like your an official member of the A Team. For reasons known only to those who haven't figured out why yet ( hope that doesn't make sense, cuz none of this does IMHO) the 3 month point, is the real KICK IN LEVEL for SE's.
Mine were so bad, my oncologist had me stop for 6 weeks Went to physiotherapist, so my hands wouldn't stay as claws for the whole day, did exercises, slept in wrist splints. KEY CHANGES FOR ME:
Gluten Free diet. NO SUGAR. NO "whites": sugar, pasta, rice, bread. Almost no dairy. Mnthly MASSAGE - and the BIGGEST CHANGE AGENT: ACUPUNCTURE. I go once a month. Don't think I'd be able to function without it.
I'm in my 5th year - and I KNOW I'll be taking it for several more years. Don't know the %E+, but my docs at Dana Farber have already told me it's more important then the chemotherapy I had.
he bad news, nancym, I haven't found anything that deals with the HIDEOUS feeling of ASTHENIA ( listed as main SE for highest percentage of women on AI's) - never even heard of the word before,
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NancyM.....before you ascribe everything to Arimidex, I want to remind you that just regular cancer treatment takes some time to recover from. Are you eating enough protein??? That also helps you have more energy as your body rebuilds. Really important to get some in the AM.
I am an exercise fanatic. I cycled through the whole deal, only missing some time last month when I wiped out on RR tracks thinking I could make it back to my car when caught in a sudden hailstorm. So, I might have some brain issues.
One thing I can say is the more you sit around, the more things hurt. This is true as we get older and has nothing to do with a breast cancer diagnosis.
Even with an active cycling schedule (about six major cycling events) the summer post treatment, I found it took about six months past radiation before I got to full energy. Then another couple of energy boosts the following year. So this is a process.
I took a lot of ibuprofen that summer as had joint pain leftover from Taxol. It slowly went away. I don't really have hot flash or sleep issues. Last night, I couldn't wait to get to my bed. I was feeling my two weekend training rides.
Anyway, have fun on your trip. It sounds like a blast. - Claire
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Claire,
I'm glad you're coping well with the Arimidex. However, that's not the case for everyone and it's certainly not for me. For me, exercise helps with the fatigue but does nothing for the pain. In fact, I think it makes it worse. Trying to push myself to do more, to work harder, exhausts me and leaves me in bed cuddling my bottle of hydrocodone.
I do NOT want to live this way and I don't want to be the Eeyore of the A-Team, but this is my reality.
And my tail fell off again. It's always somethin.
;-)
Scoot
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I am well aware Scootaloo that some members of the A team have an unbelievable ordeal. That is why I thought it important to show Nancy the other side. Plus, I do think that she is quite likely still recovering from active treatment.
I am not the only one who believes that exercise can be helpful. Melinda Irwin, who is at Yale, is doing research as I write this, into the benefits of an exercise program for patients taking AIs. It might still be open, and if so, I would urge Nancy to look into it.
I am glad Scootaloo that exercise helps at least with the fatigue. I am so sorry about the pain. So still worth doing. Hoping that things turn around for you soon. - Claire
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I take my Arimiex in the morning and I do have moisture wicking bed clothing.
I did not have any active treatment. No rads, no chemo so I'm very lucky. I feel like I'm being a whiner complaining about these side effects.
I have been a lifelong exerciser and missed very little though I had three surgeries in 3 months. I work out, aerobics, weights, stretching and yoga. 1-2 hours a day. Between being in bed 10-12 hours a day and exercising, this is my life.
I also eat a healthy diet. I am a member of a CSA so I get organic fruits and vegies and grass fed meats.
Not sure what wlse to do. I'm seriously thinking of stopping the AI for 8-10 weeks. Any other thoughts?
Thanks for your input.
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I also joined a CSA, nancy! Last year was our first year and we re-upped again for 2012. I can't wait to go pick up my first share!
Hot baths help me a lot, nancy. The therapeutic effect lasts 1-2 hours so that's usually when I walk my sister's dog. It's also great at night because it helps me get to sleep.
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I just looked up asthenia. Yes! I have this SE too. I have been doing squats for years with heavy weights, I have strong legs, But since Arimidex, when I squat down to look at something on a low shelf in the grocery store, I feel like I have to pull myself back up with my arms. I have trouble picking up my motorcycle off the side stand and that's never been a problem. It's getting better the more weight work I'm doing and the longer it's been since my TE surgery but distressing.
I'm really leaning towards stopping Arimidex about a week before my vacation. I really want to enjoy it and not be fighting my way through 8 weeks of what should be a great time.
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Hi everyone, I started taking Arimidex on March 17th. I had insomnia for over two weeks. It was brutal. I would take a half of a xanax pill to sleep. I was fine until about a week after. The bottom of my feet were hurting during my workouts. I thought it was my shoes. It got really bad when I went to Disneyland a week after that. I was in such excruciating pain. Each step I took was like reliving back labor all over again! I gained a lot of weight since my surgeries began and thought maybe that was it. But I had done plenty of walking before Arimidex and didn't have any problems. I can only assume that's what caused it. I have been back with my personal trainer for two months working hard getting back to my pre-cancer fit self. I do intense weight and cardio programs at least 4x a week but I average about 5. I have not had much of an issue with hot flashes. I think I have them sometimes, I get warm but I don't know if that's my office or what. I'm 41. In addition to the Disneyland fiasco, my ankles are stiff in the morning. I walk like a robot cause I can't bend them or my toes at the ball joints. My neck also hurts. I have mild arthritis at C4/C5 and C5/C6. My vitamin D levels were low and I was prescribed 50 thousand IU a few months ago. My drs have since lowered that to 2 thousand IU a day. My B levels were also low so I get B12 shots. I started taking 1600mg of calcium and fish oil pills. I'm hoping that this will stave off the bone degeneration that I know Arimidex can contribute too.
I'm afraid to go walking long distances ever since Disneyland. I hate it. I have an appointment with my MO in a month, I plan on discussing this with him. I thought about not taking it but I thought I'd take a for a few months just to see if the side effects would evetually peter out. Do they???
Also, I developed a really bad rash on my elbows. It went away on my right side but the left side keeps flaring up. Little bumps all over it and itch so bad. Anyone else have this problem?
Other than that, I eat very healthy. I've got my eating back on track, no starch, processed foods breads or pasta. The workouts help exhaust me so I can sleep at night.
I have brain farts too but that's not necessarily Arimidex. My brain hasn't been the same since all of my surgeries. My brain used to be an iron fist when it came to remembering the finest of details. Now I'm lucky if I remember to use toilet paper after I go to the bathroom! I joke but you know what I mean.
Michelle
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To BCO:
Disrepect is in the eye of the beholder. Your removing threads about alternatives because they are not pro chemo is really revealing about what you care about. It is not the women on the forum.
You, moderators, are censoring anything that does not align with your beliefs of a chemo only approach. You are NOT doing those of us who are suffering from breast cancer any favors, and we WILL and have found alternatives despite your Gestapo tactics. Ban me, do whatever you want to. Your not allowing newbies to be able to read all options is what is scary. To limit these women is criminal. Hope you sleep good at night but then I guess you would with all your pharma connections.
You allow disrepect by allowing rudeness to prevail....you haven't banned Black Cat, orange or digger have you? How much do you pay them to monitor the boards?
YOUR tone is nasty, invasive, controlling and scary. Why don't we make BCO stand for Best Chemical Options????
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Tuckertwo,
I reported your post. It's both inflammatory and untrue.
Scoot
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{{{{{ HUGS }}}}} to everyone. Just felt we all need one right about now.
I think we all agree that se's are different for each of us; some have an easy time with this AI and others just can't tolerate it and have to try something different or stop altogether. Not one of us is any "righter" than the other. I thank everyone for the information and experiences shared. In the end everyone has to go with their own gut feeling of what is best for them.
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Thanks, Patoo-right back at you.
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Good advice, Patoo.
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nancym712: Wow, a motorcycle trip sounds awesome! (I also ride. In fact, it was a low slide while test driving my motorcycle that made me find the lump that turned out to be cancer. The bike that saved my life!) I was on tamoxifen before I switched to anastrazol. I had lots of hot flashes at first, moreso with tamox, but I quickly discovered that whenever I had any sugar (or alcohol) I immediately had a hot flash. I also seem to have one in the morning when I'm having my hot decaf. I was lucky enough to go to the Nobel Prize events last year, and went off my meds for that period -- I did not want to be having hot flashes while dining with royalty.
In addition to diet (high protein, low sugar/low alcohol) and exercise, I highly recommend acupuncture -- it is excellent at alleviating every SE I had along the way: hot flashes, low energy, mood, aches, pains, nausea, diarrhea, neuropathy. It is offered and recommended at my cancer center, and I began it 2 years ago when I went through chemo, then rads, then tamox and now AIs. My acupuncturist has also got me on herbal supplements and a traditional Chinese reishi mushroom known for its anti-cancer properties. I felt pretty good before I went on the supplements but within days I felt great! It's been several months now.
mrchon: I had that foot pain as part of my SEs when I started AIs; one night I couldn't get off the couch because it was so bad; even my toes hurt. It was excruciating. That was the night I thought to try Claritin to alleviate bone and joint pain. It worked for me overnight; it has subsequently worked for many women here (not everybody, but many) -- might be worth trying for your symptoms.
Though I've had a sampler of SEs from AIs, they've been very manageable (esp. once I figured out the Claritin thing for bone/joint pain). I had a much rougher time on tamoxifen last year; my doctor says it's usually the reverse, but I feel it's at the point where I can get through this for the relatively short term.
Cheers,
Susan
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It's odd how our bodies process and respond to different medications. I had almost no side effects from the Tamoxifen other than hot flashes and osteoporosis (not discovered until after I'd finished tamoxifen). Arimidex has been debilitating.
Horseback-riding has done wonders for my Arimidex-related hip and knee pain, at least when I'm on the horse. It's probably because my hips and knees aren't bearing that much weight and they're constantly and gently moving.
Claire, sorry for snapping yesterday. I'm convinced my onc believes my side effects are all in my head, so I'm over-sensitive to other peoples' comments re: gluten-free, exercise, etc. I've tried everything I can think of and I still have horrible pain. It's maddening and frustrating but that doesn't mean I can take it out on you. Sorry!
Scoot
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Scoot, I've been through times, in the past 5 years on Arimidex when the pain was honestly unbearable, now in a fairly good time. I've tried everything, and can't point to one thing that seems to keep the pain away. Honestly, wish I could say "THIS" is IT, DO THIS, but for me, it feels to be a combination of so many things.
My experience with ACUPUNCTURE, is very POSITIVE, as Susan above says. But I think it's only part of the "puzzle" - CLARITIN, which I've started taking every night is making a positive difference. I stopped taking it for a few days to kinda "test" it - and well, I was a heckuva lot creakier when I woke up this morning. No idea if it has long term SE's - but it's so damn cheap, generic ( Costco, of course) that I started taking it again.
So sorry you're having such pain - keep up the riding - meanwhile, I really wish you could figure out a way ( bartering? time Banks?) to try acupuncture. My knee pain was inflammation/osteo arthritis related, exacerbated by Arimidex - the perfect "target" for acupuncture. Thinking of you!
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I have only been on Arimidex (anastrozole) for almost 3 months , so I am not sure about side effects yet. The only things I am struggling with is extreme female driness, still tingling numb fingers, and extra hot flashes. Does it take a while for other side effects to appear?
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Zumbagirl, I've had none of those SEs. Sorry you are dealing with them.
On the Claritin front, I'm hesitant to take another drug. Although, if it takes away foot pain like I had experiences, I'll try it! What is it about Claritin that works?
Michelle
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Hi Michelle,
I am one of the folks who started using claratin recently - almost 2 months now. I am not sure anyone knows why it works (anybody got a theory?), but I have noticed that the swelling in my hands and feet have gone down (and so has the pain) as well as general joint pain. The pain is not gone, but it is more manageable. I have cut out taking NSAIDs most days, so i consider it a good trade off.
I would love to hear other folks chime in if they have any idea why it works. Best, Beau
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Hi Scoot....It's fine. I am buried in work. Had a funny scare today. Got back from my walk and fingers were numb. It actually was because I was caught in the rain, and chilled to the bone. I couldn't type.
I never did Claritin as cold meds are usually bad news with me.
I do have a champagne buzz as celebrating a friend's good news from a lady parts incident. She was fearing the worst, but they removed the uterine polyp during the exam!!! She is fine, and not even a follow up visit. Talk about good news!
Plus thrilled to have lots of work as lack of funds crimps my style.
Salmon dinner with fresh asparagus was delish. I am on to "living well as the best revenge".
Off to bed as need my brain to tackle the Seven Labors of Hercules in the AM.....Gordian Knot plus Riddle of the Sphinx.
Hoping for sunshine. - Claire
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Hi all, Re: Claritin: My nurses recommended it the day of/days after my neulasta shots (day after chemo infusions). They didn't know why it worked to alleviate bone pain from neulasta, but they swore it was the most effective preventative. The one time I didn't take it, I had bone pain...
My nurses didn't suggest Claritin for the bone pain from AIs, I just recalled the advice from chemo days and tried it on my own, out of desperation one night. It's been magnificent.
I get intense seasonal hayfever and go through 4-6 month spells where I take Claritin, with no long-term SEs from that, so I'm not worried at this point. My doctors and nurses had no concerns about long-term effects.
I don't know of any formal studies regarding the relationship between Claritin and neulasta-related bone pain and/or AI-related bone pain. It would be worth studying! I do know my doctor has already begun recommending this to patients encountering bone pain from AIs.
Fwiw, I'm not one to pop pills -- I always prefer nutritional or natural solutions and preventatives. But in this case, I'm glad to have found something that works, and even more thrilled that it is helping so many other women! Wish it worked universally but, as we've all discovered, everybody has such individual responses to all of these things.
Cheers,
Susan
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