Arimidex - Coping with the SE's
Comments
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Beau thank you for writing. I am on a month break from Arimidex and it was helpful to read your post. I expect to go back on it and hope the research that says some 55% of people who take a break have milder SE's when they go back on it. I think I need to look at your statement about taking whatever meds you need when you need them. I too am very reluctant to take the painkillers or sleeping meds because I am so afriad of addiction and becoming out of control. Thank you again for writing.
Ginger
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Hi ladies,
I get so much out of reading everything everyone writes on here, I have been having a bad day, crying on and off all day yekkkkk, I hate it. I know with everything and now just having my hyst/oop on Nov 4th does not help matters, but damn the joint pain I have been having I really wish it would stop or just hit me every now and then but no, everytime I get up from sitting my joint in my knees kill me and take a min before I can walk right I feel like I am 80 years old and I am only 47, will the thumb pain stop after a while, when I wake up in the morning or at night my thumbs snap at the joint and are very stiff if I get up in the middle of the night like evey night I try and not bend my thumbs because I know it will snap at the joint and I just want to get back to bed because I am not a good sleeper anymore. I wish I could sleep with out taking something and when it tells you to make sure you can get 8 hours of sleep well I am only good for about 5. Sorry to bitch so much today but it is just one of them days I guess I am just feeling sorry for my self and should just be happy I am cancer free and alive. sometimes it is just hard to think that way with all the SE. Thanks for listening. Hope everyone had a great Thanksgiving with their familys. Love you guys thanks
Pam
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Pam I understand, sending you gentle hugs.
Ginger
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Thanks Ginger, I guess it is just one of them days. I always feel better after I get on her and talk to everyone and just let it out to people who understand what we are all going through.
Lots and lots of hugs to all
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As far as healing goes; along with all the things we should be doing to ensure good physical health, something I would suggest for emotional healing is to get involved (or re-involved) with things you really enjoy. If you've always wanted to take a painting class, or auto repair class, or a cooking class, or learn to speak Chinese, or sing in a choir, or try Zumba, or kickboxing, or join a Book Club, or dye your hair purple, or take a dream vacation...whatever......if you are doing things that are interesting and/or challenging, it gets you out of yourself and some of the 'cancer stuff' can take a backseat, or even be forgotten for awhile, and that is a really postive thing!
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Pam - what really helped end my joint pain was mainly two things: GLUTEN FREE, and ACUPUNCTURE. Have no words to describe what a difference those two things make in my life.
Beau - Cholesteral. I got mine down from 206 to 186 in a year. KEY for me, was going Dairy Free - I ADORED cheese, and ate too much of it. Didn't lose as much weight as I hoped, but was thrilled to see those numbers go down. Also, thanks to Ruthbru, I take Slo-Niacin, and I've increased my Nordic Natural Fish Oil, also eat Oatmeal for breakfast most days, and a handful ( small, less than 1/4 of a cup) of almonds a day. I haven't eaten red meat in so many years, so that was't a factor for me.
Don't use much butter, use Smart Balance most of the time. Cook with Ollive Oil. Canola Oil if the temp is going t be ver high.
GOOD LUCK. I really think you can do it without statins....
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SunflowerMA,
Thanks for all the ideals which I will start using today.... I have heard so many good things about gluten free I have been looking for it in the stores. I am going to try the Acupuncture..
Thanks again, have a great week.
Lots of hugs Pam
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I was on Tamoxifen for 2 years and switched to Aromsin 4 months ago. I have had hip discomfort even before startjng Aromasin especially at night but it so much worse now. My thumb and wrist joints are so painful, knees, hips and now my feet are hard to stand on when I get up in the morning. If I sit for 15 or 20 minutes, I am stiff and in pain pretty much all over. Now my upper spine hurts even to touch a few of the top vertebrae. My doc wants to send me for a bkne scan to be on the safe side but he feels it is most likely the Aromasin. I don't want to have a scan unecessarily but then I again I want to be certain that it's the Aromasin and not mets. There must be a way to differentiate the pain of mets to the pain of Aromasin. I am so worn down by pain and discomfort and I usually have a high pain threshold but this is everyday and especially at night. Any suggestions....?
Thanks
Beth
I posted this somwhere else first because i thought this was only for Arimidex.0 -
Hi all,
ginger,
I know that we are all individuals with different reactions, metabolisms, pain thresh holds, etc. That said, I reached a point when I wanted to quit Arimidex because the day-to-day pain was just wearing me down. I was cranky with my kids (!) for no reason and just constantly aware of how different my physical and emotional well being was compared to before BC.
I realized that my desire to quit Arimedex was at odds with my desire to do all that I could to beat this nasty disease. Hence, my moment of truth came when I went to renew the prescription, Yup, I re-newed it, but sent my onc an SOS at the same time. I took a break.
My onc gave me ma series of options : go back to Arimedex, switch to another AI or even go with Tamoxifen, He also said that going on an anti- depressant could help with pain as well as feelings of despair.He said that his instinct that was a lot of my discomfort stemmed from my herniated disks in my neck so he sent for a series of tests to rule out worst case scenarios. He gave me a script for a muscle relaxer to help with the muscle spasms that I had developed in my jaw and neck since chemo, he also gave a script for a sleeping pill since I had a lot of insomnia since starting Arimidex.
In the end, I opted for QOL with arimidex. I cam play tennis again, I log in 16 hour plus days. I walk an hour a day most days. Taking various medications for muscle spasms and sleep have been key. I no longer need pain killers unless I have a long drive or particularly long day.
So, please weigh all your emotional and physical challenges and figure out how to improve your life. Medications are only part of the solution. as Sunflower alluded to, diet and exercise can be a huge factor as well. I attacked it on all fronts.
Who knows how it will end. I am really at peace with where I am know ( not that I don't have bad days - I do!). My close friend, who was in my wedding and had breast cancer ahead of me is tough as ,nails. She said upfront: treat the psychological part of this disease as well as the physical. They are inseparable.
Some folks sail through with limited side effects, but if you have significant pain, then taking a pill to manage that pain is not the same as taking a pill to experience a "high".i mean, really, when I take a diazepam or zolpidem, it is strictly utilitarian; the muscle spasms in my neck need to calm down, I need to get some sleep. I am careful not to increase the dose. I switch drugs when I feel that their effectiviness is wearing off.
All in all, the trade offs have been worth it. I still have pain, but it is more manageable. I am lifting weights again and doing yoga. Tennis is a regular activity. muscle spasms come and go. however, when I go Naked with only Arimidex and no pain/ sleep control, life is ugly. I still believe that if I keep working on my diet and exercise per Sunflower' s suggestions, I will be able to give up more meds. In the meantime, life is good....
Good luck with your journey!
pickle,
I honk that I responded to you on the Aromisin thread. Hopefully, other folks will chime in as well. I hope the bone scan is a non- event!
Best, beau0 -
Beau
Thanks for the great post. Your suggestions are commendable. I hate taking meds but if something is going to help me get through then i am going to check into it.
Sunflowers great Remedies too.
I need to get on a regular exercise program as I have turned into a slouch on the couch. I am 50 and this is the first time in my life that I have ever needed to lose wight. Getting 10 pounds off would be a thrill. I know that exercise will help but my motivation is pretty much non-existent and yet I know it would help me feel better. Vicious cycle I have gotten myself into.
I sure appreciate everyone's input
Hugs
Beth0 -
Ginger,
The Arimidex is a bitch but I will kick it's ass just like I am with BC. I just need to figure out the right combo. Thank for the info.
hugs Pam
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Yeah, More Gluten Free Pain Free members of the A Team.
Just got the results from my Cholesteral! WOW! great news ( yeah, no flush SLO-Niacin) and being Dairy free, WOW, just wow. And I am a Cheese Addict ( not just a LOVER, but an addict
Living alone makes these choices much easier.SO, Triglycerides down to 35. Jeez - I thought it was a typo! LDL down from 131 to 88! YEAH, ME! And HDL, up to 85. Total: 183. That's down 20 from last year, but stilla bout 20 above what it was br bc, 4 years ago.
NOW, if I could only get myself moving....I have the Denise Austin tapes, moved the coffee table out of the room, so I have a little room to move, and, I am more likey to go to paint with my soft pastels, than anything else!!! I KNOW THE DRILL - just do it. JUST DO IT. Yikes, I know all this, honestly I do. A friend suggested joining a gym - that's a 22 mile ( each way) drive - so I am gonna ( I really am) use these tapes!
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Pam it will settle down some with your thumb. It sounds like you are developing trigger thumb. Last week I could have cried when my thumb start. It hurts and especially at the base of the thumb. I also have neuropathy in the same area. I took some motrin and it eased it off. Now to learning to adjusting to the popping when you are doing things. I also have it in both middle fingers. You learn to do household stuff different. I found a brush with a big soft handle. Knife cutting Of Lord help me when it locks while cutting stuff up. You will adjust and remember your hormone loss is still playing a major roll in how you are feeling. It took a good six months before I adjusted from my surgery. I remember clearing crying over the fact I couldn't take my child trick or treating. Sometimes it is little stupid things that will make us break down and cry...commercials were a biggy for me.
(((((HUGS))))))
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Hey Pam - My trugger thumb required surgery to release it. My thumb was stuck in a straight position and I felt excrutiating pain when I tried to bend it. They discovered that I had ruptured the tendon, so they repaired it and I got instant relief. I was literally moving my bandaged thumb after surgery. Three weeks post surgery, you would never know that I had trugger thumb. What a relief. I'm not suggesting that everyone needs surgery to fix trigger thumb, but if it persists you might want to see an orthopedic doc. I have regained full use of my thumb. Fortunately the trigger thumb on my dominant hand resolved on its own. I still have pain and stiffness every day in most joints from Arimidex. But I am committed to staying with it. Hang in there and I hope you get relief soon.
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Has anyone else noticed that food is REALLY salty? I've noticed this for the past couple of weeks. I know it isn't, but it tastes overwhelmingly so to me.
Salty purrs,
Jenn
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Sunflowers, congratulations on the cholesterol numbers! Very exciting! Now put on Denise Austin, join her, and report in over on the 'Lets Post Our Daily Exercise' thread....I will be watching for you
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I went off Arimedex for 5 days while in the hospital fighting Breast Cellulitis over Thanksgiving. I had no body aches for 5 days, Now that I'm home and back on Arimidex in one day I'm feeling like a 90 year-old. I'm not sure anymore if I can keep this up.
Hugs,
Kat
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Kat, I know how you feel but talking about it with others here is encouraging me to forge on. It sucks but I am hooeful that in the long run the AI gives me some security that I won't get a receurrence. I hate taking pills but I have succombed to taking Advil or other pain meds to get me through the day. I was ranting on here a few days ago and stating that I wasn't sure I could do it anymore but knowing that I am not alone with these crappy SE's has helped. Today was a remarkably good day for me and I hope you have a day like this tomorrow.
Sunflowers, very impressive and a big congrats. Now if I could just move too. I'll have to check out the aforementioned thread..maybe we'll see each other there!
Hugs and encouragement
Beth0 -
Pickle - I GOTTA move, cuz my insulin jumped from 100 to 121! AUUGHHHHHHH!!!! No weight gain, no weight loss either, and - I never use sugar, do not eat any prepared food, no candy, no cakes, no cookies, and yes, there is adult onset diabetes in my family ( ugh!)
Wondering if all the good stuff which got my triglycerides down to 35 ( still think that could be a typo!) exp. Fish Oil could contribute to increase in glucose in blood??? Been googling around, and it seems chromium picolinate might help???? Anybody use that???
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You ladies are terrific....thanks for the support and kind words. Beau...the pep talk was amazing!
I agree with Ruth...do things you never thought possible or have been waiting for life to slow down to do...I paddle with a breast cancer dragon boat (and BOY am I missing them) and sing wih a women's choir...I am looking into a sight reading course this winter.....might as well stay intrigued and make my life easier...
As for the crankiness and weepiness- it is weepy for me all the way....I used to laugh as much as I cried....high pitched peels of laughter sweeping the teachers' room every day ...a lot...but that is not really happening these days....busy coping with pain and discomfort, i think. I take opliclone for sleep...gave myself permission with the diagnosis and have been on 10mgs for a year. I figure sleep is the MoST important thing right now. I wake up in pain with my back but I think it is the inflammation and possibly not the arimidex as it started pre-arimidex, I think....hard to tell now.
the 49-90 thing is what has me....I hAVE never FELT OLD...i WORK WITH PEOPLE IN THE AGE RANGE OF 24-30...THE TEACHERS i MEAN...THE STUDenTS ARE 16-25,,,oops sorry, Just noticed I was yelling....anyhow, I have NEVER noticed an age difference...people are people....bu holy dinah...do I ever notice a difference now....my energy is not spinning around the room..people are not running to keep up with me any more....my pace when walking is slower than everyone and my energy for BS is zero...which is probably a good thing.
I am only eating fish and chicken, have cut my cheese intake WAY down ..only drink organic milk (usually skim but 2% was on sale Sunday but this is the first time in about 6 months that I have had it)...no sugar in the house or I will eat it...drinking my water (finally)...taking vit D (4000 iu), calcium (1200-1500), CoQ10, fish oil....eating fruit and salad...dates for vit B12 to try and pick up my mood and energy...going to massage therapists, chiropractor, naturopath and have put in a call to the counsellor I saw last year ...figure I need to yell somewhere or wail...one of the two...
I came home to a surprise letter in my mailbox...apparently I have an appointment with the breast surgeon Thursday next week...I am assuming it is a check up they do????I plan to ask her opinion on Armidex....
and yes...knowing folks are out there who know what this is all about helps a heckuva lot...I will continue with arimidex for awhile longer...see about the swelling and will check in wih my lymphodema massage therapist in two weeks to see what she says...I am retaiing fluid in my hands, arms and chest...not what I want as the idea of lymphodema sends me over the edge
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I noticed that my WBC count has gone down from 5.5 % to 4.3 % the last three months. Has anyone experienced changes in their white blood cell count like that?
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Those counts will bounce around a little. I wouldn't worry.
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My WBC have been around 3500 since Arimidex and they were usually above normal range all through chemo and radiation. Weird. I think I'm more immune suppressed now than when in treatment. I had an infection and hospital stay that makes me think I'm really at risk now.
Hugs,
Kat
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So had session with my new acupuncturist yesterday. He's also an MD. Unfortunately he's not in my med plan so will be self-pay but I'm going to commit toat least six visits to see if I feel any changes.
He was pleased with my 'supposed' exercise. I say supposed because I've been off the last few weeks but he is motivating me to get back to it, adding resistance exercises. He suggested flaxseed oil as being better than fish oil as a supplement. I told him I thought flaxseed was contraindicated for ER+ BC and he did a quick Google and said it appears to be beneficial for BC, instead of something to stay away from. I know there have been posts on BCo but don't remember the "consensus" regarding it. Anyone can give a quick answer as to the pros and cons of flaxseed oil (and a source I can refer him to on my visit next week).
He also said 1-2 drinks of wine a day and was sad to hear I have a chocolate allergy! I like him, unlike the last one - thanks SunflowersMA.
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Flaxseed is still so controversial that I, myself, stay away from it. I guess I would rather be safe than sorry. I'd be careful about the wine too ....there was just a bunch of new research on BCO about how it does, indeed, raise the risk of recurrence. I wouldn't have more than a couple drinks in a week, if that
......he is right about the exercise though!0 -
I really need to rant - sorry- I had my latest 6 months checkup with onc on Tuesday. As usual due to anxiety (I relive the whole 6 months of treatment/surgeryand tests) each time I visit. my pb was up again. I have terrible white coat syndrome but this was really high and I am on bp medications for a year now. She decided to give me water pills to take-to help lower the pb. Hey, I have been on Arimidex for (4 years) where was her help this year? I believe she is now helping me because she wants me to continue to stay on them. Okay, I want to also but without being a bloated mess, even my face is bloated!
Anyway I told her I am usually 140over 80 at any doctors office. Wrong thing to say - now she wants me to go to my gp for a pb monitor and have him change my pb meds ( she thinks there are not as effitive as they could be) I am going to my gp tomorrow - I am sure he won't be happy that another doctor is telling him what to do . She did admit that the pb issue is from the medication she is giving me (arimidex) wonderful. Thank god I now know it is not anxiety . Sorry about the rant, I just needed to get it out. I know both doctors are trying to help me but I have to live with this everyday, not them. Hope everyone has someone to rant to and has emotional support. Thanks
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Just took my b/p 127/81 hum I guess the water pills work well with my bp medications. I will explain all this to my gp when I see him tomorrow. I still think she should have been on this issue and given me water pills years ago!
Thanks for listening.
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KittyDog,
Thanks for the info, I guess I am just ready to be done with this and get on with my life, I have found that my thumbs are the worst when I wake up in the morning and I just try and keep bending them I also at night watching TV us one of them squishy ball and it seems to help. I totally understand about crying at commercials they hit me to..
Rocket,
My thumbs do move they just snap at the joint but the more I move them the better they get.. I just have to give my body and the Arimidex awhile to get use to it and I do understand it will all not go away. Oh well life after BC will never be the same which I also understand it is just getting use to the new me.
Hugs to all Pam
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I have found running hot water over my hands in the morning helps my trigger fingers. they start to bend and quit snapping alot quicker when I do that.
Nancy
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Has anyone had constipation from Arimidex? I have been on it for 3 mos. and am just having this problem now.
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