Arimidex - Coping with the SE's
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Thanks Ruth
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I went to the optometrist today-no signs of cataracts. She did say I should come every year to check for metastases-hadn't considered that.
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Spunky - interesting what he said about metastases....I went to a dermatolgist just after my dx because of brca (melanoma of eye risk), but I got one lousy exam from this MD. I went to my Optometrist, who does a very thorough exam, thankfully, but neither (wisely) said I should come back annually for your reason. Ironically, I do have a pain in my right eye (unusual), for about 2 weeks now and in my research, if one finds a secondary cancer in the eye, it usually caused by lung or breast cancer. I think it's a good idea.
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Mets to the eye, oh my goodness, one more thing to worry about
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Hi Folks,
I've been on @%$#*! Arimidex for about 14 months now. I'm having a mini meltdown tonight because, on top of the usual menu of SE I've been enduring, I've discovered today that I'm developing cataracts. I'd noted some change in my vision, just in the past few weeks and, since I'm an optometrist myself, I was able guess what was happening. A look by one of my colleagues confirmed my suspicions. It would seem that I'm one of the lucky 5% that develop cataracts as a side effect of the medication. This is a form of cataract that tends to progress with some rapidity so I expect that I may be facing surgery within the year.
When I saw my MO a few weeks ago (before I noted the vision problem) I handed him a list of my side effects along with the comment that I'd aged 10 years or more in the past 12 months. (You know the list, I'm sure - increased hypertension, no libido, stiffness and painful joints, constipation, thinning hair, insomnia and hot flashes)
At the time I saw him I was managing most of the problems, to a degree, and I really wasn't asking for a change in medication; but, I was looking for at least an acknowledgement that this drug is hell-on-wheels to live with. He offered to switch me to Tamoxifen (for 5 years) but I'm really hesitant to do that. The thinning hair, joint pain and cataract can also happen with Tamoxifen too and it's the clotting issues that really scare me. On top of it, I've been a happy user of Wellbutrin for several years and I don't want to risk my equilibrium by switching antidepressants.
I guess it's case of the devil I know....
I'm not expecting a solution to my woes but I really needed the opportunity to whine in a safe place where people really understand what we live with.
At this point in the journey My BMX seems like it was a cakewalk compared to this.
Thanks for listening.
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kmpod - hugs to you too. I was just discussing some of my issues with my DH, who has been wonderful through this whole experience, but just before I read your post I realized, he really doesn't have a clue what I'm still going through.
I hope you have a peaceful weekend.
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Ritajean, thanks for your encouraging post back a page. We need to hear these accounts, which give us a bit of hope from this misery deal that Arimidex deals out to a lot of us.
C-Squared, a while back was talkinbg to my GP about changing to Femara and after I see the merry go round that people get on with this, reckoned I'd try and stick to Arim, BUT right now my body feels 100yrs old.....and ache ache ache. 4 hours sleep last night (again) I am SOOOOO brassed off and frustrated that a girl can't even put in 1/2 a days decent hard work without suffering BIG time. I've got so much to do and because Im trying to do it, right now my feet are burning, IM SO SICK OF MY LE SLEEVES...I feel like a bloated balloon ...ARRRGGGGH sorry for the moan.
kmpod I hear you. Yeh, we get it about what we have to endure with all this. Grrrrrrr. Sorry you are facing the cataracts drama. One side effect of Tamox is uterine cancer. Lovely EH??? Some choice. Sometimes you have to wonder if the after shocks are worse than the jolt.
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kmpod-so sorry about the cataracts-it is one of the se's that caught my attention, but I believe is overlooked by MO's.
lindakr-i wish people were more aware of the continued battles we rage on this drug.
musical-perfectly stated-the shocks are worse than the jolt.
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This whole BC thing STINKS! You get through one ordeal and another comes along.
So far for me, the Arimidex has been the worst (other than daily shots for 6 months because of PE)...as you gals have said, I feel and walk like an 80 year old (I am ONLY 69 LOL) but then other days I feel like 30. Right now it's the hair thinning that has me upset. After being bald for 8 months, that is adding insult to injury. Having no choice, I will soldier on................
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Well girls....rant away BIG TIME ...it sure makes me feel better. It totally enrages me that I have to plan what I do, when I do it and how I do it and Arimidex most assuredly has made other issues worse like plantar fasciatis, (sp?..too lazy to look it up) peripheral neuropathy, and old injuries. GRRRRRRRRRR
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For all with eye problems (even those w/o), I suggest finding a good ophthalmologist to follow you regularly. The AIs and tamox are very hard on the eyes and we have to take them for so long. Kmpod, I'm sure an optometrist with bc would be very on top of eye SEs and have very dillegent exams from her colleagues, but not all of us will be so lucky.
I had a very thorough exam from my optometrist, but she sent me off to the ophthalmologist because she couldn't find why I was loosing my vision at night, then on through the morning. My family has serious eye problems like macular degeneration and glaucoma, so I started with these docs instead of my MO. Several tests later and a few weeks off anastrozole and it was clear the drug was the problem. The culprit was found but not the why it was happening.
After an 8 week break and vision near normal, I'm starting exemestane/aromosin. I'm to see my ophthalmologist each 2 months unless my vision worsens. I need to be on an AI because of my oncotype score. Really hope this drug works.
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Doxie--what was your oncotype score?
According to my MO, the ONLY SE's for Arimidex are bone loss and bone pain. When I mentioned a host of other problems, especially heart related ones, SHE FLAT OUT DENIED THEM. Needless to say, I have NO FAITH in this woman and quite frankly can't figure out why I need an oncolgist. I'm going back to my primary to discuss this with him. I'm planning on starting Arimidex in a week. My DH has just had neck fusion surgery and I have a horrendous cold. I want to feel a little more 'normal' (hahaha) before starting.
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Junif - My score was 30, just below high risk. I had chemo, but w/o an AI or tamox my understanding is that I have a 33% chance of distance recurrence in 10 years. Chemo only lowered it by 7%. I know this is better than many women here, so I'm grateful it is not higher.
My MO is working with the ophthalmologist and will continue if the next med causes the same troubles. My MO insisted I go for the additional eye tests and continue seeing the ophthalmologist even though my vision was getting better.
I can understand why you might question the need for an MO when it seems the future involves only taking a pill for 5 years. As some women here, you may do fine without needing the MO. But who can predict what will happen. My MO is not perfect, but he is a decent person and has grown to respect me. I will stay with him for now even though there may be someone else out there who might give me better care. I suggest that you look for another MO. I think it's asking a lot of your primary to do the work of a specialist, especially when something missed can mean something as serious as a recurrence. My MO and RO give a thorough check up quite different than any primary has given me. It's specific to check for bone and organ mets and local recurrence. Hard to give up that extra care even though I'm questioning how much longer I need to see the RO. But he gives the most thorough breast exam of anyone.....
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Doxie--thanks for the reply. I am going to get new MO, first my primary to see any suggestions there. You said something intersting in that your MO and RO check for bone and organ mets..how is that done?
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Junif - They pound my spine and the MO is really physical in examining my pelvic area and other organs. The first time he did it I was shocked by the agressiveness of it, but later understood why. They are also hyper sensitive to any pain. My LX scar is till tender and they reacted w/o me saying anything. Just to clarify, the exams aren't painful, but if a recurrance could be painful, their exams might trigger some pain and it would be discovered earlier. They are also looking for painless masses.
I'm guessing this isn't that uncommon of an exam?
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I get blood work each time I see the MO which always includes tumor markers. If they are rising it is a good indication that something is going on.
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Thanks, Ladies for all the good info. I go to my opthamalogist mid-December for a routine checkup. I hadn't even thought about any AI implications. Glad I made the appt.
RitaJean: Yes, I have tingling and numbness in my right hand occasionally in the middle of the night. I suffer hotflashes on a nightly basis (they start like clockwork around 8:45). Joint pain, but livable. I have been diagosed with osteoporosis and have to have semi-annual injections of Prolia. My MO has asked me several times if I can live with this S/E's and so far,after 5 months, it's manageable. I am trying to do as much as I can to combat the joint pain, including weight lifting, hot yoga, walking. I drove back from Michigan (435 miles) today and both times I got out of the car for breaks, it took me a minute or two to straighten my body out. I looked like an old lady, trying to straighten my body out.
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Junif-your MO is frighteningly out of touch-
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Spunky--ya think!?!? I am soooooooooooooooooooooo frustrated. I went to talk to her about taking the Arimidex because I did a lot of research and wanted her input. I told her that I intended to take it HOWEVER if I found my quality of life severely compromised, I would stop it (yes, I would try the alternatives first). I wanted to discuss the chances of recurrence--my Oncotype score was a 1 which translated into a 3% chance of recur with AI's. I had questions about the estrogen tumor staining (mine 100%) and asked if the level of estrogen in one's system can be measured and if that is a relevant marker. I asked about the fact that the St. Gallens panel (international consortium for BC) after reviewing all the literature was evening split over whether women with early stage BC should even take it, though more were in favor for strong estrogen positive. I asked about the fact that no one really knows the toxity level of arimidex and why does everyone regardless of staining, grade of cancer, even height, weight take the same dosage? Many oncologists doing these studies say that the first 2 years are the crucial years for recur. If you notice, the US does not do studies of just AIs and the effects, it is always compared to Tamox...the only studies on AIs and placebos are international studies. I was hoping she could give me so insight on % of recur since everything else about BC is a percentage and I was hoping that she would tell me things that I could do that would lessen the estrogen in my body if I did go off it. Please understand that this is my personal decision and the reason I'm making it now is that I don't what to make a decision to get off this when I am in so much pain that I cannot make a good decision and I want to be able to say, "I Quit" and know roughtly what I am giving up. I know it sounds odd to be thinking of this before I start, but I am so sick of the emotional crap with BC--it's not me--I just want a well planned exit strategy if I need one. I'm hoping I'm one of the 1/3rd of women who have light SE, if I'm one of the 1/3rd who have severe SEs, I'll join the !/3 that go off the drug and choose quality of life. I have decided (through no help of my MO who also holds a Phd in nutrition) to change my diet. I know I need to lose 50 lbs (which I did 6 years ago, but gained it back after my Dad passed away). I have researched cancer diets, foods that lower estrogen and of course I'm working the weight issue which looms large for recur. So, when and IF the day comes that I go off AIs, I know that I have and am doing everything I can to lower my estrogen. I'm not going to layer drug after drug, run from specialist to specialist to solve a problem that I already know the root cause of: Arimidex. I'll be 60 in one month and I'm not going to completely sacrifice my life. I am fortunate that my cancer was a grade 1 and my oncotype was a 1--I wouldn't feel the same way if my numbers were higher. By the way, my MO just stared at me the whole time and finally said that her role was to tell me what treatment I should have and write scripts! Ouch, what ever happened to talking to the patient?!??!?
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Been so long since I have checked in still recognize Ruth's name..Will celebrate last of arimidex in 5 more months..I have just started typing recently. Fell down flight of 12 stairs in June..in hospital 5 days ..broke radius in one arm ulna plus radius in other plus smashed that wrist all in dominant right..I have cadaver grafts in wrist ..had 3 ops day after I fell to repair above,,then had pins removed in Aug..4 months of PT ..Doc said ''if you were a car you'd be in the junkyard...but you're still going down the road'' yep a quote from great ortho guy..and yepper that be me,,same way with BC..blest to still be on the road..Prayers and peace to all of you!
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Sharlene, would looove to hear how you go when you go off it in 5 months. It is really valuable to hear those of you who are finishing up, or soon. May I ask, have your sideeffects got worse over the years, stayed the same or improved? It sure is rough justice for some of us.
"By the way, my MO just stared at me the whole time and finally said that her role was to tell me what treatment I should have and write scripts!"
Junif, goodness me what a great bedside manner! that is a disgusting attitude. Seems theyre mostly on auto pilot these days.
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Junif, I would have been tempted to tell her I could get that info from the internet.
Re: cataracts. I had cataracts (mild) before arimidex. Is anything published about whether it will make them worse? Or is it only a risk factor for forming them?
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Hi Sharlene! Youch, I am in pain just reading about your arms. Hope you will have an uneventful recovery from now on!
I found that it took about 6 months for my body to adjust to the lack of estrogen and then I was pretty much fine (and it was very gradual, one day I thought, "Oh yeah, I did not feel hot or achy all day...hmmm....."). I don't feel any different off it than I did on, although they say it takes about 3 months to totally leave the system, so maybe I will wake up on December 15 and feel like ?????? I don't know what!
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Hi ruthbru, I know you do wonderfully with your exercise and good on you. The trouble with me is I'm in a catch 22, cuz I need to lose some weight, and I'm keen to do some execise, but Arimidex has made my (unrelated to cancer) peripheral neuropathy worse...(burning and aching feet). Ive had to give up the meds for it, coz theyre causing me to reetain fluid. We're just coming into summer and this all adds insult to injury as the PN is worse in the summer. Whats the closest to weightbearing exercise that doesnt involve your feet, or what do you think would be the most beneficial? With me, for years I've cottoned on that the earlier in the day I go for my walk the better....like at the crack of dawn. In times past I've been able to cope with between a mile or 2 miles before my feet give me too much trouble, but Arim has made that distance shorter. This is just so frustrating.
Also wondering if you ladies side effects from Arimidex, like aching joints, get worse in the heat?
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I would think that aching joints would actually feel better in the heat (I always feel more achy when I'm all scrunched up in the cold).
Lifting weight (light at first, of course) is very good for you. Would running/walking in the water be easier on your feet? Even though biking and swimming aren't weight bearing, they are good for cardiovascular health, overall health, weight control etc.
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Okay so I attempted to jump on over to the Femara board in the hope that someone there might have something postivie to say about a switch from Arimidex to Femara. At this point I am definitely beginning to second guess my plan to switch. I haven't started the Femara yet and the Femara ladies are making me very anxious! I was hoping to hear of some POSITIVE experiences with a switch of this type. I DO understand that ALL of the AIs are estrogen depleting drugs. I was just hopeful that perhaps one reacted different than another based upon our individual biology.
After 3 months of taking Anastrozole, I developed a progressively wosening trigger thumb on my right (dominant) hand and that is what prompted me to seek a change. I think I can handle the joint aches and pains in the knees, hips, back and spine BUT the THUMB was debilitating! All the weight-bearing exercise in the world can't help with the large joints when you can't even hold a dumbbell, much less a pencil, in your hand! I know, I can walk.., but what does that do for my thumb?
I feel so entirely lost and I don't know what to do! Can someone please help me find some peace in this world of AI's?!?!?!?!?
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c-squared - my friend changed from arimadex to femara and her pain issues disappeared, she is much happier on it. And good luck with the peace of mind about AI's. If you change and hate it you can always switch back, or try aromasin (exemestane) or tamoxifen. I went to an orthopedist to check out my debilitating thumb pain and found that my joint had detriorated. Remember that not everything is caused by the BC treatments.
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LindaKR: I don't have neuropathy; I iced my hands and feet during chemo, and also used (and continue to use) accupuncture for neuropathy -- or for anything else that hits me, which isn't very much. I had plantar fascitis in the past and every once in a while it acts up, but this feels like the sore achiness I had when I was three weeks into AIs and hadn't yet discovered Claritin. I was super-achey all over my body this weekend, but I was also super-active...even dropped 2 pounds despite partaking of the holiday festivities. Didn't go overboard by any means, but also didn't count any weight watchers points or anything either... :-)
Now that I think of it, I think I'll call my accupuncturist for a tune-up and ask her to help with my feet. (She is my favorite physician in my cancer center.)
Susan
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Good. If summer helps the aches then GREAT! Well Im seriously thinking of biking again. Used to have a 10speed and did a bit on that, but hubby didn't want me to ride it as I had a couple of fall offs. Thinking more of the exercycle type of thing. Are those bouncy things (like mini trampolines) counted as weight bearing? My thinking is if I wore appropriate shoes (sneakers or something) it possibly wouldn't affect my feet as much. Just a thought.
C-squared, so sorry you are having thumb trouble. What actually is trigger thumb? I have joint pain in thumbs, fingers, shoulders, low back, knees and feet, but not all at once. It seems to "do the rounds". What to do? Like Linda suggests I guess we can always change back. It seems some women are better off and some worse off. If my situation gets much worse, I might proceed to having a go at changing to Femara. At least here in NZ it's funded as is Arimidex, but not Aromisin.
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Musical, have you tried an elliptical trainer? It's weight bearing, but also totally low impact. Also try icing down your feet as soon as you're finished. Might just help. Seems to help me with the neuropathy.
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