For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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keepmyhumor I had read somewhere that heart damage with Adriamycin can show up years after treatment. I don't know how common, but it sounds like you are one of the unfortunate ones. It sucks but easier to treat then mets.
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keepmyhumor---sorry to hear your news, but hopefully all will be resolved. Don't know about the chemo drugs, since I did not do that, but my radiation was on the left, and they were unable to use respiratory gating for me, as I didn't breath correctly., so a small portion of my heart may have been affected by the rads. Just won't know unless and until something shows up.
Was you skin sun exposed? Just curious, since its been so long. I've tried to keep mine covered this year, and I know they act like it is forever....but that would be hard.
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redhead,
Arimidex doesn't actually CAUSE tinnitis (ringing ears). But it is a condition that effects post menopausal women than any other group. Many ENT specialists think it is due to the drop in estrogen. Since arimidex keeps you from producing any estrogen it is very likely involved even tho it is not directly the cause. Most specialists I have seen say the condition is permanent once the change to the nerve has occurred. Mine is so bad I take ambien to sleep as the sound is most disagreeable at night.
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lbrewer, I have yet to start arimidex and I have a nice case of tinnitis. Most of the time I don't notice it. Sometimes it bothers me at night but it does not go away. Mine is partly allergies and partly heavy aspirin usage for awhile. Probably with either I might not have had a problem but both of them...well, here I am. And I'm definitely postmenopausal. I hadn't heard about it being common with that and it's very possible that's when mine started. Something new to contemplate.
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Keepmyhumor, my np friend told me once that she has had two patients develop the same heart problem at least two years after chemo. One required emergency treatment. It is good they are on top of this for you.
My oncologist just died from what ultimately was an aortic leak. He went in with high liver counts so they had him see a gastro guy. Through the tests, they realized the high counts were due to the back flow from the blood not going into the heart (I think). Rushed him into open heart surgery. That didn't work, took him back in, but at that point he was critically ill and couldn't survive the trauma. Everyone said it was a freak thing, very rare.
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fluff, oh so sorry about your onco, have always dreaded the idea of having to chose a new onco (I know selfish I guess)
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Thank you all for your encouraging words and support. I know I will get through this. It is nice to have this board where we can discuss our feelings and know that someone truly understands!
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Amen Keep
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I am so sorry about your onc, fluff. What a tragic for thing for his family and all of his patients! Some things are just out of anyone's control.....
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About .9 percent of Women reported tinnitus as a side effect of armidex. My MO just researched this for me, as I have a ear issue plaguing me that I thought might be the drug, but I do not have ringing in my ears....0 -
OK, bear with me while I vent. Just home from ENT office to get the MRI results. Absolutely nothng in the report that would explain my pain/pressure (no ringing) in my ears. Nerves look fine and clean, no aneuryism, no tiny bleeds. Just the same white lesions that have been there for years that the Nuerologist says is migraine scars.
So,ENT tells me that the TMJ doctor thinks he'll probably just do some trigger point injections. HELL NO HE ISN"T. I don't like him or trust him to do this. I tell this PA, no it is pain and pressure IN MY EAR. INSIDE my EAR. (Is he deaf).
So then he says TMJ doctor wants him to scope my nose again to look at my tubes. He's lucky he didn't catch a knee to the crotch. Then he says, well maybe you have Patulous Eustachian Tube dysfunction---its usually more common in women and after middle age it is hormone related........(ARIMIDEX IS DEPRIVING MY HORMONES). Used to treat it with estrogen nose spray but women wouldn't use it...
They could put a tube in my ear, but then I'd have to use plugs to swim and and cotton ball coated in Vaseline every time I showered and sometimes, the tubes cause people to complain about it changing the way things sound, so they can pull it out in the first 3 months if I don't lilke it........I looked this condition up and it talked about people having autophony with it, which I don't have...........AGHHHHHHHHHH
So I am trying to cool off before I call my lovely MO (who I really like) because even though he said I could go off the Arimidex 3-4 weeks, since I've been on it for almost 4 months, the ENT thinks it would be 6 months before my hormone fuction would return. SO WHAT TO DO....... WHAT to DO....
I just feel today as if the cancer is going it succeed in making me miserable, no matter what.
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Gosh, NO to the ENT. Probably he is a perfectly lovely human being, but the idea of an injection in a trigger point does not appeal. Not at all. Perhaps, however, a PT or chiropractor or massage therapist could gently approach those areas?
I think I said it earlier: Medical science concerning the inner ear seems about 50 years behind that of the rest of the body. Probably what you are experiencing is some version of some vestibular thing, and, based on my experience, and Bunkie's (if I can speak for you, Bunkie), they just do not have the tools to identify/treat/heal this stuff. You could try low salt, low stress (!) and meditation and do probably as well as anything any of your docs could throw at you.
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I vote no to the guys ideas also, can you find a dif one to work with?
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my MO said if the issues with my balance and dumb were from the med, they would disappear in a couple of months from ending the med
dang but it has been almost 9 months and the dang feet and balance issues are still here even though working with a trainer
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Do you have TMJ? I did, had open surgery (4 hours) on my jaws, no more problems I also saw a pain management doc for scapular pain she did trigger point injections the first round was steroids. The second round was 13 Botox injections that did the trick. Don't be afraid if them!
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Thanks guys. I had a neurologist do trigger points, First time it was lovely instant relief, second time, she decided to stop because I was so uncomfortable. If I decide to do t hem again, it will be with someone I ultimately trust, like her.
I don't have TMJ but I grind my teeth at night and jaw clench, so I wear night appliances (alternate them upper, then lower every other night).
I have booked a massage for Monday afternoon. I am sure stress is a factor, as my 87 year old father is becoming more difficult daily. He won't cooperate with me and I don't want to have to go to court,but he isn't paying bills on time and all kinds of old people crap is going on. You'd think I was a criminal when I offer to write his checks so they get mailed out on time. But I digress..
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Well that didn't work....sorry.0 -
Redheaded1, you've got too much crap on your plate. And I so understand it. At least I'm coping with my DH and, as hard as it is, I suspect it's easier than dealing with a father with what sounds suspiciously like memory loss or dementia. Don't envy you the choice you are going to have to make since it seems he really can't take care of himself any longer. Many hugs, Red! And Love!
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Redheaded1 wouldn't you just like to groin punch breast cancer? I agree with BosumBlues. Those of us who came into this battle completely healthy can resent all the crap we now have to deal with. For me many times it's the cost in money and time (all those doctors to see) that really irks me. My latest of course is the cost of Prolia and the cost of Exemestane (Anastrozole was $150 less!)
I grind my teeth too. I looked at a picture from years ago and I can see they are shorter. I wear a night guard too. It really does help. No headaches anymore.
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I haven't been on in a couple of weeks so, catching up on all the posts. I moved to a new office and have been exhausted setting up two different work stations while still trying to do my regular job as well as new duties! Benefit of the new office, It has a gym! Now I can work out daily. This is a must because, since I started anastrozole in March, I have gained 15 lbs and it seems to be all around the middle! Still having sleep issues, tried a low dose of melatonin but am going to increase it tonight. I have also developed trigger thumb. Man is it painful! It actually wakes me up (after I finally fall asleep)!
Sorry to hear about others medical miseries. This stuff is brutal but we're tough ladies and will keep on fighting!
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Remember if this stuff has too many SE there are always others. I'm doing great now on Exemestane (Aromasin) now that I switched from Anastrozole. I gave Anastrozole 3 years. The last year was when my issues peaked
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I agree that doctors are flummoxed by ear problems and look for the easiest answers. While on Aromasin, I developed a "cottony" feeling in my ears, like they were full. I lost my balance and was dizzy all the time. My first doc said eustachian tube dysfunction and gave me antiobiotics, said the eardrum was convex. The ENT 2 days later put me through the entire range of hearing tests, looked at my ears and said rhe eardrum was fine, no dysfunction, probably a virus. Everyone assumed I had vertigo. NO, I said, the room isn't spinning; the inside of my head is. Finally the ENT did a VNG test, where they disorient you and blast water into your ears, The test was negative, so the ENT sent me away. I next tried an opthamologist, who said my eyes were not in sync, and sent me to another eye specialist, who said my eyes were fine. by this time I had started getting tremors and went to a neurologist who ordered a brain MRI, which was clear. No one could find an answer. Finally my PCP gave me antidepressants. Within a month, everything was gone. Just time? Antidressants? Weirdest 2 months since chemo..
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Wave, I so get it! couple of yours ago I woke up with the room spinning, went to docs after a few days and ended up with neurologist and neurosurgeon after MRI & MRA, apparently they were looking for brain tumor
I still have balance issues but only recently on these boards did someone comment about sinus infection and vertigo.
dang but the second opinion brain guy cleared me but said it was likely caused by an infection...I have chronic sinus issues but that first idiot wanted to do brain surgery!
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Proudtospin, don't you love it when you wind up with clueless, idiotic doctors?
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and finding docs that do not freak out over a past cancer thing......they are all looking for a redo of cancer but scared they may miss it
dang but I feel that is my MOs job
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red-we should introduce our parents. I have an 87 year old mother the same way.
Also, my daughter went through a period with tmj. The specialist here in town had her wear a very extension retainer for awhile, and sleep using a contour pillow. Helped her a lot. Will antihistamines help?
Has anyone heard of an AI causing an enlarged lymph node? I have a very tender area which is either the lymph node or some kind of mass right by it in the non cancerous side. Very achy in general and very tender if I push around.
Called BS and have ultrasound on the 30th. Wish it was sooner, as I am starting to stress myself into thinking it's a recurrence. That might be a good thing. Last time I did that I lost fifteen pounds in a month . That would cover what I've gained since starting tamoxifen and now arimidex
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Ok, I have calmed down, called my MO and asked for his voice mail and left him a message saying the ENT PA thought it was patulous Eustachian tube dysfunction, and that it might be hormone caused. and I am asking if going off the AI for 4 weeks would even produce enough of a hormone surge to convince me that is the right diagnosis.
Also asked if I go off 4 weeks do I have to tack 4 weeks onto my 5 years of AI....
I've researched what I can find on this, and I am not sure I even was given the tests necessary for a good diagnosis. Some of the studies talked about tymposcope and microscopic visualizing of the tube to see if it closes and opens during swallowing, etc.
Talked about pressure issues. My pressure was fine. My hearing test was normal. He hit a tuning fork and had me tell him where it was loudest and it was normal on all vibrations, including the middle of my forehead.
I am missing a lot of the symptoms people complain of: frequent infections of the middle ear/inner ear, muffled sounds, hearing your own speech louder than it really is, hearing your heart beat, loud crunching sounds when you eat, and so forth. Says its common during pregnancy or when on birth control pills.... (Nope, pretty sure I am not either of those).
How to find a good doctor......Its so hard, and with all the pressure on the health care system now, they are just pushing people through med schools and then people from overseas schools are moving in, and its hard to know. I look at their educational backgrounds and where they trained, etc., and I look for friends that have had good and bad experiences and still sometimes its not productive.
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Red, sounds like we search out new docs the same way!
a while back I needed to do the derma/skin check and needed a doc. Spoke up at the gym and dang is 3 people referred me to the same doc! close and very nice but that was just lucky
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Just back from first MO visit since rads. Ordered a bone density and colonoscopy (prior ca). I asked about se's....headaches, stiff knees, thinning hair, fatigue.....all Yes! Don't go back for 6 months. I think that is good news.
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Redhead, I had mild ringing in the ears before chemo and the AI drugs, but Arimidex made it much worse. I also developed a weird clicking kind of noise in my inner ear that happens on a fairly frequent basis. I have been to my ENT doc, he did a thorough exam, but found nothing. Finally he did admit that it was probably a cumulative effect of the chemo and the AI drug. Since then I have switched to Aromasin, the ringing has subsided some, but the clicking sound (I can't think of a better way to describe it) has not resolved. Even when I went off the Arimidex for 4 weeks before starting Aromasin, it did not get better. I don't want to blame everything on these drugs, but there do seem to be a lot of SE's that even the docs really aren't aware of. Of course not everyone gets most of the SE's, but for those that do get them, they can be troubling, annoying, painful and/or life disrupting.
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