For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Bren, did they tell you your Eustachian tube ws staying open and offer to put tubes in them? I must be stupid, becaue if they are staying open, wouldn't the tube make it stay open more???? I think i'm not hitting on enough syptoms to warrant the diagnosis.
Cancer or Ear Pressure.......pick your poison.
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Interesting that you said Eustachian tube dysfunction could be affected by birth control pills. My daughter was home this summer. Had just finished her first three months on bc. She was also sick while she was here, in and out of the emergency room. She had most of those symptoms you noted for about a week. While in Thailand a year before that, she developed a ruptured eardrum, so we thought it was all related to that.
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I have been doing acupuncture and taking an herbal supplement of Chinese herbs and have been feeling better after a few weeks. My goal was to work on hot flashes and sleeping and it has helped. I would recommend at least the acupuncture to help with other se. My oncologist was very in favor.
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Aviva, Dr Susan Love's foundation just sent a message on Facebook about a study on A and acupuncture. Glad it is helping you. I'll keep it in mind when I start Arimidex next month.
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There was a graph on my Oncotype results that gave %ages with and without Al for 1-15 (I think) years. It convinced me to so the Al. I read about electroacupuncture for those on Tamox which were favorable. I had never heard of electroacupucture.0 -
Bosum your MO should have all that information available. I would definitely request it.I am on another Anastrazole break. I have been off it just three weeks. No joint pain in my hips, knees, or hands. It had gotten so bad I was miserable. This is my fourth break in just under three years. I sure like how this break is feeling.
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justmejanis - does your doctor tell you to take a break or do you do it on your own?
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This time I did it on my own. Last year he suggested I take a 2 month break which I did. Again that helped. The longer I stay on it without a break, the worse my joints get. The good news is after a few short weeks I feel really good. I am always so relieved that these breaks help. Talk to your MO. I see a lot of them are coming around and realizing these breaks are necessary. Feeling good is possible!
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There is a lot to be said for complementary therapies. The Ear PA was in favor of acupuncture and I have always believed in massage. When I saw the massage therapist and told her what was going on, she said, lets do some TMJ work. So she massaged my neck below my ear and my throat and had me tell her if the pressure occurred. It did, and it has never happened when I am supine. She thinks it has a strong muscular component and told me while she isn't a doctor, she thinks we can help this. I've had a very stressful 3 years with losing my mom, my dad's failing health and mine.....funny how that works.
Once before, after a surgery when my body was in a contorted position, my jaw flared up and they sent me to a physical therapist, who actually gloved up and massaged and manipulated my jaw joints twice a week for a month or so....
I'm not a medicine taking kind of gal, but a friend had something similar, they put her on a low dose ofanti-seizure meds and she has never experienced it again.
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Just checked out her site and the study--- Army of Women doing the acupuncture study to see if it helps joint pains from hormonal therapies. Sounds great - Im just not close enough to any of the study sites to be able to sign up. The closest one is Grand Rapids, and you have to go twice a week. Bummed, I would for sure sign up!
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Wow did I have a lot of catching up to do! Have been reading posts but missed about 2 weeks. I have so many of the same side effects that you ladies are complaining about, I was getting concerned that I might have brain mets. I went for my annual physical a few weeks ago and they did a hearing test, which I failed 3 or 4 parts of without realizing it. I asked my PCP if I should be concerned and what might cause it, and he said to ask my MO if it could be from the chemo. Recently I have noticed that my ear feels like it has cotton in it. Maybe it's the Arimidex, maybe it's from the chemo. I see the MO on Friday so will ask then. I also have been having issues with the big D over the last few weeks, at first I thought I had a bug, then I thought maybe I was increasing my fiber too much but it doesn't seem to make a difference how much fiber I get or don't get. And Wave, your description of your feelings of your brain spinning around and not the room is exactly what I get frequently. I too seem to have some balance issues, at first I blamed it on the neuropathy from the Taxol, but it seems to be getting a little worse rather than better. I hope it's all from the Arimidex and not something more serious. I had started on anastrazole but after three months the MO gave me a script for brand Arimidex so I could get it from Astra Zeneca. I have been taking the brand now for about three months and I think the SE are getting some worse so I will ask him about switching to another AI (he had been willing to do that the last time I saw him). The pain in my hips, hands and feet is getting unbearable, especially as the weather is starting to get cooler. I dread the winter for the pain! So hopefully he will agree to try something else that will help. Thanks for all the tips and suggestions, and I will try to be better about keeping up with all of you.
Martha
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aviva I'm also not conveniently close for the study. And I don't start Arimidex until mid-october so don't qualify yet.
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Redheaded1
I also have had ear issues...stopped up feeling, muffled, itchy. Then came the vertigo OMG ! ONCO said he had never heard of ear issues from Arimidex. Had a full going over by PC doc and ear, nose and throat man. They could find nothing. On my own started taking Zyrtec at bedtime and in a week it was totally gone. I still take it because I dont want to take the chance of it coming back ! With all the pollen here in Florida I think half of the population is on it. I also have the exact same diagnosis as you.
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Here's my concern about taking breaks from the AI's - what if it's like antibiotics, and they say that if you don't finish the course of antibiotics that the bacteria can become antibiotic resistant. What if taking those breaks have the same effect on cancer cells? Anybody know anything about that? I haven't found any info on if taking breaks increases your risks of recurrence - have any of you?
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I don't think they know. I wouldn't take a break unless my current QOL was so bad that worth the risk to me.....personally, I would probably just want to change to a different Al rather than take breaks.
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when I was ending my AL, doctor sneaked in one extra month on me...think it was as I had skipped a week at one point and it was her way of insuring the 5 yrs were covered!
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I do agree, they are not sure on anything!
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Hi ladies,
I've been on Anastrozole for 18 days now. Although my joints are not as sore as when I first started this AI, I have been feeling quite down, almost sad, for the past 4 days or so. I don't know if this is another side effect - has anyone else experienced this? I've been on anti-depressants for a couple of years now (Effexor) which I was prescribed by my MO to help with hot flashes while on Tamoxifen. They're helping with the hot flashes but not at all with my mood. Any insight would be appreciated.
Have a great evening,
Carmen
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Carmen1954 initially I might have had some mild issues but I really didn't notice… fast forward 3 years. I finally realize that I became so depressed on this drug. I took a 5 week break. In 2 days I felt better. I am now on Exemestane (generic Armosin) and doing great.
BUT give it a little time. It might just take your body some time to get used to it. At the same time do not ignore this. Be sure to tell your MO. For some it's just the lack of estrogen. For me it was definitely the drug because I am doing great now.
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Carmen, after a month on Anastrozole generic, I was quickly heading into depression, had no appetite, cried for no good reason and generally felt miserable. I had to stop taking the drug, called my MO and got a script for the brand name Arimidex. That worked a little better, but I eventually had to switch over to Aromasin because of SE's.
There has been quite a discussion in the past on these pages about the fillers that are used in some of the generics. Many of the generics are made in India, and some of us have had issues with them. Before you switch to another AI, you might want to try the brand name first. You can get it pretty reasonably from ArimidexDirect.com
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I think one thing you should also consider is that it is pretty common to have a crash at the end of 'active treatment' (which coincides with the start of hormonals). You've been on a 'fight or flight' mode ever since diagnosis with lots of medical appointments, treatments etc, going on continually & then you are shoved out the door with a pill prescription and a 'see you in three months, have a nice life' (that is how it feels anyway). And it really is an emotional adjustment just when your body also is trying to adjust to the hormonal depletion. I found it took me about 6 months for my body to adjust physically... and to process the whole experience emotionally a lot longer. Exercise and keeping busy helped me a lot.
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I completely agree with Ruth, ending all the active stuff and now being off the AL, it is scary and most folks do not get why or how I feel. Trying to move on with life and as long as no reoccurence, I want to enjoy things and my retirement. I am fine till my next doc apt!
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The same thing happens when you finish the AI. Maybe even worse. Makes you feel totally defenseless, at least it does me. I am 2+ years out from Arimidex. And now they are talking about recurrece 5 - 10 years out from diagnosis. . .Doesn't help that I just walked one of my best friends through testing - came out with no cancer thankfully!!!!! But brought back all the memories. . . Now to put that all out of my mind. Not very easy. I don't know that the fear is ever completely gone, although it sure was better before "reliving" it all!!!!!
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BB. sorry but reading your last post, well I giggled....you will get through all this dang thing, you will!
wish all goes better with the med
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BB I'm so glad the Minoxidil is working for you. I know you were reluctant to try it.
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Hey lago - I had thin hair before chemo - since I went through menopause. I never tried minoxidil then but am thinking of trying it now to help things along. Are you still using it? Can you tell me how you use it, do you buy men's or women's? How often do you use it? I would appreciate any info. My hair is growing so slow since chemo and it is pretty thin but I am grateful that my hair is coming back at all.
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Linda I use the generic Women's from Walgreen's. I was using it once a day but just started using it 2x per the directions because I'm noticing more receding on Exemestane. Just follow the directions on the package. I had tried the men's but found I was growing facial hair. It was blond but getting long. Some women do use the men's. It won't speed up your hair growth and it takes 3-6 months to see changes.
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BosumBlues---did you lose all your hair during chemo????0 -
And then it got nice and full and you went on Arimidex and it started coming out again?
along with your eye lashes? Girl, I am so hoping the Tamoxifen does good for you. YOu will get your estrogen back somewhat, so it should stop your early aging..... Be sure to let us know how its going with the switch.
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Hi everyone!
Been a while since I've posted (or read through posts). Trying to get back to new normal and not dwell on aches and pains, weight gain, night sweats, hot flashes, etc etc . Staying positive!
I have just completed my second year of anastrozole. I underwent a dexa scan to assess whether my bone density has been affected. Prior to starting this medication I had a scan and at that time I was osteopenic. I am now osteoporotic and now considered to have osteoporosis. I assume as I have at least 3 more years to endure anastrozole and that I will be taking some form of bisphosphonate to protect my bones. Questions I have for the group are:
(1) is anyone taking a bisphosphonate?
(2) if yes, which one and why was that one decided upon?
(3) how is it administered, orally (frequency?) or by injection (frequency?)?
(4) do you have any side effects? how do you counter them?
(5) is it administered by your onc or pcf?
Appreciate your input in assisting me in my decision. Thanks ladies!
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