For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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509337,
I would have stopped it along time ago especially with the tongue being swollen.. I had a 2 wk break and now I'm on Exemestane and so far just some mild aching to knees and legs. I would definitely ask for something else.
Sherry
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Well, do finish out the two-week break. If you see a significant improvement (and maybe even if you do not), your onc can switch you to a different AI. If you do not see much improvement, do consider that some of these symptoms (morning headache, throat and tongue issues, maybe even light sensitivity and definitely fatigue) are common with sleep disorders. Your pcp can set you up with a sleep study (you snooze overnight with oodles of wires recording your brain waves, breathing, oxygen level, dreaming, sleep stages, and so forth). The reason I recognize all of these symptoms, by the way, is I just had one of those studies on Friday, and the paperwork asked about such things as the morning headache. I already knew about the fatigue (i'm having sleep attacks in the afternoon), and I wake up with a dry throat and tongue from my un-Sleeping Beauty-like snoring.
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509337, sorry you are having problems. Many times we tell people to try and hang on to see if SE's subside. In your case I agree with Sherry that you should definitely ask to try something else as your SE's seem to indicate you cannot tolerate anastrozole. Allergies can be deadly so you don't want to mess with it, especially swollen tongue and sore throat. Keep us posted on how you are doing.
{{HUGS}}
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Pat I have a severe aspirin allergy and I am ok., but yhe sore throat/swollen tongue is definitely a symptom of a severe allergy. If you are taking generic, which manufacturer made it?, Could be a filler in the drug. I use the one made by TEVA and it uses different fillers than the others. The headache could be from the drop in your estrogen levels.
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509337 call your MD right away. You sound like you are having an allergic reaction. Sore throat with swollen tongue are key signs. Are you breathing OK?
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509337, My brand of anastrozole was changed on me & I developed a swollen, burning tongue, lip & throat. It is an allergy to one of the fillers, probably not the drug. I had no problems on the original brand & my Dr is switching me back. GG
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Thank you to every one that replied. It is so nice to know that someone is listening to my complaints and takes the time to reply.
My reaction to aspirin was extreme swelling of lips, tongue and throat. This happened about 50+ years ago. My current swelling is minor compared to that episode but I was not sure it was the Anastrozole or something else. I know a few years ago pea soup started to cause my tongue to swell so I had to cut that from my diet.
Read headed 1 - thanks for the info on TEVA. I will check to see what brand I was taking.
GG27 - do you know what the original brand you took was
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509337, The brand I was originally taking is Taro, but if you're in the US, you probably wouldn't be able to get that one as we have different drug brands. The two brands I've had a reaction to are APO & ACH. If you read back on this thread, there are several posts about which brands seem to cause the least problems. Good luck! GG
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509337, I take the real thing direct from Astro Zeneka, the company who makes Arimidex. I have had no problems. Maybe less fillers? I don't know. $30.00 a month. It is sent to me, three months at a time.
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Saw my MO today for the first time since before radiation. I have been on anastrozole since October 24th. Interesting visit. I noticed hair thinning late last week and this weekend it was quite heavy. If it kept up at the weekend rate I would be bald by January. It seems to have slowed down since yesterday. Little scary. He said he never heard of hair thinning and t is not listed as a side affect in the PDR. I thought his nurse was going to hurt him. I then asked him about the errors on my chart. My diagnosis indicates I should be listed as stage Ia. He says that would be correct but the chart says stage !Ia. His comment is that doesn't matter. Then I asked him about the how they have the location of the tumor listed. The chart says outer upper right breast and the reality is it is the upper inner right quadrant. I feel like it is a good thing that I went to a cancer hospital to have my treatment reviewed before agreeing to treatment locally. The cancer hospital sent me back to the local hospital. Not feeling confident at the moment. He suggested changing my choice of medication. Hair thinning is the only side effect I have experienced so far. I don't think changing meds will fix that problem. Thoughts???
One other thing. I am not having any follow up tests except routine blood work in January and a mammogram in June. He said that unless there is a problem there is no benefit in any additional testing.
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I would getting a new Dr.
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BrutersMom, I'm with Tjh - I'd seriously consider getting a different doc. Having erroneous information on your record could be harmful and for him to have such a lackadaisical attitude about it is unforgivable.
HUGS!
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I have considered it. I just don't want to jump from the frying pan into the fire. My husbands insurance changes every year from company to company. Last year my insurance was $6,000 deductible for out of network, $3,000 in network. My 2nd opinion was $500 for the Dr.because it was out of network. People I talk to love these Dr.s I am not impressed with them. I have another hospital that is local but I can't find anyone who ever went there for CA treatment or care. Frustrating.
Is it normal to have no testing other than routine blood work until a from the last mammogram has passed? I don't know what is protocol. I do find that being my own advocate is necessary. .
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BrutersMom, I see my again in June - I just saw her last month. Saw my RO last month and see him in a year. Saw my MO in August and I see him in February. None of them do blood work. All my other care is via my PCP. But I saw my BS 3 or 4 times after my surgery and my MO every 3 months, now on a 6 month schedule. My RO I saw 6 months after the end of rads and then again in 9 months. So the appointments are getting further apart. I had a mammogram in April and MRI in June. I'll have a 3D mammogram next April.
I can understand your reluctance to change doctors. Insurance can be a huge obstacle. Keep nagging about getting your records correct. And make lists of questions and things you want done (corrected). It is YOUR body and health and you have the right to make sure the information is correct and accurate.
Good luck!
HUGS!
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Brutersmom Don't think about it. Get another oncologist. I know when there was a mistake on my chart my oncologist didn't say to me it didn't matter. She said it must be a type when they imputted the info electronically and had it corrected. BTW he is right about the blood tests/tumor markers for early stage. My MO doesn't do them either. They are unreliable.
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Brutersmom, by now there should be a notation in your records, marking your dx as 1a, and maybe a clarification as to the upper inner quadrant. I thought everybody knew arimidex causes hair thinning. Just to prove your doc wrong, I called up the drug's full prescribing information here: http://www.azpicentral.com/arimidex/arimidex.pdf#p...
And, guess what--your doc is right. This side effect is really not listed. Mystery of mystery! I'm totally amazed. I'm one who almost immediately began shedding, and continued to do so for maybe three months. After that time, it slowed down to normal, then repeated the process several months later. Yes, I still have hair and I'm the only one who knows/notices it's thinner.
That said, in my opinion, the correct response of any MO to any side effect noted is acknowledgment, and maybe discussion of possible other causes or contributing factors, not denial. Ughhh!
He is correct, however on follow-up. Yes, we all find it shocking, but follow-up or those of us with early stage bc feels like abandonment. After all the exams and treatment and diagnostic whatevers, it takes a while to become comfortable with standard post-treatment practice.
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I was thinking that I may need to call the surgeon's office to get them corrected. His office was the one that put them into my chart wrong. I think I am going to email the surgeon office and have them verify what I see is the same as what is on the actual chart. Then I will decide how much stink to make. I did look at what is available at the other local hospital on line last night and they only have one MO and RO. My choices seem limited right now.
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I am just having blood work until mammogram in February...March is 1 year. But I do see her every 3 months and if I have concerns/worries she responds within 12 hours or less. If it is a more urgent worry ivsee her that day, or one of the other ocologists. She also works closely with my PCP.
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yes, it's normal for just blood labs. Theywatch the tumor markers. I do labs every 3 months.
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The no testing is what my MO recommends unless there is a problem. If I have pain that lasts more than about two weeks or so, he will order x-rays or a CT scan (needed a couple of times in the past four years, always benign). Check out the guidelines (sign in as a professional) at NCCN to see what is recommended for you: http://www.nccn.org/professionals/physician_gls/f_...
Another tool I like is the Cancer Surviorship Plan Builder - http://www.journeyforward.org/professionals/survivorship-care-plan-builder. You make your plan and it gives recommended follow up which you can modify, as needed. It provides a place to start discussions with your doctor.
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Brutersmom....So sorry you are going through this. To start hair thinning is definitely one of the SE of anti hormones. I think its a sin that he denied it and it was not discussed before hand. There should NOT be false information in your chart. Of course it matters! As far as the screening unfortunately he was right! I was shocked by this. I had a BMX and my doc told me there is zero screening. He basically said I would have to go from stage one to stage four before they would do further screening! No bloodworm, no scans, no nothing! Really? We can't do any better than that? My last suggestion is you get to a university based teaching hospital. At least for a second opinion. Where you get treated is a very important part of this process. Good luck and keep us posted ....
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My MO did blood work every 3 mos for first 3 years then every 6 months for a year and then annually. Now I've moved and new MO is doing blood work at 6 months at least for first year. Could be because I am ILC which is the 'sneaky' one. Mammo (digital) was at 6 mos only for first year or 2 and then went to annual routine mammo.
Brutersmom, you need to get them corrected AND then get a copy for yourself. If you have to change docs, for any reason, you have to be able to give them correct information. You may be able to find info online about the local MO and RO that you found listed.
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patoo, I go to a major university hospital in NYC. Its been proven that blood work, scans and such make no difference in overall outcome. By the time something shows up on them you will most likely be stage 4. Tumor markers have been proven unreliable for screening purposes. I know this is hard to wrap your head around. You would think there could be something in between the progression of stages one to four but apparently there is not.They now feel they are not cost effective and ultimately just increase anxiety. I know there are docs that still do it but all of the major university hospitals in the country have disproved the effectiveness of them. My forum friend goes to Duke and her doc told her the same thing. For those of you that still have your breasts you will continue to have those screened but that is for a local recurrence not a distant one. We need so much more research for better screening and treatment options, and yes a cure! BTW this is also true for LIC....
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" I thought everybody knew arimidex causes hair thinning."
Any oncologist who is listening knows about this SE unless s/he is new to the business! We have all complained to our oncologist over the years. Some of us aren't as bad as others. Some of us are using Minoxidil to prevent/grow hair.
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So how the heck, Lago and others, does hair thinning avoid listing as a side effect in the complete prescribing info?
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dtad, sorry if I misled you but I was not suggesting that my experience was the standard of care, just that is what my MO chose to do; nothing to wrap my head around. I do know tumor markers are not reliable and he did not do scans.
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Brutersmom--I'd contact the insurance and ask for a list of providers in network that you can research. I 'd dump this doctor. Many women have mentioned and complained about hair thinning. Some are using Rogaine or Minoxidal, some have looked for shampoo that is low phosphate, etc. The fact that such obvious errors in your chart doesn't bother him is appalling.
I was stage 1 grade 1, no chemo, upper outer quadrant lumpectomy less than 1 cm. I have only had bloodwork. Not sure about your Grade 3 status and what implications that would have on the testing. I get a CBC, a Liver function test, a cholesterol test (cause the AI raised mine)and a tumor marker every 3-4 months the first couple of year. The Ro sees me once a year and does breast exam, as does the surgeon, as does my primary care. My MO does one if I ask him to.
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BrooksideVT The problem is people don't always tell their oncologist and it takes a while for it to make the list. Also many don't think hair loss is a serious enough side effect.
But report it. This from the Arimidex site:
ARIMIDEX® (anastrozole) Prescribing Information | ARIMIDEX® (anastrozole) Tablets
Information. You are encouraged to report negative side effects of prescription drugs to the FDA. Visit www.FDA.gov/medwatch or call 1-800-FDA-1088
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Lago, the link I posted earlier today was the full prescribing info (much greater detail) from the arimidex site and reflects (supposedly) all side effects reported. You can also find this on the site you, er, cite, by clicking on the PDF link just below the big red letters, "Prescribing Information." It consists of eleven pages of fine print and lists all side effects reported by at least 1% of patients.
My post above was meant to express my wonder at the absence of any mention of this is sue. We all know it is very, very common.
Anyone going to see your onc soon? Perhaps an MO will be able to explain this mysterious oversight.
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I just went to the FDA site you mentioned, Lago, and found 40 pages of information. Still no mention of shedding.
Love the site, and will use it to look up everything. Thanks!
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