For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Can anyone say why one drug is better than another? Some women are on Arimidex, others Ferera, and others Tamoxifen. And, my MO's PA said the higher % of estrogen you have, the better you will respond. I do not understand this. Can anyone offer answers? I would appreciate it since I will be meeting with my MO next week about what I will be starting.
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I don't believe the % of estrogen is related to SEs just if you have more estrogen taking an AI gives you ammunition against a recurrence. If your % of estrogen is low it would have less to try to control. Someone correct me if wrong
It's a crap shoot which AI you would tolerate best and which gives more SE. Kind of like playing the oldgame show lets make a deal. Sometime you pick the curtain with a car the first timeSometimes it's a pig
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thanks Peggy. My ENT says my post nasal drip is from the acid washing into my sinuses. It inflames them. Doesn't botherthe esophagus and goes up into my nose when I'm flat. But it could still be eating the esophagus up which is the big cause of esoageal cancer so I want to be sure it's controlled.
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I agree with Chloesmom, I don't think the PA was referring to SE's. The more estrogen pos you are, it is only logical the better effect it will have. This is why MO's will be more aggressive treating SE' sof someone who is 90% estrogen pos vs. someone who is only 10%.
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ChloesMom, Your ENT knows much more than my PCP, I'm sure. Laying flat just isn't an option anymore.
HUGS!
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if you google "silent reflux"'you can read all about it. Went to so many doctors until it was diagnosed. Took all kinds of meds and allergy testsfor nothing.
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Thanks, Chloesmom, will do!
HUGS!
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My oncologist says % of hormone positive doesn't matter.
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I have been on Anastrozole for 3 years and the only side effect I had was increased hot flashes. However, I recently refilled my prescription and found in the inactive ingredients Povodine which I am highly allergic to. This was the last pharmaceutical company that did not have Povodine in it. Now, I'm sunk. I cannot take the Aromasin/Exemestane tablets as they all have Povodine in them. I tried Femra and I suffered from extreme fluid retention in my knees and alot of dizziness which never went away. So, I'm SOL now.
My oncologist needs for me to stay on A-1's due to my cancer type. I had planned to do Anastrozole for 10 years.
Jo
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DJol1950, how devastating for you! Does brand name Arimidex have Povodine in it? Would a compounding pharmacy be an option? I'm sure it would be expensive but might be worth it. I have no suggestions, just lots of hugs and good wishes.
BTW, if you wouldn't mind, please make sure your profile is as complete as possible and make it public. Perhaps someone else here will have suggestions for you but it helps knowing your precise situation.
HUGS!!!
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Hi Pegg ~ I did fill in my diagnosis under my profile, not sure why it did not show up here. So here is the skinny until I figure out how to get it to show up here:
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Invasive or Infiltrating Ductal Carcinoma (IDC) - March 1, 2012
Left, 3cm, Stage IA, Grade 1, 0/5 nodes, ER+/PR+, HER2- - Lumpectomy, removal of 5 Sentinal nodes, 7 weeks radiation.
- BRACA ! & 2 - no mutations
Yes, have looked under brand names and they all have it in the inactive ingredient. I called compounding pharmacies and they get the brand name which has the Povodine in it to compound it.
Thanks for your response
Hugs,
Jo
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Crap, Jo. You can't catch a break. I can't think of anything else. There has to be a way to get it without Provodine.
For your profile, have you made it PUBLIC? You may have to tick a lot of boxes to get everything public. But that information you gave here is helpful.
Good luck!
HUGS!!!
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Okay, thanks Pegg, just entered more information and now will change it to public. Your guidance is much appreciated !!
My oncologist is throwing up her hands as she wants me to stick with the A-1's.
Hugs,
Jo
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Pegg ~ Let me see if it shows up now. I just changed everything to public.
Hugs,
Jo
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Hummmmmmmmmm, nothing showed up.
Will go back and check again.
Jo
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Good going, Jo! Now we know all about you! It's so hard when you're starting out here to figure out all the tricks etc needed.
Your oncologist needs to put her thinking cap on and find a way to make Arimidex work for you. You can't possibly be the only person in the world allergic to Provodine and taking anastrozole. So there has to be a solution someplace. Maybe someone here has an idea.
HUGS!!
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DJoL1950, it IS showing up!!!
HUGS!
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Talk to your pharmacist. S/he knows more about the meds than docs. It's what they do. And they don't seem to mind, like some docs.
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Jo - I did find a couple on here that don't list Povidone as a filler. Mylan was one I saw and that's a pretty common generic brand. I'm thinking it must be an important stabilizer to anastrozole since most do have it. Letrozole doesn't seem to have it as much. But I will qualify that as much as I like Daily Med it does not show the Apotex brand as having Povidone. Hmm. Certainly not questioning you; you're doing what you need to do for your allergies. Has your pharmacist had any suggestions? They have even better search engines. Or is there a pharmacist in your cancer center? Pharm. are available at mine for questions about meds MO prescribes.
http://dailymed.nlm.nih.gov/dailymed/index.cfm
I saw Mylan, UDL Laboratories (not heard of), Sandoz, Kremers Urban (again not heard of), Kadmon (not heard of).
Let me check with my drug guru here on another thread when she checks in today. She may know of another way of checking that I don't know but I know Daily Med is her go to.
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Jo, Goatie knows her stuff, she is/was a nurse.
Anybody we both know, LOL?
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Hi I'm PB...thankful to have found this thread and reading a lot to learn all I can. I anticipate working up the nerve to take my first anastrazole pill this Tuesday.
Had my first Lupron shot last week, was nervous about that too, but so far haven't noticed any increase in my usual few hot flashes and night sweats. Hoping the anastrazole will go as well for me too.
PB
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PB, Is there some reason that you are anticipating problems with Anastrozole? Most of us have no problems (and don't post here since we don't). Of course, ladies do have SEs and they are often the most active posters here. Please don't anticipate having SEs. My MO reminded me that we don't anticipate problems with aspirin or Tylenol - we just pop them. If SEs occur, we deal with them - a great many are an annoyance, some are not. But I think most of us say we are thankful that we have AIs to take to prevent BC from coming back. And we keep our eye firmly on that goal. And that's why you did chemo - to KILL CANCER! For me, you've done the hard stuff and congratulations!!!
That said, you may experience more hot flashes since this is going to shut down your estrogen quite effectively. Even some of us oldsters have warm flushes and we are decades beyond menopause. So that is one SE you can reasonably expect.
Think positive! We're here for you. Ask all your questions. We are a very warm and supportive group and will help you if you do experience SEs (and even if you don't!). You are not alone!
HUGS!!!
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PB, yeap a ton of supportive folks here, since I am done with my AL (no real issues) but still post and find all the recent issues on allergic reactions interesting to me
couple of years ago I had a nasty reaction to a steroid shot in my nose for sinus polups. No one wants to believe that I actually had such a bad reaction to the shot including the allergist and the ENT who gave me the shot~~dang but I ended up needing O2 and an Epi pen so not dreaming the thing
now trying to find a steroid that I will not react to as I have a stupid back and told it is spinal stenosis and trying to avoid surgery
dang but docs including allergists are a pain!
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Iris, I get that. NOBODY is allergic to...... (take your pick). Of course they are - you just haven't run into it. I totally believe you. Hope you find something that you can take. Are you thinking epidural injections in your spine? DH had them and they did help him. He had already had surgery, his back was terrible before surgery, somewhat better after. I don't know what they put in the epidural. Good luck!
HUGS!
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lago ,% doesn't matter in respect that you get some benefit and the therapy is recommended. It does matter as to how much benefit you get from the therapy. The Johns Hopkins 'Ask the expert" say they like to see 30% but do recommend hormonal therapy for any % however small.
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Hello Luvmygoats ~ Cute nick
When I went to pick up Anastrozole from my pharmacy six weeks ago, that evening and all thru the night I was up with large red welts on my legs, hives all over my hands and face, and fierce parenthesis, shortness of breath and pounding heart. Went to my primary next day who was clueless. I asked for a short of steroid but being an HMO she denied my request telling me to take oatmeal baths, LOL. it took a good month for the parenthesis to calm down. The other symptoms slowly went away. I was using my inhaler and Benadryl. I stopped the Anastrozole the following day when I first started the new medication. Now, I have had this same reaction many times with other medications and sure enough when I look at the inactive ingredients, there's Povodine or CrosPovodine. I tried Anastrozole one more time and the same reaction occurred within minutes. Now I am battling still chronic parenthesis that comes and goes and I am not on any medication that has Povodine in it.I called Apotex after I looked up their patient insert online and last they updated it was June 2014. I have been taking Anastrozole by Apotex for the past 3 years with no problem. One thing the pharmacist informed me at Apotex and this surprised me, is that not all their ingredients they purchase to combine in these generic drugs are 100% pure. It could be that cross-contamination occurred at another factory before it got to Apotex. I went up as far as I could with Apotex to find out if they added this and just had not updated their patient insert yet but they would not admit to anything.
Mylan no longer makes Anastrozole, nor does Sandoz and another manufacturer which I have forgotten their name.
I do check "Daily Meds" quite frequently to enter the NDC number, just in the offhand chance someone has updated the inactive ingredients but as of today Apotex has not updated anything for Anasstrozole.
My cancer center sent me home with a prescription for Aromasin swearing there was no Povodine or Cross Povodine in it, but of course there is. Now Exemestane generic for Aromasin is currently being made by Greenstone but Povodine is in there too. So, now back to thinking about Femra.
Thank you soo much for offering to help me with this dilemma. I discovered I had this allergy when my cat had surgery and I kissed part of the swabbed orange part on her fur and that contained Betadine which of course is in the family of Iodine. My HMO pharmacist discovered the link to all the drugs I was having difficulty with was linked to Povodine. And Povodine is in most all drugs now............... oye !!
Jo
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Jo, I just checked my Teva anastrozole and it also has povidone (guess that is the correct spelling according to Teva and Dr Google - full name is Povidone Iodine). Dang. What a challenging allergy. I hope you can find something that works for you!
HUGS!!
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Jo - It surely sounds like you've done your due diligence on tracking down your allergen. I'm kinda surprised that Daily Med is not more up to date. I really didn't think Sandoz made it. I thought they were loosely connected to AstraZeneca (takeover bid or something). I wouldn't think 2 major players like they are would make the same drug. Wish I had better suggestions for you on the Femara front. I have leg swelling but since I retired I've become a couch potato/computer hog so it's of my own doing. Have you talked with your PCP about working around/thru the side effects of Femara? Odd that Anastrozole has Povidone but Letrozole for the most part doesn't.
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Regardless of those who do not have S/E, I think this thread is important for all of us to recognize that S/E do in fact occur and that our doctors and pharmacists owe it to us to let us know what they might be. That does not mean that we are looking for them but instead are informed. I recently noted that depression and anxiety can be S/E's from Anastrozole and wish I had been informed earlier~~instead I blamed myself for a long time. I have been on Venlafaxine (Effexor in the US) for 3 weeks now as well as taking a MBCT (Mindfulness Based Cognitive Therapy course one-on-one with a senior Psychiatric resident at our cancer agency. My MO actually suggested that antidepressant because it often helps also with hot flashes and it has.
PontiacPegg, sorry but being positive is not always the best advice when people are looking for answers and also it is not always those with S/E who post most often it seems on this site! I am looking for answers to the S/E I have, not being told to not think about them. It is great that you don't have any but I do as do many of us do on Anastrozole. We are aware that is probably life saving and so we take it but it not always easy.
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Thanks for the reality check Peggy! I needed that. I have to go into this thinking positive and not anticipate problems I don't yet have!
I think I'm just nervous because I have a lot going on this week. As a result of a scan, found out I also have thyroid cancer and had my thyroid removed. Will start anastrazole on Tuesday, last rads on Friday, and will have radioactive iodine treatment after rads this Friday, which for me means being away from my kids for a whole week. Just have a lot on my plate right now, and so much to think about.
PB
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