For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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When I tripped over my grandkid and went down, that would have broken a 20 yo wrist. Some of my docs tried to blame the pill..I don't think so. Nothing else broke, and it sure could have broken plenty.
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Renabel, the C in DCIS means carcinoma! How is that not cancer?
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Janet, they are actually working on having the diagnosis changed so as not to contain the 'C' word. I used to hang out on a DCIS site (Donna's Choice) but was kicked out when I became Stage IV. It caused them all too much stress. (places back of hand to forehead like they do in silent movies).
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That was really nice of them, Dunesleeper. NOT. Hand to forehead quite an understated response! HUGS!!
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I know the feeling Dune, I went to a breast cancer group to get some information when I became stage IV. The organizer came up to me afterward & said that she thought I might be happier going to another group. I was taken aback, I hadn't said or done anything. It was pointed out to me by my nurse navigator that they don't like stage IV ladies at those meetings because it just upsets everyone else??!! Wow, like you wouldn't want to have reality smack you upside the head.... GG
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GG, I'd have been pissed off with that attitude. Guess they thought you'd contaminate them. I hope you found a much more welcoming group. I don't understand that reasoning at all. And besides being mad, it must have hurt. HUGS!!
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Yeah, it was a bit uh . . . . hurtful. Anyway, they think that DCIS should not be treated, but rather watched. That's really the gist of it,but I'm sure a quick search will bring up a lot of news about it.
And GG, it's a terrible thing to admit, but I briefly thought about how they will feel if theirs should metastasize and they were no longer welcome. I pushed it down as an unacceptable thought, but it was there. I'm sorry it happened to you too.
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I didn't bother going back, I was just trying to get my head around a stage IV diagnosis. It wasn't worth the ferry trip there & back. I just wonder how upset all those stage I & II ladies are going to be when/if they get mets. I think I was more flabbergasted than hurt. This was at the Cancer Agency, you would have thought they would be more inclusive. GG
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Gawd we all keep posting at the same time!!
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Dune, When they did the path on my lumpy, they discovered that they had removed a 9mm DCIS that hadn't shown up on anything as well as the IDC. Frankly, I'm glad it's gone. I really haven't studied DCIS so don't know the current (or un-current) thinking about it. HUGS!!!
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Yes, we do, GG. That's even worse that it was the Cancer Agency. Shame on them!
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shhhhhhhhhhh don't tell anybody, maybe it's catching..........ROFLMAO
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Red, Psst! No kidding! LOL
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WaveWhisperer, I'm not trying to be a cloud (and I have a different sneakier cancer) but, I will never feel secure again no matter what an imaging machine says. They originally DX'd me at a lower stage because CT, MRI and Nuclear Bone Scan all said NO cancer present outside the breast and axilla. Well, the MRI saw the tumor under the arm but just a little cancer in the breast and that's just b/c they knew it was there by then and knew where to look.
PET is the only test that sees anything, even the cancer in my bones they assured me wasn't there with the bone scan from a few weeks previous. I know PET's are considered unreliable too, and I've only had one. I get another in a few weeks so I'll see if all my mets match from one to the other, along with the new ones.
Hearing that some "support" groups shun Stage IV made me sad! I've been so sad about my DX and it's hard knowing there are places I wouldn't be welcome.
Brookside, I don't think I'll ever have the nerve to try Ax again, even from the original manufacturer or Teva. My onc claims she never heard of SE's coming on so fast either, but I *know* it was those pills. Had NO issues before and the issues I got are listed, like severe dizziness, low back pain and hand stiffness/unable to grasp.
Mine were just very severe. I've read a lot of threads around here where gals says they stopped Tamox or an AI after 1-3 weeks due to SE's. Those are fairly fast occurring. Mine were even faster but still the SE's that were listed.
I LOVE your suggestion about going to the ER when those SE's happen. We discussed doing that when the awful Ax reaction happened but I was in too much pain and too emotionally upset (feeling betrayed by doctor and drug) to be interested in going there. Hubby just held me and let me scream and cry. Maybe next time tho.
I realize what the alternative is for not taking these things but I have to be honest - I see so many comments here and elsewhere with ladies being (IMO) in agony with aches, pains and SE's and they justify it by saying they're surviving. Guess I don't want to survive that bad. I don't want to die (I really don't!) and I will see if there is something else I can take but if not, I'm 47 and I don't want to feel like I'm 87 and need help with everything and hurt, and suffer. Just knowing I'm going to die young is suffering enough.
I took my first tentative steps in the palliative forum the other day. I cried a lot there but also found it comforting as people there seem more accepting of just enjoying life. I know some have *had* to. I may be one of them. My doctors profess frustration at medication sensitivities I have they've never seen and don't understand.
I'm on Myomin now (herbal AI) and so far that's okay. Beggars can't be choosers LOL!
I'm in between onc's at the moment as mine gave up when the Ax didn't work out. So I have to wait out the grievance process and sit here (again) with no doctor and no tx save for my supps til the administrators get it all worked out and get me another onc.
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Cee67, what a rotten time you've had. Wish I could say something to make it better. Since I can't, I'll offer you many HUGS!!!
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I am sorry that you have had such a rough time, Cee. You should go to the ER and scream and cry there. Maybe they would take you seriously....geez!
Dune & GG27, you should go in and talk to whomever is in charge of those so-called 'support' groups.....they should be ashamed of themselves!
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Ewwwwww they think they'll catch
CANCER COOTIES
Shame on all of them
I realize it's not funny, and it had to hurt. But sometimes you gotta laugh.
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That is so sad that some of you have been excluded from support groups. I belong to a small local group and there have been members will all stages and types of cancer, I always found it wonderful to have all views/aspects/stages....
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I have been suffering off and on with arm pain. Started in my right wrist and has worked up my right arm to my shoulder. Now its in my darn left arm, wrist, elbow and shoulder. Im 61 and have never had the first bit of arthritis. I have been on Anstrazole for 18 months. Does it ever end? Can hardly pick up my grand kids and had to give up my jewelry making and it breaks my heart. I can take Advil and it takes the edge off but I can live on Advil for the next three years ! What about this Vitamin D ? Larger dose? How much. Help !!!! I need some relief !
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Hi all, I have found all the support I need right here on these boards. I have been taking Arimidex for almost 12 weeks now and have only had some hot flashes. Mind you my Vit D3 level is 116, don't know if that is keeping the bone pain so many experience at bay. i have also been reading Chris Woollams book on oestrogen and his website canceractive.com
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Here's one study: http://www.ncbi.nlm.nih.gov/m/pubmed/20665105/
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My MO didn't bother to test my levels, just put me on 30,000 IU once a week. Sounds like a lot, but they say it's safe.
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The meetings were held at the Cancer Agency but they only supplied the room, the moderator was a Social Worker. I did say something, to the Nurse Navigator, but I didn't bother to take it any further, can't be bothered wasting my time trying to get into a group that would rather not have me. This wasn't a group for all cancers, only for breast cancer & I noticed afterwards that the sign said early stage breast cancer, whether it was changed after I went or not, I don't know.
Didn't someone famous say something about not wanting to be a member of any club that would have him?
My friend who has stage IV colon cancer said the same thing happened to her when she went to a support meeting, she did not feel welcomed at all, tho no one said anything to her. It is sad but I'm over it! Now I just get on with the business of living as well as I can. GG
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BusomBlues, sorry that the hair loss continued
At least you can go back on Arimidex.AussieElaine, like you I've found all the support I need here too. I went to one cancer support group meeting and found it a waste. One woman did nothing but talk over the other 6 of us there. And of course, everything that had happened to her was either oh so much worse than anyone else in the world had experienced OR oh so far superior to the rest of us mere mortals that it got a tad annoying. The moderator was totally useless. I told the nurse navigator who was in the charge of the program that and said I didn't see a reason to return. Mine wasn't the only complaint.
Wow, Jennie93. 30,000 units DOES sound like a lot. I take 14,000 a week but definitely not all at once (2000/day). Maybe I should ask if that's enough. I do need to be tested for my Vit D level again.
GG, I totally get what you're saying. And you seem to doing a good job of living. We're here for you. And we all know this is the best damned support group ever!
Hugs to everyone!!
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Starynights, I had been taking same meds as you and I had ongoing right hip pain. I decided to try name brand Arimidex, just to see if it mattered. I had also had to add a second blood pressure medication due to my blood pressure increasing. I did this a few months ago but only for a month and failed to keep records, so got the generic refilled. Then, hip pain started up again, so finally got the name brand again. I counted my pills, been taking it for 16 days now. Three days ago, the hip pain stopped and since about the first day, I stopped the second blood pressure med and my blood pressure is about now back to where it was pre mastectomy. So, I'm continuing my experiment. You might want to try name brand a month or so and see if it matters.
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Cee67 I don't understand the oncologists giving up because AIs didn't work. There are so many things that can be done. The radiation I'm getting now seems to be kicking most of my pain out of my life. Plus, ibuprofen is a help. I take it for a few days, sometimes just at night, with food. Then I might go a week without it before I start feeling some additional pain. You could even consult a naturopath. They are expensive, but well worth it - even if just 3 appointments: initial consultation, bloodwork, return visit for recommendations based on the bloodwork, then a follow up in 3 or 6 months or so. I can't afford to go frequently so that's how I work it out.
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If you want, I can repost my 'Drunken Raisins' recipe; it helps some people with their arthritis or arthristis-like symptoms.
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ruthbru, I've been meaning to tell you that I gave several people Drunken Raisins along with the recipe for Christmas!
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Did it help? I got my DH started on them for his achy knees and now he swears by them!
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I started anastrole (generic Ameridex) 7.5 months ago. When I first started I had joint pain; but started taking 2 Omega 3s a day and that took care of it. Then about 4 months ago I started having carpal tunnel and trigger finger issues with one hand and went to a hand surgeon who said he is seeing a lot of women post menopausal and breast cancer with the same problems. Fast forward another two months and now the other hand is having much worse symptoms than the first and every joint is aching and I feel like I am 105. I spoke to the oncologist's nurse (MD was out of town) and I am to quit anastrole for 14 days and call them back. Have others of you had this problem? I noticed one of you switched to the branded Amiridex; did that help? I have upped my Omega's to 3-4 a day; take vit d and now adding turmeric. Still hurting like I am 105 rather than 61. Any thoughts would be appreciated.
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