For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Haven't been on the sight for quite some time. I've been on Anastrozole since diagnosis, 12/1/13. My body's initial reaction was great. 8 cm tumor in left breast shrunk to 1cm. Pet scan in July 2014 showed no active cancer in my spine, sternum or breast. Pet scan December 2014 showed a new bone met L4. Hot flashes were bad at first, they've subsided somewhat. Bone pain increased, I don't know if it's from Anastrozole, Xgeva or mets. Also, any sight that previously had arthritis is quite painful. (Cervical spine C3-4, Lumbar spine L4-5 L4 now has a tumor, right knee). Is swelling and pain in previous osteoarthritis sights a se or should I be asking these questions on the bone mets thread? I went to see a friend in Florida for a few days. I'd been experiencing swelling in right knee. By the time the plane landed, I could barely move my leg. By Saturday, I was in the ER to make certain it wasn't a blood clot. Turns out I have a Baker's Cyst and Knee Effusion (fluid and swelling). I go to a ortho tomorrow, Monday 3/9. Any ideas on case or what I should specifically ask MO at the end of the month?0 -
Hi Sharon. It wouldn't hurt to ask on bone mets thread also. I'm completely confused. I thought my pain was bone mets, but why does it get so much worse at times? Then I hear the anastrazole could be causing joint pain. I hadn't thought of the all over pain as joint pain, but maybe it is. So I'm trying to get the TEVA brand to see if that changes anything. Then I hear some ladies have this all over pain reaction from the xgeva shot, so I've been watching for that. I don't thing so. Not this month at least. It's all a bugger to track down.
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Jennie93 and Dunesleeper, thank you both for responding! I, too, am afraid of recurrence. That is the main reason I still take the anastrozole, too. What is the Teva you all are talking about? Is it a pain medicine? I have started using an anti-inflammatory patch and it working pretty well. It is diclofenac in a patch. I am very pleased so far. And exercise helps too. I am making myself go to the gym. Not only for weight loss but also stiffness and joint pain. Jennie, I will try the Vit D again. I had a very low vit D level during chemo and took it then. I will give it another go. It is so reassuring to be able to talk to others dealing with the same issues I am dealing with!
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Nightnurse, Teva is one of the manufacturers of anastrozole. Many of us have found that we have fewer SEs than those from other manufacturers. Having read how ladies would switch to the Teva brand and have their SEs lessen or go away, I requested that brand from the start. I've had no problems so far. We believe that sometimes the slight change in ingredients can make a difference. It's worth a try. Most pharmacies will be glad to order the Teva brand for you. I use Walgreens and have it specified on my record that I only want Teva.
My MO put me on Fosamax when I started anastrozole. Obviously it doesn't prevent pain but hopefully it will protect my bones. Vitamin D is always good. I think we all are afraid of recurrences and thus very willing to take AIs as long as possible.
HUGS!!!!
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Please make sure it's D3. I was way low on it years ago, my pain doc had me tested. Then my MO told me to take it too, along with calcium for my bones.
The D3 helps my fibro, my bones, sliding towards osteoporosis.
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My story, and I admit I do not know what it means...After a year of extreme joint pain on Arimidex, I switched to Aromasin, and had been on it for 1.5 years with no ill effects. Then, in December, I began having extreme pain in my left hip. I told my MO about it, and she said to up my intake of D3 and we'd see if that helped. During January, not only did the left hip pain get worse, but I also had pain in my right hip, both shoulders, right knee and, strangest of all, in the bone between my shoulder and elbow, the humerus. I could not find a comfortable sleeping position. The pain in my arm reminded me of the bone pain that signaled the beginning of the end for a friend who had been DX'ed the same time I was.
I was convinced I had bone mets. I could think of nothing else. I persuaded the MO to schedule a bone scan. I spent 5 hours getting that done, from getting the IV, waiting 4 hours for it to absorb into my bones and then the hour-long scan. It was on a Friday afternoon. On Saturday morning, the MO's very thoughtful nurse called to tell me the scan showed no sign of any bone cancer.
I lay down, slept for 3 hours, and woke up pain-free. In the past month, I have had none of those pains. All that pain was real, but what does this say about the mind/body connection?
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WaveWhisperer, it says THANK HEAVENS!!! So glad that there's no sign of bone cancer. But that sure is peculiar that you had all that awful pain and then it went away. Glad you're pain free whatever the cause. HUGS!!!!
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Thanks, Peggy, I agree!
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Have heard some get relief from switching manufacturers, or switching to name brand, but everyone is different so you never know until you try. Funny thing, the whole time I was on tamoxifen they sent me the Teva brand. (Our insurance requires we use a mail order pharmacy for long-term meds and you take what you get.) And I figured when I switched to anastrazole it would be the same. But no, not Teva, some other brand, Accord something. Weird huh? But since I had horrible SEs on the tamoxifen, and there's some suggestion that maybe it's the inactive ingredients that cause some of that, I'm thinking it's just as well to try a brand other than Teva. Time will tell.
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Jennie, perhaps the things that bothered you on Tamoxifen are not present in the Teva brand of anastrozole. Definitely give a different brand a try if you are having problems. Don't you wonder what it is that bothers so much or if maybe something inactive combines with the active ingredient to product rotten SEs? Baffling. HUGS!
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I personally think it's the active ingredient, after all, why else would things like hot flashes, weight gain, and joint pain be so nearly universal with these drugs? There are many manufacturers. But if you're having any issues a bit more unusual, it's sure worth a try switching. Heard you can get name brand Arimidex direct from the manufacturer for $30/mo. if your insurance only covers generics.
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WaveWhisperer- it really says volumes about the mind/body connection - wow, the worry you must have experienced.. I am so glad for you that it turned out so well...
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Jennie, I don't know about any of the SEs personally. However, the hot flashes can come because that last little bit our bodies were making is being eliminated. That's what the AIs should do
Anything can be causing SEs. HUGS!0 -
WaveWisperer,
I once suffered from severe depression and had depressive pain travel from one part of my body to the other. Teeth were the worse. Nothing was wrong.
Now I always question pain. It's a PAIN to have to do that, to have that doubt. I thought I was over this, but recently had a kidney infection and pain in the area. Got a CT and the pain went away. It returned once but not again. The CT found nothing wrong. Now pissed I had the CT because of the radiation. Now I've severe hand pain, but a trigger thumb too, so this is real.
I hate BC.
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I go tomorrow to decide which drug to use.I am postmenopausal so Dr. only mentioned Anastrozole. I have been reading about that and
Aromasin. I also found numerous sites on body building where the people also use these drugs. Thought that was a little strange.
Anyway I have DCIS in both. Lumpectomys followed by radiation. I consider myself very lucky and almost feel as if I have no business even posting on here. After all I was told I had pre-cancer not really Cancer.Well all I have to say about that is I did not go through the surgery and
treatments for the heck of it!
The more I read the less I want to take either drug. The joint pain and weight gain are honestly scaring me. I mean I have such a low % of it returning.I could almost talk myself out of taking anything.
How I wished I could talk to my precious Mama.She died of breast cancer after 20yrs. in 2013.
Thanks for listening. I just needed to vent a little.0 -
Renabell, Welcome! BS to those who told you you didn't have cancer! Please do vent. I'd want to throttle those people. While I'm not that well-versed on AIs, I haven't heard of them being used for bodybuilding. Keep in mind when reading the various forums here, that many of us have no trouble with AIs. I haven't been on anastrozole that long (6 months) and I've had no trouble. A friend of mine has been on it for several years with no SEs. Quite often we post because we do have a problem thus giving the impression that everyone has SEs. Only you can decide what is best for you. For me, I want to do everything I can to make sure the cancer never comes back. But that's ME.
Your lovely Mama is up there listening to what you are saying. And I suspect you probably are hearing what she has to say back. So very sorry for your loss. It is always hard.
A reminder that if you make your diagnosis and treatments public, we all find it helpful when giving you our thoughts.
HUGS and good luck with your decision tomorrow!
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I have to wait until April to try the TEVA brand, but Rite Aid will definitely order it for me when the time comes. Insurance won't pay for it until April, though.
I'm having a good bit of pain tonight, but the oxycontin is helping. It seems that the whole body pain is not related to my xgeva shots. I'll have a month to notice what difference the radiation makes in my pain. Then by the time I get to the Teva brand of anastrazole, I will be able to figure out if the anastrazole is the problem.
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Rena,I was originally diagnosed with LCIS and told to take tamoxifen. My NP friend said baloney....that is lazy cancer, we are going to talk to others. Thank god, as the breast specialist I saw immediately went into action. It took two biopsies to find it, but they finally got to the tumor, which was a combo of IDC and LCIS. You had a contained diagnosis which is great, but will go though much of the same thing the rest of us go through, so educate yourself all you can.
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Doxie, thanks for your understanding reply. After BC, nothing is the same. Fears can run rampant. My mind can be a very dangerous place. Actually, I've had something similar happen before. Several years ago, I started getting dizzy--not vertigo-losing my balance,-bumping into things and having fuzzy brain. I went to two ENT's, had an uncomfortable VNG test to rule out inner-ear problems. I saw 2 opthamologists to rule out eye problems. By this time, I was sure I had Parkinson's or brain mets because I was now having full-body tremors. I saw a neurologist, who examined me and ruled out ALS, Parkinson's and MS. He ordered a brain MRI. I was shaking so badly they almost couldn't finish the scan. This went on for two months, with no DX. I finally went back to my primary care physician, who put me on a new and stronger antidepressant. By the time the antidepressant kicked in, all my symptoms disappeared. I know your trigger finger problems are real. I've read many of your posts on several threads.
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Jennie93, yes, you can get it from a pharmacy in Florida, mail order, for $30. They handle it for Astra Zenica. I am doing the name brand and so far, it seems to be helping with hip pain I had been having and with blood pressure issues.
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I have taken anastrozole for a couple years. My tumor in right breast has shrunk until we no longer can find it! I think I will be on the drug until five years goes by but we have not spoken of that yet. For nearly a year or maybe a little longer, I have had facial pain. At first I did not know where it was coming from nor why it presented itself. Recently, I have determined where this pain is coming from. It centers in my lower right jaw area. I had a molar extracted there and the pain seems to be centered at the bottom of the hole where the molar was. I wonder if anastrozole is a biophosphonate and might be a contributor to osteonecrosis of the jaw? Although photographs of this condition online do not look like my mouth, my pain feels like it might be from this condition and caused by the drug. Anybody have anything like this?
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JoEvans, I have it. They've done all kinds of scans but so far, nothing. With mine, my jaw is numb as well, like novacaine. I see oral surgeon next week. Others on the board were only able to get theirs diagnosed by an oral surgeon. The treatment is just a standing order for antibiotics so it seems to me they could have tried that to see what happens, but what do I know? I'm just the one with the jaw pain and numb lip.
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Renabell LCIS is called precancer but DCIS is still questionable. For sure they are both considered non-invasive. Sure you are lucky that your cancer remained non-invasive but you still have breasts/breast tissue and having DCIS does put you at a higher risk to get it again. You have every right to be on these threads. best way to learn about all this.
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Anastrozole is not a bisphosphonate but I wonder if there is a warning about telling your dentist if you are on this drug - seems like every drug I am on has that warning these days. Are you on any calcium or other "bone building" supplements? Pretty sure there are other postings on this site about this subject. Good Luck.
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My MO put me on Fosamax at the same time as the anastrozole.
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I saw someone commented about the fact that body builders use some ALs, I asked my trainer about that years ago, his reply, they use way stronger version so not to worry about that
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Proudspin I bet those guys who use it have their balls shrink
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Lago: HAHAHAHA!!!
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could be on that! Years ago someone on a dif thread was trying to argue for a smaller amount of the med, that is when I asked my old trainer! he would not agree that we all could get by with a lower dose!
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Renabell-- some of us have had limited if any side effects. Don't let everything you read here make you think you will have the same experience. There is a mild adjustment period to the medicine, (in my case) and nothing major at all has really happened. I had one severe dizzy spell that the doctor thinks was a vestibular migraine, and I did fall and break my wrist a month ago, but I stepped on black ice so I fell hard.. I didn't break a hip or a leg, so the wrist was probably gonna braeak anywy from me putting it down to stop my 176 lbs dropping 5feet 7inches... try it with an open mind.....
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