For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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Patoo, anything is possible with our MOs. More than any other onc, they seem to run the spectrum on SEs (among other things). Perhaps we just have more interaction with them than our BS and ROs. After all we are on AIs forever or close to it. Just baffling that they can deny SEs that WE know are caused by AIs. If I were to have SEs, I feel my MO would listen and not pooh-pooh me. As mentioned, he asked me why I would think I was going to get SEs, not that I wouldn't get them.
HUGS!!
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what I have noticed on arimadex is that I am always starving ! Not sure what that's about, I had a bit of joint pain, but I think the Claritin helps. Now is anyone having strange dreams? Very fanciful, and so imaginative and almost every night. I've been on the love boat, last night I was on a fantasy plane ride that could fly thru a water park. Really some are so vivid, I have to look around when I wake up.
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While I have only been taking Arimidex for 10 days, the first 6 days at bedtime, the bed was totally trashed from me thrashing about. The past 4 taking it in the morning, making the bed has not been as challenging. I notice more eating, not necessarily hungry but not satiated either. My blood sugars are stable with no steroids. Joint pain is the same. Too soon to tell about the mood, still going to weekly counseling. My Mom passing July 28th after 4 months in NH which coincided with my dx and tx proved to me a bit overwhelming. Starting back on antidepressant and talk therapy has helped. No vivid dreams that I can recall.
I saw the FNP of the MO who gave me the rx for Arimidex. My bone density is normal with scan due next year. To be proactive about preventing bone loss I chose to do strontium, calcium, vitamin D, K2 and trace elements. Will try to pick up the walking. As for the other s/e from chemo the nurses have been more forthcoming. Of course this site has been a wealth of information. As a pharmacist they come to me for the info, so it is up to me to report them.
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jerseygirl: Yes, the DREAMS! Most of the time they're just unusual and interesting, last night's was scarier and violent and even after I woke up it was hard to keep from going right back into the same dream when I fell asleep.
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I was on the Arimidex for 6 months and it depleted my vitamin D. I gained a lot of weight and hurt all the time. I was tearing bicep muscles, rotator cuff just by doing daily activities. I have now been diagnosed with osteoporosis. I am on Tomoxifin now but the damage to my bones was already done. When I talked to my oncologist about these side effects he instructed me to stop the Arimidex at once.
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I have been on Aremedix since Dec of this past year. I was doing okay with just some slight joint pain, but the past two weeks my fingers mostly are really stiff and sore/achy. It is getting hard to even hold my coffee cup for a long period of time. I am trying to push through but dont want to end up not being able to use my hands. Thoughts? Will this go away or just continue to get worse??
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VetteGirl, You might try Claritin. That's helped some ladies and it is rather innocuous so shouldn't cause other problems. Make sure you are getting enough vitamin D3, that seems to make a difference, too. Good luck!!!
VondaB, I'm sorry I don't have any suggestions for you
Take care!HUGS!!
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VondaB, welcome to BCO. Did your doctor suggest an alternative?
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If you have any kind of side effect that is painful to point you worry, TELL YOUR MO. Then, consider our "in the trenches tips". We have an MO because we don't know everything, and we are paying them for their expertise. If you don't like who you have, go shopping....but don't give up.
Vivid dreams---if you take an antidepressant or anti anxiety drug and add a new drug to the mix, it could be a result of the combo......or it could just be what you ate and what your subconscious mind was stewing about when you fell asleep. I dreamed of my high school boyfriends dad the other night, and I am 58 years old, and he is in his 80's so go figure...
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I had vivid dreams and sleep problems too, would wake up and not be able to get back to sleep again, this was when I was in my early fifties approaching menopause, same thing started up again fifteen years later when I started on Arimidex. I could not believe it! The very first night after taking the first pill I woke up at 2:00 AM. This felt very good to me as it meant the pill was working. These are effects, IMO, not side effects, the effects of shifting hormone levels just like during menopause.
Other menopause type symptoms I experienced during the early days on the pill were the return of (mild) hot flashes, sudden episodes of fatigue, headache, and the clincher for me, a need to keep adjusting the thermostat again when I would feel chilled. I called these cold flashes.
Kathy
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I recently ditched arimidex. I tried drug holidays, but my joint pain kept increasing. I developed tendonitis in one hamstring and the opposite Achilles tendon, and then a trigger thumb. Now it seems I have bone-on-bone arthritis in my hip and need a replacement. I didn't even know I had any arthritis, just thought it was joint pain from the arimidex. I'd tried exemestane for a while and felt I was just trading one set of side effects for another (out with the aches and pains, in with weight gain and hair loss), so had gone back on arimidex. I have just started tamoxifen. My onc does not believe AI's cause arthritis, but he very much understands that I do, and why. He indicated, by the way, that side effects tend to decrease after three years.
He also said studies indicate that for those of us who begin on an AI for a couple of years, then switch to tamoxifen until that five-year mark is achieved, that long term outcomes are very similar.
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vettegirl, I have been on arimidex for about 2 1/2 months and my only se is my weak hands. I can hardly make a fist and am really hurting by the end of the day. I am a high school math/computer science teacher so if I am not writing on the board I am typing on a computer. I know I need this therapy but I am not looking forward to the next 4+ years.
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Molly I think you'll get more help for your atrophy problems from the ob/gyn than the MO. Hopefully you've already been working with him or her.
My MO is always sympathetic and never denies the medication is causing SEs. She'll tell me "I'm sorry" like its her fault and we have a laugh.
For the hand pain, I improved a lot with heat packs at night and be careful of repetitive motion. I had to get a new, more ergonomic mouse at work and I'm more careful using my ipad or phone in the evening. While my trigger thumb has not completely gone away, there is no more pain and its not interfering with every day activities.
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I do take an anti anxiety pill so maybe the vivid dreams are more pronounced. I napped today and hubby said I was having one of my screaming dreams, I can't recall the dream, but he knows when I scream or thrash about, as he has been a victim many times. So I am not sure if I should mention to regular family dr. Or the MO already knows I have vivid dreams, he has heard of that, so guess I will confer with both. It might not matter, doesn't seem to be a big issue, unless it Leeds to something else?
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The only thing I would warn about with taking Claritin, or any antihistamine, on a regular basis is that it is known to cause or exacerbate vaginal dryness in some women. When I experimented with Claritin, it did seem to make the problem worse. So now I just take Claritin occasionally as needed and don't have a problem.
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Amylsp, I've never had that problem with antihistamines and I've been on them for nearly all of my 70 years. Claritin just didn't do much for my allergies. Obviously we are all different so a good thing to be aware of.
HUGS!
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jerseygirl, definitely talk to both primary and MO about it. Perhaps it is a SE that will go away in time but best to have them aware. I'm sure poor DH will be happier.
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Because of our risk of osteoporosis while on these meds, thought I'd pass on what I learned this week at a cancer retreat from a talk given by a dietician with her PhD. We'd asked her about the recent news report of how eating calcium and taking calcium supplements does nothing to help bone density or prevent fractures, and she said they didn't include Vit K in the study so it means nothing.
For years we thought the function of Vit K was its role in blood clotting, and the recommended daily allowances were based on what we needed for it to do that. Recently research has shown that Vit K is needed to activate the hormone osteocalcin, which shoves calcium into the bone. A low Vit K level is now considered a risk factor for colon problems, blood sugar management, kidney stones and cardiovascular disease. If Vit K level is low and calcium can't get stored in bones, the body tries to get rid of it in the urine, resulting in kidney stones, or it pokes it into the walls of arteries, resulting in cardiovascular disease.
They've also learned that we're more dependent on outside sources of Vit K than we previously thought (previously thought our gut made whatever Vit K we needed). Since most multivitamins are not yet including Vit K, we need to get it in our food.
She said we don't have to worry about overdosing on Vit K foods, no toxic level has been established for it. Also, it is not destroyed by heat, so it's OK to dry spinach or kale, grind it to a powder and add it to other foods, like in a spaghetti sauce.
Another reason to be eating our green leafy vegetables.
For those who are on coumadin, they can still increase their Vit K foods (and she said really, they need Vit K too), but need to be consistent with how much they're eating each day. She has a handout available as a guideline for those on coumadin.
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Im on Coumadin I've been told if I want to eat things high in K they can adjust the med.
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DH was on Coumadin for several years, too. When he had spinal epidurals for the pain in his spine, he had to go off it Of course he could never get his INR level down to safe levels for the procedure so I would heavily dose him with Vit K pills and that would do the trick. As an aside, when he first started on Coumadin he was in rehab after his heart attack. Well, the home didn't bother checking his INR for TWO weeks. He got a bloody nose that wouldn't quit so off to the ER. They tested his INR and it was 17!! No one had ever seen one that high. Needless to say he got shots of Vit K to counteract that. I seriously considered suing the home and would have if the doctor hadn't been so frantic and apologetic (both sincere) and he chewed out everyone concerned for not following the home's own protocol. Didn't have that problem again.
It's interesting though to know that Vit K plays another role in out body besides clotting.
HUGS!
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Going right out to buy broccoli.
P.S. I've been on a bone med (alendronate sodium--not sure of its people-friendly name). Despite two years of arimidex and continuing on my anti-reflux med (which also depletes bones), my two-year DEXA scan showed a little improvement in every area. Very happy.
For those of you who saw my recent message about moving from arimidex to tamoxifen due to joint and tendon issues, I do want to make perfectly clear that I am delighted arimidex was/is available, am delighted that I stuck with it for over two years, never, never would have considered not trying it, and look forward to continuing my recurrence risk reduction through the new drug. Honestly, new ladies, the side effects build so slowly, and your onc will give you a couple of weeks' vacation here and there to knock back those aches and pains, or will try you on a different AI, or even tamoxifen. Please do not fear jumping in.
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BrooksideVT, friendly name is Fosamax. I'm on it too. I had acid reflux long before starting Fosamax and it really hasn't gotten any worse. So far doing very well on Arimidex. It is nice to have options if one drug is a problem.
HUGS!
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BrooksideVT, I am determined to make it to the 2 year mark on AI's, at which point I will probably switch to Tamoxifen, like you. These joint issues are just too rough. My onc won't let me take a vacation from AIs. Her reasoning is that SEs lessen while on an "AI vacation" because estrogen increases, and she doesn't want to take any chances of lowering the effectiveness of the AIs. I guess I agree with her.
Actually, my joint pain seems to be a lot better these last couple of weeks. I still move like an old lady, but at least the pain is manageable! I hope things continue to improve
Someday they will find a better treatment and we will look back at this as the Dark Ages, but as unpleasant as our options can be, at least we have options.
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I just don't tell my MO when I take a vacation. It may only be a day, or as much as a week.
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Puffin, thanks for the Vit K info. I have had IBS since I was a teenager and colon cancer in my 30's. I have lost 2" in height in the last 5 years and no one has mentioned taking Vit K. Will definitely talk to the PCP and MO about this.
It's always something.........
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I am learning about vitamin k2 also, Dr Mercola goes into it quite nicely and the need for this little developed vitamin, so I have been trying to include it daily, going for my prolia shot tomorrow because I have had 5 fractures in the past 2 years. And now with being on arimadex my need is greater.
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JerseyGirl, I hadn't heard of K2. I should be in business since I do use butter daily and have eggs with yolks daily, too. I should probably increase my Vit K intake. Wonder what the ideal amount of it is.?
HUGS
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Here's the article by Cathy Breedon, a dietician with her PhD at our hospital, about Vit K
Vit K is a nutrient found to be low in the diets of many Americans, and it has only recently been recognized that we are much more dependent on an oral intake of vitamin K than we thought. It used to be thought that intestinal bacteria provided significant vitamin K, but apparently that is a much less reliable source than we thought … and even less helpful for anyone taking chronic antibiotics.
It appears that the elderly need more than the current RDA of 90-120 mcg/day to maintain an adequate level in their blood. Other age groups have not yet been evaluated in this way, but for several reasons it is very likely NOT just the older folks for whom the recommended intake levels are not optimal. This information is so new that vitamin K is not even included in many multivitamins currently on the market, and many health professionals will not yet have heard about these new issues. If you are interested in learning more, I have a "Vitamin K" handout available that includes all the scientific references and detail on this topic.
The dark leafy veggies are also terrific sources of vitamin K, a nutrient just now being recognized as critical to decrease risk of osteoporosis, diabetes, cardiovascular disease, kidney calcification, arthritis and liver and colon cancer.
Many people thought that vitamin K was potentially quite toxic because of being a fat-soluble vitamin. However, it is now well documented that vitamin K is a very safe substance and the fact that it will dissolve in fat has nothing to do with toxicity. In fact, no "Upper End of Safety" has ever been identified for vitamin K because no one ever overdosed on it. So go ahead and eat all the broccoli, spinach, kale, asparagus and romaine lettuce you can. The only cautionary note is for people using a particular medication described in the box below. If you are NOT taking this medication, vitamin K is very safe and it is critical to assure an adequate intake.
If you are taking the medication Coumadin / warfarin to prevent blood clots, be sure to show this information to your doctor before adding dark green vegetables to your diet.
New research on the relationship between vitamin K and these drugs will result in changes in how we do things. But because the information in support of these changes is very new, it will also be new to many healthcare providers, so I also have a special "Vitamin K" handout available that includes all the scientific references and detail for any health professional helping people using Coumadin/warfarin anticoagulant drugs. It is very important that your doctor sees this information before any changes in diet or medication are made.Besides the benefits of avoiding complications from use of this drug that can develop due to vitamin K deficiency (like osteoporosis), daily supplementation with RDA levels of vitamin K also seems to make these drugs safer to use by minimizing extreme volatility in blood coagulation. [Higher levels of regular vitamin K supplementation have not yet been studied but the issue likely will be looked at more closely now that the RDA levels have been found to be insufficient to maintain appropriate blood levels of vitamin K. Other anticoagulant drugs do not work by interfering with vitamin K so it is only an issue with the specific drug Coumadin/warfarin.
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Puffin, do you know how she felt about Vit K supplements? I thought I still had hubby's Vit K bottle around but we must have used it up. I wondered if it would hurt to take supplements? Thank you for providing this article.
HUGS!!
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I have heard that vitamin k was important for the absorption of calcium, but getting it through foods is much better than a pill. I love spinach, broccoli and green leafy salads, so I get vitamin k that way. I do want to look up how much we should have and how much is in food.
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