For Arimidex (Anastrozole) users, new, past, and ongoing
Comments
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I have same follow-up schedule with MO described above. She asks for a blood draw every time so I assume she is paying attention to something. I have my first 3 month follow-up soon so I have a long way to go. By then there may be a standard of care!
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my MO does a blood test (not sure what she is checking but..),
I have not had a bone test since the year before starting on my med, doc did not think it needed as I was fine with no osteo before the med. I do have a script to do a bone density thing when I go for my next mamo but it was as I asked for it from my onco. My PCD is sort of...brain dead at times on some stuff and am thinking of a change. I go on new insurance plan next month (medicare) so that may be a good time to change
hoping all the gym time has kept my density in line
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Thanks for all the replies and kind encouragement regarding Arimidex, weight gain and my lack of exercise. I'll be honest. I agree 100% with all of you. Migraines definitely get in the way of any logical plan, but there are a few other days in the week. I have tried treadmill and also swimming with a medicated migraine (Imitrex), but it only worsened my migraine. Still, treadmill is easy as exercise goes and becomes easier as it goes along.
Perhaps my worst enemy is my (diagnosed) severe depression. I am so depressed I find every excuse not to leave the house even after a migraine ("It might come back!") as my migraine trigger threshold is so low. Luckily, my neuro has referred me to a psychologist that works with their migraine patients; Monday is my first appointment. I was also referred to a new psych for reevaluation of my antidepressant, which has been managed by PCP until now. Although I've been depressed and anxious well before my migraines and on meds for it back then, the near-daily chronic pain needs to be addressed from all angles. I want to live, not just survive. Please understand that I am *well* aware how very lucky I am my BC was caught fairly early.
I plan to speak to the psychologist about my complete lack of desire or willpower to do things, despite trying really hard. For me, light housework, making the bed, even taking a bath can be a big struggle, but I do force myself each day to do the basics. My daughter will gladly hold me accountable on both weight and exercise if I ask her, which I'll do today. She's remarkably fit, as I used to be, and very supportive.
I'm not making excuses above, although it sure sounds like it. What I'm saying is I'm SO depressed and deal with chronic migraines and need this psychological support as well as medical to GET GOING, as logically I know what I must do !! I also need support to lessen worry about my BC dx (for example, every time I so much as wash my underarms). My parents and family passed away many years ago and I have only one friend I speak with by phone when well. My loving family shouldn't be burdened with more issues than they already are. Looking forward to seeing the psychologist on a regular basis.
I truly love all of you, my sisters! Your persistence in reading through my long notes is SO very appreciated! Have a beautiful weekend. Wishing you all great weather and joy! xo
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By Faith, you so are so open & honest, I think that is a admirable quality. It seems like you are ready to get even more help for your depression and are willing to talk to a psychologist. That would scare me, I talk to my PCP, and spill my guts. I am lucky that I knew her & played competitive tennis with her before she became my Dr. She knows me from my healthy days, when life was good with lots of activity & fun.
Dealing with this cancer sucks, my dx is scary & I have/am struggling. As difficult as it is, I am, like you forcing myself to do things.
Not an easy time to start a class, or join a club. But that would be my wish for you. We all need human interaction, other than our families. Walking group, lunch buddies, volunteer at the soup kitchen, whatever you think would appeal. Easy? No, but it a start. I am a golfer, so that is my social fun. Lots of communities have beginning group lessons, very affordable. Generally these groups are fun, as everyone is struggling, laughing, trying to get the ball in the air.
My stage 3 dx hit me & family hard, duh goes without saying really. My motivation has been to stay strong & set am example for my adult kids...keep posting, great support here...
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ByFaith depression is a tough disease to battle too. Just note that exercise can help too. Especially if you are walking outside. It may not cure but certainly will help
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BBlues, I have been thinking of you, was out if state last week, but remembering a post of yours, & how much you were sleeping.
Of course you could be depressed or certainly very "blue" due to your situation. Wish we could all magically get together, walk on the beach, tease each other about our goofy hair. Mine is starting to look like Albert Einstein.
Lago has great advice. Get out in Mother Nature, a walk somewhere. I live in a rural, but beautiful place. I am right next to the Snake River Canyon. Baby steps is right....
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hello, Everyone, just trying to keep up with your posts and give you an update with my life on Anostrosole. I did start exercising with Lago's walking video suggestion. I love it! And helped with my mood, so any depression, we all need the routine of exercise, I am convinced! And this is an easy way! Thanks again,Lago. I did get my yrly mammogram, all good, but now I have dense breasts. I had my bone scan and determined no bone mets, so glad and thankful, but the scan showed so much damage, I am not sure due to Anostrosole or age, I am 65. It showed four vertebrae damaged, a knee, a thumb, both shoulders, no wonder I am in pain:( So, I emailed my MO and told her I am thinking about quitting the drug. She wants me to stay on it. I have completed almost 3 years on it, and I am scared about my bones. What do you think? The MO emailed me the stats...15% chance of recurrance without the drug, with the drug 7.5% chance of recurrance. Now, if I were just the average woman out there with no cancer, the chance of getting BC is 13% anyway...help me decide, PLEASE....I thought radiation was a difficult decision, too. BTW, the scan showed damage to my ribs due to radiation. Still healing 3years later...
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Hi BB and others ... Made it my goal to exercise on our treadmill at a fast walk, slight incline for 30 minutes this morning.
I ended up at just over 30 minutes and just over 1.5 miles. I'll try to say hello and post my progress on the fitness board as I go along.
I'm with you BB ... baby steps. I started out with baby steps this morning, but my stubborn nature wouldn't stop until I had built up a good sweat and longer walk. Now a bath, then lunch. Adding in some organic fruit and veggies for lunch. Normally I just have something like a no-additive bean burrito and organic brown rice, but I need to add variety. My vitamins and supplements aren't enough.
Thanks for the encouragement! Luckily, so far a no-migraine day.
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Hi Stage1 ... I'm happy for you your mammogram and bone scan were clear, but sorry to hear of your bone issues. I would be in a quandary, too. When I was thinking of stopping after 3.5 years, my onc said there is no guarantee on the AIs, but she recommended 5 years, yet said she'd be fine if I stopped as long as I was "at peace" with that decision. She said the women who she sees who go off are at peace and made a clear decision. I simply wasn't "at peace" with stopping, so I continued. She said I could take a drug holiday if it got to be too much.
I wish you the best in getting some really good advice here. I wish I could help, but feel indecisive as well.
As for heading outdoors, I think I'll follow the advice here (as well as my dogs' daily habits) and just sit outside listening to the birds after lunch. My oldest dog is 11 and loves just "living in the moment" outside. They teach me a lot, too. ;-)
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hi, ByFaith, I should add, I am taking elevil for a long time, before BC. That was for fibromyalgia and it helped for sleep and therefore, mood. Are your bones surviving the Drug?
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Stege 1, since you are asking for opinions, I'm just going to jump in and please note this is my opinion only.
First, I am also a Walk at Home convert. That walking has morphed into me getting a fitbit and really tracking all my activity. Love it. I do about 15K steps/day including intense power walking for about 30 minutes. I really feel so much better.phusically and emotionally and I have dropped about 15 lbs without really trying.
So about quitting the anti-hormonals. Here is my take. Comparing your risk assessment to that of an average woman getting breast cancer for the first time just doesn't make sense to me. Your risk is for a distant recurrence because you already "beat the odds" with your original diagnosis. I am very risk averse....I did chemo when it only reduced my risk by 3%. Being able to get my risk from 15% to 7.5% would be a game changer. If I were in your situation, I would at least talk to the oncologist about the risk/benefit of taking bisphosphonates (bone strenghteners). I asked my oncologist about them at my last meeting because the research shows that post menopausal women on AI and bisphosphonates have lower recurrence rates. She told me that with my current good bone density, she just can't make a case for taking the risk and that we would discuss it after my next bone density test...if I am deteriorating, then we will go with Zometa.
Anyway, these decisions are never easy.
MsP
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thank you, MsP, I will consider the bone strengthers. I know they are available, but a whole new set of SE's?
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Stage 1, yes always more SE's (sigh) No easy decisions ever for us. As I said to my husband. There are no good options....just options.
MsP
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Absolutely smart to address depression issues head on. Clinical (or situational) depression is as real of a disease as any other, and can make the fight against any other disease or problem even harder. Exercise does very much help to alleviate mild depression, but if you need medications, do no hesitate to take them, as they can literally save your life.
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As someone who has suffered years from depression and now have it well under control, I cannot recommend enough getting out into sunlight. If you have to stay inside, sit for an hour or so by a well lit window. Blue light therapy is also very helpful if done in the morning. I don't have to do it anymore because my laptop monitor casts enough blue light when on it in the morning. I have a profound burst of energy on a sunny day, few and far between this winter. It's about the only time I have any desire to do more than minimally tackle cleaning chores.
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hi, BosomBlues, right, but I was not in pain until recent few months, so I think it is Anostrosole. This was not the density test, it is the bone scan to look for mets, so no baseline. Get this....on my density test, shows ostiopnia. When I asked about comparing to the baseline, they tell me it cannot be compared, as the machines are updated quite often, so they could not tell me if I was better or worse. She said they will most probably not be able to compare next time either. She said it is a good thing to have new machines. This is Kaiser. Bosom, u bring up a good point. They should do baseline bone scans as a prerequisite to taking AI meds.
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for those of you suffering from depression, elevil really helped me sleep and therefore felt better physically and emotionally. I have been taking it for several years now, and will not stop. It has helped me through this BC journey.
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BosomBlues, I was just looking up Zometa. Thanks for your imput. I can handle the discomfort, but I am concerned that by the time I am done with Anostrosole, I will be using a cane! I just started enjoying exercise, again;)
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Re: Vitamin D. You shouldn't take without testing - you can have too much. Most people need to supplement, some don't, and shouldn't.
Vitamin K is very important to take with Vitamin D. Vitamin D helps you absorb calcium, but without Vitamin K, the calcium won't be directed to deposit in your bones - it can deposit in your coronary arteries instead.
From this article:
http://articles.mercola.com/sites/articles/archive...
"One of the undisputed benefits vitamin D provides for you is improved bone development by helping you ABSORB calcium. This is not news -- we have known about vitamin D and the absorption of calcium for many decades.
But there is new evidence that it is the vitamin K (specifically, vitamin K2) that directs the calcium to your skeleton, while preventing it from being deposited where you don't want it -- i.e., your organs, joint spaces, and arteries. A large part of arterial plaque consists of calcium deposits (atherosclerosis), hence the term "hardening of the arteries."
Vitamin K2 activates a protein hormone called osteocalcin, produced by osteoblasts, which is needed to bind calcium into the matrix of your bone. Osteocalcin also appears to help prevent calcium from depositing into your arteries.
You can think of vitamin D as the gatekeeper, controlling who gets in, and vitamin K as the traffic cop, directing the traffic to where it needs to go.
Lots of traffic -- but no traffic cop -- means clogging, crowding, and chaos everywhere!
In other words, without the help of vitamin K2, the calcium that your vitamin D so effectively lets in might be working AGAINST you -- by building up your coronary arteries rather than your bones.
There is even evidence that the safety of vitamin D is dependent on vitamin K, and that vitamin D toxicity (although very rare with the D3 form) is actually caused by vitamin K2 deficiency.5
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I am experiencing hair loss. I have been on anastorzole since December 2013. Any thoughts.
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Basinlady5-my front hair is definitely thinning.. I still have hair but its thinning dramatically.. I think its the meds.. I also have gained so much weight and all of it in the stomach area.. its so depressing.. I am walking but all I can do is a mile.. I am happy with doing that but I have never been this fat. I feel like an old fat lady - my balance isn't that good anymore either.
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Stage 1 just took my 1st Fosomax minutes ago. Hope for no reflux but I'm not encouraged so I may be on an injectible eventually. There is a new one called Evista although I am now reading if you have an issue with blood clots you should not take it. I don't but there is a family history. I had osteopenia before chemo too. Chemo made it worse the of course Anastrozole. I wish I had seen a doctor about this before I actually went into osteoporosis status. This could have been prevented but it can't be reversed. Not happy with my onc right now.
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Thanks, just visited MO, and she and her associate recommended I see a dermatogist. They believe it is alopecia areatia. My visit will be in late April, but I wanted to get opinions and experiences from other BC friends.
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I would be angry at my MO also. At a recent appointment mine claimed his responsibility for my bone health by saying that I'd be really upset at him if the AIs he prescribed sent me into osteoporosis. He's like that will all my other SEs though he doesn't always initially believe they are AI related. Was your onc sending you for DEXAs or your PCP doing that? That may be the difference.
I too have lost some height, .75". But my spine and hip are a respectable -.6. Probably "normal" for someone my petite size and age. They haven't changed much in the near decade I've been tested. Neither has my femur, but it is -1.7. I had one infusion of Zometa a year before my most recent DEXA. I've heard it takes several infusions to really make a difference, so I don't know if it had an impact.
There are women here who have been on an infusion drug who report gaining enough bone mass to pull them well out of osteoporosis. I've not heard the same results from oral meds for those on AIs, though I've not looked for that info. I remember the photo of one, but can't remember her name. I'll provide it when I find her.
What I've worried about for you is that you find the right support to keep exercising. There has to be a way to keep fit, keep your muscles strong, protect your back, and build or stabilize bone mass without harming yourself. Surely a specialized PT could help with this. In Chicago, there has to be someone.
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Yes Doxie I got a dexa every years starting with right before chemo. Was osteopenic before chemo. Big drop after chemo/chemopause but after that drops were smaller. But in Oct. 2012 my spine was -2.3. I should have been sent to someone then. Oct 2013: -2.6. Hip stable at -1.2 and femur neck stable at -1.5. Every year there was a drop in my spine granted not as high as this last one.
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Your onc should have sent for meds in 2012 knowing that AIs were going to keep pushing you lower. I will be surprised if my Vit D and exercise routine will hold up against the AI. I suspect that there is a threshold at which your body and all you try to do for it cannot compete with the meds. At the least, we can fight to slow the process.
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Doxie you know I was doing the D, calcium and exercise. Didn't keep it at bay. Actually my Rheumatologist cut my calcium in half. She wants me to get it from food (already do) because newest studies say too much calcium isn't good. My calcium has been running high normal/slightly high so I don't see this as an issue to reduce. Also since Fosomax can have constipation issues I'm not complaining about less calcium. Constipation can be an issue with me since I also have IBS. I do manage it well with diet. I know my trigger foods.
BTW I found another food that is great for constipation: kimchi
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I see my MO in May and will have a DEXA scan prior to that. I've had three Prolia injections since my first scan in December 2012 so it will be interesting to see what my numbers are now. I was slightly osteopenic in Dec 2012 and started the Calcium/D supplements and Prolia injection regimen at that time.
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BasinLady, my hair thinned for about four months, then all of a sudden, the shedding stopped. I did switch to a biotin brand shampoo, but I think it was just that my body's initial reaction to the drug resolved. I've been wondering whether spring (if it ever gets here!) would set off a new shedding episode, but so far, so good.
Lago, I never thought about crunches and osteopenia (really close to osteoporosis). I do fifty crunches every morning in bed. I wonder whether that might be more gentle on the spine? Or maybe worse? I'm trying my best to walk most days and recently added some weight stuff. As of last year's DEXA I'm a hair from osteoporosis and started some bone building weekly drug a couple of months ago. My onc says I can probably drop the bone med once I'm done with arimidex. Only four years to go!
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Lago, thanks for the comments about what your onc should have done. That gives me confidence to ask about avoiding osteoporosis. I am osteopenia (determined by the density scan). So, I am not sure that this new diagnosis from the bone scan is the same osteopenia that we saw in the density scan. I feel so uninformed! I am going to make another appointment. Good thing for insurance, but I do have high co-pays. Keep us posted on your Fosomax and how you do on it. All your issues are becoming mine:(. You have been so helpful in decision making. Hope this Fosomax helps.
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