Monitoring and Reducing Risks of Aromatase Inhibitors
I asked how to monitor my HEART while on Letrozole. Suggested: Heart scan at the start of prescription then about 18 months later. A quick check found several for $50-$150, all out-of-pocket. Overkill: I asked if I should make an appt with a heart specialist and the answer was that it was not needed. Question: Do any of you take supplements for heart health due to AI use and were those supplements suggested by a medical professional?
For COGNITIVE functions, I asked about a cognitive/memory test that could provide a baseline score and then show any changes in about 18 months. The oncologist said no one had ever requested one. She suggested the psychology dept of the hospital could probably administer a competence test. ˙ʇɐ ǝɯıʇ this ʇuǝʇǝdɯoɔ M I ʇʍop ou ǝʌɐɥ I -a wee bit of humor- Even without a test, which could add to out-of-pocket costs, we might just be able to tell if our mental abilities or our memory was slipping. Question: Do any of you take cognitive supplements due to AI use and were those supplements suggested by a medical professional?
For BONES, the standard bone scan was suggested now and in about 18 months. The oncologist made sure I was taking calcium and suggested I add 1000 IUs of Vitamin D3 in gel form. The calcium tablet already has some D3, but I added the 1000s. I also take Glucosamine Chondrotin. Question: Do any of you take bone health supplements due to AI use and were those supplements suggested by a medical professional?
For CHOLESTEROL, it was suggested a lipids panel be done in about 18 months to compare with recent numbers. The Letrozole packaging insert says it may increase cholesterol and older studies showed substantial increases with Letrozole, but newer studies seemed to show less or no cholesterol increase. I asked about my cholesterol, which has inched up over the last decade to the high end of normal, but is very good for the ratio of good to bad. The oncologist agreed with my suggestion of eating steel cut oats (which have sadly slipped from my diet, shame on me). She also suggested losing 5-10 pounds to drop cholesterol. I am not at all overweight and am well within normal on height/weight chart. But losing 5-10 lbs would not make me underweight. She agreed it would be very hard to lose 5-10 lbs. Overkill: The oncologist felt statins to control cholesterol would have side effects that don't justify their use, in my case. I agree.
What have you done to monitor or reduce the risks of Aromatase Inhibitors?Comments
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My MO advised getting to a healthy BMI (which is going to take some hard work on my part as I gained 30 pounds during treatment last year) and daily exercise and weight bearing exercise (to strengthen bones). I get sufficient calcium in my diet but I supplement with Vit D (2000 units).
And I stretch in am and before bed (for joints)
Meg
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I had a baseline DEXA scan and was advised by my MO to add calcium/D supplement. Not testing for any of the other things you mention. I am an active exerciser - running, swimming, biking, walking,strength work, etc. at least an hour of something most days.
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I am 64 with preexisting conditions, so likely at greater risk than a younger woman for some of these problems
1. Heart: My MO suggested a stress-echo, given my risks for CAD with family history and already having a coronary calcification score in the moderate range 4 years ago, though no sxs. Scheduled for May.
Have already been on a statin for years, lipitor 40mg, we have increased lipid monitoring from once a year to every three months to assure no worsening, might increase to 80mg if LDL rises.
Am also losing weight and forcing exercise more. Less alcohol.
All of above per MO.
2. Brain: go slow if needed, keep brain active, write things down to avoid forgetting, no known supplements other than to make sure you are not already deficient in thyroid and b12 and D.
3. Bone: already had osteoporosis from steroids, with ongoing dietary or supplemental calcium and vitamin D to keep level well over 30 and 1.2-1.5 grams elemental calcium in divided doses. Changed from years of bisphosphonates to Prolia, to hopefully also help prevent mets. Lots of fall precautions, keep teeth in order to help avoid very rare ONJ side effect. Magnesium for both bone and heart.
The only supplement MO said I could consider is melatonin, but the label says use with caution in autoimmune disease, asthma, depression and epilepsy, I have the first two so no.
I asked about tumeric, she said we have no clear safety or benefit data compared with placebo, so unclear.
4. I also added vit C 500mg and Naturemaidsuper B complex, and MO did not object.
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Thank you Mom-mom, Runrcb, chronicpain!
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I was on Arimidex for 5 years without problems in any of the areas you mentioned. Here are my thoughts about your concerns:
*Heart health- the best 'medicine' to keep your heart healthy is to exercise, exercise, exercise!
* Cognitive-keep a busy, active, interesting lifestyle, learn new things, travel, exercise to music, eat more fish
* Bones-I had a baseline DEXA and have it repeated every two years. Yes, take a Calcium with Vitamin D supplement, try to get in a couple servings of dairy a day, also dried plums (ie prunes can actually BUILD bones, so add them to your diet if you like them). Weight bearing exercises (walking, running, dancing, lifting light weights) also builds bones.
* I'm pretty anti-statin (unless one's cholesterol is very high and/or the ratio is extremely bad). Mine is slightly high because of heredity. AIs didn't hurt (or help) the numbers. I am always trying to lose those same 5-10 pounds and trying to eat more oatmeal too (sigh). But my ratios are tremendous, so I don't worry about the overall number; although I do take Niacin, which is over the counter but was approved by my doctor, and boosts the HDL (I started taking it years ago, before BC) because my numbers were creeping up and I have a bad family history....another reason I exercise a lot!
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I love prunes, Ruthbru. Had 2 plump ones this morning. Thank you!
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I made it through 5 years of anastrazole with my brain, bone density, cholesterol, bones, and most other things remaining just fine. I believe that exercise it the magic bullet here. I didn't gain weight either.
I am still working doing consulting, so my brain gets as much exercise as my body does. I cycle, ski, run, hike, and swim when it's hot out. I do weights and crunches for toning. I try to eat good food, but also believe that I didn't go through cancer treatment to deprive myself of food. My HDL cholesterol is great, so like Ruth, my overall ratios are stellar.
I think my heart is fine and I keep it that way by training for long distance cycling events. Did 40 windy miles last Saturday. Training for #12 Seattle-to-Portland.
I take calcium, vitamin D, and a multi. Whatever's cheapest is what I buy.
Agree that steel cut oats would have been a better breakfast than those almond biscotti..... - Claire
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That's encouraging Claire. I agree that exercise is very important.
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DID ANY ANTIDEPRESSANT HELP WITH DEPRESSION CAUSED BY AIS. Or did you have any supplement or avoid any food that helped. PLEASE ANSWER CAUSE I AM VERY DEPRESSED and now after stopping everything except the antidepressants or 10 days I still feel ddepressed and have hot feelings in my arms.
I have complained to my family and they are nearing the end of their patience. My brother wants me hospitalized to see if that could help but all my drs said it won't work. I have spent the last 1.5 years trying to get some help.
Need help with aromatase inhibitors. Did anyone who had depression that was caused by the anestrozole find anything that helped? ANYTHING THAT HELPED. Can we start a new topic for that? DID ANY ANTIDEPRESSANT HELP WITH THE DEPRESSION.
I am probably going to go back on the anestrozole cause they are all the same. After being off the tamoxifen I still have hot feelings. My oncologist tried to help me by switching to femara 5 days got massive joint pain. Then tamoxifen has bad bad night sweats. Now sleep with ac on at 64 degrees.
I have depression from taking ai. It is very clear. I Never had the depression before that. None of the antidepressants I have taken help with the depression. It is pretty clear that the AIs are causing the depression. I have made my life miserable.
Been on anestrozole for 1 year. Woke up wanting to die plus I had hot feelings during day and I had depression during the hot flashes after finally took it at 5pm. Then I told oncologist how I was feeling so switched to femara.. Then femara, 4 days.. gave me joint pain.. then tamoxifen 4 months, no joint pain just bad bad depression now off tamoxifen for 10 days I still have depression only I think it's worse and that is after 10 days. Dr said I could try exetemase. So seriously thinking of that one.
The psychiatrist tried me on sertraline then effector and now fetzima. Also was on abilify and now on quetipine. The psychiatrist Is hoping that these 2 can help the antidepressant. I am still depressed.
Has anyone tried anything any drug or supplement that helped with the depression that worked with any of these drugs. These drugs I have taken sertraline, effexor, fetzima, abilify, quetipine.
I never had depression before bc.
Right now after 10 days off the tamoxifen, I still wake up feeling like I want to die, somehow I feel like it's still in my system.
I am going to try exetamase, I think. But I was waiting until the tamoxifen got out of my system.
My diet is basically no sugar, no or low dairy, fish, chicken veg fruit, sometimes I do eat some snacks once in a while.
PLEASE PLEASE ANYONE WHO HAD ANY RELIEF PLEASE ANSWER.
Yes I feel sorry for myself. I am hanging on.
THANK YOU
Kathy
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I think you need to keep working with your medical team, and; if you aren't exercising, START, exercise both helps with the aches & pains of an AI but also is a natural antidepressant. Also start eating some more interesting food and doing some fun, interesting, engaging things (whether you feel like it or not); see if that will help.
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LoveLau,
It only makes sense you would feel sorry for yourself. I feel bad for you too. Have you communicated the severity of these symptoms to your doctors? You could print out this post and show them because your utter desperation is apparent in this plea. Maybe the AIs are not worth it in your situation. Your plan to let the Tamoxifen get out of your system is a good one to see how you feel when estrogen inhibitors are not at work. Do take care of yourself.
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Love, another thing I just thought of; since it doesn't seem to be better no matter what you take or even when you're off, maybe you are suffering from Post Traumatic Stress Disorder because of the whole BC experience you've gone, and are going, through (and lack of hormones can intensify your feelings even more). PTSD is REAL! Maybe you mention that as a possibly to your doctors.
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PTSD, definitely something to mention to the providers. You'd think it would occur to at least one them, but maybe not. We really have to be assertive advocates. Info from this site helps in that mission. Great point, Ruthbru.
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Not that AI side effects aren't real, but I think that fact that we start taking them right as we finish up 'active treatment' can sometimes cause us to blame problems on them, when they are actually (at least in part) caused by both the physical and emotional turmoil we have just endured.
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1. It is hard to separate effects from drugs, AI or others, when there is the big elephant of BC history with at least some risk of recurrence still in your room, and it is staying, munching away on the peanuts your anxiety creates daily, given stress might make the BC recur more.
2. Lovelau, I am so sorry you have such a prolonged reaction to a BC with a decent prognosis, but am not convinced all has been done that could be, do not give up hope!
You also have estrogen deprivation, the intent of the AI and the other drugs, creating a new menopause if you never had one before, and a worse recurrent one if you did ( not sure how old you are). Thinking back on menopause, some women have symptoms longer than others so maybe they will improve.
3. You said you go to Kaiser, and in other posts that you tried a three week trip to NY on your own which did not help, so perhaps you have enough money to go to a psychiatrist cash pay outside your HMO, for a second or even third opinion? Sometimes overtreatment of depression causes more anxiety, and vice versa, so maybe your docs have not found the right cocktail. The “PTSD" term has become popular to talk about these days, and is a real entity in some ( VA has the most experience), but typically involves components of anxiety and/or depression and thus involves use of many mood meds you likely already tried ( SSRIs, trazodone) but different cognitive therapy. I would hope at your initial intake the doc asked you about specific diagnostic symptoms but these days I no longer count on docs doing basics happening without reminders
4. Make sure your medical doc has ruled out other treatable organic causes, like abnormal thyroid ( check both tsh and free t4), low b12, low vitamin D, (easy blood tests), elevated calcium with or without high PTH, low magnesium, that can have psychiatric manifestations and change personality. And if you gained a lot of weight from treatments, also look for sleep apnea.
5. Anything else going on in your life that is stressful ( as if BC is not enough!)? Many come here understandably blaming drugs, as Ruth said, or BC for mood issues, but I will add then it turns out after more time here that they have serious prior problems with DH, DD, DS, moms, money, job, law, prior self-esteem issues, childhood sexual abuse, yes also PTSD, etc., which were never dealt with and the BC just set them off, breaking their protective eggshell coping mechanisms.
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The fact you were off anti-estrogen ten days and felt no better does not definitively prove that the main cause of your anxiety, sounds like it is mixed with depression, was not the drugs. But the longer you go without them, the less likely it was the drugs. Then if you stay off you will have anxiety about not taking an anti-BC drug, so it can become a vicious cycle, even though you said you are ok with living ten days or ten years, be what it is.
7. Others' suggestion to force exercise is good, so is magnesium.
8. What about distraction: family, can you focus on their needs and worries instead of yours, or a job, as a distraction, or are you in too bad shape to go there?
We are here for you, no matter what
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I did 5 years of letrozole----managed to get out of it with no problems with bone density, did not gain any weight, and just some really irritating vaginal dryness.. I was a regular exerciser before bc--still am.... just move all the time-- like most post meno struggle with a few extra pounds, try to eat healthy (no real carbs, sugar,soda) focus on lean proteins and vegetables.
I am almost 10 years out... feel great--- I found letrozole made me a little fuzzy.... but overall it was not horrible.
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Lovelau..IMO 10 days is not long enough to determine if the anti hormone is contributing to your depression/anxiety. It takes longer than that for your hormone levels to go back to where they were. Good luck and keeps posted.
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I have been treated for clinical depression since 1995. I currently take Prozac and Wellbutrin daily. My first concern when I received my breast cancer diagnosis was, will my depression meds be effected by my BC treatments? I immediately went to see my psychiatrist to inform him of my diagnosis and for him to be aware of Anastrozole and how it might affect my depression. I can’t make a determination yet because I had to go off of Anastrazole after the first ten days of my BP spiking. I am still off of it because I need to stabilize my BP with the help of meds. I am not even sure if the BP issue was caused by the Anastrazole. I feel like I need to address this issue first before I add the AI’s back into the mix. I did not have BP issues prior to BC.
Lovelau, I encourage you to address the depression before adding the AI’s. It is not uncommon to suffer PTSD from the diagnosis and treatment of BC. It is an assault on her bodies and there is a shock factor involved. Work with your psychiatrist on a plan. You seem to have tried a number of antidepressants with no improvement. Were you on any one medication long enough for it to get into your system? No one needs to live with untreated depression. There are many specific targeted medications to resolve this depressive disorder. You are not going crazy. Your depression is as real and valid as your BC diagnosis.
The whole BC journey affects our brain chemicals. We first go into warrior mode to try and decipher the best treatment plan to eradicate the cancer from our bodies. The emotional fall out doesn’t really come until we are getting prepared to go on AI’s. Then it hits like a tidal wave. The anxiety of recurrence can add to depression too. I believe that life after BC is not the same. We have to strive to get back to living again. It’s not easy. I also have discovered that isolation is the enemy. When alone (even if I prefer to be alone) is not a good place for me. It allows me to dwell on the cancer and not on living.
I am sending prayers and good thoughts to you as you tackle this issue. Stay here and keep us posted
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My bit of advice is to try not to worry needlessly. Excessive worry and anxiety can definitely hurt one's health.
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pupmom...unfortunately most people cannot control clinical depression/anxiety without help. It can be medication, therapy and some other lifestyle changes or a combination of all. Just want to point out that its not easy! Good luck too all.
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Dtad, I totally agree! That's why when I've been in that black hole of depression, like after my cancer diagnosis, I sought out help. I've also been a lifelong worrier, but have learned how pointless it is.
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I am so upset.......I've gained 35-40 pounds since finishing treatments and have been on Arimidex for 3 1/2 years. I feel worse than when I went through chemo treatments. I can't take much more of this. Has anyone else gone through this?
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Tobyholic,do your doctors know how miserable you feel? They could try a different agent. Have you tried very strict diet and exercize, had thyroid checked?
I am finding it easier to lose weight since on Arimidex using same regimen that failed me before, 30 lb. so far.
Package insert says about 5% of women gain weight. Less activity and more stress eating can contribute
A third get bad hot flashes, including me. Memory is a bit worse for short term. Vagina has gotten too tight for anything of use to fit in it.
But I will keep taking a bit longer, as I had refused XRT.
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Tobyholic,
I am sorry you feel worse than during chemo. Do be very frank with your docs about how you feel. Maybe a nutritionist could be of assistance? Could you enlist the help of family members to keep chopped up vegetables on hand for snacks at all times? Or, if you like them--and not everyone does--roasted Brussels sprouts on hand to pop in your mouth as a snack? Beyond chopping or roasting veggies, can you reach out to friends and family for help with food or other things, since you are in obvious need of some assistance due to unfortunate circumstances beyond your control. Reaching out can be harder than just being miserable on your own. Addressing solely the weight loss issue, I know of several people who have had good success with Jenny Craig and Nutrisystem. They used these to get started and see initial results and then modeled their own menus after these programs.
If you are not doing it now, maybe there is an exercise or activity you'd enjoy on a regular basis--tai chi, zumba class, gym with personal trainer for more motivation (and costing lots more $), daily walk with neighbor or by yourself--some people meet and walk in a mall so it is always temperate, treadmill or similar in your home while watching your fav TV shows or media on a device, swimming at a local school pool or fitness center?
I've wondered if anyone has tried hypnosis to help combat these severe symptoms? Not sure how that would work with insurance. Take advantage of any mental health benefits you can. Not saying this is in your head but instead that you need to harness all your mental powers to do combat with these profound physical issues. Short of hypnosis, maybe yoga or deep breathing exercises? If you are member of any religious organization, see if they can offer some help. Sometimes they even have weight loss challenges among the members. Checking your thyroid is a great suggestion.
Oncology massage for muscle pain and tension. Acupuncture--I've used it with moderate success for non-cancer issues and it has been shown to help with AI pain. Also with anxiety. My own acupuncturist first went as a patient for anxiety and now he practices. Again, not sure that insurance helps here.
Can you get into a whirlpool, Jacuzzi, or hot tub somewhere, like a YMCA or YWCA? Moving water, very soothing. This costs, but maybe an occasional weekend away at a spa-like spot or just out in nature, or whatever your interest may be? While this is forum is a kind of a support group, maybe there is a live support group you can attend?
When someone is really suffering, these suggestions can seem inadequate, trite, clueless or even insulting and some may be unreasonable due to cost. I wish we had better, readily accessible options.
Chronicpain,
Saw a hopeful phrase in your post: "keep taking it a bit longer." After that bit is up, you may get some relief.
What a great point, Bella2013
"Your depression is as real and valid as your BC diagnosis."
One last thought on the 35-40 lb weight gain, Tobyholic, are you within a normal range of weight after that gain? Or maybe you only need to drop 10 lbs to be within the normal range? Losing every pound you gained may be an unrealistic and stressful goal. Depending on your age, you might have gained some of that weight anyway, as most women weigh more at 40 or 50 than they did at 21, with or without pregnancies.
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I had my thyroid checked and it's ok. I walk and exercise as much as I can. I lift weights at least 5 days per week. I walk every day, either outside or on the treadmill. The arimidex has caused my joints to hurt a lot, so I do about 1/2 hour of exercise and have to sit and rest a little. The same with walking, I can only walk 2 1/2 miles before my ankles and feet start to hurt. Before cancer, I did exercises for an hour or more AND walked about 5-6 miles per day. Those days are gone.
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Tobyholic, you certainly are active! It's not as though you need to increase the levels in that part of your life.
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Hi Leas777
I am GraceFrancis from NJ age 61. I had lumpectomy, stage 1 nothing in lymph nodes. Radiation was 30 treatments from Jan 2-Feb9th( my 61st birthday.) In addition I was put on Arimidex after Retina surgery March 8, 2018. At day 14 my legs went numb, swollen ankles and throbbing feet. Stopped meds and went to visit children in FLA. All went away after 2-3 weeks. Went back to oncologist who gave me Letrozole. It hit me horribly on day 20, same symptonms. Stopped meds Monday April 30, 2018. He said "See a cardiologist". I did and that dr. felt its the meds. I will get and Echo and Stress test in a week or so, which I believe will be a waste, but more money. I will see the oncologist this Wed May 9th to hear the next round. I am a High School teacher, very active, exercise and eating habits quite healthy. I am disgusted, so I am getting a second opinion shortly. I can't live like a cripple whom my teachers couldn't believe this week how swollen I am. My husband doesn't get that these meds are horrible with so many side effects. Please keep in touch
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GraceFrancis, so sorry for your series of awful experiences. I hope the retina surgery was a success. If I put 2 + 2 together, after 20 days of Letrozole you had heart issues. Interestingly I was just in the ER with heart pain (can't say chest pain as it was squarely centered in my heart) 27 days after starting Letrozole, but the symptoms actually started around Day 20, just like you. I've never had a single heart issue before in my life, also about 60 years.
Maybe you could ask your husband to read for just 10 minutes on these threads to get a feel for what others are going through with side effects.
https://community.breastcancer.org/forum/78/topics...
https://community.breastcancer.org/forum/78/topics...
One other thought on "monitoring and reducing the risks of aromatase inhibitors" which is the title of this post is to include (at even more cost) an endocrinologist.
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Tell your hubby to listen to all of us that are going through this crap! I wouldn't be going through this if my second opinion Doctor hadn't told me I was paranoid about the lump I had. I was stupid enough to believe her and left it go for another year when things started to change. Then I had to find a third doctor. Third time was a charm, but I might have avoided chemo and all these problems if the lump had been removed long ago. Sorry for the ranting...........no one understands except the women on this forum
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