Doing Well on Aromatase Inhibitors (AIs)
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Hi All,
I'm a seeking some help about the issues of depression (or bipolar depression) and aromatase inhibitors as I prep for a visit to a MO for a second opinion (urged by my other docs because the first MO suggested that I take Tamoxifen even though I'm postmenopausal). Sorry if others have addressed these issues.I've tried to comb through other posts on bco.org but I'm feeling overwhelmed!
Pre-Existing Issues:
- Mood: I have longstanding depression that has been very well-controlled for years on lamictal (typically used for epilepsy that stabilizes mood).I have not reacted well to anti-depressants especially to the newer ones now being tried to aid with joint pain associated with AI.
- Other Health:I have joint and orthopedic pain, especially arthritis in knee and spine (stenosis and disc problems) that affect my mobility and my ability to exercise. I am overweight with type II diabetes (currently controlled with diet alone).I'm concerned about the potential side effects of hormone suppression and the ways that hot flashes and lack of sleep could aggravate my depression and make it difficult for me to concentrate on work responsibilities.All in all, I'm worried that the combination of factors could lead to a very unhealthy spiral, making it difficult to exercise and to watch my weight, etc.
I reached out on bco.org in April.(Since then, I've been going through other things and now am about to start AI.)I'm figuring that others might have some thoughts. I've just tried to identify medical literature about depression and hormone suppression or AI and I'm feeling a bit overwhelmed.
- Have any folks with major depression, esp. BP 2 depression, come through without SE's. Was this serendipitous? Are there any steps you took to minimize mood SE's?
- Did any of you see a psychopharmacologist or other specialist for consult to help with choice of hormonal medication **or** for protective strategies (meds or otherwise)?
- In the hormonal therapy comparison chart, only one med —not an AI but Tamoxifen – is listed with mood or depression SE's. Are those with depression more vulnerable to mood SE's or so some experience mood SE's but not enough folks that it's listed in the comparison chart?
- Any complementary techniques help?(Accupuncture, tai chi,
- Any other advice?I think I saw some folks using benadryl to help with joint pain.Gee, that could help in long run.
I'd appreciate any ideas or insights! I'm going to check for other relevant threads but please do let me know if you think I should be posting this on a different forumThanks so much.
Blooming
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Dear Blooming - I can't help with the depression issues but just want to say that everyone reacts differently to these meds. I have been on Arimidex for two months now with really o side effects. No hot flashes. Joint pain no worse than normal ( I have arthritis in knees and hips). I am overweight. I did a variation of the Atkins diet with great success (lost 60 lbs) prior to diagnosis and decided to give myself permission to go on maintenance during my surgery recovery and chemo treatments. Now trying to get back on the diet and lose another 25 lbs. The book I used is available from amazon (out of print) and is called Neris and India's Idiot-Proof Diet. I do vigorous water aerobics four times a week. Maybe give the drug a try and see how you do.
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Dear Blooming,
I will echo JuliaJazz. Everyone is different and nothing is permanent with these medications. You can try and just stay close to your medical team and switch if there is an issue. I have had some depression in my life and when they told me Tamoxifen had that SE I immediately asked for a antidepressant. I was already really sad at being diagnosed with cancer. Cancer is damn depressing.
I went from Tamoxifen to Letrozole and both got better after I had been on them a month or so. I would change the time of day I took them depending on dizziness or nauseousness but I just kept taking them. We switched to Femara because my MO thought it would be better for me after they used Lupron to put me into menopause.
I had joint pain from some slight RA issues as well and when the joint pain got too bad they changed my celexa to cymbalta which i am currently still on. It helps a lot with pain. But causes insomnia. So to stay off another pill I manage my sleep hygiene as much as possible and go to bed on time as much as possible with my nutty 3 kids.
So what else do I do to manage these SEs?
1) walk 10K steps each days. Sometimes zumba or running or elliptical but if I move my body it hurts less. It is very hard when the pain starts to remember to move but it helps me tremendously.
2) yoga stretches a little each day and a class on the weekends if I can manage it
3) no dairy or gluten. I eat mostly plant based but some small amounts of meat/eggs to keep my iron up. I have a green smoothie in the mornings with pea protein/kale/spinach/berries and water , large salad at lunch with chicken and nuts or seeds, both broth for snacks and then whatever I feel like for dinner. My goal is 8 cups of fruits and veggies per day
4) Magnesium of leg cramping and constipation - https://www.amazon.com/Natural-Vitality-Calm-Lemon...=sr_1_2_sspa?ie=UTF8&qid=1512415846&sr=8-2-spons&keywords=natural+calm&psc=1&smid=A1IKFJQXCN8Q6U
5) support groups to remember I am not alone and help others if possible
6) gratitude lists & morning meditation to keep my attitude positive and not feel sorry for myself
7) sleep as often as possible and ask for help especially for my kids
Take care!
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Dsteaparty- thanks for the link! I have also heard that Claritin can help prevent joint pain from AIs.
I had my 6th and hopefully last surgery in October. My arms are so weak and flabby from not being allowed to lift heavy objects - I really need to get back to lifting weights!!
I hope everyone is doing well and enjoying the holiday season.0 -
Can't believe I started this thread in March. Many thanks to all of you for your comments, words of support, and sharing of experiences and expertise.
Sending good wishes for a peace-filled holiday. Blessings all.
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Butterfly - thank you for starting this thread! I think it's important to let newbies know that theses meds do not cause problems in every patient. On the Stage 2 thread, we all check in at the end of the month, just to be sure the thread gets bumped once a month and to let everyone know how we are doing. Can we try the same here?
Busy getting ready for the holidays. My son and his family arrive from the west coast tomorrow. I've got all the presents wrapped but still need to clean. Yikes!
Have a great holiday and Merry Christmas to everyone!0 -
That’s a good suggestion, grandma3x. Re: Claritin - I had read it helps prevent joint pain so I started taking it on the same day I started anastrozole. No joint pain thus far but I have developed carpal tunnel syndrome (self diagnosed) in my left wrist (opposite to BC breast). I’ve been wearing a night splint for a couple of weeks and it’s helping. I don’t see my MO until Jan. 2 (visit was postponed due to his vacation) and I’ll ask him if other patients have complained about carpal tunnel. And I should probably see my PCP about it; a friend told me her PCP prescribed oral cortisone, which helped her. Right now I’m fine with the splint.
My daughter frets about cleaning every time I visit her (which I try to do every other month so I can see my grandson, now 20 months old). I keep telling her I”m not there to see the house! So grandma3x, unless your son and family will be doing the white glove test, I say don’t worry about it! A quick once-through and be done!
Wishing all my BCO sisters a happy holiday season. I know that I have a lot to be grateful for this year.
MJ
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Tappermom383 - I was on Letrozole for a week when i developed carpal tunnel (self diagnosed) on my BC side. I stopped it on the advice of my PCP. My MO put me on Aromasin which has been OK, just some aches and joint pain but nothing much. I went for a nerve conduction test last month and got the official diagnosis of moderate carpal tunnel. A brace was prescribed which helps when I'm sleeping.
A friend suggested physio so I went this week. The physiotherapist thinks that the tingling in my hand is coming from a nerve higher up in my shoulder and upper arm. I have a bunch of exercises and stretches to do. When I left the physio clinic after being massaged and manipulated, my right hand felt normal for the first time in months! I'm optimistic the exercises will help.
Gail
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Thanks so much for starting this thread. I promised myself after googling too much during chemo treatment I would never do that again, but finding myself so scared to begin my next AI. I took Tamoxifen briefly, then we determined I was definitely post menopause due to chemo, so was switched to Femara. I tried it 2x's and wasn't able to tolerate- I'm moving on to Aromasin in the next week or so. I'm just wondering if you have any suggestions, tips, etc.. I have a history of depression, so that was one of my se's with Femara- I'm really hoping I can get myself into a positive mind set to make it through this next AI. Thanks in advance for your help and Happy Holidays!
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dlk, I don't understand how two doses of a medicine determines you cannot tolerate it. You normally should go through at least 2 weeks to decide if the med isn't for you.
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Thanks for the advice Tappermom! I mostly just need to clean the guest room and bathroom and make up beds with clean sheets. I should be able to get most done tonight. Then tomorrow morning just pick up the stuff that seems to accumulate on kitchen counters (grrr!) and run the vacuum - we have 2 dogs who shed A LOT.
Before BC, I had tendenitis in my fingers and wore wrist braces at night. I would pull them down over my fingers to keep them straight. It really helped. I went to Antarctica to do some field work around the same time and the tendenitis cleared right up. I'm pretty sure it was from being on the computer so much at home (no internet in the field!). It flairs up every once in a while - a good indication that I need to take a break from the computer work - but has not been any worse since starting on AIs.
I wish you all a wonderful holiday and a healthy and happy New Year!
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tendinitis is very common SE with AIs
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I was prescribed letrozole (Femara) on Tuesday.
I am very nervous about the SE's, but I've read that exercise can mitigate them. So, I am going to wait until Sunday or Monday to start taking it because I had a hysterectomy six weeks ago, and I can't exercise until I get the all-clear from my surgeon tomorrow (which I fully expect to get; I'm doing really well). Prior to the hyst, I was a marathon runner and lifted weights and I can't wait to get back into the gym and onto the track (After my doctor appointment, I'm doing shoulders and arms; Saturday is a 10K run; Monday is a chest workout, etc.)
The problem with the internet is that it suffers from selective bias; in general, only the patients who have problems are posting. I remind myself that I had a very, very easy time with my lumpectomy, rads, and even my hyst. After I got home from the hospital post hyst, I didn't take any pain meds except for regular, OTC ibuprofen. I didn't need anything else. The surgeon was amazed. Anyway, I didn't spend a lot of time posting about my experiences because I wasn't having any problems.
As others on this thread have said, I'm going to keep that in mind, take it one day at a time, and hope for the best.
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2FUN - just to clarify, my tendinitis was before BC diagnosis, so I was not on AIs at the time. I have occasional flare-ups but it's much better than it was initially, so I don't think I can call it a side effect of the meds. More likely a side effect of my job
Best wishes,
Grandma3x
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nightcrawler, my opinion (and just an opinion) is don't be afraid to start the leyrozole. It takes a while for it to reach therapeutic levels. And walking is great exercise that you may be able to do after your hyst.
I had hystectomy from endometrial cancer 6 weeks after my.lumpectomy. I am very active, but not a runner. After all of my surgeries (I had MX and thyroid removal 8 and 20 weeks later) I focused on walking 60 to 90 min per day. I think that helped me ward off a lot of the SEs. I had more SES when I returned to work and didn't have an hour a day to walk
I found it helpful to have all my massive hot flashes from hyst .and femara at the same time, since your body will be in massive estrogen depletion. It did get better in a few months, bUT I figured it was more hysto related than AI related.
Let us know hoe you are doing!
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Thanks for the advice! I'll consider just starting the letrozole tonight. I'm thinking I'll take it at night since it may make me drowsy.
I've gotten no hot flashes from the hyst so far, possibly because my gyn put me on Effexor. When I see her tomorrow, I'm going to tell her about the AI and ask if she'll bump the Effexor if needed. She probably would, as I am on the lowest possible dose.
The biggest problem I'm having is from the carpal tunnel/cubital tunnel/other repetitive motion crap on my right (non-cancer) side. Because I haven't been able to do anything except walk, it's flared up really badly. My thumb and index finger keep tingling, and my neck and shoulder blade have been hurting like hell. Thank god I've had these symptoms for years, or I'd be thinking I had, like, spine mets. LOL I helped my husband clean the floors yesterday, and it relieved the pain; that's why I think moving around will help me.
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Pupmom- No- 2x's as in I tried Femara on two separate occasions in the last year - the first time for 5 months then took a break and this last time I only took for 4 weeks because I was having SE's instantly, but also stopped working out at the same time (Probably my biggest mistake)
With my next AI, I intend on being back to my healthy eating/workout regimen in hopes this will help and keep me in a more positive mindset from the start.
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nightcrawler, do you have access to a good PT/physiotherapist who can help you? If you lived here I would look at your spine/shoulder girdle. They may be able to help. Shoulder /neck issues can cause distal hand/elbow problems.
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Grama3X ... Since diagnosis I have implemented the 5 minute rule like never before. When I leave a room, I give it a 5 minute pick up / cleaning. Nothing has gotten out of hand. My husband also purchased an I-Robot. We have dogs too and that thing can clean! I doubt that I will be able to push a vacuum cleaner again. I feel tension from my implants when I have tried.
2fun ... I have walked since the first day of chemo. I believe it really makes a difference in the side effects. I am lessened some walking in the last two weeks. I have been moving so much getting ready for Christmas! Last year I was still in treatment and it was a minimal Christmas celebration. What a difference a year makes.
Thanks also for this positive approach to our long term treatments.
Merry Christmas.
Coach Vicky
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Thanks Coach Vicky! I love the idea of taking 5 minutes and will give it a try. When my kids were young and I gave them a chore, like unloading the dishwasher, I'd always remind them that doesn't take any more than 2 minutes to complete this task. This seemed to make it more palatable to them. Maybe the 5 minute rule will do the same for me
I'm eating breakfast this morning listening to NPR with David Sedaris reading from The Christmas Diaries. Great way to start my day!
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nightcrawler, do you have access to a good PT/physiotherapist who can help you? If you lived here I would look at your spine/shoulder girdle. They may be able to help. Shoulder /neck issues can cause distal hand/elbow problems.
Unfortunately, I don't.
Yep, I'm sure it's a shoulder & neck issue. My cervical spine is all messed up from years of computer use. Here's the kicker: I spent several years typing medical reports for a worker's comp doctor's office. Most of the patients had orthopedic injuries, so I'm fully aware of all of my issues: carpal tunnel, cubital tunnel, and likely all kinds of herniations and desiccations in the cervical spine, particularly on the right. I've typed about all of this stuff.
My symptoms come and go. Right now, they're here. This has been going on for 2-3 weeks.
After my GYN released me from my post-surgical limitations yesterday, I did a shoulder & arm workout. Then, I ran a 10K this morning. I'm still having issues, but I feel better than I have since this latest flare-up began.
I started the letrozole Thursday night. I take it with a bit of yogurt to ward off stomach upset. I've also switched out my daily Zyrtec for Claritin, and I've added a magnesium supplement to my repertoire: Tums for calcium, a multivitamin with Vitamin D, and fish oil caplets.
We'll see how this goes.
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I hope everyone had a great holiday.
Still plugging along. Now that I'm back on my exercise routine, my neck/shoulder/hand problems have improved considerably.
I started a rather ambitious strength program yesterday that involves doing 60 seconds of cardio in between weight sets (the Jim Stoppani "Shortcut to Shred"). I'm going to work these into my running schedule. Yesterday was chest, triceps, and abs, and I ran four miles this morning. I could feel the workout in my chest muscles while I was running, but it was the good post-exercise kind of pain, not the bad injury kind.
I'm still feeling severely undertrained when I run, which is to be expected. I'm going to see if I can pop out a 5K tomorrow a.m. and a Stoppani weight workout in the p.m.
Bone density scan Friday!
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Nightcrawler, come over to the Let's Post Our Daily Exercise thread on the fitness forum if you want some exercise buddies.
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I thought about that after posting this. LOL
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nightcrawler - that sounds like a great workout. I've got to work on my upper body strength after surgery last Oct. I feel like I've lost so much muscle mass. We are going skiing in March and I always have trouble with poling.
I hope everyone is having a great holiday! I'm off until Tues. Enjoying time with my kids and grandkids this week.
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Hi all. I'm now two weeks into letrozole.
Now that I can exercise again, the repetitive-motion crap on my right side has dramatically improved. The pain in my neck and shoulder are gone. I still have occasional tingling in my thumb and index finger from the cubital tunnel syndrome, but that's eased as well.
So far, so good. I have body aches from working out, but I haven't noticed anything I would consider unusual. Still no hot flashes, hair loss, or third eye sprouting out of my forehead.
I had my baseline bone density scan last Friday, and I will get the results on the 15th. I hope all is good there.
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night crawler / good luck on bone density results. I go on Monday. I totally agree with you about exercise. We need to keep moving which helps with joint pain. I’m finding yoga keeps my left (Dx) side less tight and achy. I’m trying to mix things up with light weights and tread mill.
Happy New Year to all. Blessings!
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Bumping this thread back up.
My bone density scan was fine. I go back for blood tests in three months.
I'm a little over a month into the letrozole, and I'm still not having any bad effects. Every now and then, I'll feel warm for a few seconds, and then it stops. I'm not sure if these are mini hot flashes or just due to the fact that I live in Florida. LOL
Occasionally, I'll get some aching in my left foot where I suffered a march fracture 10+ years ago. Again, I don't know if this is from the letrozole or the crazy temperature fluctuations we've been having in Florida. In any event, it's minimal. I'm still running and lifting weights.
The numbness and tingling in my right thumb and index finger are almost gone. The neck and shoulder pain resolved within about a week of me being able to work out again.
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Overall I am doing well on Arimidex.
My hair is really thinning, however. I started Arimidex on 4 April 2017.
Any suggestions?
Coach Vicky
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