Come join others currently navigating treatment in our weekly Zoom Meetup! Register here: Tuesdays, 1pm ET.

Monitoring and Reducing Risks of Aromatase Inhibitors

2

Comments

  • sora
    sora Member Posts: 1
    edited May 2018

    Dear All. the suffering is so rampant and getting others to truly understand is a challenge. They often don't get it plus it upsets them that we are altered by treatments and side effects. I am on Anestrazole and seem to be tolerating it well. I do take Vit D 1200 IU daily, am on Lexapro(an antidepressant) and have been simvastatin for long time before breast cancer. Exercise and good healthy diet are key and sleep. I find that my sleep cycle is severely interrupted. I was getting up every hour when taking Xeloda. Somewhat better now that I am off it but between needing to nap during the day and disrupted nights mood and stamina are not great.

    Take care.

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    Tobyholic, fortunately you were smart enough to find the third doctor. What a terrible thing to tell a patient that they are paranoid for feeling a lump in their breast.

  • josieo
    josieo Member Posts: 140
    edited May 2018

    Me too! Love prunes anyway, so was glad to learn this-thanks Ruttbru!


  • josieo
    josieo Member Posts: 140
    edited May 2018

    Agree, tobyholic. Whenever my gut tells me a medical professional is not taking me seriously, I move on and keep looking. It’s your life and your body. Stay strong and know that you did the right thing for yourself

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    "Me too! Love prunes anyway, so was glad to learn this-thanks Ruttbru!"

    Time for a prunes subforum, maybe?


  • wallan
    wallan Member Posts: 192
    edited May 2018

    So I switched my generic Arimidex for the brand name Arimidex. I found a Canadian program on line that will pay the difference between brand name and generic. Woo hoo!

    I am hoping that the brand name will help alleviate some SE like fatigue, migraines, and weakness. Oh yeah, and rashes, and dry membranes and skin. Even if its just a placebo effect , I will take it.

    I will let everyone know how it goes. I have only take one pill of the brand name.

    wallan


  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    Exercise, exercise, exercise, and get the best moisturizers and skin creams (not lotions) that you can. Use them all the time. When bathing, Dove soap, it's the most mild on your skin.

    If you have a fitbit, you can use their dashboard as a diet aide. You can tell it how much weight you want to lose and have options of calorie reductions depending on how fast you want to lose it (slow, medium, medium hard, fast). It automatically keeps track of your exercise and movement and if you log in your food, it will tell you how many more calories you have left (it's the differential between the calories in and out that matters). So if I have gone over my calorie goal, I can go for another walk (or whatever) to get back into my range. You can also record how much water you drink, and it tracks sleep (which is very interesting as I have always felt I was a restless sleeper.....and I am, so it's just not in my mind!). I need gimmicks, so this really works for me.

    I actually think there used to be a 'Prune Thread'. Loopy

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    Good luck with the new medication, Wallan.

    I'll have to search for the prune thread!

    https://community.breastcancer.org/forum/78/topics...

    That did not take much work!


  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    I don't know how to insert links, but there is another one too. I'll bump it. It's under the Forum: Bone Health and Bone Loss → Topic: Prunes for bone density-anyone have success?

  • Lula73
    Lula73 Member Posts: 705
    edited May 2018

    on the dry skin SE from AIs, the lymphedema specialist recommended Cetaphil. I’ve been using it and have gotten great results. The specialist said that even though it’s thinner than a cream, it absorbs quickly and thoroughly where a lot of creams/thicker formulations just sit on top of the skin. The dryness is gone, my skin is more supple/plump where before it was visibly thinning, it’s not sticky or slimy once applied and the Cetaphil is completely unscented (you know how some unscented things still have some kind is smell? This doesn’t.) So it’s also good for all of us that are scent sensitive.

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    Ruthbru, thanks for that prune reference. From prunes to Gladiators! I bet no one has ever uttered or written that phrase before. Another aside, about 3 times in the last 8 years my husband and I have headed out to ND right about this time of year to Theodore Roosevelt National Park!

    Now back to the Cetaphil and other side effect reducing measures.

  • wallan
    wallan Member Posts: 192
    edited May 2018

    Hey there:

    Thanks! Exercise is important for sure. I just need to get up and ignore the fatigue and weakness feelings. I did start yoga the other day.

    Heres to better days....

    wallan

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    Lea, Theodore Roosevelt National Park is one of my very favorite places!!

    Anyone who wants some exercise buddies, come over to the Lets Post Our Daily Exercise thread on the Fitness Forum (it's always in the active topics). A great group of ladies at all exercise levels and all stages of treatment and beyond.

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    Days are better with yoga, Wallan! Best wishes as you stretch and breathe.

    Three cheers for Teddy Roosevelt NP!

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    Do you just hike around or ???? Camp? Stay in Medora (at the Rough Rider Motel?)? Which is your favorite, the North or South unit?

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    We have stayed at Rough Rider, Badlands, and AmericInn, all in Medora. We do a little hiking and I do wildlife/nature photography. Great place for it! We'll try Sept or Oct next time. We have spent more time in South, but like both sections. Maybe it is best to keep this place secret. Shhhh

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    OK, mums the word........what state are you from Lea?

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    I am in Wisconsin, so it takes us 2 days to get to the park, though once we left very early and drove home in one day. A very long day!

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    My mom was from Chetek (near Eau Claire) so I have spent lots of time in western Wisconsin. That's a LONG drive to Medora!!!

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    Doubt we'll ever do the Southeast WI to Medora drive again in one day. It IS a long drive. You visited a scenic part of WI, Ruthbru.

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    Yes, it's a beautiful area. Althogh last year they got nailed by that awful tornado. It went right through some of my relatives land, uprooting trees, pulling off shingles. Very scary. It still looked bad when we visited in the fall.

  • readytorock
    readytorock Member Posts: 51
    edited May 2018

    ruthbru -

    I was married in Chetek, WI! Was born and raised in Glenwood City - about an hour southwest of Chetek. My parents have a cabin on Potato Lake in Chetek (still) and our wedding was on a resort on the lake.

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    My parents were married in Chetek too! At the Lutheran Church in town. My uncle and aunt and a bunch of cousins and their families still live there, and the raspberry bushes on the side of my house came from my great-grandfather's raspberry patch in Chetek. Heart

  • lea7777
    lea7777 Member Posts: 50
    edited May 2018

    What memorable Wisconsin roots!

  • ruthbru
    ruthbru Member Posts: 47,786
    edited May 2018

    ThumbsUp

  • lovelau
    lovelau Member Posts: 42
    edited September 2019

    psy started me on patch maoli called easam. Been on it for 10 daty. I feel better this morning. I had hip replaced 10 days ago. So mostly walking in house for next week. Dr said next week i can swim. Got a new theraist who said i should take transendial meditaion. Which hopefully willnhelp. Worried about cutting down the exercise. Fear of walking outside. My stats show stagec1b 100% survival rate. Still trying to get my mind undercontrol.

    Hope the. transcential meditation works. Tried other types of meditation i couldnt get into.

  • Yogatyme
    Yogatyme Member Posts: 1,793
    edited September 2019

    I am a retired clinical social worker and spent 37 yrs treating people with mood and anxiety disorders. If you are not getting your antidepressants from a psychiatrist you may be under treated. My experience was that other providers routinely under prescribe and once levels are clinically appropriate patients begin to get relief. It may also help to see someone who specializes in treatment of PTSD. PTSD is actually an anxiety disorder but has significant depressive features. It is complicated and having someone help you sort out all that has and is happening to you can be a Godsend. I recently had bilateral mastectomy and am highly aware of my sx of PTSD and am considering seeing someone for psychotherapy. Whatever you do, DO NOT abruptly stop your antidepressants. That will throw you into an even worse emotional state. If you decide to discontinue the antidepressants, talk to your doctor about how to wean yourself off slowly. I am so sorry you are suffering so much. Dealing with the BC is hard enough without struggling w depression as well. Good luck with finding the right medication regime.

  • margun
    margun Member Posts: 385
    edited September 2020

    anyone experienced hair loss with letrozole. After chemo my hair grew back but very thin on the top. Recent' I noticed important hair loss and it is obviously due to letrozole. Any advice how minimize this? Is the joint and muscle pain progresses over time or stays the same

  • lea7777
    lea7777 Member Posts: 50
    edited September 2020

    Margun, sorry I don't have an answer to your question. You may wish to pose it in the forum labeled "Hormonal Therapy-Before, During, and After."

  • ruthbru
    ruthbru Member Posts: 47,786
    edited September 2020

    Have you tried Nioxin shampoo? That's what my hairdresser recommended. Maybe there is something better out there by now, check with your beautican. Also, I found that my joint pain started to get better after about 6 months (I think it took that long for my body to adjust). I also found that if I exercised and kept moving, moving, moving in general, I wasn't as achy as if I sat around.