1. < Breast Cancer

Looking for research re: taking AI drugs vs not taking them

Posted by celestebradham @celestebradham, Jan 4 10:38am

I am currently taking Exemestane. I’m 61. Took a while but I’m doing well on it (doing yoga, pranayama and acupuncture). I now have osteopenia after taking it six months. I’m trying to find research on taking AIs vs not taking. What I’m finding there is not much difference between taking and not taking. But more likely to get arthritis and osteoporosis.
Can anyone post links. .

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catlover2020 | @catlover2020 | Apr 16 5:59pm
In reply to @srussell "I did my first long fast when I started Anastrozole. (The Zolodex shot did not cause..." + (show)
@srussell

I did my first long fast when I started Anastrozole. (The Zolodex shot did not cause me any significant side effects but I was MISERABLE the first two weeks when we added the AI). I fasted 72 hours. I never in a million years thought I'd be able to do it, but I did and the relief from symptoms was seriously remarkable! Since the long fast, I'm intermittent fasting 12-16 hours. The further I get away from the long fast, the more the brain fog and fatigue seem to be reappearing. I'm currently researching how often I can do a long fast. Prior to stage 1, grade 2, no nodes, 11 mm IDC with Lobular features I was a healthy, active 42 year old. I had a mastectomy and 4 rounds of chemo as my tumor showed as high risk for reoccurrence. I'm going to try my hardest to stick with the suggested standard of care from my Onc but I don't think I'm willing to give up my active lifestyle if we can't figure out the long term solution. I've listened to a couple podcasts with Dr Mindy. I'll check out the book you mentioned as well! Please post if you find anything else promising.

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You may want to watch Barbara O'Neil on YouTube.
Google and research.
I'm 66 active and couldn't imagine being miserable and decided no. No nodes involved, estrogen receptor. Mastectomy with hysterectomy 2 months later. Lots of plastic taken out of my home. Cotton only clothes. My husband is a messy person. I couldn't be hurting all day in a messy house. Research I'm happy with. Company coming to town, cleaning cause I love the reward. And I'll add organic food only, stored in glass not plastic. Had a cousin die yesterday, I told her palb2 mutation is heredity. My daughter also had DMX .
I eat no red meat, I use DIM, wild yam cream and drink soursop tea.

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1 reply
catlover2020 | @catlover2020 | Apr 16 6:04pm
In reply to @jardinera25 "I had that popping and eventually pain about 20 years ago, from my Osteoarthritis. The Thumb..." + (show)
@jardinera25

I had that popping and eventually pain about 20 years ago, from my Osteoarthritis. The Thumb Orthopedist said I didn't need surgery, it was a slipping joint, and just to wear a special thumb splint every night to bed, to hold it in the proper position. During the day if you need it. I'm still wearing it only at night & never needed surgery! Go on Amazon and enter in the search bar: "Comfort Cool Thumb CMC Restriction Splint." Not that expensive. Hope it works for you!

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I wear salonpas at night on my thumb with a cotton glove. Works great

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1 reply
srussell | @srussell | Apr 21 7:26pm
In reply to @catlover2020 "You may want to watch Barbara O'Neil on YouTube. Google and research. I'm 66 active and..." + (show)
@catlover2020

You may want to watch Barbara O'Neil on YouTube.
Google and research.
I'm 66 active and couldn't imagine being miserable and decided no. No nodes involved, estrogen receptor. Mastectomy with hysterectomy 2 months later. Lots of plastic taken out of my home. Cotton only clothes. My husband is a messy person. I couldn't be hurting all day in a messy house. Research I'm happy with. Company coming to town, cleaning cause I love the reward. And I'll add organic food only, stored in glass not plastic. Had a cousin die yesterday, I told her palb2 mutation is heredity. My daughter also had DMX .
I eat no red meat, I use DIM, wild yam cream and drink soursop tea.

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Thank you for the info!

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srussell | @srussell | Apr 21 7:31pm
In reply to @robbihm "Everyone’s story is different. I’m halfway through listening to “The Metabolic Approach to Cancer” by Dr...." + (show)
@robbihm

Everyone’s story is different. I’m halfway through listening to “The Metabolic Approach to Cancer” by Dr. Nasha Winter and really trying to get at the underlying causes of cancer. I’ve (mostly) removed bad oils, eat organic wherever possible, and have almost eliminated gluten. My goal is to blend traditional approaches (surgery and radiation for me) with natural prevention. I’m a work in progress. My oncologist is not supportive of me shunning the AIs, but I have a 5% chance of recurrence and the AIs would take that to 2.5%, but at a large cost to quality of life. I don’t take anything but a statin and I just don’t want on that slippery slope of taking the AIs and then five other things to combat the symptoms- not to mention hair loss, etc…. I don’t take the decision lightly, but given all my research, I feel empowered I’m on the right path for me and my particular circumstances. (My cancer - invasive, ducal carcinoma - er+/pg+ is slow growing so chemo was inapplicable since it targets rapidly growing cells). No one can get us to 0% chance of recurrence so we all do the best we can.

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I imagine I will also land on a decision that blends traditional medicine and natural prevention. Thank you for your input. I will give a listen to "The Metabolic Approach to Cancer".

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rococo325 | @rococo325 | 3 days ago
In reply to @catlover2020 "I wear salonpas at night on my thumb with a cotton glove. Works great" + (show)
@catlover2020

I wear salonpas at night on my thumb with a cotton glove. Works great

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I too had been affected by the Trigger Thumb after a year of taking Anastrozole the inflamation in the base tendons of the thumb (that is what is going on ) I have gone to a PT this wk for it and she gave me a plastic splint in the right diameter for my thumb, recommending to wear it part of the day . My thumb feels more mobile and I also had been massaging Castor oil on this thumb and also wear I have a BC tumor on my L5 vertabrae. Just an FYI--please look at the ingredients of Salonpas. It contains serveral? toxic chemicals so I would definitely reconsider that usage if you have B/C or could be prone to cancer.

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prc73 | @prc73 | 2 days ago

I just had mastectomy single breast and don't need radiation and all margins clear, nothing in lymph nodes. Since I am post menopause at 52, i don't understand why women have to take pills to reduce estrogen when estrogen is slowing or has already slowed down. They will be telling me this week what inhibitors to go on if my test comes back that I don't have Hers2. My thought process is why do we hurry to put women on pills to further reduce estrogen. Are we saying God made a mistake with women and estrogen is not beneficial and must be supprrdsed? All the side effects that come with taking these pills seem so outrageous.. why isn't there a focus on more natural alternatives for example I am obese and my estrogen is coming from aromatase from fat cells right? So why hasn't anyone said hey why not lose weight
.I am.figuring out myself . Also I saw where there is a clinical trial to see if grape extract could work and is of course natural.. or Why not use immunotherapy in some cases to give body its own chance of fighting .. what of soursop that is also being looked into as a cancer fighting agent.. I hope I am not sounding frustrated but I feel there could be so many ways that maybe could be looked into with less side effects for all the beautiful women out there just wanting quality of life. I am susceptible to blood clots so that rules some out . So if there are women who took for a while then couldn't and are still making it due to changes in diet lifestyle etc should those not be the things being looked at instead of constantly creating more and more meds. How is it we say ok here take this to help you not have recurrence of breast cancer but hey this does after a while increase your risk of getting ovarian and uterine cancers, depressions, blood clots list goes on . I don't have any of the gene mutations , I come from a family constantly allergic to stuff so I am very nervous about AI's.. I too would benefit from any advice.

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jig4891 | @jig4891 | 2 days ago

I am also considering not taking AIs. I tried anastrozole and after 10 days, I had to stop. I will try letrozole after my school year ends because I do not have any more sick days. But, I do know the answer to your question about blocking estrogen when the person is already post-menopausal. Apparently, our fat cells make estrogen (not estradiol, like the ovaries) but another form of estrogen. The more fat cells, the more estrogen is produced. So, that is why we're advised to take estrogen blockers. I hope that helps.

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jillianb | @jillianb | 1 day ago

I also wonder why they don't measure the estrogen in the blood of post menopausal women and see if it is high or low before prescribing. I am taking a break from Letrozole in order to exercise more. I have also been on Anastrozole and they are the same as far as side effects.

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sequoia | @sequoia | 5 hours ago
In reply to @jillianb "I also wonder why they don't measure the estrogen in the blood of post menopausal women..." + (show)
@jillianb

I also wonder why they don't measure the estrogen in the blood of post menopausal women and see if it is high or low before prescribing. I am taking a break from Letrozole in order to exercise more. I have also been on Anastrozole and they are the same as far as side effects.

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@jillianb when I was prescribed Anastrozole following my mastectomy, I had taken for a year with my oncologist just asking mundane questions how ya feeling etc. When I asked him ‘ How do you know this AI is even working- as there was not a baseline of my estrogen level before I started AI and no testing following a period of time taking.’ My oncologist’s answer was “We just take it for granted “. OMG! I was out of there to never go back to him. That is not the correct response! Doctors need to be more in tuned with their breast cancer patients that they are prescribing meds to - IMHO

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