Tamoxifen and anastrozole

Posted by freebird67 @freebird67, Mar 26 10:00am

Hi all,
I have a question about these AI. I'm pretty much at the beginning of this journey, just had a lumpectomy and now waiting to start radiation. My oncologist said that I will go on a AI but did not specify which one yet. I know most of you ladies are on or have been on them so I would like to know , did they change you mentally and how did you cope with them ? I already know that they will physically 😒 I believe he wants to do this because my mother and 2 sisters had breast cancer and past away.
I lead a pretty active life at the age of 67, gardening, canning, chickens and several hobbies. I know this is long winded but this really concerns me and thinking of refusing them. Your input would be greatly appreciated .

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@lifetraveler

Hi! @nana49

Thank you so much for the suggestion! Could you please clarify is it fresh tart cherry juice that you take with anastrazole or tart cherry juice in can, please? I don't think I ever see any tart cherry juice in super markets...

Thanks! Best wishes to you all!

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Hi again, two of the brand names that I buy; knudson and ocean spray tart cherry juice.
I hope it helps. Take care

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@saraabrooks

It's strange how I was on Anastrozole for 90 days. Oncology nurse and my surgeon were surprised that I had no side effects and yet the shrinkage of tumor was great. Then I renewed my prescription. In about 2 weeks my side effects (fatigue, bone ache, flu like symptoms - it was NOT the flu), depression, carpal tunnel syndrome, (my crochet wrist got 10x worse), loss of interest of EVERYTHING. So, why was the first 90 days fine? I switched to renewed prescription and I fell apart. I looked up manufacturers of Anastrozole and there are quite a few!! I know, you'll be told . . . "It's the same." Yeah, like levothyroxine and Synthroid are the same!! NOT. And that fact has now surfaced after all these years, that there is something to that. In talking about Synthroid vs. Leve, they discussed the carrier of the drug - the extras in the formula considered benign. Levo - after 2 wks did nothing. My Dr. at the time switched me to Synthroid immediately. Within 4 days I felt reborn. SOOO, I wish I knew the manufacturer of the first batch of Anastrozole. I think it behooves me to dig into that with the pharmacy. Some formulas work well, and some don't!

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Your pharmacy will be able to tell you the manufacturer. It may also be in small print on the bottle. I was prescribed xanax for anxiety and sleep when I was first diagnosed. The first bottle I had no side effects. The second script from a different pharmacy smelled like strong chemicals and caused facial hives. It was the same manufacturer. Of course the pharmacy said the pills were the same but I knew something had changed. My Dr called in a script to a different pharmacy and the manufacturer was different. No more smell nor hives. I did read in one of my groups that different manufacturers use different fillers and the different fillers can cause side effects. You can also call the manufacturer to see if they changed the formula. I'll see if I can find the post. I hope this helps.

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AI's from different manufacturers were a big issue for me in terms of tolerability. I took brand name Femara (letrozole) though at the end I did find a generic I could tolerate.

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@nanna1948

I read on internet after completing full treatment of five years on anastrazole it continues working for ten more years go on internet you need to follow full five year treatment for this success

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Hi @nanna1948, I was intrigued by your statement and went on the search for a source confirming the claim about anastrozole's (Arimidex) ability to continue to protect against recurrence after completing 5 years of treatment.

I think this may be where you read it.
- What happens when you stop taking Arimidex? https://www.drugs.com/medical-answers/you-stop-taking-arimidex-3539770/

Excerpt:
"The protective effects of Arimidex continue even after you stop taking it, so long as you have been taking it for around five years.
The latest results from the IBIS-II prevention trial reports Arimidex continues to significantly reduce the incidence of breast cancer for at least 5.9 years (the current duration of the trial). The trial is ongoing."

Study cited:
- Effect of baseline oestradiol serum concentration on the efficacy of anastrozole for preventing breast cancer in postmenopausal women at high risk: a case-control study of the IBIS-II prevention trial https://www.thelancet.com/journals/lanonc/article/PIIS1470-2045(23)00578-8/fulltext

It's good to remember that just because we read something on the internet, doesn't make it true. Where possible I ask all members to provide links to information or medical claims. See the guidelines in our Community Guidelines about sharing experiences vs information https://connect.mayoclinic.org/blog/about-connect/tab/community-guidelines/

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@mir123

I really agree, windyshores. I enjoy your sensible advice. You can't "try" surgery and see how you react--it will be a done deal by then. But medication is certainly something a person can try, and then stop. I've been on letrozole for almost 18 months with no side effects. I've come to accept that my medical choices will never be perfect, but can be conscientious and what works for me. And then I remember that really all life decisions are like that--buying a house, quitting a job, having kids--we can never see the future. So since I can't control outcomes, I just try and focus on having a good intention and authenticity.

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Hi
I have dcis it was stage 0 when they did the pathology there was a slight break in one of the walls so it went to a stage 2 but a microscopic amount of invasive cancer no cancer in my lymph nodes just did 10 days of radiation double hits so now I will follow up with my oncologist regarding the AI I just would like to know if you have osteopenia or osteoporosis prior to your breast cancer treatment my initial conversation with my oncologist because I have a compression fracture in my spine and I have osteopenia which I have been treated with zoldronic acid for the last 2 years I have my third infusion this year in June. I know that the AIS can cause bone loss and tamoxifen was the medication he discussed me trying I am 65 I'm just so unsure about what medication to go on. Plus I'm hypersensitive to meds and have fibromyalgia.

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@einnoc

Having taken both an A.I. (Anastrozole, for 7 months) and Tamoxifen (for 5 months) before going off everything on Aug. 30, 2023, I can report that Tamoxifen is easier to tolerate and does less bad stuff to you in regards to your mental brain fog, teariness, etc. It isn't "good" because I was so fatigued that I could not stay up for more than 3 hours The main side effects were a constant urge to pee, when I took a lower dose (10 mg., every other day, 40 per week). I had such a bad time on Anastrozole that I told him I would try Tamoxifen, but I was going to tip toe into those waters. I was "okay" on 40 mg. a week (10 every other day). Everything from the waist down felt dry and itchy, but I could have stood it (although I didn't feel "normal"). The worst thing, at that point, was having to always be within 5 minutes of a bathroom. The feeling of an urgency to urinate was always there, even if it was bogus. However, on June 23rd my oncologist called me up and said I had to take 20 mg. daily (140 weekly) because the only clinical data they had that it worked was for that amount and my reliance on the 700 women in the Italian Women's Study was comparing apples to oranges, as their tumors had been "in situ" and mine had broken through, so I stepped up taking the 20 mg. pill daily. From that point on I had constant UTIs, the severe exhaustion I mentioned, which was debilitating, and the aforementioned constant urge to urinate. I did not have any "mental" side effects on Tamoxifen. Anastrozole for 7 months was a whole other thing. Teariness. Mood swings. Blurry vision. Insomnia, Excruciating back pain and pain in my frail left knee joint. Dry skin. Dry eyes. Vivid violent nightmares And then (9/15/2022) my fragile left knee joint gave up and quit working. I had to go to a joint pain clinic and have shots (32 ml of an anti-inflammatory; 6 ml of Durolane; Tramadol for pain). I was in a wheelchair from September 15 of 2022 until March of 2023 and quit taking Anastrozole, which was a tentative protection against a recurrence. However, apparently the trade-off was me not being able to walk myself to the bathroom or walk anywhere else and that trade was unacceptable to me. I did face decisions on what to do about my damaged knee. We were en route to Texas for the winter. The doctors in Illinois said they could give me an MRI to pin down exactly what had happened to my left knee, but then what? What did I want to do about it? It felt just like a meniscus tear and I was hobbling with a cane or being wheeled to my first post-operative mammogram on October 3rd (NED). I am now off all adjuvant therapy and have the opinion of 2 Texas oncologists that a woman who had been placed in a clinical trial for bad arthritis and had a badly damaged left knee joint was a bad candidate for A.I. drugs, since they are known to inflame previously injured or arthritic joints. It was, honestly, the worst pain I have ever endured in my then-76 years of life. I was denied an oncotype initially in Illinois ("You don't need one.") My Texas doctor got me my onco score and it is 29, which should have meant chemo at the outset. However, it was now 17 months past surgery. I had been off the Anastrozole for 9 months and was feeling normal again. I was talked into trying Tamoxifen and did so for 5 months. It is worth noting that, on March 7, my blood work before I got heavily into the Tamoxifen was normal. On Aug. 30, when I called in in distress and had further blood work, 10 things were not normal. If I had to select an A.I. drug to take and had any choice, I would ask for Exemestane, which seems to be tolerated better than the other 2. However, someone who was having regular and frequent MRIs of her left knee while in the MOST study from 1997 to 2020 should not have been given any of the 3 main A,I.'s. If you are a person with a family history of arthritis or any damaged joints, think long and hard before signing up for the pain you will experience taking an A.I. Tamoxifen is a better choice for an old person like me with a well-documented history of joint pain and issues.

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Hi
Thank you for all the information on that medication I am 65 with osteopenia and a fracture in my spine t7 just finished my treatment for dcis after having two surgeries her two negative er pr positive. 10 dbl radiation treatments. My oncologist wants me to try 5 mg of tamoxifen so I think I'm going to give that one a try I will find out when I see him this coming Thursday April 4th

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@nana49

Hi again, two of the brand names that I buy; knudson and ocean spray tart cherry juice.
I hope it helps. Take care

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Hi! @nana49 :

Thank you so much for your caring kindness! I'll definitely look for it more carefully and try taking it with Anastrozole:)

Best wishes to you all on journey ahead!

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@sue417

Hi
I have dcis it was stage 0 when they did the pathology there was a slight break in one of the walls so it went to a stage 2 but a microscopic amount of invasive cancer no cancer in my lymph nodes just did 10 days of radiation double hits so now I will follow up with my oncologist regarding the AI I just would like to know if you have osteopenia or osteoporosis prior to your breast cancer treatment my initial conversation with my oncologist because I have a compression fracture in my spine and I have osteopenia which I have been treated with zoldronic acid for the last 2 years I have my third infusion this year in June. I know that the AIS can cause bone loss and tamoxifen was the medication he discussed me trying I am 65 I'm just so unsure about what medication to go on. Plus I'm hypersensitive to meds and have fibromyalgia.

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Hi sue417--my bone density was just fine going in, and I intend to start having it checked. You might ask your oncologist to explain how much tamoxifen will reduce the risk or recurrence, and if it extends life expectancy. This really can vary case by case. I have fibromyalgia-like chronic pain. Keeping this under control is probably my highest priority. I've had no ill effect from letrozole, but ave never been on tamoxifen. Check in and tell us what you decide to do and how it is going. It's hard to juggle all this--but I tell myself so far so good!

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@sue14 I had had osteopororis for several years and had three spinal fractures when I went on letrozole for cancer. Most people do Reclast or Zometa (zoledronic acid) with aromatase inhibitors but my doctors were nervous about it for me because at the time it was thought to aggravate atrial fibrillation, which I have on occasion. That has since been debunked, according to my doctor. Anyway I had bone loss, had more fractures, and went on Tymlos after my cancer treatment. Tymlos returned my bone density to pre-cancer levels- actually a little better.

I am not sure what others' experiences are with aromatase inhibitors that are accompanied by zoledronic acid. I hope someone else chimes in! It does seem that many do tamoxifen if they have bone density issues, and I am not sure why that was not offered to me. It is good to discuss these options with your doctor!

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@mir123

Hi sue417--my bone density was just fine going in, and I intend to start having it checked. You might ask your oncologist to explain how much tamoxifen will reduce the risk or recurrence, and if it extends life expectancy. This really can vary case by case. I have fibromyalgia-like chronic pain. Keeping this under control is probably my highest priority. I've had no ill effect from letrozole, but ave never been on tamoxifen. Check in and tell us what you decide to do and how it is going. It's hard to juggle all this--but I tell myself so far so good!

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Hi
I also have fibromyalgia plus a heart condition and I had a Tia 5 yrs ago. My oncologist said 5mg tamoxifen that was prior to my surgeries so I will see if that changes thks

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