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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mpirruccel | @mpirruccel | Mar 28 10:24am

In reply to @einnoc "Having taken both an A.I. (Anastrozole, for 7 months) and Tamoxifen (for 5 months) before going..." + (show)

@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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You might consider getting a referral to a physical therapist for your knee. One that works with sports injuries and does cupping.

freebird67 | @freebird67 | Mar 28 12:39pm

In reply to @robbihm "Freebies, I’m totally with you and it’s hard to get the system to discuss trade-offs and..." + (show)

Robbihm , I agree ! But I'm struggling with this because I have had very close family die from bc. Theirs returned, but mine I caught very early with no lymphnode's. I'm 67 and don't want to be miserable for the next 5 years. I will be 72 by then what would it matter by then ? I will not let these drs strong arm me if I feel somethings not right. It's my choice what I decide to do. At this point I'm checking out each drug, What are known side effects and looking at what illnesses I already have and what new effects I could end up with. I will try, but letting them know I'm prepared !Hugs and Blessing to you !

robbihm | @robbihm | Mar 28 2:19pm

In reply to @freebird67 "Robbihm , I agree ! But I'm struggling with this because I have had very close..." + (show)

I totally support your journey. We all have to weigh everything very individually. Quality of life matters - the life in the years not just the number of years. You will make the best choice for you. Hug

nana49 | @nana49 | Mar 29 8:14am

In reply to @traci999 "I had a partial mastectomy in September 2023. Surgery went well. finished 4 weeks of radiation..." + (show)

I'm sorry to hear you are having such difficulty with anastrazole. My oncologist suggested to take it with tart cherry juice when I started taking anastrazole. It seems to help. Try it, it may help you.

traci999 | @traci999 | Mar 29 8:38am

In reply to @nana49 "I'm sorry to hear you are having such difficulty with anastrazole. My oncologist suggested to take..." + (show)

Thank you so much for the suggestion. My oncologist recommended a two week break just to make sure it's the medication causing my symptoms. I'm sure it is but I will definitely start taking the cherry juice when I resume the medication. I'm willing to try anything.

Thanks again.

lifetraveler | @lifetraveler | Mar 29 8:54am

In reply to @nana49 "I'm sorry to hear you are having such difficulty with anastrazole. My oncologist suggested to take..." + (show)

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!

saraabrooks | @saraabrooks | Mar 29 9:12am

In reply to @traci999 "I had a partial mastectomy in September 2023. Surgery went well. finished 4 weeks of radiation..." + (show)

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!

Rubyslippers | @triciaot | Mar 29 9:19am

@freebird67 I was 69 at diagnosis, lumpectomy, radiation for DCIS, 1 sister with DCIS, no BRCA. I had somewhat less risk for uterine cancer and thrombosis. I chose to take tamoxifen. @1ek and @windyshores have given good info.
If I had invasive cancer and other risk factors there would be no question that I’d want to try hormone therapy. My thought - if my body was growing one cancer, whether it was triggered by environment or had been dormant until my immune system weakened with age, there may be other BC cells “waiting in the wings” to grow. I believe that is one of the reasons for the recommended 5 years of therapy, because most cancers would grow to a detectable size within 4-5 years.

AIs, if not tolerated can be stopped, side effects then stop, and a change can be made. The same with tamoxifen.
I chose tamoxifen because I already had multiple incidences of tendon/facia problems and osteoporosis. My risk for thrombosis and uterine cancer was somewhat lower because of my health profile. I feel like I’m taking a small risk on 5 mg (still a risk, though) because I couldn’t tolerate 20 mg.
My headaches are back, one of the initial reasons along with brain fog, that my dose was lowered. I’m working with my PCP to eliminate causes for the headache besides tamoxifen. As the onset of headaches was March last year, and once again onset in March, I’m trying an antihistamine that targets vasomotor rhinitis along with allergic rhinitis. Tamoxifen is a known to cause vasodilation, and vasomotor rhinitis can increase vascular permeability. So it could be a double whammy of vascular issues pushing the headaches. I’ll be back at the cancer center next month, so hopefully I can manage an effective level of tamoxifen . . . or I’ll be discussing risk again and whether I need to make a change.
Probably TMI, but as you work through what’s right for you it might be helpful to know some of the details of why people chose a HT, or why there are problems. You can choose better, know you’re own situation and compare benefits, risks, and side effects.

traci999 | @traci999 | Mar 29 9:24am

In reply to @saraabrooks "It's strange how I was on Anastrozole for 90 days. Oncology nurse and my surgeon were..." + (show)

Wow that is very interesting. I was fine when I first started taking Anastrozole also and its about the 90-day mark for me also that I have started having all these symptoms. I am not myself at all. It's like a foreign body has entered my body and taken over. I cannot go on like this. My regular physician is trying to help me also, but I will definitely look at the manufactures of the medication. I think Anastrozole is a generic form but I'm not sure. Thank you so much for your response. I really appreciate any help.

nana49 | @nana49 | Mar 29 9:26am

In reply to @lifetraveler "Hi! @nana49 Thank you so much for the suggestion! Could you please clarify is it fresh..." + (show)

What I take is " tart cherry juice," sold at any supermarket, it is hard to find sometimes. It comes in a bottle and you can find it within the juice area. You can also find it at a health food store. Google it for store near you.

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