Tamoxifen and anastrozole

Hi! @windyshores

I am taking Aromatase Inhibitors accompanied by Zoledronic acid infusion; however, due to my own "journey" being so short that I hesitate to chime in... Here is my personal experience:

I started taking Anastrozole on 1/18/24; experienced loads of awful side effects such as: joint pain, trigger fingers, muscle pain all over my body, etc., almost immediately after taking this AI medicine. Due to the fact that I declined the radiation treatments against my oncologists' recommendation, so I decided to tough it out and continue taking Anastrozole because my cancerous cells are ER95%+. My medical oncologist gave me a Zometa infusion on 2/15/24, I developed a rash, itchy skin, and all sorts of flu-like symptoms on the same night. Again, I thought I simply had to endure whatever side-effects that might come, thus I strived on. Unfortunately for me, I experienced acute lower back pain suddenly on 2/25; shockingly, I discovered a soft "bump" growing exactly on my lumbar spine on the night of 2/26. The medical oncologist saw me on 2/28 and ordered a MRI Lumbar Spine with & without IV contrast to rule out the potential metastatic disease. Thank God (!) that the MRI confirmed it was not caused by cancerous cells, but also revealed many spinal issues such as: lumbar lordosis, lumbar retrolisthesis on various levels, so my medical oncologist referred me to an orthopedic spinal surgeon and I chose physical therapy to strengthen my back muscle to support the weakened spine. I don 't know which medications are causing these spinal issues, because my medical oncologist did not confirm nor dispute any of these sudden occurring issues are caused by medications that they prescribed.

Sorry for such a lengthy note:( I truly wish somebody points us to the correct path to take the best available medicine striving forward!

Best wishes to you all, my comrades fighting the disease of cancers!

It sounds like Reclast might have caused the back issue, and I say that only because of anecdotes here, so check with your doctor on this.

If you do Reclast, maybe you can request a lower dose (I read that 2.5mg or half dose is as effective as 5mg and my doctor confirmed this last week). I am going to do 1mg and my doc said I can do it every 3-6 months. He also ordered IV hydration and a slow infusion and told me to take tylenol the day before, the day of before and after infusion and at bedtime, and the next day. Maybe some of this info will help.

I hear you about persisting!! I did letrozole, Tymlos, now Evenity and going on Reclast soon. For me, the side effects of the aromatase inhibitor improved over time and walking more than 30 minutes along with tai chi helped. It's tough!

ps My Reclast regimen is for bones to "lock in gains." And I have not been on letrozole since 2021. Your doctors can tell you if the lower dose is effective in the context of an AI. But the hydration, slow infusion and tylenol might still be helpful.

Hi! @windyshores

Thanks for the suggestion of ordering IV hydration and a slow infusion and taking tylenol before, on and after the day of Zoledronic acid infusion treatment! I'll check with my physicians and see whether they may make any adjustments for future treatments.

Best wishes to you all!

@lifetraveler oral hydration can be good too, day before, day of, day after. I have kidney disease so they are doing IV but I have been told that oral hydration can be just as good.

Thanks again, @windyshores, for your kind suggestion!

I did drink a lot of water before and after the Zometa IV infosion treatment for fear of its potential impact on my kidneys, even though I did not have any known kidney problems...

Will be more cautious on next infusion. Thanks again!

.

The back and muscular pain you mention on Anastrozole is what the A.I. pills will do if you have any family history of arthritis or any damaged joints. I had asked my oncologist prior to starting Anastrozole on 2/1/2022 what the side effects of Anastrozole were, and he had said, in writing (since he never saw me but 2x), "The only side effect of taking Anastrozole is a little bit of stiffness in your hands and fingers when you wake up in the morning, and if you stop taking it, it goes away." This is complete and utter b.x. For some patients (I am one of them) it is a real shit show, because we have either had arthritis in our family history or damaged joints. For me, I had been placed in a clinical trial in 1997 and remained in it until it ran out of funding in 2020. I was selected because I already had bone/joint pain isues MRIs were routinely done on my left knee and X-rays were taken of my hips and knees, to see what happened longtitudinally, over time. Mind you: this study went on for OVER 20 YEARS and yet my Illinois oncologist put me on an A.I., when any of them were going to be bad for my body.
I suffered a blown-out knee and was in a wheelchair for 6 months, plus had to have 32 ml of an anti-inflammatory and 6 ml of Durolane injected in Oak Brook (IL) and was prescribed Tramadol for pain. I still cannot walk well without bracing my damaged left knee. It also damaged my teeth. I have lost 2 teeth to routine cleanings and am in the middle of $10,000 of dental work, including crowns, an implant and the removal of the #4 tooth, which split below the gumline. (And I had dental insurance that kicked in $1,500). My bone density during this period declined from a score of -1.4T in 2017 to -2.2T in May of 2022, which should have been done BEFORE he put me on A.I. pills and suggested radiation. I know these numbers because I am (also) a Type II diabetic and they have explained that my osteopaenia is now almost osteoporosis, which starts about -2.4T. I have received so much conflicting advice that it would make your head swim. Example: 3 days before I was supposed to start 33 radiation sessions at Trinity hospital in Moline, Illinois, the University of Iowa Hospitals and Labs, a noted cancer hospital, said that, if I had had my surgery there, they would not have radiated me at all, I had to make a deicison, which I did with the help of the radiologist who had discovered the tumor. I had been reading about A.I. drugs and it did not ound good for Yours Truly (and, indeed, it was not.) I also tried Tamoxifen and my Texas oncologist got me an oncotype, long requested. It only took 17 months of constant persistence and 3 oncologists to get one, which was 29, meaning that his remark of "You don't need one" was bogus. I didn't have any chemo because the Ilibois oncologist would not order one, despite the fact that they have been "standard of care" since 2013 I'm pretty disgusted by all of this and have lost a lot of trust in the medical establishment. I learned from 3 former employees that this very same doctor had treated their mother. She had b.x. and it returned after many years. She knew something was "off " in her body, but this doctor refused to run the tests to confirm it. Her 3 daughters (who were my students when 12 and grew up to work for me) wanted to take their Mom to the Mayo Clinic, but the Illinois oncologist blocked their access to her tumor. (which is illegal), Among other things, he said, "Why would you want to take her there. I interned there I know everything they know," (!) He also said, "After I talk to you three, I need therapy." To me, he simply would get up and leave. Which is what I eventually did. I got my oncotype 17 months after asking him to please order one to guide treatment. The chemo boat had sailed, but I went through with the radiation because of my reading about the side effects of the pills they want us all to take. I am now 2 years and 2 months past surgery and practicing Eternal Vigilance. When I am in the Midwest, I have to drive 3 hours to be supervised Here in Texas I have a doctor I think does care if I live or die who spent over an hour with me when I first became his patient and has said that (a) I hould never have been put on A.I, pills because of my well-documented bone/joint issues and (b) If I had been his patient I would have had 3 bouts of chemo,

And---as a post script---that patient I knew personally, who begged him to run the tests to confirm whether or not her cancer had returned? It had. She had pancreatic cancer and Diana died in hospice after he talked her daughters into letting him bombard her with strong chemo that was too little, too late. I wrote to the hospital about my treatment and never heard anything at all back, This did not surprise me, as, in 2018, when I had my first (of 3) stereotactic biopsies the woman doing the scheduling ("Jane") was terrible. I asked her for a second ice pack so I could put one in the freezer while the first one was thawing out. When I wrote about Jane's cavalier treatment and bullying (She said, "You can make your own" and was generally horrible) I got a letter---3 days AFTER they had already doing the biopsy---telling me that my mammogram had some unusual things they wanted to check in to and I should "discuss it with your doctor." (A little late for discussing the procedure that they rammed down my throat before I had that chance. I have always wondered if the stereotactic biopsy of calcification in 2018, which was benign at that time, stirred up the tumor, which was found 3 years later. I vowed to never go back to that hospital, but it was the only place close by where I could have the 33 radiation treatments, which some oncologists have suggested ia A LOT I wanted to give a cash gift to one of my attendants, who was graduating the very day I was there. I bought a nice card and enclosed a $50 bill and, a few days later, I got a note from the hospital suggesting that they had confiscated it as a "contribution," which was ot my intention. I will not go back to this hospital for anything, if I can help it. Their records of my treatment are not even right, as they say my radiation ended in May, when it STARTED in May and ended one week before my July 23 birthday.

I read it somewhere also. Maybe we can Google it

You made me laugh with your description of taking an AI as a “real shit show”, even though the side effects are not funny. For me, taking anastrozole was exactly that. I also had an oncologist who did not acknowledge my MANY side effects as being caused by the drug. Sadly, the dismissal of side effects is all too common for breast cancer patients who take Tamoxifen or AIs.