Anyone not able to do AI and stuck with Tamox?

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Artista928
Artista928 Member Posts: 2,753

Saw my onc today re hormone tx now. Finished 28/28 rads last Tues and am pretty fried/uncomfortable but am forging forth with the next step. Plan was for Lupron + AI as I'm almost 52 and haven't had pd since last Nov. I have terrible OA of both knees and she saw how hard it is for me to rise up and initially walk. Said putting me on this would pretty much cripple me with the lousy joint SEs AIs have. So that's out which bummed me out because even though it's like 5% more safety, I was 95% ER+ and being overweight are just going really against me in the recurrence category.

She'll see me in early Aug and if by Nov my joint issues get better which I don't see how without surgery-- but I'm way to young for joint replacement sx and overweight too-- then she'd put me on an AI. Otherwise it's Tamox until I improve those things. A bit depressed. Anyone else my age or up not be able to do AIs, high ER+ and doing well long out from being on Tamox alone?

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  • bluepearl
    bluepearl Member Posts: 961
    edited June 2016

    Stage 3A sort of requires an AI and not everyone gets joint pain...even though that looks to be a great possibility. That said, many women had just tamoxifen at one time and did very well. I can't take AI's because of the SE....there are several so you might just want to try....some women find extremastane a lot less problematic on joints. Having a high ER is a good thing. Means the anti hormonal will WORK. One can work on being overweight, which I am too...and it ain;t easy.....but doable. My doctor likes the South Beach Diet.


  • farmerlucy
    farmerlucy Member Posts: 3,985
    edited June 2016

    I couldn't do the AIs either. The joint/ligament stuff was just too severe. Femara was better than Arimidex for me. I was on a total of ten months. Now I'm back on Tamoxifen. It is so much easier for me. Take care! Hope it goes well.

  • keepthefaith
    keepthefaith Member Posts: 2,156
    edited June 2016

    artista, I am on Tam w/osteoporosis and osteopenia. I am not sure that the difference in the benefit from the two drugs is 5% though. I think I read that it is closer to 1-2% from studies, but could be wrong. Regardless, Tam has been good to me, so far. I have been on it for 25 months. I had a hysterectomy/opherectomy 11 yrs ago, so no ovaries here. I was post-meno when DX'd. Being Stage 3, I can see your concern and initially my MO said 2 yrs on Tam, then we would re-evaluate, to consider Als. Well, after another bone density scan in Feb., my osteo was slightly worse, but nothing to be concerned about. I am on calcium and D3 supplements, try to walk frequently. I'm hoping by the time I am at my 5 yrs, I will be done with the Tam and no Als. We can only do so much and we have to find the balance between quality and quantity of life. Maybe someone who has been on Al's and injections will chime in. You could always seek another opinion. Best wishes.

  • coraleliz
    coraleliz Member Posts: 1,523
    edited June 2016

    I started my 5 year Tamoxifen sentence at age 52(almost 53). I wasn't menopausal at that time. I wanted to have ovarian suppression but my MO wouldn't agree to it. He said I could switch to an AI when I went into menopause. I've probably slipped into menopause but have no desire to switch to an AI. I'm only 3 months away from the 5 year mark & will not continue on to 10 years. Enough is enough! Switching to an AI, in my mind, would just be trading problems/SEs.

    Hope you find a drug that gives you few if any SEs.

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    52 is “too young" for knee replacement surgery? Baloney. The average age is 55. Go find a good orthopedic surgeon. pronto. I had my R knee replaced at 61 and my L at 62 and though rehab was no day at the beach, in retrospect I should have done it way earlier. Best health decision I ever made. Because of my “bionic knees," I don't get any knee pain! (OA is basically inflammation caused by eroded and inadequate cartilage). Yes, I do get R hip bursitis (but I injured my hip months before my bc dx). I get pangs in my ankles........but I've had those almost 20 years, perhaps because of all the times I sprained them in my youth. My R thumb is triggering like Annie Oakley.....but so did my L one, starting in 2007. I occasionally get a sore back....but I've had worn spinal facet joints more than half my life. My advice? Get those knees replaced, rehab them, and then try AIs.

    QOL is paramount--and it's not just about what adjuvant cancer treatments to try or reject. If your knees are killing you every time you get up and try to walk, then you are NOT too young to get them replaced! The average implants now last 25-30 years...and counting. Remember--your life and your health are more than just your cancer.

  • Artista928
    Artista928 Member Posts: 2,753
    edited June 2016

    I worked for reknown joint replacement surgeons. But the biggest issue is my BMI is way too high and the chances of having infection is way too high and for the implants not to fail is higher too. I have to lose weight, a lot of it. Right now I'm trying to figure out how to do a medically supervised liquid diet. All my docs point me to diet and exercise but I can't exercise with my shot knees and hips now becoming an issue--just don't know who to contact and if insurance covers such a thing.

  • Lily55
    Lily55 Member Posts: 3,534
    edited June 2016

    can you do exercise in water? Losing weight will help against cancer too......I was awful on AIs but find Exemestane is loads better for me joint wise, it affects me in other ways but joint wise by far the easies

  • ChiSandy
    ChiSandy Member Posts: 12,133
    edited June 2016

    Before my first knee replacement I was 210 lbs; before my second, 197. I'm barely 5'4" on tiptoe, small frame. Because of my age (>60) and obesity at the time of my first TKR, I was not a candidate for simultaneous bilateral TKR, but getting that first one done made weight loss much easier, which in turn made for a faster rehab for the second one. I was by no means the fattest person at the rehab center either. And having two good knees again got me down to 175 before I began dietarily backsliding. Had I known bc was in my future, and that it (contrary to all those disease-of-the-week TV movies) normally leads to weight gain, I'd have stayed more careful. But it is what it is. And I'd rather be 195 with good knees than 210 with bad ones

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