New Side Effects Three Years Into Therapy

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nancym712
nancym712 Member Posts: 51
edited October 2016 in Hormonal Therapy - Before, During, and After

I've been on AIs for almost five years. I'll be finished next spring. For the most part I've tolerated the SEs pretty well, but a few weeks ago my hands started to ache a bit and I don't seem to be able to make as tight a fist as I used to. Also the middle finger of my right hand gets stuck as I'm trying to straighten it. Trigger finger?

Can new SEs just appear after three years? The hand problems started while we were on a long Motorcycle trip and I was grasping handle bars for hours at a time, but this is certainly not the first long trip I've taken. I do this about three times a year. I'm not even sure what doctor to see about this.

Thanks

Nancy

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  • ThinkingPositive
    ThinkingPositive Member Posts: 834
    edited October 2016

    I think they can. I am on Letrozole since Feb. 2015 and a few months ago I developed trigger finger (thumb) but it went away after a few months. Now I am going through the thinning hair stage.. has this happened to anyone? How much does it thin before it stops. The other things that recently have happened is high cholesterol. Never have I had high cholesterol but now I am in the low end of the high range. Trying desperately to get it down, but it keeps flucutating. Also developed osteroporsis of the spine and increase in osteopenia. Now taking Actonel for that.

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  • nancym712
    nancym712 Member Posts: 51
    edited October 2016

    On Aromasin I haven't had any cholesterol problems, it's just the never ending battle with hunger. I think I'm always hungry or I'm working out :(

    Yes, I had osteopenia going into this. It hasn't gotten any worse, actually the spine got better. I take a supplement recommended by my naturopath, Ostera. I didn't like the looks of the possible side effects on the pharmaceuticals. Ostera is actually being tested by the FDA. I've been on it for about 4 years.

    My hair has thinned but it's not too bad. It seemed like it stopped. I actually thought it was just because I was getting older but now that you mention it, it is a side effect.

    It's pretty unnerving to wake up in the middle of the night and not be able to make a fist and then my middle finger sticks. It seems better during the day but not normal.

    The joys... seven more months of this. If I hadn't taken med vacations I'd be done in February. I guess I can be done any time I want. I'm so tempted to just stop.


    Nancy

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  • ashla
    ashla Member Posts: 1,581
    edited October 2016

    Yes...

    I had many of the symptoms including the hand/ grip issues from early on but they were manageable. At the 2 1/2 year mark I suddenly hit a wall. The muscoloskeltal pain got so severe I had to stop exercising and walking. Could barely stand long enough without pain to prepare a meal. I've switched to tamoxifen and while I have some of the same issues, it is bearable,

    The hand issues are frightening though. Afraid to use knives these days. Also the steering wheel of the car. My right grip is stronger thankfully.

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  • mainegirl
    mainegirl Member Posts: 62
    edited October 2016

    I was on Aromasin for 4 years when I developed Carpel Tunnel Syndrome in both hands. After I got that taken care of (cortizone and eventually surgery). I then developed horrible joint pain in my hands. Stiff fingers, especially at night, and I couldn't make a fist, open a water bottle, etc. Unfortunately, I had a recurrence of my cancer in June, 2016 so I was taken off Aromasin. Now, 5 months later, I can tell my hands are getting better. My Oncologist feels it was all caused by Aromasin

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  • TinyDancer5
    TinyDancer5 Member Posts: 232
    edited October 2016

    I have been on Tamoxifen since January. Since July, I have had painful (with no swelling) middle finger joints through the night and even when I wake up. It is very difficult to make a fist. I finished chemo treatments in August. I have found that if I wiggle my fingers, the pain goes away. What is causing this

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  • nancym712
    nancym712 Member Posts: 51
    edited October 2016

    My guess is Aromatase inhibitors is causing your pain and stiffness. Talk to your oncologist.

    Nancy

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  • CCS648
    CCS648 Member Posts: 41
    edited October 2016

    I have been on exemestane for 1 year and 8 months, and while I had joint and foot pain before, all of a sudden it seems like everything has gone down hill. Tendinitis in both hips and both elbows, and tendinosis and two torn tendons in my right shoulder. And when the weather is damp, my hands are starting to hurt. Seeing oncologist Monday to discuss switching AIs in hopes that a different one will give some relief.

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  • JoAnn_K
    JoAnn_K Member Posts: 17
    edited October 2016

    I was on Tamoxifen from 1/2009 through 1/2014. Really never had side effects during that time, but I was abruptly taken off the medication and went into a hormone "storm". I have chronic aches and pains in my joints in my knees and fingers. Within 3 months of going off the medication, my speech changed and I developed tremors in my head and hands. My balance was off. I had to hold onto bannisters for safety doing steps. I followed up with an MRI and MRA to determine if I had a stroke or tumors or circulatory issues in my brain. Thank goodness it was all negative. I am now 2-1/2 years out from that experience, and I am finally past the speech issues. The balance issues are greatly improved, but the achiness remains. When I get very tired, the symptoms return. The reason for this reply is to advise all of you on these medications when it is your time to come off of them, wean off slowly. If your doctor does not give you that instruction, make sure you tell him/her you need to do this.

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  • nancym712
    nancym712 Member Posts: 51
    edited October 2016

    thanks. My onc told me to stop for 2-3 weeks to see how my hands and feet feel. So far no terrible withdrawal symptoms, maybe more night sweats. I don't think I'm going back on them. My husband wants me to, but I'm so finished with this nasty stuff.

    What you went through is frightening.

    Nancy





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  • nancym712
    nancym712 Member Posts: 51
    edited October 2016

    you know, now that you mention it I have been having terrible hip pain for 18 months to two years. The only diagnosis I ever got that seemed reasonable is a overuse injury because I workout/walk/run so much. Now that I think of it, the meds could be a contributing factor.

    The hands hurting is frightening. Not being able to open a pill bottle at night is scary.

    Nanc

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