Can't stay on Letrozole

Deamo1
Deamo1 Member Posts: 193
edited October 2018 in Hormonal Therapy - Before, During, and After

There is no way I can stay on Letrozole. I seem to get side effects of all drugs but I gave it a short try (4 days) I felt like I was going to have a stroke. My eyes felt crossed, holding onto walls because of dizziness, nausea like I've never had before, chest pain, left arm and left leg swelled. I am done. My Mamaprint test said I had a 7-10% chance of reoccurrence in 10 years. I am ok with that. Clear margins/no lymph nodes. Has anyone tried DIM? Of course the Oncologists never heard of it. I feel like an experiment when they pass out these drugs to us. It's all a guessing game. Sorry for the bitching but I have had it.

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  • wallan
    wallan Member Posts: 1,275
    edited September 2018

    Hugs to you, I understand. I have similar symptoms, including excruciating headaches on generic Arimidex.

    Once I switched to Brand name Arimidex and took it at supper time while I ate, I have minimal side effects.

    These drugs are powerful.

    wallan

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  • Deamo1
    Deamo1 Member Posts: 193
    edited September 2018

    Thank you for understanding. They sure are powerful. My nurse navigator said they are called chemo pills. I stopped. Hoping these symptoms stop soon. <3

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  • JoE777
    JoE777 Member Posts: 628
    edited September 2018

    You have every right to bitch and complain. you can see my DX below. I understand the misery of AIs and know where you're coming from. After these SE pass you might allow your doctor to change the meds. If you're HR+ they are the only protection against this persistent form of cancer. I took letrozole for over a year then was switched to exemistane. Couldn't stand the SE so I took myself off. Two years later I am metastatic to bone and lungs. Now I'm back on letrozole and more meds but SE are bareable compared to the alternative for now. I had a 7-10% chance of recurrence with Letrozole. It's a shock to find out that treatment amounts to a lifetime of vigilance. Give yourself some time off and try another. If you can't then you can't. I hope you'll hang with the ladies on this site for support and encouragement . There is so much love, compassion and empathy for your plight. Hope you'll feel like keeping us posted. Hugs and peace to today. Jo
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  • Deamo1
    Deamo1 Member Posts: 193
    edited September 2018

    JoE777 what were your side effects when the cancer came back? I have pretty much the same Dx as you had in 2012 but had a dbl mastectomy.

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  • marijen
    marijen Member Posts: 3,731
    edited September 2018

    JoE777, I'm not so sure a recurrence can be blamed on stopping the anti-hormonal as your cancer may have developed a resistance and/or had been theredormant all along. Your were on the anti-hormonals for four years? And dx'd nearly seve years ago. 30% of early stage do go on to stage IV. And 44% of early stage recurs in the bones. The 7-10% is just a statistic, does not apply to all. And I think that is for the first five years. Needless to say, you shouldn't blame yourself. So sorry you are stage IV.

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  • JoE777
    JoE777 Member Posts: 628
    edited September 2018

    Marijen, I was only on AIs for 2 years then off everything for 2/12 yr. I think I was just one of those who fell into distant metastasis.



    Deamo1, it began gradually. Slight intermittent pain in left hip joint- A couple of months later lower back and tailbone pain. I'm very active and do all my yard and house work. Thought I had hurt my back. I'm 69. Never lost my flexibility-long time yoga practitioner. Dr. Gave Me anti inflammatory and ordered X-rays,showed nothing. after two more rounds of images, orthopedic dr found the tumors in lower back. No local or regional recurrence, no node involvement, beautiful margins, all my lymph nodes look clean even now. Pet/Ct scan showed 5 tumors in sacrum and 5 nodes in lungs. No symptoms of lung involvement. Go figure. Sorry for long post. I'm a talker. Jo
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  • marijen
    marijen Member Posts: 3,731
    edited September 2018

    Falling into metastasis sounds like a very bad dream. Thankfully your doctor perservered with the imaging and took your complaints seriously. How is your pain now?


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  • Deamo1
    Deamo1 Member Posts: 193
    edited September 2018

    JoE777 thanks for the info. I'm 63 and every little pain since my mastectomy has me worried. I've had upper back pain since surgery. I'm told it happens after mastectomy but I keep on thinking the worst.

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  • JoE777
    JoE777 Member Posts: 628
    edited October 2018

    Marijen, my pain is minimal now but all three meds cause back pain so I guess it goes with the territory. A few days after DX I received 10 rads to the tumors in the back and that pain was gone. Wonderful!!!!


    Deamo1 I can see the possibility of upper back pain once the across the chest has been removed. Just be vigilant and try not to let the fight to find the best meds for you to be effective and give you some peace of mind. Have they suggested physical therapy or an exercise that may help with pain. I continued to practice gently yoga after surgery and during radiation. Ithelped so much with the stiffness that sets in. I can't imagine the possible tightness after a mastectomy. Have a good one. Peace. Jo

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  • Deamo1
    Deamo1 Member Posts: 193
    edited October 2018

    JoE777, I did have PT but they mainly focused on lymph message. I'm seeing a Chiropractor now (1 visit so far) He has helped many after mastectomy patients. He said I'm extremely tight in the traps area across my back. Hoping he can help. Thanks

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  • dtad
    dtad Member Posts: 2,323
    edited October 2018

    Deamo...to answer your original question, I take DIM in leu if an aromatase inhibitor. Let me know if you want more information on it. Also know that the subject of refusing anti hormone therapy is not received well in this community. You might want to check out the alternative thread. Good luck and keep us posted

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  • Deamo1
    Deamo1 Member Posts: 193
    edited October 2018

    @dtad, yes more info please. Not sure how, can you send a message? Can't understand why it's not received well. Not everyone can take that poison.

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  • dtad
    dtad Member Posts: 2,323
    edited October 2018

    I will private message you

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited October 2018
    Just to be clear, Deamo, it is not a guessing game. These drugs have saved thousands of lives. I am sorry that the side effects are so harsh for you and no one begrudges you trying something different. Perhaps calling them “poison” is a reason people would be offended since for some of us, these drugs are our only defense against recurrence. I hope you find the info. you need on the alternative thread.
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  • Deamo1
    Deamo1 Member Posts: 193
    edited October 2018

    Thank you and I respect everyone's opinion. It was poison to me.

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  • Peregrinelady
    Peregrinelady Member Posts: 1,019
    edited October 2018
    I am sorry for that, but remember another AI may not give you the same side effects. I wish you well.
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