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Hormone therapy or not if bad side effects

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luvmy4sons
luvmy4sons Member Posts: 18

5 months now on Letrozole…post 20 radiation treatments after removal of 1 cm invasive ductal carcinoma, oncotype 17 and no nodes positive but high grade all markers. The severe hot flashes are back and with adrenaline rushes that keep me from falling quickly back to sleep. Been awake every 1-2 hrs for years now with hot flashes but finally had been able to fall back to sleep as the severity improved…now bad again. Drenching sweats, adrenaline surges, insomnia. Cholesterol shot up.

Statistics scare ya. Debating quality of life and the fear of it returning or worse yet distal recurrence. Anyone opt to stop hormonal therapy and are many years out?

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Comments

  • muska
    muska Member Posts: 224
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    Have you discussed it with your MO? Does s(he) recommend trying another AI?

    Bes

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Appointment next month. Plan on discussing. Just wanting to get some real life information.

  • minustwo
    minustwo Member Posts: 13,205
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    luv - I can't speak to the issue since I was ER/PR negative both times. But I know I've seen lots of discussion. Maybe you'll get answers in the Hormone Therapy section

    https://community.breastcancer.org/forum/78

  • parakeetsrule
    parakeetsrule Member Posts: 605
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    What other people did is not relevant. Other people stopping hormone treatment and never having a recurrence doesn't mean you won't either. The best person to get real life information from is your oncologist. They can explain the additional risk you'll personally face if you stop treatment. It could be significant, or it might not be. But you need that information before making a decision.

    If it helps, there is research showing that people who experience certain side effects like hot flashes have a lower rate of recurrence. I wish I'd known that.
  • luvmy4sons
    luvmy4sons Member Posts: 18
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    You are correct. No matter what anyone else has done I have my own scenario and there are no guarantees. I am sorry for your metastasis. Severe hot flashes didn’t keep me from getting it. Severe side effects AND staying on hormone therapy has low rate of recurrence or even if the therapy is stopped? I will look for that info.

  • salamandra
    salamandra Member Posts: 745
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    This decision is very personal and depends on so many of our own personal health and cancer factors. You don't even share your age. I very strongly suspect that it would have been a very different decision process for me if I were 79 at diagnosis rather than 39, just for the most basic start.

    That said, there are many different options for hormonal treatment. I was able to find one that is currently working for me with tolerable side effects, and many other women are as well, even if the first thing they try doesn't work for them. This is really something you need a supportive and trusted doctor working with you on.

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Iam 58. Thank you for your reply. I plan on an extensive discussion with my oncologist in March. Trying taking it in the morning rather than at night to see if sleep is better.

  • debal
    debal Member Posts: 600
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    Hi! Changing time of day is a good start. Switching manufacturers of the same drug is another option. That worked for me as the fillers can be different. I had to make several calls and did have to pharmacy hop. Had that not worked I would have tried another AI.

    Such a wide range from no side effects to debilitating. Just give each change enough time. The 7 month mark was toughest for me but I got over the hump and it's not so bad now.

    Getting enough sleep is so important. I hope your MO offers suggestions to help you. Take care

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Thank you.

  • ratherbesailing
    ratherbesailing Member Posts: 129
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    DebAL brings up a really good point about trying different manufacturers. After trying several generics, I found I did much better on the brand names Femara and Arimidex.

    Manufacturers of both have programs to provide the drugs at low to no cost for those on private health care plans (not Medicare or Medicaid.) You can check their websites.

  • pupmom
    pupmom Member Posts: 1,032
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    First off, remember you are literally dealing with life and death issues. Hormone therapy has been a game changer for breast cancer survival.

    That said, yeah, the SEs can suck. But, there are treatments. I was having major hot flashes from Tam, but Effexor fixed that. I've completed 10 years of hormone therapy, Tam and Aromasin. I'm still here, but I don't know if I would be if it weren't for these targeted therapies.

    Please talk with your MO about your concerns. S/he may have some helpful suggestions.

    Best wishes, and HUGS

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Thank you very much. Will mention Effexor. Was your cholesterol in normal range? Mine usually runs 150’s. Shot up to 24

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Thank you. Appreciate ideas. Being encouraged to keep at it.

  • pupmom
    pupmom Member Posts: 1,032
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    Luv, my cholesterol has always been a little high. I was taking Simvastatin long before my bc dx. It didn't change with the meds.

  • wondering44
    wondering44 Member Posts: 261
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    luvmy4sons

    I don't know if this will help you or not.

    I had to stop taking progesterone when I was diagnosed due to PR+ status. I took it for perimenopausal symptoms (crankiness, sleeplessness, hot flashes). It significantly improved the symptoms but was a no-go after the dx. My 20-year plus GYN recommended a magnesium supplement to help. I started taking Natural Vitality Calm - A Magnesium supplement at night right before I wanted to fall asleep. I sleep through the night. Zero crankiness. No hot flashes. When I started taking Letrozole, I was concerned about the SEs starting back up. I did have a few nights with night sweats. So far, though, no other perimenopausal or menopausal symptoms. My new cancer GYN told me to keep taking the Magnesium supplement. She said it is probably what is keeping me from having those SEs. You can buy it on Amazon or at Whole Foods to try it. I purchase it at Costco now. The price is much better there.

    The SEs you are having sound tremendous. I hope you find some relief soon.

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Thank you! I am so glad your SE’s are not bad. I have had to use magnesium for a couple decades now for sleep due to my fibromyalgia. Maybe some of my autoimmune issues worsen this. I did add a sustained release magnesium at night as well and it had been improving till the Letrozole. I did switch to taking it in the morning and last night was better night.

    I am so encouraged by all of these precious women here and that has helped me tremendously. Thank you for your reply. I have been greatly comforted by this forum

  • Jamoon
    Jamoon Member Posts: 6
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    Hi all my MO started me on Letrozole a week ago . I am having a burning feeling in my mouth and have dry lips not sure if it's a normal SE . I called my MO but did not get an answer as yet. Just hoping that as time goes by it will go away.




  • VioletKali
    VioletKali Member Posts: 97
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    I was DX at age 31, 3 weeks prior to my 32nd. I chose to discontinue hormone therapy die to quality of life.

    It has been nearly 8 years post DX and I continue to remain cancer free.


  • threetree
    threetree Member Posts: 1,479
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    Jamoon - I get dry lips also - dry everything as a matter of fact. Blistex morning and night, after brushing my teeth, seems to take care of the dry lip problem, but the dry everything else is another story. I can't stand what Letrozole does to me mentally and physically, but I've been plowing through for 2 years now. I want to at least say that I gave what they said would help a good try before thinking of quitting (which I do every day).

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Cholesterol shot up 100 points, severe anxiety and panic attacks and sleeplessness and severe hot flashes with adrenaline rushes. Stopping for two weeks and then trying another. Going to try

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Thank you. Going to try a different aromatase inhibitor. And everyone is different. But I appreciate the encouragement. Hope you continue to do well!

  • bitchonwheels
    bitchonwheels Member Posts: 17
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    My diagnosis at age 60 was similar to yours but I also had DCIS with IDC and I was Grade 2 - Oncotype 13. Pathology showed LVI and a focally positive anterior margin. I had lumpectomy and radiation with boost but no re excision. I started on Anastrozole daily and did great for 14 months before the bottom dropped out with excruciating bone and joint pain. I went off for 3 months then started on Letrozole which I take 3x per week without oncologist approval. Studies have shown it has a half life of 48 hours and I believe that daily dosing is toxic for some women. I have been on this regimen for 7 months and am tolerating it well. Everyone is different when it comes to AI’s but QOL was important to me and given my age and Oncotype score I am comfortable with my decision. I just wish I had that crystal ball. Good luck to you with whatever decision you make

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    Yes. I had a brief email exchange with oncologist about going every other day. He pointed out studies show no increase in quality of life and side effects with that regimen although the levels monitored proved just as good on that schedule verses every day.

    My bottom fell out a week ago with uncontrolled anxiety attacks and sleeplessness. I see him next week to try a different one and go from there. Hoping if this one doesn’t raise cholesterol like Letrozole did, I can add in Effexor low dose if symptoms start up again.

    Thankfully my vegan diet and vegetable juicing has thus far kept away the joint pain. Started that 19 years ago for the degenerative disc disease, arthritis, and fibromyalgia pain. It is very effective for me in that regard.

    Thank you for sharing your experience. May it go well for you. I have great empathy and sympathy for these hard choices.

  • farmgirl888
    farmgirl888 Member Posts: 14
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    Relizen by Bonafide is what my Oncologist revommends to help with hot flashes.

  • trippositive
    trippositive Member Posts: 21
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    I agree with a lot of the comments on here. It’s a personal decision. I tried all 3 and wasn’t capable of getting out of bed due to the extreme joint pain, headaches and overall anxiety. I took a month break and went back on letrozole, but only a half dose. I started with every other day and then went to every day. It’s been ok, I haven’t had the horrible side effects, but I do have issues with blurry eyesight and some joint pain that I can manage with Tylenol. I think AI’s are the devil. My QOL was awful and if it gets bad, I will quit altogether.

    Good luck

  • salamandra
    salamandra Member Posts: 745
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    Hi farmgirl,

    My oncologist just recommended Relizen also. I'm not used to getting nonregulated supplement regulations from a doctor so it raised my eyebrows a bit. What has your experience been like with it?

  • luvmy4sons
    luvmy4sons Member Posts: 18
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    I have stopped my aromatase inhibitors. Side effects not tolerable for the single digit predicted percentage chance at longevity.

  • jrnj
    jrnj Member Posts: 407
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    luvmy4sons, it’s aweful I know. I’m miserable. But I can’t quit. I’m just going to live my life in misery and pain. Good luck

  • denny10
    denny10 Member Posts: 421
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    It is such a hard decision, what to do when we encounter harsh side effects. I was post menopausal when I did 5 years on tamoxifen and did ok. Then within a month of switching to exastamine I could not walk up the stairs. I quickly stopped that, without regret. I have also had a few years on letrozole and faslodex. During that time I gained a few pounds in weight and my blood pressure went up, so had to take meds for that. When I changed treatment my blood pressure lowered, so I don't need those meds now. We are all unique and our bodies response varies so much. I hope your oncologist discusses alternatives with you and you get your best QOL.