I quit Tamoxife n 10 days ago

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Sharlie
Sharlie Member Posts: 3
edited October 2017 in Hormonal Therapy - Before, During, and After

Hi, I'm new to this site. I've been looking all around on the internet for info about not taking any hormonal therapy drugs and came across this site. I'm almost as overwhelmed as I was when I first got my diagnosis back in March of this year. Having to do a boatload of research again. I had a BMX, with no reconstruction back in mid-April and began taking Tamoxifen in early May. I did not need Chemo or Rad. ER Pos, PR Pos, HER2 Neg. First few weeks on Tamx I had no side effects (SE), then they gradually began with minimal SE: hot flashes, lower energy, more anxiety, memory fog. After 3 months, all of the SE began increasing intensity, plus I began getting muscle twitches and insomnia. The muscle twitches were severe one day and then settled down into a constant feeling like someone was in my skin performing acupuncture from the inside! It was driving me nuts. And the memory fog was becoming very worrisome. So 10 days ago I quit taking the Tamx and called my oncologist's office and he agreed with me. I see him in 4 weeks and we will go over my options. I want to go in well informed and be as well prepared as I was for the initial surgery. After being off the Tamx for 10 days, all of the SE have lessened and I expect they will completely go away in a matter of weeks. I an 68 and have arthritis just about everywhere in my body, which is why I did not choose Arim, plus I have lower spine degeneration..so I didn't want any more pain in those areas. I might consider taking 10mg of Tamx, but I'm also thinking of taking nothing at all. I'm trying to find statistics for survival rates w/o hormone therapy and looking for personal stories of those who have quit taking them nor never started. I am on the What Next website and one woman mentioned that her oncologist said that sometimes you just have to look and the quality of life and not the longevity. My quality of life 2 weeks ago wasn't tolerable. But I do have an 8 year-old granddaughter that I see often and feel like I must consider her in this equation as well. Any thoughts and shared experiences would be most appreciated.

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Comments

  • gypsyjo
    gypsyjo Member Posts: 304
    edited September 2015

    Hi Sharlie, Sorry that you are hear, but glad you found this site. It's been extremely helpful to me.

    You might want to look at this breast cancer treatment calculator. It seems to be what is used and is tailored somewhat to your situation.

    http://www.lifemath.net/cancer/breastcancer/therap...

    I am also going through the same soul searching in whether to continue or not. I have been taking anastrozole for about 4 months and am not happy with the lifestyle changes I am making to accomodate SEs. I did have some arthritis and it has gotten much worse. I am first trying to find solutions to each and every SE. I'm also giving it a longer try as several people say so many months in, the SEs lessen. I hope this gives you a basis to talk with your MO.

    Jo

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    I'm in the same boat. I started taking Tamoxifen on July 12th and quit 6 weeks later due to severe side effects. I have an appointment with my oncologist tomorrow and will discuss this with him then. (At the time I quit I had called his office and he was out for the entire month on vacation so I only discussed with his PA.) I had slow-growing, node-negative cancer, which is much less likely to recur. According to my Oncotype report I have a 6% chance of distant recurrence if I take Tamoxifen, and according to the CancerMath site that gypsyjo mentioned I have a 5.5% chance. Tamoxifen reduces the chances of recurrence by 40-50%, so this means that without it I have a 10-12% chance of recurrence. I'll take those odds, especially because my most concerning SE was proven damage to my retina, and I need my eyes to stay healthy in order to work (I'm a software engineer) and support my family.

    Did you have an Oncotype test done? If so, you can roughly double the percentage risk of distant recurrence score from that report as your chances for recurrence without Tamoxifen.

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  • radgal
    radgal Member Posts: 100
    edited September 2015

    Hi Sharlie and SummerAngel,

    I commend your courage to take Tamoxifen. I don't even have the courage to try it or the aromatase inhibitors based on everything I've read about the horrific side effects. As such, I've been researching natural options, particularly indole-3-carbinol.

    There is a tremendous amount of research. If you google "indole 3 carbinol and breast cancer" you will see some of the papers I'm referring to. I also went to PubMed and Goggle Scholar so that I could show my oncologist that there are studies supporting my desire to take I3C in lieu of Tamoxifen or the AIs.

    I don't have your answers. I haven't yet started taking I3C as I don't want to take it without the support of my oncologist whom I'll see for the first time on 9/30/2015 after I get my Oncotype DX results.

    I am really hoping that he will support my decision. I definitely will be armed with papers supporting my decision. One paper I recommend is entitled "Indole-3-carbinol is a negative regulator of estrogen."

    Thank you for sharing!

    Hugs!

    rad gal

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  • dtad
    dtad Member Posts: 2,323
    edited September 2015

    I'm a little confused. I thought your oncotype number told you how your cancer would respond to chemotherapy assuming you are taking an anti hormone. I did not realize it gives you percentage of distant reccurence. Are there two different parts of it? My oncologist only told me about the effectiveness of chemo? Thanks for sharing

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    dtad, did you get a copy of your results? If not, ask for them! There are several pages to the report, the first page says "Prognosis: 10-Year Risk of Distant Recurrence after 5 Years of Tamoxifen, Based on the Recurrence Score Result". That page gives the percentage likelihood of recurrence on a graph and the percentage itself on the left-hand side of the graph.

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  • dtad
    dtad Member Posts: 2,323
    edited September 2015

    thanks so much SummerAngel. I didn't know that. I don't have a copy but I will certainly get one ASAP! That's why I love this site. Always learning something new! Best of luck to you

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  • dtad
    dtad Member Posts: 2,323
    edited September 2015

    SummerAngel is it a separate number than the one that indicates if chemo would be beneficial?

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2015

    Hi. While you are researching and waiting to discuss with your MO you may want to browse the 'Alternative' and 'Complementary' threads here on BCo. Even if you don't follow them they do have good information. I followed conventional all the way but respect that each has to decide on their own so (if it works) here are the threads. If it doesn't work you can search on BCo for them.

    https://community.breastcancer.org/forum/121 - BCo Alternative thread

    https://community.breastcancer.org/forum/79 - BCo Complementary/Holistic thread

    Best to all on this journey and whatever you decide.

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  • radgal
    radgal Member Posts: 100
    edited September 2015

    Dear patoo,

    I am only interested in indole-3-carbinol but thank you for these forum links -- I have read these and most of the other forums daily.

    What were your side effects on Arimidex?

    I know you did the conventional way, I'm sure that many women do.

    Yet they may also suffer greatly from side effects but soldier on despite them. Who knows?

    Can you share more please about your experience?

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  • Sharlie
    Sharlie Member Posts: 3
    edited September 2015

    Thanks for posting the chart site gypsyjo. I had printed it out earlier to take with me when I see my oncologist next month. It says that my life might be prolonged by 112 days by taking one of the hormone blockers. I feel like I already lost about 30 days of a meaningful life when the SE started getting severe.

    radgal I will definitely investigate indole-3-carbinol and thanks for recommending it.

    And patoo thanks for your recommended readings. I will check them out.


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  • Anonymous
    Anonymous Member Posts: 1,376
    edited September 2015

    Hi radgal,

    You will find that a lot of the posts regarding Tamox and AI's are put up by our sisters who are having serious SE's with them and have to try different meds or go off altogether. And you are correct that some push through as long as they can tolerate the SE's and still have a life. Some who have not had any issues are doing well and no longer post.

    Then, there are some of us who are around to try and lessen the fear and encourage people to give a try and then, with their MO, decide. I'm one of those. I had few SE's on Arimidex (now on generic Anastrozole). Trigger thumb was helped with one cortisone shot. Carpal tunnel was relieved by wearing a wrist/hand wrap 24/7 for several weeks, then only at night for another several weeks to finally not needing one at all. Started taking the little pill at night and found I had problems getting to sleep so I switched to taking it in the morning and no sleep problems now. I would love to blame weight gain around my middle on it but, truth be told, it was letting too much 'bad' food pass through my lips and teeth. I now have that pretty much under control though I can do better but I have dropped 30 lbs in the past 22 months. I used to have stiffness after sitting for a lengthy period of time or when I awoke in the morning but that appears to have subsided. That could be due to a commitment to daily exercise of some sort.

    I know this topic was regarding Tamox so please take my comments in a general way.

    We are all different and react differently to these dreadful meds but at least they are there for those of us who have the choice whether to go with them or not. The only reason I posted the other links, to make sure you and anyone else reading here know or can find the options. If you have decided on the indole... then that is the right choice for you and no-one on these or any other website can judge you. You have the full support of everyone I know on here and more.

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  • Moderators
    Moderators Member Posts: 25,912
    edited September 2015

    Sharlie-

    We want to welcome you to our community here at BCO. As you can see from the response you've gotten so far, this is a very supportive and knowledgeable community, and we hope you feel welcome!

    Please let us know how it goes with your doctor. Everyone has to make the treatment decisions that are best for them, and it sounds like you've done that. We're thinking of you!

    The Mods

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    dtad, yes, it's a separate number. Actually, the report page that includes how beneficial chemo would be doesn't list a specific number. Here's mine. This is part of the first page, which shows the risk of recurrence:

    image

    This is part of the second page, which shows the prediction of chemo benefit:

    image

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    Radgal, thanks for the info on i3c, I've been reading up on it. I'll talk to my MO today about it, too!

    I also agree with patoo that it's definitely worth a try before going alternative, at least for most of us. There are so many women with mild to no SEs at all, and the benefit of Tamoxifen is so great that to me at least it was worth giving it a try.

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  • Sharlie
    Sharlie Member Posts: 3
    edited September 2015

    I definitely agree that it's worth trying one of the estrogen blockers. Many women (and men) do not have any or just mild SE. I believe it's a good first step. And if you do have bad SE, just consult with your oncologist. Mine told me that he wanted me to be a complainer...he didn't want me suffering silently. His favorite story is one woman who came in...at the request of her family, and she told him she hated her family! The SE had gotten that bad for her that she was miserable and hated everything everything and everybody around her. So give it a try, but don't suffer in silence. There are many other choices.

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  • peggy_j
    peggy_j Member Posts: 1,700
    edited September 2015

    I'm glad you're talking to your doctor. They should have statistics showing the expected benefits of different treatment, so you can make an informed choice. I think someone else mentioned: discussion boards tend to be biased towards patients who have problems; patients who feel well tend to not visit as often (I think that's human nature). So reading the comments here (or anywhere) may not be representative of actual reactions. (if that even matters) FWIW, many doctors believe that the SEs of the anti-hormal meds calm down after a few months. That was the case for me. Obviously 10 days is a lot shorter than 3 months so you may not want to tough it out but just an FYI. Of course, each patient needs to weight the pros/cons for herself and make the decision that's right for her. Making decisions in the face of uncertainty is one of the hardest things.

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  • SummerAngel
    SummerAngel Member Posts: 1,006
    edited September 2015

    I just got back from my MO's office and he convinced me to give it another try on half-dosage Tamoxifen. He said his gut feeling is that I will still end up with the SEs but that it's worth a try since they went away after stopping. I agree, it's worth a try. He's a great doc, very understanding!

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  • Mulligan
    Mulligan Member Posts: 205
    edited September 2015

    Sharlie, I was in the same boat. My SE from tamoxifen was debilitating. My SE also got increasingly worse for me the kicker was the joint pains, they were so bad I didn't even want to get out of bed at times. So I stopped Tamoxifen after trying it for 6.5 weeks I decided my QOL was more important. I saw my Onco a month later and in that time my joint pain eased up about 90%. He suggested I try Toremifene/Fareston (they say it's like a distant cousin of Tamoxifen) and low and behold no joint pain.

    Unfortunately for me, my liver enzymes have become elevated (along with other symptoms) since taking Toremifene, had an ultrasound done and they found a lesion on my liver, I'm going in for an MRI to find out what it is on Wed so hopefully it's just fatty liver disease. With that, if it is fatty liver (not overweight and I hardly drink) I will most likely stop HT all together as my Onco doesn't recommend any of the AI's since I'm premenopausal and the SE for joint pain are way more prevalent in those drugs.

    Sorry to be long winded, good luck and I hope you find a solution best for you.

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  • YoungCiaoBella
    YoungCiaoBella Member Posts: 3
    edited October 2017

    Hello there im not sure if you checkin this forum anymore, but I am also on torimifine and my liver test shows elevation also. My doctor wants me to re-test next week and if it still shows elevation, then ultrasound. Just wanted to ask you what was your outcome now with your liver.

    Would love to hear back from you. Thank you

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