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"Tamoxifen Road" - Support and Encouragement

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  • edwards750
    edwards750 Member Posts: 1,568
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    I took Tamoxifen for 4 years. My MO started me out on Arimidex which she shouldn’t have because I had osteopenia and Arimidex attacks the bones. She switched me to Tamoxifen after the first year. Just so you know I have osteoporosis now. I’m sure it wasn’t all due to the Arimidex but it sure didn’t help.

    I had joint pain, hot flashes and lack of concentration when I took Tamoxifen. Btw my MO said 5 years was enough for me for any drug. I will be 8 years out in August God willing. One of the reasons she decided I should quit taking the drug was because of the risk of blood clots. I had one when I was 16. She also said since I had had children it would be okay to take it but why take a chance after 5 years.

    I know women who had debilitating side effects from Tamoxifen and quit taking it and QOL is defiimportant. Had I experienced those side effects I would not have continued taking it either. I would have wanted to take something though just as an extra insurance policy.

    Diane

  • edwards750
    edwards750 Member Posts: 1,568
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    image

  • edwards750
    edwards750 Member Posts: 1,568
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    The pic is my furbaby who was by my side through the process too. Such a sweetie. I love dogs.

    Diane

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Edwards, I had a dexa scan after I had a hysterectomy // oopherectomy. I was going to be taking an AI, but had not decided on which one to go with. After my scan, Tamoxifen remained my best choice. On a recent scan, with 2 full years of Tamoxifen under my belt, I still lost some density. I have to step up my game with extra calcium and a campaign of vit D. Congrats on marshaling through your 5 years. I am well into my 3r year.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Here are my guys. I use drop cloths to cover my recovered couches.imagehimage

  • edj3
    edj3 Member Posts: 1,579
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    I have not yet reached the point in my treatment where the hormone blockers are prescribed. That day will be early next month, so I've been doing a ton of reading, especially the articles on this site, and as many peer-reviewed studies as I can find. I'm also interested in others' experiences because all drugs, including aspirin, have side effects. Some are very easy to tolerate, others are not.

    My MO has already ruled out the AIs. I've mentioned elsewhere that I'm an avid runner and love to race. Last year I over trained and over raced, and fractured my pelvis (the inferior pubic ramus on the right side, to be exact). That's a very rare break and is slow to heal because of where it's located. In the course of that treatment, my orthopedist recommended a DEXA scan and it turns out I have osteopenia despite having done strength work for years and having run all my life.

    So no AIs for me.

    I am (rightly) concerned about the side effects of tamoxifen, and the impact it might have on my own quality of life.

    We all have to do the calculus of deciding what quality of life means to each of us. As another poster (in a different thread I think) said, she didn't want to get extra years of life if that meant she was curled up in a ball on her bed, unable to do the things she loves. That's where I am too. So I'm very interested in the experiences of other women who are like me, very active, dedicated runners who like running races competitively. As a result I'm reading every thread about tamoxifen I can find.

    Questions that are outstanding still for me include the dosage requirements. Yes, I know the established studies used 20mg doses. But I do have a hard time wrapping my head around the idea that I, a woman who weighs 115, would need the same dosage as my friend, J, who weighs close to 350. That defies all logic. I'm also deeply interested in understanding what the magic is about the five year protocol. Is that just when the study stopped? If the drug reduces recurrence and has a half life in the body of what, two weeks max? why would we take it for five years and then stop? So I'm in the information-gathering mode.

    As a result, I'm all over these threads, I'm asking questions and when someone (still) dances around some direct questions I and a couple of others have very nicely and respectfully asked, well then I get a bit skeptical.

  • pupmom
    pupmom Member Posts: 1,032
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    edj3, the new guidelines are for 10 years. I'm 8 years in and doing fine. Best wishes to you as you continue on this journey!

  • edj3
    edj3 Member Posts: 1,579
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    OK so 10 years and then what? It doesn't work any more? The risk of complications is too high?

  • pupmom
    pupmom Member Posts: 1,032
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    IDK. I've anecdotally heard that some docs are looking at lifetime use, although that is not the current standard of care. This could change though.

  • dtad
    dtad Member Posts: 771
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    Michele in Cortland...I asked you if you were a medical professional and you told me it was a good question but evaded the answer sarcastically. Wow! Please be careful throwing the word bullying around. No one bullied you on this thread. We are all here to support each other respectfully and to also be transparent about the information we post.

    edj3...I'm not a runner so I hope someone who is will come along for you. You have every right to ask your questions and get direct answers. Otherwise why are we here? As for your questions about dosages unfortunately only the 20 mg has been studied and so that is the dosage the docs will prescribe. Hopefully that will change in the future.

    Good luck to all navigating this complicated disease.

  • runor
    runor Member Posts: 1,613
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    edj3, when I was reading everything I could find I never found once, anywhere, that the lowest most effective dose was studied. I did however come across several mentions that at higher doses drug compliance was very low, something researchers struggled with - getting the subjects to take the darn drug. The dose was dropped as a result of how miserable it made women feel. At 20mg women seemed to take it more reliably. However, the effectiveness of this dose was not the aim, just getting women to stay on it, was. IF someone can find studies done over 20 or 30 years on 5 mg, 10 mg and 20 mg, I would love to read them. If they exist, I was not able to find them. My own oncologist said that they have never, ever been done. He confirmed that the lowest most effective dose is unknown and unstudied. 20mg is the accepted norm. We have no evidence that less would not be just as effective.

    I share your puzzlement over the 5 year drug duration. Some cancers have the highest recurrence risk in the first 5 years. Others come back many years after diagnosis. (you will find such stories all over this site!!) What is to be done for those women?

    I do not take 20 mg a day. I take 10 mg a day and 20mg on Sunday and Wednesday. This is self prescribed. I wonder how secure I will feel going off the drug altogether in 3 more years. I might talk to my onc about staying on, maybe 10 mg twice a week, for longer. This discussion has not happened yet. It's an idea I'm kicking around. Good luck with this process, there is lots to learn and lots to consider.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Happy Wednesday!!! It is going to be a fabulous day.... Prepping for another one of my children to return home this weekend, with the help of hubby, of course. College students.....ya gotta love them!!! Thank God I rented a storage unit!!!

  • pupmom
    pupmom Member Posts: 1,032
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    Michelle, I bet your puppers will love all the extra attention! Pansy goes crazy when our grandsons come over! But for me this is just another ordinary Wednesday, grocery shopping, laundry, dishes etc.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Pupmom, I hope so. Otherwise, it will be just chaos. The puppies have bed times and routines. My son did buy a vintage Westfalia, to hang out in this summer. He had been looking for one, forever. Finally, he made the trek with hubby, to about 600 miles away. They did not even take the car hauler. My hubby drove it back, and it was very "fumy". My son has spiffed it up, and tweaked a few things. So, I am hopeful that we keep the in and out the front door, after midnight, to a minimum. There will be 8, including Theodore and Thaddeus, under one roof. The OD Sylvester, would not have minded, but these guys are primed and ready to go.

  • pupmom
    pupmom Member Posts: 1,032
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    Michelle, let us know how your wild and wooly weekend goes! My guess is fun will be had by all! Happy

  • Spoonie77
    Spoonie77 Member Posts: 532
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    For anyone that is interested, here is a list of all studies currently in planning or in research mode referring to Tamoxifen.

    Search Results: Breast Cancer & Tamoxifen @ ClinicalTrials.Gov

    There are currently 419 underway.

    Yes, like Runor stated, there are no studies on lower doses of Tamoxifen that exist covering 20-30 years. However, there are a group of smaller studies over 5-10 years for lower doses. I've posted them on a number of threads, I believe here as well. While for me and my MO, given my chronic illnesses, we were comfortable in the choice of 5 mg daily, it's obviously not the right choice for everyone else.

    Like EDj3 stated, I also agree that's it's definitely perplexing to me that someone at 300 pounds gets 20 mg while someone under 150 gets the same. Like both of my previous MO's have stated, for me, and my health conditions, something (ie 5 mgs) is better than nothing.

    EDJ3 ---> As to your questions....here are my thoughts (the dosage one above)

    "Questions that are outstanding still for me include the dosage requirements. Yes, I know the established studies used 20mg doses. But I do have a hard time wrapping my head around the idea that I, a woman who weighs 115, would need the same dosage as my friend, J, who weighs close to 350. That defies all logic. I'm also deeply interested in understanding what the magic is about the five year protocol. Is that just when the study stopped? If the drug reduces recurrence and has a half life in the body of what, two weeks max? why would we take it for five years and then stop? So I'm in the information-gathering mode."

    and

    "What about after 10 years? It doesn't work anymore?"

    As to the 5 year protocol, my MO explained that in my case, due to my young age, she would prefer 10 years of treatment. I've been told by my team that the younger you are when BC is discovered, the more years left in your life that it is possible for the cancer to recur. And I think the median age of BC is somewhere around 62 years of age in women. I'm 20 years earlier than that, so for me, my team wants me on treatment as long as possible to provide as much edge as possible against the beast.

    The thinking behind this seems to be that evidence in quite a few studies show it increases the length of DFS (disease free survival), so hence 10 years. It shows it helps, so keep doing it. Kind of like (even though I disagree with this) studies show that routine PET scanning for follow-up monitoring does not contribute to improved outcome in patients, so they keep standard of care at ordering PETs only if symptoms exist. It doesn't "show" benefit (that they can measure.....what about MENTAL HEALTH? lol) statistically in extending life, so they do not suggest them. Maybe that makes a bit more sense? Hopefully.

    After 10 years, myself, I don't really know. Maybe they do not have guidelines further than that yet due to lack of studies to prove one way or the other that additional treatment has a clinically significant effect?

    Here is a list of all of the "extended therapy" studies for Hormonal Therapy on ClinicalTrials.Gov -- 256 results. Maybe some of these will help give you an idea of more of the theories behind the different time frames used?

    Wishing everyone health and happiness today. May the sun shine like it is here for me! :)

  • Cpeachymom
    Cpeachymom Member Posts: 249
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    edj3- I am on 20mg Tamoxifen, plus ovarian suppression. I am also 115lbs. I’m about a year and a half in. I have a different theory about the 20mg dose- what if it’s more related to the amount of estrogen that needs to be blocked, or the number of rogue cells it’s trying to suppress? I imagine I have plenty as my youngest child was only 1 when I was diagnosed. I do okay on it, no horrible side effects yet. Certain ones came up at the beginning like dizziness, but that was like a month or two, and only after I took it, not all day. Got used to the hot flashes, I just don’t wear long sleeves anymore! Never was a good sleeper, it’s worse on Tamoxifen, but I can manage. Melatonin helps.

    I asked about the five years. Cancer cells don’t die like the normal cells in our body, but they can go dormant. It is not known if taking Tamoxifen helps kill them or just keeps them suppressed. ( that’s from the Tamoxifen literature.) If I can have five or ten years of a mostly normal life, even though cancer might come back later... for me that gets me through my daughter’s early childhood, maybe to high school. I’ll take that!

    Just my views on things.

  • moderators
    moderators Posts: 8,287
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    Treatment decisions — surgery, then perhaps radiation, hormonal (anti-estrogen) therapy, and/or chemotherapy — can feel overwhelming.

    Some people will have success with hormonal therapy medicines. Some will not, perhaps due to side effects. Some will decide it isn't right for them. Important, as always, is to discuss the options with your treatment team.

    It appears to us that the intent of this topic was to provide a supportive environment for those who have decided to take Tamoxifen, and are on it, not to debate whether or not to take Tamoxifen. There are many threads in the community for this discussion.

    If someone is offering medical advice on our boards, credentials are required. If no medical advice is being offered, only information, and with the recommendation to talk with your doctor, credentials from members should not be imposed and privacy should be respected.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Thank you moderators for clearing up all the issues.

    So, for all those taking or completed Tamoxifen therapy, how was your day? Mine was very hectic, topped off with dinner with my mother in law, locking myself out of my house and breaking into my house. My poor puppies were horrified that I could not get in.

    I would be interested in what people know about dog therapy for breast cancer patients. Does having a dog for support, help keep you compliant with your meds?

  • 41619Courage
    41619Courage Member Posts: 12
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    Michelle - When I start, I'll be taking the Tamoxifen in the evening because of another medication in the morning. My Naturopathic Dr checked my vit D level this week; he's increasing my dose for 8 weeks. He'd like to raise it slightly. Then back to 2000 IU per day. He's recommending vit D with vit K2. Do you take any supplements at the same time of night with the Tamoxifen? Do you drink a good amount of water with the dose? All we drink is water, no juice, no soda, etc. I'm feeling really good about this!

    We don't have a pup but can say that our cats helped my recovery. They will also keep me compliant with my meds because as I tell my husband, he shouldn't get stuck with five cats because I'm a sucker. I have to live at least as long as them. Really, he loves them just as much as I do.

    Cpeachymom - That is Exactly how two different MO's, as well as my client, a breast cancer surgeon explained Tamoxifen to me and my husband.

    good night and pleasant dreams~

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    @41619courage, Thanks for joining us. You should feel really good about moving forward.

    I mix ginger powder with zero calorie lemonade mix. Ginger is very healthy for digestion. I make sure that whatever med I am taking, gets a lot of hydration following. I had the misfortune this spring, of not drinking enough water with doxycycline, and I created short term esophageal erosion. If you live at 40 degrees northern latitude, or above, you probably have lower Vit D. I really liked taking the mega 50,000 units per week, but my MO won't let me take indefinitely. I am going to do a D panel next week and then lobby for the higher dose. Itake supplements in the am, andTamoxifen in the pm.

    I believe that many animals can provide grounding for humans. My husband's aunt has two cats, that I oversee in her absence. They provide a lot of 'cat-panionship' for her.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Thank you Mods for the clarification. Hopefully we'll all take it to heart and refrain from providing medical advice and simply stick to sharing our experiences and encouraging each other as best we can on the difficult roads we find ourselves on. On that note, I wish everyone the best on this thread, on their journey with Tamoxifen, or with whatever else they and their MO may decide is best for them. I won't be checking this thread any longer as unfortunately I find that it drains me of my precious "spoons" and energy much too fast. Self care is important, am I right? If we don't take care of ourselves, we can't help take care of others or our furbabies. My two certified emotional support furballs would be uber upset with me if I stopped being able to have the spoons to brush them, bathe them, walk them, and play with them. LOL. Upset kitty and puppy are not a pretty picture, so again wishing everyone luck and please be kind to ourselves first and foremost. Anyway, if anyone would like to also follow another thread, I and some fellow RADs sisters post often at Starting/declining hormone therapy Nov, Dec, Jan 2018.

    Have a great week ya'll and I'll see ya around the boards. o/

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    This is a very specific board, as the mods pointed out, for those undertaking Tamoxifen therapy and those that have completed Tamoxifen therapy. I am so excited to have a place like this, and have waited a long time to start it. We are going to help each other live daily on The Tamoxifen Road

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Yes Michelle it is, isn't it? And considering I was on Tamoxifen for the past 2 months, you think I would have been welcomed here but I wasn't, was I? Because I had severe SEs and it didn't fit into the "pretty positive picture" you would like to create.

    I am all for support and encouragement for everyone on the Tamoxifen journey, but there are just some things I will not tolerate.

    image


    Community Guidelines, just as a refresher :)


    image

  • scrafgal
    scrafgal Member Posts: 412
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    the mods did a great job clarifying....now we can all just retreat to our favorite threads and be happy🙏

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    How is everyone doing today! Still working towards son coming home this weekend. And, it is Father's Day weekend. My father has long passed, but if alive he would be over 100 Most fathers were 20 to 30 year's younger than mine, while I was growing up. But, I always appreciated his age and wisdom.

    I have become friends with several others on here, and find them very inspiring. If anyone wants to message me, I can provide you with their user names on here. They have inspired and supported me from the beginning. One is very athletic and the other is a singer. They did not take Tamoxifen, but theyare on other threads that are fun. I find them insightful and delightful.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    It is gorgeous today in our area. Continuing on my daughter's inflicted “Marie Condoing" of our basement. I have given away so much stuff in the last two years, that my family wonders what is up? Trying to simplify our household, one room at a time. Anyone else doing downsizing? In the beginning, I was not good at getting rid of stuff. Something changed one year into Tamoxifen, that allowed me to let go of my favorite hordes of stuff.

    I do get hot more easily on Tamoxifen, so I have acquired quite a numberof Lularoe tights, which are thinner than Athleta or Gap body//fit, etc. I gravitate toward layers. And even in the cold weather, in Chicago, I layered a couple of pair of Lularoe and was fine.

  • 41619Courage
    41619Courage Member Posts: 12
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    I'm a minimalist and an organizer, therefore we don't accumulate much.

    Good to know about Lularoe tights. I currently wear Athleta and Lole. Lole runs small though and they are thick. I'll be sure to make note of this if I need to change my wardrobe once on Tamoxifen.


  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    416, My husband, kids and I, seem to "collect" things. My parents, who grew up in the depression, saved everything. My mom had 10 siblings, so saving and sharing was ultra important. So, I have been going through 25 years of accumulation. My daughter is 20, and I found several pair of her jeans that were a size 4. They were some of her most loved jeans, and I am trying to decide whether to keep them for her future daughter, or donate them. She already has a huge memory quilt from all of her activities and sports.

    You are right, all tights are not the same. I love Calia by Carrie Underwood, but they are more appropriate for cooler weather. Athleta makes tights and jackets that last forever, and still look new. I had to back off of compression wear, due to getting overheated. As far as inexpensive athleisure wear, Danskin now at Walmart, used to make a really sturdy tight and pant in a Calia type fabric. They have discontinued that particular item, but not before I bought a bunch and shared with family. Those Danskins wore like iron.

    What is your favorite "go to" top? Mine is a fluke...found by chance...completely unexpected...

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    About 25 years ago, before I had the kiddos, I returned to my University to hear a speaker. That speaker was Norman Brinker. Norman was not your average person, and one of the points of his speech, was to discuss his wife,Nancy, and her sister, Susan. He talked about the organization that he helped start with Nancy. Forget that he founded the restaurant chain, Chili's. I wanted to know more about Nancy's sister. We had a great exchange and I learned more that I ever knew or wanted to know about breast cancer. What he told me that day, was pivotal in my thinking of society as a whole, and what role I could fill to make the world a bit better place to live. That information also scared the hell out of me, with the statistics that researchers developed in the 1990's. I do think of Norman's stories of Nancy and her sister, Susan, from time to time, and am amazed at the organizational leadership at Susan G. Komen and the Race for the Cure. Because of organizations, such as Nancy's sister's, we have better defined disease categories, treatments and protocols. As Hillary Rodem Clinton once said, it takes a village to raise a child. I believe it takes a village full of support and guidance, for breast cancer patients to lead normal lives again. And, that, includes hormone therapy and Tamoxifen.