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"Tamoxifen Road" - Support and Encouragement

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  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    From a pharmacology perspective, I would never split my Tamoxifen pills. Please get a lower dose pill. It is not advised to crush or redistribute in any way, this type of pill. There are protocols to follow, and with good reason. The efficacy and dosing has been studied and measured, to provide the majority the most benefit. I trust my MO, and it is important to have an MO that will assist you in being flexible. I mentor young prospective doctors, generally one year before medical school, and always stress flexibility and patient ownership of any type of treatment. Ownership is a powerful tool, but so is having the advice of someone with vast knowledge of cancer, namely your MO. There are ways of taking ownership of your own healthcare, including interviewing prospective doctors about their philosophy of medicine. Are they an all or nothing type of doctor, or someone that can live in a gray area? When it comes to my personal healthcare, there is no room for gray areas. I want to maximize the time that I spend taking these medicines and know that I have followed protocol for most expected outcome. That being said, I do not take 20mgs well, so I use 2 10's spread out over a couple of hours.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Misskb, it was my pleasure to start this thread. It was just....time. We need a place for optimism, hope and positive thinking to flourish. This is not a debate thread, it is a support thread for those who are using Tamoxifen or have completed therapeutic Tamoxifen therapy, to share ideas and encouragement.

  • dtad
    dtad Member Posts: 771
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    runor..so sorry you had troubling side effects on Tamoxifen 20 mg but are doing better on a smaller dose. You are right you will not get the ok from your MO, but QOL matters too. Right now there are no studies to back up the smaller dose but maybe there will be in the future. We all ned to speak up for better treatment options that are tolerated better. Maybe that is a smaller dose. You are also right that we have to be at peace with our decision. No matter what that might be. Good luck to all.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    These are the studies (see below) that my MO, whom I trust with my life after a bad experience with my first, gave me regarding low dose Tamoxifen. Like others have said they are smaller, but they are conclusive. There are over 400 studies in the works, currently, regarding Tamoxifen, dosage, uses, etc. In a few years we will know much more.

    Due to my co dxs and chronic illnesses, I was already disabled prior to Breast Cancer. My MO's plan was to start me at 5 and work up to 10, and stay there for 5 years if I could tolerate it. I could not. The 5 mg dropped my quality of life down to zilch. I was on it for 2 months this Spring.

    The important thing to remember about Tamoxifen is that everyone responds differently and even responds differently to the brands of the drug as well. There's actually a study proving that! :)

    Many women have no to little SEs on Tamoxifen, others have tremendous SEs. I was one of the unlucky ones. That being said, my journey will be different than yours. My advice is to research, to ask questions, and decide to do whatever you can live with in the future, no matter the outcome.

    This was the research I did before making my final decision: Any Early 40's Declining Tamoxifen? If you want to read how Tamoxifen works, its effects on immunology, how its metabolized, risks it carries, things doctors don't tell you...all backed up with studies, this is a good place to head. There is also a good thread, over many years, of people posting about their experiences on Tamoxifen: Bottle O' Tamoxifen

    Anyway, that's how I started out. I've had tons of experience since I was 13 being my own advocate. I knew I'm a zebra and get all the weird health things that could possibly go wrong. So I wanted to know what to expect. In hindsight, I should've trusted my gut and the info, but I had to try it, the not knowing was eating me alive.

    So, going in I knew that I was scared about Tamoxifen but more importantly I was also scared about METs. If METs happened in the future and I never tried Tamoxifen, I knew I would regret it. Now, after having seen what my life was like on Tamoxifen, I know that if I had fought and suffered on it for 5 years, and METs still happened, I would regret it since I would miss so much of my life NOW.

    One thing I will say, is please DO ask your MO or your PCP to monitor your liver enzyme values. My first MO did not tell me this, and most women I have talked to did not hear this from their doctors as well, but Tamoxifen does carry a 30-40% risk of Non-Alcoholic Fatty Liver Disease. It's important to prevent and that patients are monitored for this. That link takes you to my thread, to the page with the Liver info on it. Post is Dated Dec 12, 2018. I feel like anyone deciding on this hormone treatment should be aware of possible damage and risk to their liver. There is a BCO member, CanadaLiz who is awaiting a Liver Transplant because of this. :(


    image

    Please, as her story illustrates, at the very least, before starting Tamoxifen, insist on having a liver enzyme test run.

    (Reference post is written by CanadaLiz on 12/15/2018) https://community.breastcancer.org/forum/78/topics/868854?page=1#idx_29




    Here are some of the studies my MO provided me with:

    Impact of Tamoxifen Brand Switch On Side Effects And Patient Compliance

    https://www.ncbi.nlm.nih.gov/pubmed/27428472



    Trial Underway: Low Dose Tamoxifen in Reducing Breast Cancer Risk in Radiation Induced Surviors
    https://clinicaltrials.gov/ct2/show/NCT01196936


    Tamoxifen At 5mg Halves Recurrence Rate

    https://www.mdedge.com/obgyn/article/190618/breast-cancer/tamoxifen-5-mg-halves-recurrence-breast-intraepithelial-neoplasia


    Biologic Activity of Tamoxifen At Low Doses

    https://academic.oup.com/jnci/article/90/19/1461/9...


    Randomized Placebo Controlled Trial of Low-Dose Tamoxifen to Prevent Local and Contralateral Recurrence

    https://ascopubs.org/doi/full/10.1200/JCO.18.01779

  • runor
    runor Member Posts: 1,613
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    Spoonie - AWESOME post! Awesome.

    Dtad - my side effects are there, but do not impede my life overly much. Like millions of other women I take the pill and get on with life. It's just what we do.

    Michelleincornland - did someone show up here to debate? To suggest that we could do something different than what The White Coats tell us? You should find that person and punch them in the throat. My god. Debating. The nerve! They must have been raised in a barn. With livestock.

  • pupmom
    pupmom Member Posts: 1,032
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    Aspirin is a very dangerous drug. You can DIE from stomach bleeding and other problems! Should those with heart disease even take low dose Aspirin? IDK! Shocked

  • 41619Courage
    41619Courage Member Posts: 12
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    Michelle, Great advice. I will definitely be prepared to keep moving. Thank you! I'll talk with my MO about the lower dose 2x/day. I've learned with previous animal medications that certain pills/RX Should Not be split. That was on my mind about the Tamoxifen, thank you for confirming.


    Misskb, Reassuring to know. Thank you for the advice. I'll post progress.

    Have a wonderful day!

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Runor --> Glad to help. I believe knowledge is power and doctors are human....we have to be our own advocates and do our homework when able. :)


    41619 --> About pill splitting. I have 10 mg tablets, rxd by my MO, and directed by her and my pharmacist to split and take 5 mgs daily. I believe if there was an issue with taking split pills, they would have informed me. I have specifically asked my pharmacist and he said there was no issue. Best to ask your team and your pharmacist to confirm.

    Another way of looking at this is that Tamoxifen has a half-life of 5-7 days (see below & see pill splitting chart) If a person is splitting a 10 mg tablet, taking that specific half and the other half that day and the next, respectively, they are getting all 10 mgs dose well in under the half life. I do not split all my pills and put in a bottle, I split one every other day and take both halves concurrently. Maybe that makes better sense?


    In any case, check with your pharmacy, they are the ones to best advise you specifically. Wishing you the best. :)

    image
    https://online.epocrates.com/drugs/28707/tamoxifen/Pharmacology


    image


    https://www.medikredit.co.za/medifile/2009/e-aug-23-3-the%20appopriateness%20and%20risks%20of%20tablet%20splitting.pdf

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Hey, all my peeps on this thread, any great plans for today? It is really gorgeous where I live. I slept great last night and woke up at 5am to put the dogs out. It is so peaceful that early in the am, and they don't bark when it is early and quiet. Had a great session with a young medical student last night. My best advice for him, was to keep his life as simple as possible. While I thoroughly enjoyed my boat ride on the lake with my brother in law, and family, I would not want to live on the lake. I love being near water, and have a boat, but living on the lake is a full time job itself. The houses are mansions, and I would hate to be responsible for up keep and maintenance. We have been in our house for 25 years, and it is over 100 years old. My kids always wanted to build a big, new house.....my husband is a developer. I always said, "you can't buy great neighbors and this neighborhood, near a park." The point of my story is to focus on what matters, in the case of this thread and website, survivorship. There are alot of distractions, in our everyday lives and even on here. But, if we keep our eye on the prize of our health, we can get through these days on Tamoxifen Road.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    PupMom -- > Maybe I missed something or perhaps you mistakenly posted here instead of another thread? I'm confused about the aspirin comment. Could you elaborate? Thanks.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    @416....you can private message me any time, for clarification and support. It is so imperative to start these medications off slowly, in order to mitigate side effects.

  • meeko1452
    meeko1452 Member Posts: 10
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    When my breast surgeon first mentioned prophylactic Tamoxifen to me at the start of this journey in March, 2019, my initial gut reaction was "no way will I take it" based just on the increased stroke risk. My mother had early onset dementia, and up until now dementia has been the ONLY health problem I have been worried about developing as I age, and so an increased stroke risk terrified me. I wasn't thrilled about the other Tamoxifen side effects, of course, but the stroke risk was the biggest concern for me.

    However, as we did more testing, my diagnosis went from a papillary adenoma with atypia (my dx after my core biopsy) to extensive high grade DCIS without clear margins (my diagnosis after my lumpectomy) to invasive lobuloductal carcinoma Stage 1 (my diagnosis after my unilateral mastectomy). Of course, my attitude toward my breast cancer changed as my diagnosis became more and more "serious" and at this point I realize that I am going to live forever with a fear of recurrence over my head, and suddenly the Tamoxifen doesn't seem like such a bad idea.

    I have been taking Tamoxifen for about 10 days. MO wants me on 20mg daily, and I admit that I am quartering the pills at currently taking 5 my at night. I will increase to 10 mg daily in 2 days (I am aware of the problems with splitting non-scored pills, but I am doing it anyway). So far at my tiny dose, I don't feel like I am having significant SE. I've had a few nights of bad sleep, but that would happen sometimes before I took Tamoxifen, so I don't think I can blame the medicine.

    I am also doing the other things that I need to do to decrease my recurrence risk: 45 minutes of exercise 6 days a week, losing weight, and being mindful of what I eat (more cruciferous veggies, less meat, much less sugar). Of course, these are also the things that cut my risk of dementia...and heart disease...and diabetes...

    I cannot predict the future, and I cannot cut my risk of recurrence or mets down to zero, but the tamoxifen at least makes me feel like I am doing something. Good luck to all of us!



  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Meeko,some great perspective. The slower you go with the increase, the more time for your body to adjust. Just ask your MO for 5mgs and 10 mgs They should be able to work with you, to get to the therapeutic dose.

  • pupmom
    pupmom Member Posts: 1,032
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    Spoonie, my point was that we can all find potential negatives with any medication, including OTC ones like Aspirin. Same thing applies to Tamoxifen. Best wishes!

  • edj3
    edj3 Member Posts: 1,579
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    At the risk of derailing this excellent conversation, aspirin has some pretty bad side effects and almost certainly wouldn't be approved today by the FDA. Same with penicillin.

    I personally cannot take aspirin as I get microscopic gut bleeding which moves me from slightly anemic to all the way anemic.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Thanks for the clarification, Pupmom.

    Indeed, there are potential negatives with many medications. We just don't know until we try it out, all we have to go on is the manufactures risk warnings and the lists of SEs, and others experiences.

    The problem for me is that some of those problems/SEs for Tamoxifen can be irreversible &/or life-threatening and happen suddenly. ie stroke, blood clot damage, vision loss, liver failure, endometrial cancer, etc. I think we can all agree if a bottle of aspirin had this warning on it, most of us would take aspirin a whole lot differently:

    "Serious, life-threatening or fatal events associated with Nolvadex (Tamoxifen) in the risk reduction setting [women at high risk for cancer and women with DCIS] include endometrial cancer, uterine sarcoma, stroke, and pulmonary embolism."

    This post, my others, are not meant to scare anyone or dissuade anyone, simply to inform others and also to share my own experience in order to support and encourage others to look closely at any drugs they do take. :)

    Many MOs do not "bother" with this info straight forwardly, my first MO case in point. So it falls to the patients to pick up the slack. Many times that doesn't happen, unfortunately, at the patients potential detriment. Yes, the odds of these SEs happening to the average "Joe" or "Joanna" is low and rare, but HAS and DOES happen.

    I've learned the importance of being your own advocate through a long Spoonie life and many drs visits, seeing/living through their mistakes (we are all humans, even drs), SEs, and tests. That's why for me, it's important to add in each new med with much research, given my own health history and known factors, so I can make INFORMED decisions.

    I'm simply sharing the knowledge I've found in my own experience and research, in hopes that others can use it to help find their own path in this journey by what feels and seems best for them.

    That's all any of us can do. Best wishes to you as well. :)

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    @edj3, welcome to Tamoxifen Road. I don’t take aspirin products because of some side effects. Has your oncotype came back yet? Are you in radiation now, as your info has you doing it in 2020?

    Pupmom, great analogy

  • edj3
    edj3 Member Posts: 1,579
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    Heya, nope was a typo for when rads starts. I'm in it right now, and I'm all over the tamoxifen threads because I will have my own decision to make soon.

  • salamandra
    salamandra Member Posts: 745
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    I'm just starting my 4th brand of tamoxifen, hoping I can find one that doesn't have debilitating side effects. The fatigue is bad enough that I basically can't have a life outside of work. It takes all my energy to just stay above water with the work and keep my job. I'm single and live with just my cat. Having the mental and emotional energy to spend time with my friends and maybe even date and hopefully find a family, well, that's pretty important to me. And if I can't hack my job, there goes my health insurance and stability and who knows, maybe even home.

    I have my follow up with my MO in two weeks. I really hope she is now ready to have this conversation with me in a real way. I am scared of a recurrence, but I also want to be able to live while I'm alive.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Salamandra, what time do you take your meds? Can you ask your doctor for a lower dose of Tamoxifen made byTeva, distributed by Mayne, and work towards a goal of getting to a therapeutic dose?

  • LAmargarita
    LAmargarita Member Posts: 3
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    Spoonie,

    Thanks for sharing this information. My joint pain is not debilitating, however is not going away and I don't think I can be in physical therapy year round! :)

    Maybe there is a different way to still have my full dose and avoid the pain. Thanks for the reading list as I get ready for my next onco appointment. Cheers!

  • salamandra
    salamandra Member Posts: 745
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    Hey Michele,

    The Mayne/Teva one was actually the first one the pharmacy sent. I've also tried Mylan (which I found pretty similar to Teva), and Actavis (which was the worst for me because it also impacted my mood). Today I took the first Zydus.

    I tried taking it in evenings at first. But that messed up my sleep really badly so I switched to mornings.

    I will definitely be talking with my doc about a lower dose.

  • Mymomsgirl
    Mymomsgirl Member Posts: 95
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    I started my Tamoxifen journey almost 2 months ago, my first MO (which I later fired) wanted me to be done with radiation before starting which I think is good advice. I had done a lot of research about starting gradually and my second MO who only has BC patients was onboard. I wanted to start with 10 mg for a couple of weeks so she wrote me a prescription for 10 mg twice a day. I took 10 mg once a day for about 2 weeks in the evening and things were good. I then moved to 10 mg in the morning and the evening and had a few what I would call more warm flashes, verses hot flashes (I had hot flashes during IVF treatments, I definitely know what those are). I found that I would get them more when I went from not doing much to being active, I was getting them most at night when I would get up and use the rest room, just the walk to and from got my blood going enough that I would get really warm. After 2 weeks with the morning and evening use I went to 20 mg at night and after about a week, the hot flashes kicked in. After 10 days on 20 mg at night I went back to 10 in the morning and 10 in the evening and my SEs the hot flashes dropped off after about 3 days. My MO said if that is working then keep doing it. She is young and always looking for new directions for her patients. She actually said that she had a few ladies with bad hot flashes and she was thinking about having them back down to 10 mg a day for a couple of weeks and then try the morning/evening route.

    As for the other SEs, I've had a short fuse a few times, but it is not all the time. I'm wondering if it might just be a new form of PMS or something. Which leads to my cycles because I'm pre-menopausal. The first one was normal, of course I had only been on Tamoxifen for about 2 weeks so I would've already ovulated. The next round came close to on time, but it was more light spotting and then heavy spotting. So I'll wait and see what the next month brings before raising the flag about having my lining checked.

    So I would say so far so good on my end. I know that the SEs can be ever changing so we will see what comes next. The good news is with my Oncotype test the results showed that with Tamoxifen my reoccurance rate is 3% and without is 6% so if QOL goes down hill I feel good about quitting if I need too. Some might say why even take it with that low of a percentage, but my mom died after a reoccurance, so I'm going to give it the good old college try to not repeat history.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    Salmandra, get the Mayne/Teva in 10mgs only....not the 20s. See if that helps.

    Mymomsgirl, thank you for sharing your story. Girl, we have to learn through trial and error. I have 20mgs on hand, but do not take them....I do the 10mgs a couple of hours apart at night. Many MO's, in an effort to increase compliance, are becoming alot more flexible with anti hormonals. It is really important, in my educated (pharm) opinion, to adhere as closely as possible to the standard method of taking, which was observed through the studies. I can always tell (like right now) when it is time to take the Tamoxifen...I get little bone aches. So, off to cross that off of my 9pm list!!! Keep us posted. Hugs from the heartland..

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Hey Michelle - gotta a question for you. Am I understanding right that your Tamoxifen makes your bone aches go away? If so, that is awesome! Congrats to you for being a lucky contestant on the Wheel of Tamoxifen Land. LOL. :) If I'm wrong, please correct me.

    Salamandra --> I commend you on continuing to search for a brand of Tamox that may exist for you with little to no SEs. My fingers are crossed for you that this one is the magic one! I knew from other posts of yours that you were searching, but I didn't know that the search still continued. Kudos to you my friend. Please keep us posted on your MO appt. I'm curious to hear what she has to say. It sounds like you have done what any dr could ask of you in trying to get Tamoxifen to work for you, but I definitely agree, that at this point, they need to listen to you and give you next options to try (lower dose, ovarian suppression/arimadex, etc). Like you said, quality of life and being able to work is critical for you. Hang in there.


    LaMargarita - Happy to share. If you have questions about any of the info, feel free to ask here or a PM, whatever is easier. :) It's alot of info to take in, even for me at times, and I have a huge med background to leap from. I'm sorry about the pain you're experiencing. Hopefully when you see your MO next you will have some questions that they can answer to help you uncover what your magic rx is. Maybe taking your dose in smaller doses in am and pm may be helpful or maybe starting at a lower dose and working your way up over a period of weeks....I know these have worked well for other women. Wishing you some pain free days soon.

    MyMomsGirl --> You posted "So I would say so far so good on my end. I know that the SEs can be ever changing so we will see what comes next. The good news is with my Oncotype test the results showed that with Tamoxifen my reoccurance rate is 3% and without is 6% so if QOL goes down hill I feel good about quitting if I need too. Some might say why even take it with that low of a percentage, but my mom died after a reoccurrence, so I'm going to give it the good old college try to not repeat history."

    Just wanted to send you a hug. I'm sorry for the loss of your mother. It must be very scary to have lost her to a reoccurence and now be facing BC yourself. I'm glad that in your case if things get to rough you will feel comfortable discontinuing Tamox. I'm sure it's a little bit of relief in the back of your mind to have that "break in case of emergency" box. Thank you for sharing your experience. My fingers are crossed for you that your SEs will continue to minimal. Good luck.

    ------------

    For anyone experiencing hot flashes, I will say that Acupuncture was a life saver for me in that regard. And thankfully, somehow my Medicare covers it here in my state now. Color me surprised. So I was already seeing her for cancer care (ie Lymphedema, Fibrosis, Costochondritis) I asked her about the hot flashes after starting Tamoxifen and I had immediate relief for them. Mine were so bad, right off the bat, that in -35 F below 0 temps in MN during a rare Polar Vortex I was driving to PT with my windows open, no heat on, and sweating like I was on the beach in Cancun. They were insane. I was VERY glad to see them disappear! So if Hot Flashes are bad for you, give Acupuncture a chance.

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I have Tamoxifen withdrawals exactly every 24 hours. I could tell you what time it is, without a clock. I am a very intuitive person and go through major surgery with just one Tylenol after. My parents were a lot older when my sisters and I were born. We were raised in the woods, and grew all of our own food. We read anything we could get our hands on, including medical journals and books. We ended up with healthcare and research backgrounds.

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Interesting. How long have you been on Tamoxifen?

  • Michelle_in_cornland
    Michelle_in_cornland Member Posts: 1,233
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    I am in my 3rd year of Tamoxifen, and doing very well

  • Spoonie77
    Spoonie77 Member Posts: 532
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    Found a very interesting PDF tonight from Ontario Cancer Care that gives us a birds eye view of Tamoxifen from the MO stand point. Perhaps others would like to give a read?

    It's where this chart came from, for what to do when a patient is experiencing different SEs etc.

    Cancer Care Ontario

    image

    Which gives me pause, because I have Depression and Tamoxifen certainly progressed my Depression to new lows while on it, so much so that they needed to double my dosage last month. Again, things to be aware of --- eye changes, liver changes, increased calcium, etc. Things they don't tell you, but should. The more we know, the power we have to make the best decisions we can. :)

  • Spoonie77
    Spoonie77 Member Posts: 532
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    That's awesome Michelle that you are doing so well!!!! <high five> Hope that continues to be the case for you. Fingers crossed.

    I guess, I'm just trying to figure out how your body has withdrawals from the Tamoxifen though since the half life is 4-7 days and 14 days for the 2 different ingredients? Can you explain it a bit?