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Bottle o Tamoxifen

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Comments

  • lifelover
    lifelover Member Posts: 263
    edited January 2015

    Thanks KK5525 :) I am now down to 75g of Effexor a day. My side effects are minimal because my GP found a new non-addictive tranquilliser called Mirtazapine to help me with the side effects - if I don't take this drug then I get the horrible shooting lightening shocks through my brain (what it feels like). I am hopeful that in the next month I will have weaned myself off of the Effexor and then won't need the Mirtazapine. The Mirtazapine (probably called something else in the USA or other countries - Remeron or Remeronsoltab?) is not a benzodiazapene so is non-addictive. I can't take valium or a benzo because they make me depressed.

    I believe I will go back on the tamoxifen once I'm clear of the Effexor. At the moment though, I've had the flu and pneumonia for the past 3 weeks and I'm still recovering from the fatigue of all of that.

  • lala1
    lala1 Member Posts: 974
    edited January 2015

    Since I will be having a hysterectomy Jan 20th due to the love side effects of Tamoxifen, I was wondering if anyone has had surgery while on Tamoxifen and how long before did your doc ask you to stop, or did they at all? My gyn says 2 weeks before and 2 weeks after but MO says 1 week before only. I'm going to try the 2 weeks before and after and am wondering if anyone had their SE go away while off Tamoxifen and then not come back as strong? The nausea, bloating and burping are my most bothersome SEs and I've got my fingers crossed that either the hysterectomy or the break from Tamoxifen will help with those problems. Feeling like puking all the time really sucks!!

  • loral
    loral Member Posts: 818
    edited January 2015

    I just received this in an email....

    Breast cancer can remain dormant in non-breast tissues for decades before returning as stage IV disease. Perhaps surprisingly, the most aggressive forms of breast cancer (triple negative, inflammatory, HER2+) are less likely to recur than hormone receptor positive (ER+/PR+) disease after the first five years. The switch from a dormant to a proliferative state is not well understood. Now Princeton researchers have devised a computational model that appears to explain tumor dormancy. Their model assumes a natural contest between tumor promoting and tumor suppressing factors in the cancer cell or microtumor microenvironment. This competition results in a stalemate for a time in which the cancer either eventually wins or is eradicated. The model also predicts that if the number of actively dividing cells within the proliferative edge of a microtumor reaches a critical (but still relatively low) level, the dormant tumor has a high likelihood of resuming rapid growth. The implication is that cancer-promoting diet, lifestyle, and environmental exposures can play a role in triggering the switch that leads to metastasis and vice versa.

  • KBeee
    KBeee Member Posts: 695
    edited January 2015

    lala, My MO told me to stop Tamox 4 days before surgery. My PS insisted on 2 weeks. Neither would budge. I decided my immediate risk of a blood clot was greater than my distant increase in cancer risk from an extra 10 days off of the med. I stopped 2 weeks before and started back 4 days after. My symptoms (nausea, vomiting, heartburn) eased after I was off for about 10 days, but resumed a few days after restarting. After a year of nausea, vomiting, andreflux/heartburn, I finally saw a GI doc. He started me on Protonix and it has made a world of difference. I have an endoscopy in a couple weeks to make sure there is no damage. Maybe you could see a GI doc to help with your symptoms

  • jeanelle
    jeanelle Member Posts: 83
    edited January 2015

    Hi all! I'm hoping that you experts might be able to help me. I'm sure this has been asked before, but over 700 pages is a lot to go through. :)

    I have been on tamoxifen for a little over a month now. During that time, I have had an increase in hot flashes which the doctor told me was definitely a side effect. However, I have also noticed an increase in my gastric reflux (with none of the normal things helping) and in the last few days, incredibly awful charlie horses in my calves while I sleep. They are so bad that today I woke up screaming and writhing in pain. I spoke to my MO's office and they say these aren't common side effects of the tamoxifen.

    Have any of you experienced these and what did you do to help?

    Thanks for your help!

  • Gertrude
    Gertrude Member Posts: 22
    edited January 2015

    HI Janelle,

    I saw your post so I wanted to respond since I too have the charley horses.  I had never had them before taking tamoxifen.  They were horrible in the beginning and I would get panicked if I even felt my muscle start to tense.  I have been on tami for about 20 months now and they are much better.  Try to drink lots of water to keep hydrated and exercise if you can.  I'm horrible about this but I do know when I'm exercising it helps with the charley horses and also with fatigue which I battle from time to time because of tami.

    My oncologist said the same thing about it not being a side effect but I beg to differ. I had never had them before.

     


     

  • tangandchris
    tangandchris Member Posts: 934
    edited January 2015

    MO's seem to want to downplay the se's of Tamoxifen. It's annoying and frustrating!

  • Manu14
    Manu14 Member Posts: 36
    edited January 2015

    Janelle and Gertrude - I've been on tamoxifen for about16 months and had horrible nighttime charlie horses and cramps in my legs and feet. This was in spite of exercising daily and drinking lots of water. My MO's only suggestion was to try popping a Tums at bedtime. There was minimal improvement from a calcium supplement.

    Finally I did my own research. On several different internet sites I founds lists of drugs that tend to deplete the body of magnesium. Tamoxifen was on each list and one of the symptoms of low magnesium is muscle cramps. So I started taking a chelated magnesium pill right after dinner each night. After day 3 of doing this . . . what a difference! I've only had one bad leg cramp in the last six months.

    I truly think some MOs stick to information from old statistics on side effects and don't look closely at the patients sitting right in front of them. Either that or they are trying to minimize things so we don't quit taking the drugs. A more holistic approach would go a long way I think


  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    Jeanelle, I do not have the charley horses - I already take 2 chelated magnesium a day to prevent migraines. I would definitely try taking magnesium. (I took magnesium for leg cramps during pregnancy). I have had issues with reflux in the past; so, I can not say for certain that it is a SE of Tamoxifen. However, my reflux has returned, with the added bonus of nausea (definite SE of Tamox). My PCP seems to attribute its return to the Tamoxifen. My Onc seems to want to gloss over SE. As my husband pointed out, she has an ideal plan for treating my cancer, and she just wants to get those chemicals into me... SE are just a nuisance for her... I am on 2 Zantac (can't take prilosec due to trial drug - Tums did not touch it) at night (I take my other meds in morning). I still experience reflux, but less often. Your PCP should prescribe/recommend something to prevent damage. I hope that you find relief - maybe we just get accustomed to the SE over time?

  • jeanelle
    jeanelle Member Posts: 83
    edited January 2015

    Thanks to everyone for your advice! It is so frustrating to see on tons of sites on the web that these problems are side effects of the tamoxifen and have the MO tell me different. I'll try the magnesium for the charlie horses at night.

    Daisylover - I had gastric reflux before but had it under control and am very aware of what triggers it for me. I'm been taking Zantac when it gets bad at night.


  • bounce
    bounce Member Posts: 215
    edited January 2015

    tangandchris and all the other recent posters -

    MO's seem to want to downplay the se's of Tamoxifen. It's annoying and frustrating!

    Thank you so much for saying this.

    It really makes me feel better about myself and doubt myself less.


  • AussieTerry
    AussieTerry Member Posts: 4
    edited January 2015
    Started Tamoxifen 3 weeks ago. I thought I was going fine without any side effects but slowly my depression has become worse until this morning I was scared and so sad. I'm shaking and crying and not knowing what to do. Then I remembered I'm taking tamoxifen - could it be the reason for my uncontrolled depression?
  • macatacmv
    macatacmv Member Posts: 1,200
    edited January 2015

    aussieterry, yes, it can be the reason for your depression. Talk to a doc right away. Get help! Do you have a mental health consultant? I started on Arimidex and sank into a severe depression. So I ended up on an antidepressant, which I have continued to take tho I switched to tami. I've been on tamoxifen for about a year and a half. I work very closely with my PCP to counteract the ses. My MO isn't much help. I worked hard on finding a "team" of professionals to help me through tx. I have acupuncture, massage, and do yoga. It's taken a while but I am doing a lot better lately. I still have low energy and lots of fatigue.

    So, terry, I notice that you haven't posted much on this site. Are you new here? There are lots of wonderful and much wiser women than me. Keep searching for help and answers.

  • lala1
    lala1 Member Posts: 974
    edited January 2015

    Jeanelle--Tamoxifen can definitely cause your problems! Lots of water and exercise did help me but not enough so I went to a holistic doctor who used to treat breast cancer patients. He put me on turmeric (Gaia brand being far superior he said) and ginger (any brand) starting with 1 500mg capsule of each a day plus 2 SloMag (slow release magnesium) tablets a day. He said start there and increase if needed, which I didn't. Those 3 things took away 95% of my joint/muscle pain!! I wasn't sure if it was the supplements or time (I've been on Tamoxifen for 2 years) until I had to quit everything except the magnesium due to my upcoming hysterectomy Jan 20th. I've been off the Tamoxifen, ginger and turmeric for 4 days and already feel some muscle/joint pain coming back. Luckily I'm off the Tamoxifen too or I think it would be worse. Turmeric and ginger are anti-inflammatories which are very good for arthritis. They also thin your blood which counteracts Tamoxifen's ability to cause blood clots. So win-win all around!!

    Also, for the last year I've been dealing with nausea, bloating and burping. I don't have acid relux and don't actually vomit, just all the other crap that comes with Tamoxifen! One thing I've found that helps tremendously are probiotics. I actually just buy AccuFlora from Target or Walmart and take 1 tablet morning and night which is their half dose. It works for me. AccuFlora got really good reviews on Amazon. Yogurt every day will help too as long as you eat the stuff with all the probitics in it.

    If you try any of these things, give it plenty of time to work. The Tamoxifen is pretty strong stuff and I think it takes a while for some of these supplements to really kick in. Hope this helps!!

  • lyzzysmom
    lyzzysmom Member Posts: 285
    edited January 2015

    My MO said up front that I may get pain in my calves as an SE which i didn't but taking a break due to other side effects at the moment.

  • KBeee
    KBeee Member Posts: 695
    edited January 2015

    Jeanelle, Other than during chemo, I never had heartburn or reflux...even when pregnant. Tamoxifen caused horrible reflux, heartburn and nausea. After my MO doing nothing for about a year, I finally went to my family doc who referred me to a GI doc. In addition to Zantac and Tums, I am on Protonix, which has helped a lot. For soem reason I could not tolerate Omeprazole, but I can tolerate Protonix. He is doing an endoscopy in a few weeks to make sure there isn't any damage occurring, since I'm going to be on this drug for years to come. I feel about a thousand times better on the Protonix. The Zantac and Tums didn't touch it!

  • lifelover
    lifelover Member Posts: 263
    edited January 2015

    Hi Loral and thank you for your post. I agree with the statement that " . . . promoting diet, lifestyle, and environmental exposures can play a role in triggering the switch that leads to metastasis and vice versa." To that end, I have stopped drinking alcohol and now I'm working on stopping sugar. Oh yeah, I also would like to get my butt moving and do some exercise :) One thing that I do that I believe will keep those cancer cells away is love my life - I am so passionate about my teaching and it makes a huge difference in my life as I help others.

  • Sofiejo
    Sofiejo Member Posts: 3
    edited January 2015

    Hi everyone,

    I started Tamoxifen in July after much resistance. I have heard about so many of the side effects and didn't want to chance them since I am a middle school teacher and put up with over 100 hormone issues a day with my students alone! I told my classes that if they see me head to the door, just get out of my way and don't kill each other. I had some issues with diarehea in the beginning and eating Greek yogurt seems to help. I am always hot, so I have to choose what I wear very carefully. I live in the Midwest and am freezing my husband out of the house! Our house temp is never above 64. I have gained close to 10 lbs now, but I really wasn't being very careful about what I ate since I finished rads in September. I would definitely recommend asking your oncologist for Effexor. It has made a big difference in my life. Not sure I could go to work without it. I started low but upped it to 75. Flashes are minimal and I am starting to sleep at night. Sorry to ramble, but I just wanted to let everyone know that after 6 months and lots of initial resistance, I am doing okay! Take care everyone and hugs to you newbies

  • Sofiejo
    Sofiejo Member Posts: 3
    edited January 2015

    Have your oncologist write you a script for Effexor. It works wonders

  • juliecc
    juliecc Member Posts: 4,360
    edited January 2015

    I have been on Tamoxifen since 4/4/14 and things are so much better than in the beginning. For the first 2 months, I had many hot flashes and also vertigo when tilting my head, geting in and out of bed, etc. I was diagnosed in February and by November, I had gained 25 pounds. That's a lot! I have to admit I ate a lot of comfort foods and and had a lot of sofa time. I also had a lot of fatigue.

    In November I got serious about trying to get the weight off. I did low carbing which has always worked in the past and I didn't lose a single pound. I was so discouraged. So in December I got stricter with the low carbing and cut out dairy. It's like Atkins with no cheese or butter. I just eat eggs, veggies, salad with dressing, fish, meat, chicken. I eat tuna and mayo several times per week. I'll probably die of mercury poisoning instead. I am down 10 pounds in a month from making this change.

    I have never had to be this strict to lose weight. I don't know if it's my increasing age or the tamoxifen or what. I'm guessing it's the tamoxifen. Still, my energy level is improving and I don't get hot flashes anymore. Maybe that will change when summer comes! A few months ago I had trigger thumb but that has subsided, too. I just want you ladies to know that if you are having side effects, they might get better for you if you give it time. Good luck to all of you.

  • davida58
    davida58 Member Posts: 2
    edited January 2015

    Hi everyone!!

    I presumably start tamoxifen later this week when I see MO and I am really reluctant to start it.

    "MO's seem to want to downplay the se's of Tamoxifen. It's annoying and frustrating!"

    It's not just MO's that downplay the se's. I have multiple drug allergies and contraindications and medical issues, and am on multiple medications to address those other issues in addition to supplements, etc.

    So I go by the oncology pharmacy and request information on Tamoxifen. MO has determined with my osteoporosis that it is my only option - I agree with that assessment. Plus he is going to start on half the dose to see if I can even tolerate it.

    The oncology pharmacy printout was "left wanting". Pretty much watered down "warm fuzzy". I go my my regular pharmacy and request the same - which had a lot more information on side effects. Not reassuring at all from a confidence perspective.

    Those of you experiencing GERD, I am already on two meds just to keep my GERD of 20 years under control. Oh joy - so lets add a med that some of you have experienced results in GERD.

    While the positive of Tamoxifen is that it does help bone mass (I also have osteoporosis), the down side is hypercalcemia is a listed possible issue. Well, my parathyroid glands are failing. They have a role in regulation of calcium. I have to supplement calcium because of that issue. So I have concerns regarding that.

    One of you posted about Turmeric which I am already taking relative to inflammation secondary to autoimmune issues. I am also already on Magnesium supplement

    Also posted was drinking lots of water. Well I drink enough water daily to float a ship due to Sjogrens already

    One side effect is headaches. Oh that doesn't bode well. I had not been on hrt the past 15 years post total hysterectomy as the estrogen triggered horrendous migraines. I remain on 3 meds just to keep those under control.

    I am really on the fence about starting this drug. I get it that it is a generally accepted BC treatment protocol. But part of the risk vs benefit is, in my view, consideration of its impact on other medical conditions.

    Thankfully I see my rheumatologist before I see MO. But I really have misgivings about starting Tamoxifen.

    The oncology center I go to does not offer integrative medicine. That would be a better option for me. Even tho Tamoxifen info I got from my regular pharmacy clearly states if allergic to any of the ingredients, one should not take it. Only nowhere is listed ALL of the ingredients and I've been searching for two weeks for the complete clinical pharmacology to include ANY additives. I presume this med has been around so long that the full list of ingredients is no longer available (to include binders, any preservatives etc)

    So it will be an interesting discussion with MO this upcoming week. At least MO is going to start on 1/2 the usual dose, but that is of little comfort when in recent weeks headaches are flaring, BP is getting wacky again, thyroid levels are out of wack, etc, etc. Plus just started on another med to control asthma and I think I am going to delay MO's addition of Tamoxifen for 30 days. Best practice with me is no more than one med change in 30 days. Mainly as if a problem develops, that way we know WHICH med or dose change could be the culprit.

  • jeanelle
    jeanelle Member Posts: 83
    edited January 2015

    I just want to thank all of you that recommend the magnesium for the muscle cramps. Even after just 1 day of taking it the cramps got better. I've been taking 250 mg of magnesium twice a day. Also the first day I added a soak in the tub with some scented epson salts. I didn't have the charley horses in the middle of the night and the mild cramping I have had during the day is pretty much gone too! THANK YOU SO MUCH!

    I also have started on taking my Zantac and need to get out and get some omperazole to control the reflux and I'll be golden.

  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    Jeanelle, so glad that you have gotten some relief with the magnesium! I am finding that over time the Zantac has really started to help my reflux as well. My PCP has me taking 2 (75mg) in the evening. As I mentioned, I can not take my usual Prilosec due to a trial drug that I am on - hopefully, you will get full relief when you start that! Stay strong.

  • oceansky
    oceansky Member Posts: 77
    edited February 2015

    Hi all,

    Had a BMX and immediate implants in late October and waited until the day after Christmas to start the Tamoxifen. It's causing extreme fatigue. So much so that I can't even hold a conversation...Just sends me to bed. Am wondering if anyone else has experienced this?

    I have some serious autoimmune issues and don't tolerate a lot of meds but the fatigue is a deal breaker. Am curious if others have experienced this?

    Thanks for sharing...

  • Manu14
    Manu14 Member Posts: 36
    edited January 2015

    davida58- So sorry to read about all your complications with medications. You can find out all the active plus inactive ingredients of any of the meds if you go to the website dailymed.nim.nih.gov.


  • daisylover
    daisylover Member Posts: 173
    edited January 2015

    FYI - I believe that the inactive ingredients might vary by manufacturer of the Tamoxifen (I have read that Teva and Wilson Tamox pills cause different side effects for some individuals on BCO. I have no personal experience, though - my pharmacy always fills my prescription with Wilson.)

  • katcar0001
    katcar0001 Member Posts: 321
    edited January 2015

    Just a quick note about Turmeric/Curcumin. I was taking it but had to stop once I started on Tamoxifen. Curcumin inhibits the enzyme required to metabolize tamoxifen. There is plenty of literature out there about this on the internet and someone on this board (can't remember who) ran into the problem. Her absorption was reduced by 50%. When she went off Curcumin, her absorption went up. Here is a link to one study: http://www.ncbi.nlm.nih.gov/pubmed/22512082


  • yikes1
    yikes1 Member Posts: 15
    edited January 2015

    katcar0001,

    I know this was on here someplace previously, but, how is absorption of Tamozifen measured in our bodies?

    Is it a blood test? I am now wondering if this is something I should be doing.


  • CAS4
    CAS4 Member Posts: 16
    edited January 2015

    Kbeeee I am on - well going into- day three on Tamox- coincidentally I can't sleep and it's night number two. Who knows. Effexor is at 75 and going well. It's like a new day of questions every day- so be it. I'm on Tamox and glad to be.....for now

  • CAS4
    CAS4 Member Posts: 16
    edited January 2015

    no posts since October ? Did everyone stop having side effects??

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