Bringing in 2014 with Tamoxifen!

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  • corpor
    corpor Member Posts: 56
    edited January 2014

    So a question for you all-

    BMX and reconstruction on December 3rd.  Lucky me got my period December 5th, cause the only thing that could have made that experience more fun was to deal with cramps, pads and tampons too!  Bawling

    But now, no period since then.  No chemo or radiation, but stated tamoxifen Dec 28th.  I'm not sure whether to just wait this out or if this is a cause for concern.

    Thanks!

    corpor

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited January 2014

    Corpor,  My understanding is that we won't get periods with tamoxifen!  I had my last period in September, a couple of weeks after I started TC chemo.  I started tamoxifen on Jan 2, and no period yet. 

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  • levassel
    levassel Member Posts: 267
    edited January 2014

    Hi ladies.  First post for me on this topic.  I started tamoxafin on nov 20.  Had a few achy stops where oddly enough I had previous injuries.  But that was it.  Then 3 nights ago I starting having night sweats....soaked jammies and sheets....very yucky!

    As far as periods go I'm still as regular as ever.  Be nice not to have any though...lol

    Laurie

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  • JWoo
    JWoo Member Posts: 1,171
    edited January 2014

    Ladies-

    I just wanted to make a note about the tumeric for
    joint pain- careful if you are a vegetarian like me. I ordered Gaia
    herbs Tumeric Supreme- the capsules are soy. o.0 I didn't even think
    about that happening as most veg caps are corn starch based. So, make
    sure you are asking about what your capsules are made of and check the
    inactive ingredients very carefully on everything.

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  • Monis
    Monis Member Posts: 472
    edited January 2014

    My oncologist told me that Tamoxifen may cause menopause symptoms like hot flashes, mood swings, etc., but I would still get my periods.  They may become irregular though.  I haven't been on it long enough (only 1 1/2 mo.) to see any new pattern emerging, but so far I'm still getting them regularly.

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  • ycats70
    ycats70 Member Posts: 36
    edited January 2014

    JWoo, not to be a nay-sayer, but I have been trying to figure out which supplements are okay to take with Tamoxifen.  There has been conflicting info on a few, including turmeric/curcumin.  Some research shows it actually helps prevent our cells from becoming resistant to tamoxifen (here's one study on that - http://www.ncbi.nlm.nih.gov/pubmed/23299550), which is great.  But others have shown that it may inhibit the CYP450 enzyme system which includes CYP2D6 that we may need to properly metabolize tamoxifen (here's one study on that http://www.ncbi.nlm.nih.gov/pubmed/22512082).  Because of the conflicting research I opted to not take turmeric while on Tamoxifen.  Not saying I'm doing the right thing, but just food for thought...

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  • wyo
    wyo Member Posts: 541
    edited January 2014

    Saw my MO on Dec 6th- she wanted to do blood tests to see if I was in menopause- told her not to bother I had my period late Nov and still going strong as we speak....Started Tamoxifen Dec 6th. Got a period in december, regular as "rain" (Calif joke).  I should have gotten one for January sometime around last weekend- nothing yet so who knows.  I was getting a few hot flashes and some irregularity before starting. I would be thrilled to never get one again but will believe it when I see it sustained for 3 months or longer. 

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  • Kruise
    Kruise Member Posts: 330
    edited January 2014

    ycats70 - I wouldn't worry about the fact you aren't getting any side effects after a week. My hot flashes etc took about 3 plus weeks to kick in - and besides them and a few aches and pains too (but hard to know if that is really related to tamoxifen or just this poor ol' tired body 😜 there hasn't really been anything. I do worry about blood clots - especially when my legs ache - and did buy some baby aspirin to take but haven't started yet. 

    I have an appointment with my naturopath/herbalist lady tomorrow and I will get her to muscle test me for a few of those extra supplements - plus pick her brains about ones like turmeric. 

    I haven't had a period since about April last year. I started chemo (AC) on about day 3 of my normally 5 day period and instantly it stopped and then about 8 weeks later a random one day type thing and that was it. I did suffer horrendous night sweats and hot flashes with the chemo tho so I think my body has been well and truly pushed over the edge into menopause land. My onc did say there is still a chance I could start up again which is why Tamox is being used - so I think it can still be normal to have your period. He did say it's important not to get pregnant while on it - but I really think my body is not producing eggs or anything remotely along the lines of fertility - so I have not used any contraception. I know - someone is going to slap me aren't they!! Lol. I had a Mirena before getting bc and just know it contributed to it! 

    Anyway - changing the subject I need a diet/motivational buddy - exercise food etc - so if you are keen to start February off better than January and need support too - then email me on Kruise21@gmail.com.

    Love to all x

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  • lmac101
    lmac101 Member Posts: 6
    edited January 2014

    Good Morning Ladies - Started Tamoxifen one week ago and so far so good.  In fact, I think I am sleeping better at night but we will see how long that will last.  So happy to be done with chemo and rads and less dr visits.  Keep you informed.  And yes 2014 will be a better year for a new healthy us.

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  • ycats70
    ycats70 Member Posts: 36
    edited January 2014

    Thanks Kruise - that makes me feel a lot better.  The one SE I have started is that I have been having TERRIBLE itchy hives the past few days - pretty sure it's the tamoxifen.  I had the same reaction except more severe with taxotere.  Hoping my body will adjust.  I also had horrendous hot flashes and night sweats while on chemo (for the few months it put me into menopause) but they subsided when my period came back.  I was also planning to start taking a daily baby aspirin to help with blood clots, but my MO told me it doesn't help.  That seems weird to me because I see so many people who do it!  I I might do it anyway just in case .

    I would be SO interested to hear what your herbalist has to say about turmeric while on tamoxifen.  Another one is resveratrol - good because might help re-sensitive cells that have become tamoxifen-resistant, but bad because in concentrated amounts might increase rate of cancer-cell proliferation.  I sure wish it could all be more black and white.

    lmac101, I have noticed I'm sleeping a lot better, too!

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  • Lav
    Lav Member Posts: 65
    edited January 2014

    Ycats dont worry the SE will set in.  My first week I was so happy nò side effect then weekly Id devel9p one of d different side effects.  Infact my hot flashes started the 2nd week and dissapeared round sbout the 3rd week so its strange.  Bone pain, fatigue, and mood swings are sometimes bad sometimes manageable.  So dont worry yet if  i were you.

    Kanam I had a similar case. ONCOTYPE was 13 and I dint have to do chemo.  Hats off to all you ladies that went thru chemo.  I feel like Ive aged on so much with just surgery rads and tamox and chemos the worst of it.   

    I started my exercise this wèek Lisap and Kruise.  50 minites on d treadmill what I cant seem to stop are hunger pangs!  Im hungry all the time and d more I tell myself sugar or carbs or licor is not good( I have a cup of wibe twice a week)  the more. I just want it!  Thats one thing  i need to get a hold off my self control and discipline on my food intake.  

    Good luck to the new beginners.  Hope it all goes well with you.  And Kruise the sex drive sucks big time!

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  • KatiAK
    KatiAK Member Posts: 138
    edited January 2014

    Did my bone scan today even though my back pain has subsided a great deal.  Now we wait for the results. Hopefully tomorrow and hopefully negative.

    I developed hot flashes during chemo and haven't had a period since my first infusion.  I still get hot flashes and mood swings but being 6 weeks into this they seem to have mellowed.  A couple during the day and a couple at night.  The depression has also lifted a little as the back pain has eased.

    I've been trying to walk my dogs a mile a day.  I was good at lifting weights but with my back issues it went by the wayside. I need to ease back into that.  So Kruise I'm with you on having comradery for working out and eating right.  I'm hoping y'all will share healthy food ideas too!

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  • kaydeesmiles
    kaydeesmiles Member Posts: 209
    edited January 2014

    Hello everyone - another relative newby to t-town here.

    I started tamoxifen in mid-December but the se's were so bad I stopped for a couple of weeks then picked back up. Have been taking every day since. Hot flashes, fatigue and joint pain are my particular tamox trifecta. My onc prescribed effexor and that in itself is depressing. It seems like one pill leads to two pills leads to three and on and on. I hang out sometimes in the treating bc naturally thread and really wish I had the courage to go that route. But just to scared right now. I am really interested in the 10 vs. 20 mg. of tamoxifen debate though. Unfortunately it's difficult to find hard numbers on it. So until then I guess it's the standard 20 mg for me. I'm also really interested in the turmeric question.

    I have my first gyno appointment since starting the tamoxifen coming up. I'm assuming they'll measure the thickness of the lining of my uterus - among other calculations? Did anyone else have hormone levels tested by the gynos?

    So glad you all have been hashing some of this stuff out. Kruise, thanks so much for the thread.

    Kay

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  • Lav
    Lav Member Posts: 65
    edited February 2014

    Good luck KatiaK!  Praying all goes well with your test results.  I did my 6 months post surgery tests yesterday.  Bloodworks along with mamo and ultrasound.  My blood work results seem fine except for my uric acid which seems a little high.  Waiting on my mamo and ultrasound results which shld be ready next week.  Have a great weekend everyone!

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  • KatiAK
    KatiAK Member Posts: 138
    edited February 2014

    Well, the advantage to working for my primary care provider is we can call radiation and get test results without waiting for a doctor.  "No nuclear evidence of metastatic bone disease" YAY!  So we'll find ways to cope with the back pain (it's gotten easier).  At least it's not cancer!

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  • Kruise
    Kruise Member Posts: 330
    edited February 2014

    Fantastic KatiAK!!! What a relief for you - absolutely Yay, Yay, Yay!!!! Yes now time to work out some plans for getting that back pain under control so you can really enjoy life! So happy for you that all is well. 

    Welcome kaydeesmiles. I am so hearing you when you say you wish you had the courage to do it totally natural - I feel like that too. I also know because of my Mum's experience that you only get oneshot to do all that you can - so I've taken everything going. I do look at it from a mind, body, spirit perspective though. Everything we can do to help - the better. No I haven't been to gyno yet but am due to get smear done so could go soon and have a chat about everything. It's a good idea. 

    So I went to see my naturopath/medicinal herbalist lady on Friday and it went well. All the detox stuff we have been working on since finishing chemo is now paying off as I tested up good now on that side of things. YCats - I have been taking resveratrol for the past two months under her care. I am still testing up low and needing this plus another product called Mitolift which is a nutritional supplement which targets and helps lift cellular energy. So I talked to her about resveratrol pros and cons and tumeric etc. Basically she told me that is why you get 'tested' for these things because it either tests up or it doesn't and also with resveratrol - it is often only a short term requirement. She told me about a patient she had who had stomach cancer and the medical professionals operated to remove the tumour but then were unable to offer any other treatments because of type or whatever so he came to her. He tested very low for resveratrol and was on about 3 tablets a day (I'm only on one 200mg) for about 6 months and then he didn't test up for it any more. He is still ok today too :-)

    I went to see her before I had chemo and after my surgery and I tested up for tumeric then plus a couple of other anti cancer fighting - so she actually recommended to me that I do the chemo as she said to me that my body obviously wasn't on top of the cancer at that stage and having chemo should fix all that and she would just support my immune system as best she could through treatment. I would have to stop supplements 2 days before chemo and 5 days after on AC and just on the day only when having taxol.

    I don't test up for tumeric now but have a gastro detox drink that had a small amount in it along with spirulina etc and that's probably enough for me at the mo. So my recommendation is instead of trying to guess amounts of what you may or may not need - find yourselves a reputable naturopath and go get tested out. It was honestly the best thing I ever did for myself. 

    So back to the diet stuff - I have tested up again for the 'No Sugar' diet. I started this for about 4 weeks in December but then Christmas happened etc. So I've launched into that again (one day down and I already slightly cheated because I had a beer) and all I can say is it's really hard because sugar is in so much stuff. She has told me that what my body probably is saying it needs is just no processed stuff. Totally natural whole foods. So it was fresh fish & salad for dinner last night. I need to lose about 20kg!!! Lav - you'll also be pleased to know I went with my partner Tim on a 45 minute bush walk which included steps and uphill parts! So I'm sure the weight is just falling off me now...lol  (Dreams are free.........)

    Anyway - off to visit our new niece today. It's a 2 hour drive away - but at least sitting in the car I won't get to be tempted by the fridge or pantry :-). Her name is Amelia and she is nearly one month old and we haven't met her yet - only photos - so really looking forward to a cuddle. They grow so quick that I told Tim we need to go see her while she is still small. It's Tim's brother and wife's first babe. 

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  • ycats70
    ycats70 Member Posts: 36
    edited February 2014

    Thanks for the update Kruise - guess my next set of research will be how to find a good naturopath in my area!

    Have a wonderful visit with your new niece - isn't a baby snuggle the best?  We have a new nephew in our family who was born last August.  I couldn't be around him much in the beginning because that was when I started chemo and had to be so careful about catching anything, and he hadn't had his immunizations yet, etc.  But I'll tell you once I was able to get my hands on him in November, there is no better pick-me-up.  Hope you get to cuddle to your heart's content!

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  • DawnMik
    DawnMik Member Posts: 21
    edited February 2014

    Hello all,   sorry I haven't posted in a while. I have been diligently reading everyone's post each night on my phone while I'm trying to fall asleep.  I sympathize with so many of you - I've been on tamxifen for about a month.  I have gained about 20 pounds...... my doctor says this could be more of my body's reaction to being done with the chemo then from the tamoxifen.  I did lose 70 lbs during chemo.   I just don't want to gain it all back!  I'm still having hot flashes, mood swings and crying fits at the worst/strangest of times.  The last one was in the grocery store parking lot while my sister was packing the bags into the car!  Geez!  I'm taking fluoxetine (prozac) which seems to help somewhat - was taking it before all of this happened.  Also taking a few new drugs for the neuropathy I'm dealing with as a result of the chemo.   I seem to be okay during the day but as night falls I get very sad and depressed.  Is that happening to anyone else?   I'm so glad your all here so we can help each other.  Thanks for listening!

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  • juneping
    juneping Member Posts: 1,594
    edited February 2014

    hi,

    i am also new in town. starting my first dose of T tonight. hopefully the se won't be bad.

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2014

    DawnMik - -  Sorry to hear about your reaction.  You had a tough chemo regemin so its no surprise you are still reacting.  I switched from Zoloft to 37.5 mg of Effector when I started Tamoxifen at the beginning of January, and I felt that it gave me a really positive boost in my mood.  I was so depressed all of December... after chemo ended and I had an axillary lymph node dissection.  That was the worst month of this whole cancer experience for me, but I'm happy to be feeling better now and I hope you do too.  I went to the Cancer Center today to have my port flushed, though, and being back there made me weepy - - thinking about going through chemo and missing the nice nurses!!!!

    I have actually had trouble keeping my weight up since I started tamoxifen.  Maybe it was the Effexor too.. but I lost 10 pounds almost immediately.  Unlike you, I gained weight during chemo.. So I guess all of our bodies react in different ways to all this treatment and drugs.

    I just started having "warm flashes" when I am about to fall asleep and then a few times throughout the night.  Today I had my first one during the day.  They are not terrible, but its weird.  

    Take care!  We're all on an emotional rollercoaster with BC!

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  • DawnMik
    DawnMik Member Posts: 21
    edited February 2014

    Thank you runningfromcancer for your words of encouragement.  Welcome juneping!  So I'm wondering has anyone who went into menopause from the chemo gotten their period back once chemo stopped?     I had one period once chemo started and then haven't had one since.( A silver lining of chemo!!!) I'm now 9 months without a period but I've been talking to some woman who told me that their periods returned.   Has this happened to anyone here?   I was under the impression that the tamoxifen lowered estrogen and thereby stopped periods from returning.  Anyone? Thanks!

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  • MyraVH
    MyraVH Member Posts: 23
    edited February 2014

    Hello everyone. Just read some of the posts on this last page. Curious
    to find out who else is having any muscle and joint aches and soreness. I
    started my Tamoxifen 1/24/14 and since I last saw my oncologist 1/20/14
    who ordered me to go out and walk everyday to eliminate fatigue which I
    complained about that it was taking me a long time to bounce back after
    last chemo 12/30/13. So since then, I've been diligent about my
    exercise/yoga/walking (increased my miles every time) and last 2/1/14, I
    started indoor rock climbing again (last time was in Oct 2013 just
    before I went for my mastectomy). Fatigue went away and I thought the
    aches/soreness are due to the exercises/walking until I remembered
    yesterday about Tamoxifen's side effects. I want to know from any of our
    ladies here, if they have/had it, how long this will last. I have to
    drag myself to exercise/walk and eager to regain my strength but the
    aches/soreness slows me down. Definitely having the hot flashes but I
    can tolerate that.

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  • ycats70
    ycats70 Member Posts: 36
    edited February 2014

    DawnMik, yep, unfortunately my periods returned less than 3 months after finishing chemo.  I read that it only happens in 10% of women over the age of 40 - lucky me (NOT!).  I just started tamoxifen 2 weeks ago so we are waiting to see if that will help them go away again - if not I will be looking at some kind of ovary suppression (Lupron/Zoladex) in addition to tamoxifen.  I asked my MO why tamoxifen would keep our periods away, since it doesn't suppress our ovaries, it merely blocks estrogen from attaching to estrogen-receptors on our cells.  Her reply was that we actually have estrogen receptors on our ovaries, so somehow that interferes with our periods.

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  • Lav
    Lav Member Posts: 65
    edited February 2014

    Hello everyone just when I was getting the hang of tamox I got another complication. Did my post 6 months test and everything turned out good. No reccurence and blood works were better than during radiation.  A week after I get really sick with a bad cough and high fever.  Went to my doc thinkong its jist my asthma been working out on d eleptical alot .  And guess what H1N1 virus!  It seems that my immine system is really low to think I dint even go thru chemo and theres been no breakout locally but yet this is what the test results show me.  So Im sort of quarantined to my room and my daughter and husband arent allowed close to me.  Its like  i just start to slowly regain my strength and workout routine and  i have to go back down d ladder of feeling sick.  The combination of tamiflu and tamox has made d hot flashes like a sauna cabin!  I wake up all drenched in sweat and have to change my clothes too!  Been taking all d necessary vitamins to boost my immune system my Ldl which is d good cholesterol is hifh which means I am eating quiet alot of fruits and veggies and yet.....dont know when I can go back to being normal.

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  • music67
    music67 Member Posts: 11
    edited February 2014

    hello, Tamoxifen sisters

     jump in and here is my personal experience with tamoxifen.

    started tamoxifen on early Oct. 2013 after finished chemo while still having rads. first week, body swollen, nauseous, heart pumping like crazy, etc.....called MO, stopped one week then restarted again, she is smart, it got so much better! but still have many side effects: stiffness, heavy legs, slightly ankles swollen, low back pain, some times headache, light dizziness, vision changing, hot flashes, insomnia, etc.....was so depressed and wondering how  can I take this for years? but as time passing by, the stiffness, heavy legs, swollen ankles, low back pain are all almost gone. here are some my experiences that helped me to relieve the SE:

    switch the time of taking meds --- I switched from bed time to morning, it made significant improve.

    exercise helps relieve fatigue, hot flashes, pain. but I found running makes my low back and hips sore, slow walking and climbing stairs make me feel so good.

    My diet does make difference, I eat more fruits, vegs, and yums, etc natural food, feel so good. also found calcium, vitamin D, multivitamins make me feel more energetic. maybe I didn't get enough from my diet.

    low the room temp. helps me control hot flushed. also I found if I am busy and concentrate on something, I don't get hot flushes at all. also no turtle neck clothes, wear cotton clothes, wear more layers instead a thick one because its easy to manage if get hot flushes.

    control my mood helps sleep, I try read something make me peaceful to go to sleep, it helps a lot. it also helps control hot flushes. I found every time my mood swings I got more hot flushes.

    I just pay more attention to myself to see what makes me feel better and what makes me worse, then adjust it. hope these information is useful for someone.

    best wished to all

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  • SheilaB330
    SheilaB330 Member Posts: 73
    edited February 2014

    i had my last radiation Jan 7 and started Tamoxifen Feb 1, 2014. 20 mg pill at night. Today a month out from radiation. 7 days on Tamoxifen. Have been having hot flashes mostly in afternoon and night. Post menopause. Having nausea - was retching during dinner. Had taken a warm/hot bath. 2 hours later just ate some rice. Have gotten headaches but since I had migraines before menopause, these are merely annoying. Took a leftover antinausea pill tonight. Might try to make a protein drink for myself. Have heard some take Tamoxifen in 10 mg dose with morning and evening meal. Plan is to stay on it for a couple of years then switch over to an Aromatase Inhibitor. Think on HT for 7-10 years. Felt so grateful while going through chemo and radiation and now feel peevish to have any side effects.  "I'm done!" Lymphedema is acting up when I cook or use computer or groom my horse. Feel like I paid my SE duty and just am tired of more SE especially when this is long term treatment. Is this the rest of my life? Meditation does help and I need to get back to daily practice to keep atitude healthy. Thanks for being here. Sheila

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  • ycats70
    ycats70 Member Posts: 36
    edited February 2014

    Oh goodness Lav! You poor thing.  Hope you are able to get lots of rest and kick this thing fast.  Did you get a flu shot this year?  

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  • BayouBabe
    BayouBabe Member Posts: 2,221
    edited February 2014

    Thought I would check back in for the benefit of those of you just starting.  After a rough time with two AIs, I started Tamoxifin on December 13, 2013.  First two or three weeks I experienced nausea, hot flashes, restless sleep, and mood swings.  Today - nausea is totally gone; hot flashes occur occasionally (often not even once a day); sleeping like a baby most nights, and mood swings have evened out.  I am experiencing a bit of fatigue, but am attributing that to the OT and PT I am currently in for lingering side effects of Femara and Arimidex, not theTamoxifen.  So glad to finally find a drug that is tolerable (knock on wood).  I just might be able to do this for the long haul!Good luck to all of you!  May your side effects be few or disappear with time!  Hugs Tamoxifen Friends and Sisters!

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  • Kristinaj_29
    Kristinaj_29 Member Posts: 5
    edited February 2014

    Hello.  I started Tamoxifin in the beginning of December.  The one and only side effect that I seem to be having from that is depression and crying. Not sure if it's from the menopause that it has thrown me into at age 45, but I come home everyday and cry (NOT normal).  Doc has added Effexor 37.5 mg once a day, but it seems to be doing nothing.  He keeps telling me to give it more time.  Has anyone found that with time, this depressive feeling gets better?  I am hoping!  I don't think I can live like this and am not sure how to get through this horrible effect that Tamoxifin is giving me.  Suggestions from anyone?  Wonder if asking for another drug would help and "if" I can take another drug instead of this one?  Thanks and good luck to all of you. 

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  • DawnCT
    DawnCT Member Posts: 143
    edited February 2014

    Kristinaj - I'm sorry you are having this side effect.  I have not started my Tami yet but wanted to recommend that you also post this question on the bottle o' tamoxifin thread or start your own thread with your questions.  There are a lot of people here on BC.org with experience with Tami but I think there are more newbies on this thread.

    I hope you find some relief!

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