Bottle o Tamoxifen
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Hi All
Sparrow - so sorry to hear about your Mom. I ditto all that has been said.
Jeanette - thanks so much for the vit/calcium info - great stuff BUT watch the grapefruit. I am being proven wrong on some phytoestrogens but I am very sure grapefruit and tamoxifen do not mix.
Take care all
C
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Hi everyone. I'm new to this thread. Just took my first tamoxifen this morning after eating oatmeal. My stomach is upset, like hearburn, burping, and feels really bloated. I know it's from the tamox. Anyone else? Do you get use to the med and the upset goes away?
By the way, Peg, they have a 2000 mg very small gel vitamin D at Costco. It's Kirkland brand.
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BONNIE ~ I am so happy to "see" you!!! Yay! Yes, I too think of you when I wear my
! LOL! I did get my new ones, but not the kind I usually get. I like to get my glasses at Marshalls or TJMax, but I went to a wedding in LA and on my way down needed some... so I got a $10 pair from a truck stop LOL! They're actually not bad and saved me some 
!SPARROW ~ How are you doing? Been praying for you and your mom!
JEANETTE ~ Thanks so much for all the great info. I am feeling really sleep deprived so I am going to give it a try by taking my Calcium and vit D at night. Anyone know how long it takes for it to kick in?
NANCY ~ How did it go with the PS? I've been thinking about you and your decision you have to make.
KAWEE ~ Welcome!!! I haven't had any heartburn, but Jeanette has a good way to handle it all. I'm sure she'll tell you what she does once she reads your post.
CAROLINE ~ I have heard that about grapefruit... there are a lot of meds it doesn't mix well with.
Have a wonderful evening my friends!!
Hugs,
kelly
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I used to sleep 7 hours straight thru the night no matter what time I went to bed. Now on Tamox, i usually can fall asleep easily but its not straight thru anymore. I 've been waking up 4-5 hours in sweating or having to pee. I feel like I'm dragging around 3 or 4 pm. No time for "siesta". I try to meditate or do yoga for 15-20 min. It's a great charge to finish up w/daily activities, but the nights are still restless. My ONC recomended an antidepressant to help w/ sleep. NO THANK YOU. the less chemicals the better. However, I still wonder where this cancer came from. I was always "whole food" & organic conscience since college. Go figure!
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Howdy, All!
Has anyone experienced a noticeable return of chemobrain or other mental fuzziness since starting Tamox?
I was supposed to start when I finished chemo last Nov, but I refused because I'd read that it is linked with "cognitive decline" and I was already so distressed over the Alzheimer's-like symptoms I was having (whether due to chemobrain, chemo-induced menopause, insomnia for months on end, or bad episodes of depression). I've been on nothing but Herceptin since Nov, and all the side effects have cleared up. For the last couple months I've been feeling physically and mentally great, still low on energy, but mostly I'm my old self. My onc has pressed the issue of Tamox again, and insists it's either that or shots to suppress my ovaries (which have kicked back in), or else oopherectomy.
I agreed to try Tamox, but I'm frightened about losing my brain again. That was the worst thing I've been through. I am a scientist/educator, and I need to be able to think and communicate reliably.
I'd really appreciate an opinion from the good folks of this forum. Is this a justified fear?
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Good morning all,
Took a very quick look at the posts this morning.
Sparrow: thinking of you and your family. xoxo
Kelly: Thanks for asking about the PS. I have an appt. on 4/13 to discuss my options. I have mixed emotions about this decision. On the one hand, I'm scared to death of another surgery; but I chose recon from the get-go and would like to finish what I started. So .... we'll see. I'll just keep putting one foot in front of the other.
kickingitsass: You know, I was beginning to think I was starting to lose it myself. My brain has been much, much foggier lately. I hadn't thought about the big T causing this, but, YA! I have been seeing the return of chemo brain (or maybe it just never left). I find myself grasping for words in the middle of a sentence. I had to speak in front of 300 parents and students the other night and I'll tell you ... I was scared that this "brain blip" would kick in! It wasn't too bad, I did stumble a couple of times. And then of course, HOT FLASH ... ears and face turned bright red! Lovely! So having said all of that ... not sure if this is linked to the T or just part of the sum total of this journey.
Girls ... I have been sooo damned moody lately. I can be "up" and happy one moment and then hit the bottom and hit it HARD. Yesterday I was talking to one of my colleagues and just dissolved into tears. YIKES. Anyone else with the really, sharp mood swings?
Love to you all my friends ... from a cold and rainy Massachusetts
Nancy xoxo
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Kickingits, I will start T in a few weeks. As well I am going to start the monthly shots to shut down ovaries...
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Morning girls....Well I tried the Calcium & Vitamin D3 before bedtime, but I STILL woke up & stayed awake for so long! I even had a 1/2 cup of milk with the crackers....And I've been trying to go to bed later, even though I usually get up about 5-6......But the dreaming is driving me nuts, Ha!
So honestly, I don't think it matters what we do, it just comes along with the T pill!.. I AM going to buy the ....Oh what is is?....YES, Melatonin.....Going to give that a try. Can't hurt..I DO DRINK the smoothie with Aloe Vera, (from Walmart) and I don't have to take the Ranitidine anymore. I drink it during the day....so at least I know what to do about SOMEthing!
And yes Nancy! My first Oncologist told me I would have mood swings...But now I at least KNOW what is going on, so I try & "take over" what I feel like. THEN I ask my Husband, "Okay, you know why I get crabby sometimes, what's YOUR excuse", Ha! But you know, you have been through a lot more than I have, & you're still "in" it...So don't be hard on yourself....Yes, One Day at a Time!
kickingitsass.....I never had chemo, so I don't know about the Tamoxifen working with that! but, man, I believe ANYthing is possible! Maybe just try it for awhile? Ask your Doc about that.
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Chevyboy: My tamox bottle specifically says no grapefruit on it. I know my husband can't have it with some of his meds either and we both love it.
Kawee: Welcome! I know you can get a bottle of anti-nausea meds (chewable even) at the pharmacy and it is OTC and cheap. My anesthesiologist suggested I get some after my first lumpectomy since I got so sick after the anesthesia. It is basically "sea-sick" pills. It might be worth a try.
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Thanks for the comments and keep them coming! I love the can-do attitude here - THAT's what'll heal us, just as much as the medical treatments (and yes, there are studies to confirm it)!
Chevyboy - laughed out loud at Sebastian's comment!
Nancy - I don't know that I feel any better about T after reading your post, but at least I have an idea what I'm in for. Moodswings, headaches, insomnia, achyness, and fuzzbrain ... kind of the same symptoms as when I used to drink too much. I suppose I could look at it as a less entertaining but much more beneficial drug habit. Not looking forward to having hotflashes again, but really, it's the mindfog that scares the bejeezus out of me. I have quality of life back - even better than before because now I'm grateful for every moment and lighter of heart - and I just don't want to go back to black moods and cognitive deficit. A big, rebellious part of me wants to say, 'screw it, I'll just take my chances without further treatment.' Reading the stats, right now I have about 11% risk of recurrence, which is in line with the general population's risk of BC occurrence. I understand the onc's desire to drive the risk as low as possible, but he doesn't have to live with the side effects.
It has been snowing all morning, so I'm going to head out on my new cross-country skis. Y'all have a fabulous Friday!
love and hugs, Ali
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Well, I'll never get caught up on this thread- it moves too fast! Thanks so much for the encouragement, Caroline , Kelly and Nancy.
Nancy, speaking in front of 300 people with tamoxibrain and a hot flash? :O You are my hero! or is it heroine?
I have mood swings from Tamox but they seem to last at least a couple of hours. They feel exactly like the bad moods I get from PMS. I try to warn my husband when I'm having one... "It's not you, it's the Tamoxifen..."
I was in a bad mood last weekend for several hours and suddenly *poof* it disappeared and I was myself again. It was like a switch turning off, it was that fast.I wish we didn't have to monkey with our hormones... But at the same time I'm glad I have this option to "turn off" any cancer cells that have survived surgery and radiation. Tamoxifen- can't live with it, can't live without it...
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KICKING... ~ I have to say I have fuzzy brain and I am finding it embarrassing especially at work. I have to write everything down or else I will forget. I am feeling a little sleep deprived on the T so I'm not sure if it is T or sleep deprivation or a bit of both. I too find I lose track of words in mid conversations or if I don't comment as a thought comes to me during a conversation I sometimes don't remember it when it is my turn to comment. My DH is a sweetheart and says that I can interrupt his conversation anytime to get my opinion in! LOL! I tell you I feel like that old Sudafed ad where the person's head is a balloon floating in the air! LOL!NANCY ~ I will be praying for you girl... fuzzy brain doesn't help with your confidence in decision making either. You deserve the BEST outcome in this and that is what I am going to pray for.
JEANETTE ~ Dream, dream, dream... Do you think that's what makes our sleep not so restful? Also, can you help KAWEE out with your heartburn formula? I really should write it down. Love, love the kitty pic, made me laugh out loud! Aren't we all like that, don't appreciate it when we have it good! LOL!! You're a hoot with the crabby hubby excuse comment... hahaha!
MICHELEBOOTS ~ Good to see you, how are you doing?
MBCR ~ I really want to get this sleep thing sorted out... the dreams I'm not sure about how to fix that... maybe deeper sleep?
SPARROW ~ (((((hugs)))))
SUSIE ~ Are yu still busy with company? Come out to play when you can, you too BONNIE!
HARLEY ~ How are you doing on Femera?
Gotta get on with my day!
Hugs to all,
Kelly
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Hey, kickingitsass (love the name!), I definitely relate to your fears about tamoxifen, because I had them bigtime before I started too. And I definitely have heard that some women get a foggy brain from tamoxifen. But, to give you at least one opposite data point, I haven't experienced that. Admittedly I'm only 4 months in, and, I didn't go through chemo, so I'm not starting from a chemobrain issue to start with. But I don't think you should assume you will have problems, because some of us have not.
Anyway, one way to approach would be to give it a try, knowing that you have the right to stop if its not working for you!! And then DO stop if its too problematic (where YOU define "too problematic", not your doc). I would say the same thing about the oopherectomy or lupron shots - he can't "insist" on anything...its your body, not his, and you have to weigh the benefits and deficits of everything they recommend. You might also get a 2nd opinion on the stats and recommendations, given your pathology and history. I can't tell if you've had single or double MX...if single then the benefit of tamox will be greater than if double, to help ward off a new BC in your other breast, which might sway you. Anyway, the benefits are real but not gigantic according to the stats you quoted, so it would be nice to have those benefits but only if your quality of life isn't significantly degraded because of it. That was the mindset I approached it with, and after a couple of somewhat topsy-turvy months my body seems to have mostly adjusted and I tolerate it very well (knock on wood, cross fingers, etc.). Anyway that's just one idea.
CS
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Okay thanks, bcincolorado! You are RIGHT!!!! No, my bottle doesn't say that, but I remember that from somewhere else! I threw away my cut up pieces, & I'll give my Daughter my last 2 grapefruit...
And we went to the store & bought some Melatonin....it's worth a try, Right?And Ali, I never have hot flashes.....but I think a lot of the women do, but when you consider, this IS "doable"...it just helps me think I am protecting myself! And the SE's aren't as profound as with Arimidex or Femara. And honey, I know.....NONE of us want to do this....so if you want to say "screw it".....just say it & then forget that, Ha! We're all in this together!
Hi Kelly....Okay Kawee....I used to always have heartburn! I took Ranitidine for about 8 years now....But THEN when I started Tamoxifen in January, I also started taking a few vitamins, AND I used to have an ulcer....a gal I worked with told me "Oh just go get some Aloe Vera, & drink it 2-3 times a day, & it will go away!".....I did, & the FIRST time I mixed it with juice, & drank it, that awful pain went away! THEN with the heart-burn, same thing! Just go get some Aloe Vera at Walmart....$7.89 a gallon I think....THEN mix it with either juice or tea & drink the darn stuff! You can make a smoothie with a banana, mixed with 1/2 juice & half Aloe Vera, & that flavored creamer & blend it! The last time I made it, I had some ice-cream & threw that in! Mmmmmm! And I haven't had to take a Ranitidine since I've been drinking the aloe vera! My Husband just drinks it plain, but I don't care for it that way....so, either with juice, or tea! And Kelly, I just want to sleep all night! And not dream! But tonight I am trying a Melatonin! And did I already say this, that I WON'T be taking the Calcium & VitD+3 pills at night! Girls, you will taste it, all night, & it isn't good!
You would THINK that between us all, we will come up with answers & solutions to all our problems, Ha! And even find a CURE for this cancer stuff! Okay gals! Talk to you later....Glad you like the pix! xoxoxoxo
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It's just been one of *those* weeks - all the se's clamouring to get their teeth in!!!
Meh!!
Hope the weekend goes well for everyone!!
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Kicking, out of your 3 choices, I think the tamox is the least aggressive. Removing the ovaries (surgical menopause) the most aggressive, and irreversible to boot. The forgetfullness is a known menopausal side effect. Since you've already been "menopausal" after the chemo, you've have a preview of what it's like not to have working ovaries. With tamoxifen, they may still work just fine.
I've been on tamoxifen for over a year, but am also perimenopausal, and do have more frequent moments where I forget the word that I want to use in a sentence. This does bother me only when I'm at work. I'm not sure if it's from the tamoxifen though, or more because of the fact that my periods are coming more and more farther apart now. I guess I'll find out once I stop taking it.
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Ainm - hang in there, girl! What comes down must eventually go up, right? Hope you get to relax tonight and have a peaceful weekend. I send dark chocolate thoughts your way, and a hug.
Sparrow, Kelly, CS, and Rose - Thanks for the feedback and good suggestions!
CS - in answer to your wondering, I had a single MX, sentinal node dissection, and the docs considered going back in for full axillary dissection due to unsuspected mets and micromets they found in pathology after closing me up. I really appreciate your data point and the thought that I could maybe get through Tamox relatively unscathed.
I did a quick google scan to see what percent risk reduction T contributes. In HER2+, single MX patients, it's 30-50%, depending on where you look. There's a study that suggests a mammogram after one year of T can differentiate patients likely to benefit from those less likely (women whose breast density decreased had a 59% risk reduction, those whose density did not had negligible risk reduction.) But that's just one study (http://www.ecancermedicalscience.com/news-insider-news.asp?itemId=375 )
Have a great weekend, ladies. Love to all y'all. Ali
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I read a study on tamoxifen yesterday. They said brain fog and memory loss, etc. are all common side effects.
I'm with you kickingitsass, it cuts your reocurrence in half so that means if your's is 11%, that means it will cut it by 5.5%. Worth it, I'm begging to wonder. Although in that study I was just talking about, they said it cuts the risk of occurence in the other breast by 45 to 50%. That's why I agreed to try it. It's going to suck all the estrogen out of our bodies, and I have very little left anyway. I've had my ovaries removed and they still just keep insisting I need it.
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Hello "T" Gals, Sorry I havn'rt post, But been checking in. I think & Pray for you all . Hoping all the Side effects are at a Mininal & every one is getting stronger evdery day!
I Saw Surgeon Yesterday I am still having swelling around incision & rt arm pit, he did not want to drain fluid, he wants to see if My body will asborb it! still having pain,but it better & Emtionally i feeling better. I been off the tomoxifen for 2 weeks, onocogist took me off for a month break while the infection clears up. My leg pain & engery is better , so it could have been the side effect of tamoxfin ( so Now I am scared to go back on) Iam Praying about it & I may not take it anymore, I see Her in 2 weeks & I Will discuss it with her & have labs done again! I finish My last antibotic today, ( yea) So I hope my stomach will start feeling better & get back to normal now! Welll I got the Surgeon to release me to go back to work next week, With some restrictions, no lifting over 10lbs. I am really excited , but scared cause it 's been 3 months since I worked!, so I need to get back ( no more PTO left) Pray that all goes well. I am planning on Monday march 29th! 5 Surgery behind me & Iam ready to get on with my life! Well My sweet Sarah has been so patient & finally going to have her 16th B-day party for family Sat ( hope no one goes to hospital this time ) her Birthday was actually march 5th,the day I went into Hospital with infection& had Surgery to Remove TE. The Cake been Order ,so it a go, Pray we all stay healthy ,I hate to cancel it again-! I just want you all to know how much I appreciate all the sweet post & Hugs. Thanks For make this Challenging time much easier, because of your support! {{hugs}} Gina PS Have a Blessed weekend!
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Hello Tamoxibeauties! I am doing my usual driveby! lol Just been so busy and too much going on. Good stuff..just busy!
My company finallyyyyyyyyyy left and it is so nice to kind of get our lives back. lol
Hope everyone is doing well!
Have a great weekend and enjoy the Spring weather!
♥ Susie
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Ok..I HAD to leave this for you! Now don't forget to smile!
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Hello Team!
SUSIE ~ Yay you came out to play! love the pic! haha
AINM ~ Sorry about the ehh week! Here's wishing that this next week will be awesome!
ALI ~That is a high recurrence risk reduction for the T in unimx! I had heard in us bmx women it reduces our recurrence risk by 1/3... need to do some more reading on that!
ROSE ~ One year wow! Has that been your only se?
GINA ~ So good to hear from you, I'm glad you're doing better! Here's wishing your dd a belated Happy Birthday and a wonderful party today! Have Fun.
Have a wonderful weekend all!
Hugs,
Kelly
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Kawee, tamoxifen doesn't take estrogen out of our bodies. It blocks it from getting into the breast cancer cells. It does travel all over our bodies, so I'm sure it's probably blocking estrogen from other areas too, such as brain. And it actually has pro estrogen effects on some areas such as bones and the genital tract, which is why it's good for bones and why most women on it don't have vaginal dryness, but have vaginal discharge instead.
Kelly, it's going on a year and a half, although I have to admit I put myself on a 6 week break from it early last summer. The hot flashes were getting too intense and I was upset over my lack of libido and difficulty with response. (One of my favorite threads on here to read is the I Want My Mojo Back) I had thought about not going back on the tamoxifen at all, but then thought, what if I get a reoccurrance and then regret not having taken it. So now, as far as side effects, they are definitely cyclic. I can go 2 months with no hot flashes and no vaginal discharge, then those symptoms will start up again for a couple of months. My libido is still missing in action. Did briefly get a little of it back just when I was starting up on the tamox after my break. Joint pains, but these could be from progression of menopause. Everytime I think my period is probably done with after absences of 6 and 9 months, I get it back again for a couple of months. So a lot of the side effects are things that I was already starting to experience with perimenopause anyway. The only one that I know is definitely from the tamoxifen is the clear vaginal discharge. The hot flashes and joint pains, I have pretty much under control now due to some natural remedies.
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I have the mood swings too
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Rose, CS777, and Caroline - I'm grateful for the clearly explained medical insight and correlating personal experience you share here! I really appreciated the link to that article/interview about the history and mechanism of Tamox. (I think one of you posted that last week? I just joined this forum and I'm still learning who my new neighbors are. Today I read back through the posts of the last couple weeks, and now I have all the names confused again.)
Rose - what are the natural remedies you've tried for joint pain and hot flashes? Did your doc suggest the 6-week break from T? Do you know if it's generally acceptable to take intermittent breaks, the way we were supposed to do with birth control pills?
I'm still undecided about whether to start T or not. I think it was a valid suggestion from many here to try it for a while and see whether it becomes problematic. I was glad to read that after you were off it for 6 weeks your side effects started to resolve. But I also thought it noteworthy that your SE were bad enough to merit taking a break and considering a full stop.
The contrary voice in my head says, okay, so if I don't take T and I have a recurrence, then I just have the other breast lopped off (symmetry, at last!) and probably do chemo again. There were certainly moments when I swore I'd never put myself through that again, but in retrospect, it was only six months of side effects very similar to what T seems to offer for a whole five years. And right now the probability is about 90% that I won't have a recurrence. (My understanding of stats and probability is that they have nothing to do with what actually happens to any one individual data point. They describe trends in a data set, and the set has to be quite large for the trend to predict with confidence what has already happened. I interpret that as: either I have a recurrence, or I don't, whether I take T or not.)
I'm probably being too fringy philosophical here, and I don't want to undermine anyone's faith in a well studied and respected medicine that is credited with saving a LOT of lives.
The main reason I'm so reluctant is that I've had severe chronic depression since puberty. I manage it successfully with exercise, mostly running. During chemo I became too fatigued to run, and the depression hit so hard I was pretty sure it would kill me before the cancer ever got around to it. Because of this, I refused radiation following chemo, even though rad was the planned alternative to going back for a full axillary dissection. At that point I knew exercise was the only thing that was truly going to extend my life expectancy. In the four months since finishing chemo, I have felt more positive and even-keeled than ever before in my memory. It's a wonderful thing. I would really like to stay this way as long as possible. And now that I finally know what it's like NOT to have depression, I would say that living with depression was worse than living with cancer risk. But that's just me in my little world. Enough words! xox!
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Morning gals! rgiuff.....that is an understandable explanation of how Tamoxifen works! Very good!
I am much older than you guys, so I can't comment on some of the side-effects you have, but I did wonder about that discharge! I thought it was just ME! It's not much, but I thought I surely must be falling apart! But my libido is better than even before Tamoxifen....and I'm 72..... I think from what I have read, that ALL of us will have some SE's...But not the same ones! And it seems like they are THERE for awhile, then something new comes along!
Like sometimes I DO feel crabby, but when my Husband mentions it, and HE is also crabby, I ask "so what is YOUR excuse?" I think when I realize that I'm a bit "off" I try & counter-act it.
kickingitsass....(love that name!)......It's only understandable that you are questioning any thing further with your treatment! You have already been through a lot.....And as you have read, you MIGHT have some of the side effects, or maybe not! I was afraid to start it too, but now I'm just getting used to the few little things that are different....I feel like if it will help me from getting cancer again, it's worth it! And if you do start taking it, and after a few months, decide you don't want to, then your Oncologist will probably prescribe you something different, like Femara or Arimidex.....But I have read all the gals comments on those threads, & their SE's sound much more profound than those of us on Tamoxifen. Let us know! Jeannette
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Hi all,
I usually don't post during the weekend ... just too busy at home but I found a quiet moment to catch up with all of you. The amount of great information on this thread is really impressive.
AINM - sorry you are having a bad go of it lately. Thoughts and prayers are with you.
GINA - So nice to hear from you. Happy Sweet Sixteen to your daughter. Hope the party is FUN, FUN, FUN! You and your family deserve it!
KELLY - thanks for the prayers ... fuzzy brain or not, I am going to try to see this through.
SUSIE - cute pix!
SPARROW - how is your family?
JEANNETTE - I agree with you ... we all seem to have different SE's from T. They vary from woman to woman, as well as the intensity and the duration ...coming and going as the weeks and months pass. I don't know if it's cyclical or just has no rhyme or reason. I do know this ...I would do just about anything to keep a recurrence at bay.
Love to you all ... enjoy the rest of the weekend.
Nancy xoxo
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Day 5 and I have (but remember I also have Lupus) headache, body aches, fluid retention (can't get ring off), major indigestion. Felt horrible before all this, now even worse. I've made my decision, I'm not taking it. Onco will not take no for an answer. He says if I can't take tamox (which he is giving me because it'll have the least amount of side effects with the Lupus) he'll try another one. HELLO!! He already told me those have worse side effects.
Like everyone says, we're all so different. But for me, quality of life is important, not just quantity.
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So happy that you all liked the pic! I always hope to put a smile on your beautiful faces!
Ok..off to bed!
♥ Susie
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Good Morning,
KAWEE - So sorry you have had such an awful experience with SE's. You are in a very difficult position. I'm thinking of you ... hang in there!
Didn't sleep ALL WEEKEND LONG! I feel like a zombie and lack of sleep only contributes to the fuzzy brain. UGHHH!
I've tried Melatonin ... it didn't work for me. Oh well. To lift my spirits this weekend, I bought myself a pair of bright red, shiny shoes! Nothing like a new pair of shoes to lift the spirit ... it always works for me anyway! Love to all,
Nancy0
