Bottle 'o Tamoxifen

SummerAngel

A lot of the percentages they throw around were from a large study that ended in 1998 called the NSABP P1 study. It's interesting to me how they just gloss over some SEs like they're nothing, though. For example, ovarian cysts. I got them when only taking it for 6 weeks. When I looked at studies it shows that ovarian cyst formation is VERY common for premenopausal women taking Tamoxifen, but much less common for postmenopausal women. If both are grouped together it would be a "rare" SE.

Also, ovarian cysts are considered to be a minor SE, but then recommend surgery (to remove the ovary) if the the cysts don't resolve on their own. I'm also in near constant pain. That's not minor to me!

Ovarian cysts in premenopausal women taking Tamoxifen:

49% in this study: http://jjco.oxfordjournals.org/content/35/10/607.f...

37% in this one: http://www.ncbi.nlm.nih.gov/pubmed/8571997

80% in this one: http://www.ncbi.nlm.nih.gov/pubmed/10021302

lala1

Another article promoting moderate coffee consumption....

Coffee may help keep eyes healthy - AOL.com

lonnie713

I tried the magnesium and had to stop. It made my hot flashes worse. Been off of it for a few weeks and feel great.

plumster1

Hi all-
I took my first pill today. How long does it take for side effects to start...if they are going to happen?

SummerAngel

plumster1, it took almost exactly two weeks for SEs to show up for me. Everyone is different, though, and you may not experience any!

live_deliciously

thanks for all the sharing. Ibstart this coming Monday the brand i got was teva.

Anonymous

Plumster, it took 2-3 weeks for my SEs to start showing up. I agree with SummerAngel - it's very individual as to when and if they start.

4pink101

is anyone also taking goserlin with tamoxifen

gaia0132

Hi all

I'll be picking up tamoxifen this week. I am a bit freaked out about SE as I really think Dr's gloss over what happens and simply go to 'well we have something for that..." intervention upon intervention, like: oh you have cysts and thickening, well lets give you a hysterectomy.

I'm also due to start herceptin, so how does that fall in the mix?

Anyone here who has done herceptin and tamox but NO chemo?

would value hearing some real life experiences

Thanks so much

molly1976

Hi gaia, I've been on Herceptin since March (I did also do chemo - Taxol - for the first 12 weeks of Herceptin) and have been on Tamoxifen for a month. I don't have any side effects at all from either the Herceptin or the Tamoxifen, at least not yet.

islandmom

plumster, gaia, we all react differently to Tamoxifen or any drug, unfortunately there is no way to know ahead of time. I have been taking Tamoxifen for 4.5 years.

I have experienced:
1) Leg and foot cramps very strong the first year, magnesium seemed to help. Now, I ocassionally get cramps on my feet but go away if I apply heat, like a heating pad.
2) Vaginal discharge had baseline tests done at the start to make sure there is no thickening. I had heavy discharge the first couple years. No issues with thickening and the discharge has diminished.
3) Foggy brain, more pronounced in the last year. I cannot say it is the Tamox for sure, it could be age, my doctor thinks it is a result of chemo. I do not know what is causing it but this is the most annoying one.
4) It has not affected my weight, I have been able to loose and maintain my weight at an ideal range for me.

Hopefully you will not experience too many side effects from taking Tamoxifen. Having a good doctor is very important, some can be dismissive, finding one that listens and takes your concerns seriously is key. I am very grateful to my oncologist for finding other health issues I did not know I had.

Anonymous

I have a question for women who were premenopausal at time of diagnosis... I am 47, my periods were regular and then I had one after my first Taxol and none since. I asked my MO if I can expect it to come back at all, and /or would it disappear again after starting Tamoxifen? She just said everyone is different and we never know...I'd just like to know what to expect. I am currently 4 weeks PFC, starting radiation next week and then will start Tamoxifen. So... taking a poll here if anyone cares to share... thanks!

Juliecc

Kerry, my periods used to come about every 30 days before tamoxifen. In the last 16 months they probably average every 45 days. One came after 22 days then my last one took 57 days! So nearly all are more spaced out but there is no rhyme or reason. They are also heavier but shorter. The first 3 days are pretty bad. I wouldn't mind if they stopped.

ErenTo

Kerry, I'm 39 and was premenopausal prior to chemo. Had fairly regular periods on chemo until the last one which was 2 weeks late and lighter than usual. I'm now 7 weeks pfc and haven't had a period yet. My MO said you can expect your period to come back within up to the next 3 years. If it does I'll be getting zoladex shots.

BBwithBC45

Kerry, I'm 46. I had my last period about a month after the first Taxol. I'm almost 14 weeks PFC now. My MO says that it could come back within a year or two, but most likely it will not.

ErenTo

Forgot to mention that I started tamoxifen a month ago, although not sure that it directly impacts menopausal status, but it could mess with regular periods.

BreatheDeep

Hi gaia0132,

I just picked up my Tamoxifen this week too, and have read so many different articles and findings on side effects that I am terrified of starting the pills. I am having to consider whether the % of how it will reduce a recurrence in me is equal of better than the 5-10 years of feeling bad from SE's. I am not a person who did well on birth control or any other pills and it's really got me stressed out too. Though Tamo has its positive affects, it has many negative affects on other things in the body, and that is deeply troubling me. When I told my oncologist I didn't know whether I would be taking it she insisted and said, "No, you WILL take it." Period. I feel like I am trying to make a life or death decision because I'm looking at this long term in both directions and both scare me ;-(

I am having a consultation with a physician who is both conventional and a naturalist this week just to get another opinion.

Beachbaby65

I was perimenopausal and had irregular periods before dx, 0 periods since my first chemo July 2014. I'm taking a Tami break and my period hasn't returned, i do however have a few pms symptoms every month like dry skin and a little pelvic pressure like before I would start cramping.

Lolis197138

I am 34 and I had regular periods up to my second last chemo (august 14, 2014). I went on chemopause for about 8-9months and had my first period in April of this year. Been on tamoxifen since September 2014. My periods have been irregular ranging from 25-57 days cycle. My ob-gyn mentioned that she might do a biopsy due to the irregularity. I feel like I am having some cramping now and I had my last period less than 2 weeks ago. The periods have become lighter and shorter than before.

Definitely don't like the fact that I don't know when to expect it.

I had terrible hot flashes but I think it was because of chemopause. Right now I don't have any side effects but the minor athritis pain in my left leg.

queenmomcat

I'll admit that the 'not knowing' aspect of tamoxifen is one of my worries: I guess I'll just stay in the habit of carrying appropriate products around.

magiclight

Your comment about "carrying appropriate products around" reminds me of something I read a long time ago that proposed that women are strong, resourceful, and prepared for most events, because they have years of practice being prepared. No matter what a woman's profession is she must always be prepared for a personal emergency. I am sorry that Lolis has to adjust to this new experience as a SE of being on/off tamox.

queenmomcat

I shall go forth and feel like McGyver now. Though: my sympathies, Lolis! At least for me there'll be a question of "Is this tamoxifen, or perimenopause?"

Lolis197138

Thanks ladies. In the months of chemopause I was questioning if it was chemo or tamoxifen. I feel better now that I don't have hot flashes and when the bone pains are bad I usually take magnesium and seems to help.

Hugs!!

charmainejensenvoisine

Marksgirl can you please share a link to wear you go this sleepmask from please? Thank you Charmaine

Cmo65

Breathe Deep:

I've had my tamoxifen for 2 mos and haven't taken it. I don't know what to do. I'm terrified of the SEs and am just in a flummox

Marksgirl

Charmaine:   Here is the link to the sleep mask I have (recommended by night nurse)  ($40):  http://www.amazon.com/Tempur-Pedic-Sleep-Mask/dp/B0027OUUFW/ref=sr_1_1?s=hpc&ie=UTF8&qid=1440643388&sr=1-1&keywords=sleep+mask+tempurpedic 

An online "Consumer reportish" site called Sweethome.com tested masks and recommends this one (which costs less - $13 and is the top selling mask on Amazon):  http://www.amazon.com/Bedtime-Contoured-Comfortable-Moldex%C2%AE-Includes/dp/B00FJQFJX8?SubscriptionId=AKIAJM4NKIQGABP2PIRA&tag=thesweethome-20&linkCode=xm2&camp=2025&creative=165953&creativeASIN=B00FJQFJX8&ascsubtag=SH15870   

 

I love my sleep mask - although this morning I did wonder why the garbage men were on the street while it was still pitch dark out, LOL!      I did chemo for a few percentage points, so if this has any benefit at all, I am on board!     I am going to look into taking Melatonin but I always think natural is better.   And I really don't want another pill.      Here are a few articles on light at night and breast cancer growth:   It will be interesting to watch the research on this one!   At least the eye mask is an easy fix if you are interested!    I am sure there is more research out there, looks like mostly mice and rats right now.)

light at night and melatonin effects on breast cancer cells:  http://www.ncbi.nlm.nih.gov/pubmed/24131150

tamoxifen effectiveness and light at night:  http://www.aacr.org/Newsroom/Pages/News-Release-Detail.aspx?ItemID=569

breastcancer.org article:  http://www.breastcancer.org/risk/factors/light_exp 

CMo65 - I am so sorry for this decision (whether or not to take Tamox).    My heart goes out to you.    I have not had any side effects yet (10 weeks) except not really nausea but a general "not hungry" feeling, and warm flashes.   My MO said that because I am exercising, he does not think I will have any water retention issues.   But who knows about the ovarian cysts.   Only time will tell.  Hugs. 

Jenny

 

charmainejensenvoisine

Jenny:

Thank you so much for the links to the sleep mask. I am definitely going to check them out. Since my breast cancer treatments life just has not been the same for me and then complications from being on Tamoxifen ~ sleep for me has just not been there! So I am hoping that I will get some sleep using a sleep mask and blocking out even the slightest mask. Some people even have told me that sleep masks can even give you a bit of a sedative effect so to speak

Charmaine

Cmo65

I've always been a pretty poor sleeper but since breast cancer, I've been taking melatonin and I sleep soundly for 8 hrs every night. Never thought I'd sleep that long

gemini4

I have used a sleep mask off and on for some years now (even pre-BC). These days, though, I can't tolerate it because it's uncomfortable when I have hot flashes at night. It's always something! :-

Professor50

I am on my way back to tamoxifen! I took it for 6 months and then switched (due to mental fog). But after 3 months of lupron + exemestane, I am going to be giving tamoxifen another chance. The AI+Ovarian suppression route was crippling. I couldn't move. My hips, knees, fingers, and finally my feet (the joints in my feet and toes!) became so sore and swollen that I couldn't walk down a flight of stairs. I couldn't even put my running shoes on. I'm 51 and quite active and our house is nothing BUT stairs. It was awful. I found that the only way to be able to move (at all) was to not stop moving (like ever). I was walking/running 10 miles day and swimming as well AND gaining weight of course. Finally in July, I made this executive decision that it had to stop. I stopped taking the exemestane in mid July and refused my August lupron shot. I took August off and just cannot tell you how amazing it is to be back to normal. Now, I am still having poppy joints (but not that horrible burning pain in my joints) and one finger is still a bit triggery. But wow. I am finally feeling like "me" again.

I still need to get that estrogen under control though so I am coming back to tamoxifen. It feels weird to do it but my thinking is that I took tamoxifen for 6 months and felt pretty great until the end when things got wonky. And those side effects might not be the same this time out. For one thing, I did radiation at the same time and some of my fog/exhaustion might have been due to that and not the tamoxifen (or a combo). Also, I was still feeling very, "OH MY GOD I HAVE CANCER" so my lack focus may be (at least partially) attributable to that. We shall see! September 1 is my restart date. Wish me luck ladies!