Bottle 'o Tamoxifen

Professor50

lala1 that is good to hear. I am feeling pretty good these days. I am still in my fat clothes but feel so much better than I have in a long time. I am taking baby aspirin, fish oil, B-complex, & calcium+vitamin D with my tamoxifen. I also have been taking magnesium every other day. I am feeling really good and getting things done and feeling pretty normal: Not starving but not overeating and exercising 6 days a week. We shall see if it works weight-wise but keeping in mind that I am in it for the long haul!

FastWalker

Astarte: I started Tamoxifen on September 4th. I felt sick the first couple of days. Now I am feeling much better. The brand I take is Mylan. I heard the brand can make a huge difference. I wonder if you would fare better on Mylan? You are not whining. (Even if you were - whine away - that's what we are here for.) Take care.

FastWalker

Is anyone having their blood tested by their medical oncologist for side effects while on Tamoxifen? One medical oncologist I saw routinely does blood work - including a complete liver panel. (Tamoxifen can affect the liver.) One medical oncologist doesn't. . . I am trying to choose between the oncologists. I like the idea of having my blood monitored so in case there's anything wrong, we can catch it early. However, the MO who does the blood monitoring feels 5 years of Tamoxifen/hormone therapy is enough. The other MO, who doesn't do the blood monitoring, says for my individual case (age 46, pre-menopausal, one positive lymph node) 10 years would be ideal. (She quoted the ATLAS study results.) I am not crazy about being on Tamoxifen for 10 years, but I skipped chemo and would like the option of continuing if it would help prevent a recurrence in my case. . . Who would you go to? The MO that closely monitors your blood (and will order scans if the need arises) . . . Or the one that seems to be more up on the latest studies and will continue with more hormonal therapy if necessary? (80% of her patients are breast cancer) . . . Too bad I can't go to both. . . . It's funny how medical oncologists are SO different.

Loral

I see my MO every 3 months for a CBC and Metabolic Profile blood panel and twice a year Vit. D. is checked.

6doggies

FastWalker, I personally would go with the MO who tests your blood, I am going to start Tamoxifen this coming Saturday and my MO said that he will draw blood every 3 months when I see him. As for the Tamoxifen being only 5 years, mine said the same thing, but I figure that he may extend that to 10 once we hit the 5 year mark. You have to do what you feel most comfortable with and what you feel will give you the most peace.

Beachbaby65

Astartes,I am having horrible cramping in feet, legs, and hands, not to mention vision and muscle and joint pain. I also use techs. I just got new insurance with kaiser and will see onc on the 22nd so we'll see what he says. I just did a full blood panel but am still waiting for results one of which is to check menopause. I have had horrible insomnia since chemo and I used to sleep so well prior to dc:( hot flashes are the cause I think.

Jumpship

I've been on it since May and my AST (liver) enzymes just went up.

FastWalker

Loral: Thanks for letting me know what your medical oncologist is doing. I like that he monitors you so closely. How are you vitamin D levels? Mine is 30 - at the very bottom of normal range. My MO said it was still considered normal, but my PCP wanted me to get the number up so I just started taking a calcium/vitamin D supplement.

6doggies: Thanks for the advice! Initially, I was leaning more towards the medical oncologist who does the blood work. Then, I got a little nervous when he said he wouldn't be doing the 10 year plan after I asked him specifically about it. But, you're right - things could change in 5 years. Good luck with the Tamoxifen. Let us know how you do. BTW, I felt sick the first few days on Tamoxifen (I started on 9/4/15) and now I feel fine - thankfully, no symptoms.

Beachbaby65: Sorry you are having such a tough time. I hear that sometimes people do better when they switch brands of Tamoxifen. I take Mylan - so far, so good. Also, you may want to have an eye doctor monitor your eyes. Before I started Tamoxifen, my MO told me to get a baseline eye exam and to be examined every 6 months to 1 year.

minivan: Ack! I am sorry that happened to you. What are they going to do about it? Wait and see? I hope it goes back down soon.

Loral

FastWalker...my Vit D was 59, and I take Vitamin D3, 5000 iu a day, recommended by my BS. Both MO and BS said the higher the better.

Professor50

Just a note to anyone who has a blip on their liver enzymes. I had that happen and it was in fact nothing. Lots of things can cause these blips including just taking pain killer. My MO had me come back for another blood panel about a week later and everything was back to normal. They say that this can happen. It is hard for us all because we've been on the losing side of "most of the time this is nothing" and "98% of the time, these tests show nothing's wrong" but even for us , sometimes, it's nothing.

Jumpship

Thanks Professor

FastWalker

Loral : Thank you for letting me know. That encourages me to follow my PCP's advice and take Vitamin D. (Glad I asked my PCP about it since my MO said 30 was still OK.)

Professor50: Thank you for the information. . . LOL - that's a good way of explaining it - that we have been on the wrong side of the percentages. Hopefully, it will just be a "fluke" for minivan.

shelleym1

Ok, so I am almost to my 5th bottle of Tamoxifen. I have done great up until the last few weeks. Does anyone else just feel WEIRD? I can't explain it really. I just feel odd/different. Sometimes its like a fog or drunk feeling? Sometimes the anxiety surfaces and sometimes the depression. I'm a lot more tired. This is getting old. Does it get better over time? Please tell me it does.

willowreed84

Shelley, I feel the same way.  I just chalk it up to se and push thru.  I really hate the mood swings.

I went to a different mo last month because my doc had an emergency.  I was just there for routine blood work.  This mo said I should take tamox for the rest of my life!   I didn't like hearing that.   He said research is showing we should continue after the 10 year mark.  Anyone else hear this?  I'll go back to my normal mo next time so what that mo says  may not matter to me.   Just curious if anyone had heard this.

CarolynAnne

Hi Ladies-

I am new to this board. Going to see my MO tomorrow for follow -up appt and discuss long term. I Did A/C-T neoadjuvantly, had uni-MX, SLNB and immediate DIEP Recon on August 17th. all biopsies came back Neg after surgery!I am 48, was pre-meno before chemo but then chemopause. So I think my MO wants to do Tamox for one year then check my hormones and if I am menopausal then switch me to an AI. Does this sound typical? I am worried about SE's of Tamox that I have been reading here and elsewhere. I am particularly worried about ovarian cysts. I already have several And certainly don't want them getting bigger or get more! Anyone have experience with this? Oh and hair loss?!! What? Really? My hair is just starting to grow back from chemo!

Thanks and health and healing to all!

susanwmcg

Hi Ladies,

I have been reading this board for months trying to decide what to do. I have been on Tamoxifen for 3.5 years. I have about every SE one can have with a 40 pound weight gain - blurred vision, joint pain, brain fog, insomnia, shortness of breath, low libido. I recently decided to take a 90 day "holiday" to see if I can lose any of this weight. Obviously weight is also a huge factor in recurrence so I want to see if this break helps at all. And I want to see what "normal" feels like again. This is such a crap shoot......

Good luck to everyone and I will report back on my experiment,

Susan

shelleym1

Susan at least you've got 3.5 years under your belt! I'm struggling to complete 6 months!! I hope you get some relief on your break.

SummerAngel

CarolynAnne, if your ovaries stay "shut down" from the chemopause you should be ok. From the studies I've read (and what my MO agreed is the case), if your ovaries aren't trying to function you have a very small risk of ovarian cysts.

I'm currently back on Tamoxifen at a half-dose. My MO talked me into giving it a try. He was VERY sympathetic to the SEs his patients experience and said that if I end up with blurry vision/pain in my eyes/pain and pressure in my pelvis again to just stop again and call his office to let him know.

Amy9848

Did anyone's periods just suddenly stop on Tamoxifen? I have always been like clock work every 28 days, and this month it just stopped.

L2girl

I am one who has ovarian cysts, but so far they have not caused me any trouble. They were only found incidentally during a scan for something else about a year ago, otherwise I wouldn't even been aware of them. Since then, I have had to go for pelvic ultrasounds every few months, because every time I go, they find new and different kinds of cysts, (I also have several other things, like fibroids, enlarged uterus, and most recently a fibroma). But everything seems to be benign. Nothing to be done but monitor. I go back in October for another pelvic ultrasound.

To be fair, for all I know, these things could have been there before tamoxifen. (But somehow I doubt it, since my most recent estradiol level was 640!)

Amy, As far as missing periods, I also recently missed about 4 in a row, after being very regular. I'm guessing it's the tamoxifen. But maybe my age?

Carolynanne, As for the ovarian cysts and tamoxifen, we've had this discussion on a couple of these tamoxifen threads, and I remember there were several posted links to articles which basically said that they are more likely to occur in premenopausal women who have high estradiol and have not done chemo. (All of these things fit me.) I don't think it's very common.Perhaps you could do a search.

Amy9848

Thank you L2 girl. I too have had ovarian cysts. They were removed and 2011 with a laprascope procedure and have never given me trouble again until recently. I am wondering if they are back. I am chalking it up to the tamoxifen since I was fine until I started taking it. I have an appt with the gyne next week. I will let you know what they say!

6doggies

Good Morning ladies, I wasn't supposed to start my tamoxifen until tomorrow, but I started and completed chemo on a Friday, finished radiation on a Friday and I figured might as well keep the "Friday" theme going so I took my first pill this morning! I also have had ovarian cysts where I can actually feel them when I move a certain way, I'm hoping that tamoxifen doesn't make them worse, I go see my gynecologist next month, I had a partial hysterectomy in 2009 so I'm going to see what he thinks about removing my ovaries.

SummerAngel

Here are a few studies regarding ovarian cysts and Tamoxifen in premenopausal women (I searched specifically for these when I developed painful ovarian cysts after taking Tamoxifen for 6 weeks - never had one before, nor had I had any pelvic issues of any kind.) Ovarian cysts are common in premenopausal women taking Tamoxifen.

(Already posted this one, but here it is again) http://jjco.oxfordjournals.org/content/35/10/607.f... : "Cysts were detected in 28 of 57 pre-menopausal women (49.1%)"

http://www.ncbi.nlm.nih.gov/pubmed/11728662 : "Out of 32, 14 (43.8%) pre-menopausal and out of 40, 4 (10%) post-menopausal women developed ovarian cysts (P=0.003)"

http://www.ncbi.nlm.nih.gov/pubmed/10021302 : Study of premenopausal women only, study patients taking Tamoxifen and controls not. "Ovarian cysts were found in 80% of the study patients and only in 8.3% of the control patients (P = 0.001)."

http://www.ncbi.nlm.nih.gov/pubmed/8571997 : "Five cysts were detected in postmenopausal women (6.3% of the postmenopausal women) and six in premenopausal women (37.5% of the premenopausal women)."

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC236282... : "Patients still having a menstrual cycle during tamoxifen had a high chance (81%) of developing ovarian cysts"

FastWalker

Has anyone else experienced acne after taking Tamoxifen? Because my face is covered with HUGE pimples. I haven't had acne this bad since my 20s - 20 years ago.

I too had a partial hysterectomy (due to fibroids) and kept my ovaries. Ugh! Didn't realize how common ovarian cysts were in premenopausal women who take Tamoxifen.

Amy9848

Fastwalker, When I started taking the tamoxifen 6 months ago, I too got really bad (almost cystic) acne. It has since subsided. I wash daily with Skinceuticals brand foaming face wash. It was a recommendation from my PS. I also use the Skinceuticals toner, because in my opinion, my skin is much more oily since starting tamoxifen. Both products have helped a ton! Now I just get acne if I touch my face!!!

shelleym1

FastWalker, YES it's because your testosterone is dominating since the estrogen is being somewhat supressed. My dermatologist prescribed me Tretinoin cream and it has worked wonders.

plumster1

Hi all- I have officially been taking tamoxifen for a month. So far SEs have been manageable. My two biggest are kind of curious to me and wondered has anyone else experienced these? First, I have NO appetite and even after eating a very small portion I am full very quickly. I now try to eat on a regular schedule by the clock. Also, acid reflux and significantly popped up. Nothing that a Pepcid can't fix. But I wasn't really experiencing it that much before. Ugh!

L2girl

Summer Angel, thank you for making that list and posting the links as well as summarizing each.

Btw, I don't want women on this board to be afraid of taking tamoxifen because they fear getting cysts. My gyno says cysts are very common (in any women, regardless of tamoxifen use) and as long as they don't cause pain or get too big, or continue to grow, or have signs of cancer, there is no reason to treat them. They'll just continue to come and go, and most women won't even know it. She says they just happen from ovulation.

Stenokim

Amy, I haven't had a period since starting tamoxifen in January of 2014. I had missed a couple the year before, but was usually pretty regular. My doc did blood tests and it came back post menopausal! Couldn't have been an easier transition, never noticed a thing except the lack of period. Yay! I also have no side effects from tamoxifen except occasional calf cramps when I first wake up in the morning. Not bad! Ki

calidancer

If testosterone is dominating wouldn't that increase sex drive?

I'm asking for a friend. 😉