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Bottle o Tamoxifen

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Comments

  • FastWalker
    FastWalker Member Posts: 38
    edited September 2015

    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
    loral Member Posts: 818
    edited September 2015

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

  • 6doggies
    6doggies Member Posts: 66
    edited September 2015

    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
    Beachbaby65 Member Posts: 39
    edited September 2015

    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.

  • FastWalker
    FastWalker Member Posts: 38
    edited September 2015

    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
    loral Member Posts: 818
    edited September 2015

    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
    Professor50 Member Posts: 86
    edited September 2015

    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.

  • FastWalker
    FastWalker Member Posts: 38
    edited September 2015

    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
    shelleym1 Member Posts: 111
    edited September 2015

    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
    willowreed84 Member Posts: 31
    edited September 2015

    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
    CarolynAnne Member Posts: 17
    edited September 2015

    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
    susanwmcg Member Posts: 36
    edited September 2015

    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
    shelleym1 Member Posts: 111
    edited September 2015

    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
    summerangel Member Posts: 182
    edited September 2015

    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
    Amy9848 Member Posts: 15
    edited September 2015

    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
    L2girl Member Posts: 58
    edited September 2015

    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
    Amy9848 Member Posts: 15
    edited September 2015

    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
    6doggies Member Posts: 66
    edited September 2015

    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
    summerangel Member Posts: 182
    edited September 2015

    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
    FastWalker Member Posts: 38
    edited September 2015

    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
    Amy9848 Member Posts: 15
    edited September 2015

    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
    shelleym1 Member Posts: 111
    edited September 2015

    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
    plumster1 Member Posts: 100
    edited September 2015
    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
    L2girl Member Posts: 58
    edited September 2015

    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
    Stenokim Member Posts: 76
    edited September 2015

    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
    calidancer Member Posts: 17
    edited September 2015

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

    I'm asking for a friend. 😉

  • jojo9999
    jojo9999 Member Posts: 52
    edited September 2015

    I stopped periods when i started tamox, for 6 months, then all the side effects went away and my period returned for 2 cycles. Now hot flashes are back and the period is gone... can't figure this out, but based on blood tests, i am still perimeno (52 y.o.)

  • Anniemomofthree
    Anniemomofthree Member Posts: 370
    edited September 2015

    Hi All - I have been on Tamoxifen for four years and three months (including a four month break). I am scheduled to get off this in 9 more months. Woohoo! i jave had my period about once a year for these past years. Each time I have been rushed in for an ultrasound and biopsy. All negative. I finally was switched to an AI last December, after repeated tests that said I was post menopausal. I immediately had three periods in Jan, Feb, and Mar. I was then switched back to tamoxifen in April. I just got my period yesterday. I hesitate to call my onco, as I know I will be asked to go in - again - for an ultrasound and biopsy. This bleeding has acted like my period...cramps, usual look and feel. I am 48. I am a triple positive and was diagnosed as a IDC stage 1A in Nov of 2015.

    Question - is anyone else on this rollercoaster? My onco wants to take me off as he believes the risks for further use of tamoxifen outweighs the benefit. Looking for insights...

    Thanks! Annie

  • shelleym1
    shelleym1 Member Posts: 111
    edited September 2015

    plumster, i had horrible indigestion at the beginning. Probably the first month was the worst for my stomach. Pepcid did wonders and now I don't have issues in that area at all.

  • gemini4
    gemini4 Member Posts: 320
    edited September 2015

    hey Annie -- I'm not quite on the roller coaster you're on, but my irregular periods stopped about six months in to taking tamoxifen, but then I got a period 15 months later. I also had the ultrasound and even a d and c -- all normal. My MO definitely wants me to switch to an AI once it seems I'm definitely in menopause; the plan is to check in January.

    Since your MO really wants you on an AI, has ovarian suppression been suggested? I believe that's the only way to effectively be on an AI if there's any chance of not yetbeing fully post-menopausal.

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