Bottle o Tamoxifen
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hi all,
I'll be joining the tamoxifen train soon, in about a month. So many of these symptoms people are reporting seem related to hormonal fluctuations and high estrogen. I had a complete hysterectomy two years ago and spent two years trying to find hormonal balance with estrogen. Oddly enough, once I stopped my estrogen patch due to this mess I felt tons better (except I can't sleep).
So will tamoxifen throh me back into hormonal upheaval? As far as I can tell tamoxifen blocks estrogen uptake on breast cells but it also must on brain cells since drugs like celexa help allievate hot flashes. And tamoxifen seems to increase bone density and help with cardiovascular health (all things estrogen does) so would it be that the estrogen that can no longer bind to the breast is floating around causing women high estrogen and fluctuating estrogen issues? Joint pain and muscle tightness are often high estrogen issues, as is fatigue and weight gain.
I think I read somewhere that tamoxifen actually increase blood serum estrogen levels?
Im a bit nervous about taking it I have to admit. I finally feel good after several years since stopping my estrogen patch (go figure).
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Hi all - I've been on Arimidex since Dec 2006 but need to switch to Tamoxifen due to decreasing bone density. I discovered a study done last year that proved Tamox is rendered ineffective unless you sleep in TOTAL darkness - no light coming under the door, LED displays - nothing. I found this link that gives suggestions to help Tamox work:
http://noumagazine.org/is-tamoxifen-working-for-yo...
Has anyone else heard of this? I asked my onc a few months ago & they acted like I was crazy. Still haven't made the switchover as I'm scared it won't be doing me any good....
Julie
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I also read that having two cups of coffee while on tamoxifen reduces your risk of cancer returning even more. The coffee seems to help tamoxifen work better. But considering my dr didn't mention either of these I'm going to assume they probably need more studies done.
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My opinion is it seems like SE are worse as time goes on specially starting the second year and beyond.
I stopped taking tamox after 2 1/2 years . To many SE for me to just ignore. Eye vision started getting blurry
Insomnia , Sex hurts, Hot flashes, Weight gain, Joint pain the list was getting worse and worse.
I chose to stop 6 months ago !! WELL guess what , ALL SE went away I have NO issues at all anymore.
yes the fear of recurrence is there but when you take tamox you still have fear of recurrence so for me I chose quality of life and very happy and content with my decision.
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I just started to wear a sleep mask because of the question of light with Tamox. My twin sister is a night nurse and had been trying to get me to wear a mask at night (just because she loves it, nothing to do with breast cancer). She highly recommended a mask by Tempurpedic. It is expensive (about $40). I have had it a little over a week and really love it. It is contoured, kind of like a ski mask. This seals around your eyes so no light gets in. If you look into a mask, a flat mask will not completely block all the light. I am sure there are other sleep masks that are also built like this. Absolutely no need for black out blinds or anything else so if it helps melatonin levels which keeps breast cancer away, this is an awesome, luxurious fix!
I may give them out for Christmas this year!0 -
Oops! I forgot to note, there is a study on Breastcancer.org that refers to a few studies on light/Melatonin: http://www.breastcancer.org/risk/factors/light_exp0 -
I started taking Tamoxifen three weeks ago as well. My blood pressure has definitely dropped since taking it. I have been lightheaded, dizzy, short of breath, headaches, etc. My oncologist even had me go through a CT Angiogram yesterday to rule out blood clots. All checked out fine. I stopped taking the Tamoxifen temporarily two days ago and already feel better. Has anyone else experienced low blood pressure? If so, does it eventually regulate?
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My blood pressure has been increased recently and I'm not sure if it is from stress and anxiety, or Herceptin. I didn't know that Tamoxifen could affect blood pressure.
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I hope you are all having a wonderful Saturday/!
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today is my second day on tamoxifen and I'm experiencing pain around both ovaries. Has anyone else experienced this
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4pink, I've been on tamoxifen for 18 months with few side effects except occasional calf cramps in the morning and occasional ovary crampiness. My doc said that's normal on tamoxifen. I have noticed they seem to be lessening. It's nothing horrible, just something you know that's there. Good luck! Kim.
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CAmom; I also read about coffee + Tamoxifen and found the following information on the NIH (national institutes of health) web site.
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I love coffee, so any excuse to have 2 cups a day I'm all over it :-)
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Totally on board with the coffee too! Time to bring down our wedding-present espresso machine.
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I just love studies that agree with how I live my life - 1 cup first thing each morning--- walk dog---2nd cup, then ready for rest of day or day of rest!
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Yay! on the coffee my Onc and naturapath said no more than 2 cups though.
All in moderation.
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4pink101, I had pelvic pain and pressure with tamoxifen. I've been off of it for two weeks and still have some pain, where my ovaries are. I need to schedule a yearly exam anyway, guess I'll go ahead. Tamoxifen has been known to cause this type of pain (although it doesn't seem to be a common SE), it sometimes causes ovarian cysts to form and endometrial thickening as well.
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While sleeping in darkness is no doubt ideal, I am a little skeptical about the claims that light significantly interferes with tamoxifen's effectiveness. If that is the case across the board, I would think that we would be seeing greater incidences of recurrence, as it seems in our modern world that most of us are sleeping in rooms that aren't pitch-black (with light in bedrooms coming from street lamps, the moon, night lights, digital clocks, televisions, etc).
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I'm with you, Gemini
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Me too Gemini.
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My pelvic pain hadn't improved much since stopping tamoxifen two weeks ago (although the pressure has reduced) so I went in for a pelvic ultrasound today. I have two ovarian cysts, one is very large! I've never had a cyst before, nor have I even had cramps before, so I'm absolutely positive they were caused by the tamoxifen that I only took for six weeks. The doctor said that cysts are no reason to stop tamoxifen, of course. I need to go back in 8-10 weeks and see if they've resolved on their own.
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SummerAngel---I also developed ovarian cysts while on Tamoxifen. They weren't huge but did give me pain sometimes. I pushed for a TVUS and found not only the cysts but also a thickened endometrial lining, fibroids and an enlarged uterus. My docs did some watchful waiting via TVUS every 2 months. While everything did get better at one point by the 8th month of watching all parts started going bad again. I'm 52 and my doc said enough is enough. He didn't want me taking care of this once "something that was nothing became something that was something". So total laparoscopic hysterectomy with both ovaries removed in Jan. I've developed hot flashes since then (never had them otherwise while on Tamoxifen) but that's really it. And I control them pretty well with iCool. And best of all, my MO is letting me stay on Tamoxifen for now since I don't have any bad SEs. You can continue with Tamoxifen but must keep a close watch on all going on inside.
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Hi everyone,I am new to this site. I do have a question and i most like was covered already. I tried to look over best i could but i did not see it asked. But i am on tamoxifen have been for about a year to a year and a half. I was not sure if this a side effect of tamoxifen or just my body coming off chemo but its been almost a two yrs sense the chemo. I have had increasing bad leg cramps mostly just located in my right leg. I have also had tingling in my hands off and on. I have already talk with my oncologist about this but he believes the cramps are dehydrating but i drink plenty of water and i have started to try things like powerade but thats seems to make it worst.
So i am thinking of stopping that during working out. I am wondering if anyone else has had anything similar to this?
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Hi Luna,
Welcome! The tingling (neuropathy???) is most likely related to chemo. I escaped the chemo bullet but my mom did not. She still has numbness and tingling in her hands and feet five years out. But the leg cramps, definitely tamoxifen. I've been on tamoxifen since May 2013. The leg cramps started immediately and have continued to date. I take 500 mg of magnesium per day to help with the cramping (It does help. If I don't take it, I get the cramping. My onc also recommended tonic water which contains quinine but I couldn't stand the taste. Good luck!
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Luna - Talk to your MO about Gabapentin. I had the most painful leg cramps that would bring me out of bed. The Gabapentin fixed that, and I have no side effects from it. I started at 100 mg 3x a day, and thru trial and error ended up at 300 mg 2x a day. Changed my life.
I also have neuropathy in my feet and some in my hands. From what I understand there really is no help for that. That is from the chemo, for sure, and especially if you had Taxotere in your cocktail.
Debbie
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LaLa, I corresponded with the Nurse Navigator at the cancer center and I told her about the muscle cramping and associated tears with exercise. She said she looked it up somewhere, and there was nothing about Tamoxifen and cramping (!!!!!!!!) This is absurd, it's a well known side effect. (doesn't inspire confidence!!!) So, I think I am not going to get any help there, I believe the health care professionals are sort of in denial about the symptoms, or, as others have said, offer another drug. I have had it with drugs.
Personally, over time, I have had several tears or issues with my muscles, and I also exercise a lot. I have started being more careful about "warming up", but honestly, I am not sure that is going to help. someone here felt it was the lack of estrogen, I am not sure if it is that or something the tamoxifen is actually doing to change the composition of the muscles. : ( I am going to look up if the AI's also have the issue of cramping. If yes, I will believe it is lack of estrogen. If they do not, then I will believe Tamoxifen is doing a number on our muscles because of something in it, not just lack of estrogen. At this point I am like a revolving door with the Orthopedic office. This is very annoying because exercise is extremely important in preventing recurrence.
I have stopped taking Tamoxifen, and will re-evaluate in a month. I felt I needed a break. I have been on it about 6.5 years, so, I feel a break is okay at this point. I hear what Ang is saying above - at some point it may just not work anymore. I know the ONC will want me on AI and I am really not wanting to because of bone loss issues. She said, I don't care what you take, as long as you stay on something for 10 YEARS. ugh!!! Anyway, I'm off it now, and I have not noticed much of anything different, but I think it's been like a week, so it may be too soon to tell. Maybe I am still detoxing.
About SLEEEEEEP. I tried Melatonin and it had to opposite effect, it kept me restless all night. BUT THEN, my husband heard about L-Tryptophan (the turkey coma stuff) and I got pharmaceutical grade at Whole Foods, BlueBonnet brand. It is fabulous! It stimulates the production of both Serotonin and Melatonin. We are both sleeping better and generally, less irritable in general. I guess I just need to make my own Melatonin! I read the reviews on amazon, and it seems several other people who had issues with taking Melatonin had great luck with L-Tryptophan, so that is an option!
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What do they base the % of "rare" side effects on? Do they use only reports from doctors? If all these doctors are saying that various side effects are NOT from Tamoxifen, I would think those percentages are off by a long shot.
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When googling around, there are some research studies out there that report percentages of SEs, I assume they talk to real people, and compare to the general population. But who knows. !!
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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
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Another article promoting moderate coffee consumption....
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