Bottle o Tamoxifen
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Luckily, the only side effect that hasn't seemed to rear its ugly head is a decrease in sex drive. If anything, it has gotten stronger.
Maybe I'll get my MO to write me a script for the Effexor and just try it.
Jeanelle
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CAS4 thanks for the tip on the mag supplement. I've been having alot of muscle pain in the legs. Trying to work it out at the gym but not really helping. Pain started with Tamox I think. Will check it out on Amazon.
Scottie
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Hello ladies. First time posting on this thread. I have had my tamoxifen filled for over a month, buy haven't taken a single pill. I keep finding excuses not to start. I was only weakly ER + and my MO said he didn't think it would have a lot of benefit. That Herceptin is much more important to me. He did want me to try the tamoxifen though. Just scared!
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CAS4- thank you for the information and ways to prevent Tamoxifen SE. I am interested in the magnesium from Amazon. Is it pill form or liquid? Thanks!
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For those of you interested in magnesium supplement....try SloMag from Walmart. It was recommended by my naturalist doc. I take 2 tablets in the morning and it keeps my leg pains away as well as keeping me regular. You may need to adjust dosage as needed but be careful of too much as it can cause very loose stools. It's about $10 for 60 pills and has a $.75 coupon printed inside the box. SloMag and Vitamin D are probably the 2 best supplements I take!
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I popped on to check in. I had my annual transvag ultrasound on Tuesday. It was also in prep for my tubal ligation (having the bulk of my tubes removed). While I was there I told the tech about some weird incidents I've had where I was bloated and very tender to the touch in my whole pelvic region. I also felt like when I'd sit down, everything was pushing up into me. I got a call today that the ultrasound showed a cyst. They had me go do a blood test for CA 125 (cancer antigen). The lab runs the test daily, so hopefully I'll hear something tomorrow and it's no big deal.
I'm feeling like maybe the fact that I already have this surgery scheduled is an odd little blessing in disguise. Maybe they'll remove a little extra if needed.
No one has told me to stop my tamoxifen prior to my surgery.
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I'm having surgery in April, I stopped last week...........
US National Library of Medicine National Institutes of Health
Tamoxifen is a selective oestrogen receptor modulator used in pre-menopausal oestrogen receptor positive breast cancer patients as adjuvant endocrine treatment. Increased risk of venous thrombo-embolism with the use of Tamoxifen is well known from published literature. This risk further increases in patients undergoing surgical procedures of high risk involving prolonged period of immobilization, before withholding Tamoxifen treatment in the immediate peri-operative period should be considered as a risk reducing measure. In the absence of nathertionally agreed guidelines on the safe duration for stoppage of treatment in the pre and post operative period without worsening cancer prognosis, operating surgeons and individual trusts have adopted their own guidelines based on individual experience. From the available evidence in the literature on the VTE risk assessments based on age, operative procedure and pharmacokinetics of the Tamoxifen drug we would like to propose a working algorithm for selecting the right patient group and safe treatment stoppage durations. These proposed guidelines are formulated taking all the risk factors of VTE, operative risks, pharmacokinetics of the drug and chemotherapy risks into consideration. With this guidance, we aim to help surgeons across different specialities in the decision making process through a structured evidence based approach.
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annie, the magnesium supplement I take is called Natural Calm (by Natural Vitality, it comes in raspberry-lemon and something else) it is a powder. It comes in a cylinder or it comes in packets for traveling. I just add it to warm water and chug it right before bed. It does what it needs to do overnight. I guess I like it because I don't like taking so many pills. Plus it tastes good and helps me relax to sleep.
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Well Hello Everyone. I haven't been on this site it quite a while….I think since I started Rads December 1st!! Well, that's done and all is well.
I put off Tamox as long as possible and finally started on February 1…..but first I had to change my bad attitude about it because I knew if I started the Tamox with the attitude I had, it would suck and I would probably die :-) (No, really, I thought the shit was going to kill me immediately if I took it and I WAS NOT GOING TO TAKE IT…EVER..NEVER.NEVER.NEVER)
Well, here I am one month later….still kicking (the covers off at night) but not much else to report. I was already having some light hot flashes so it's nothing new. I think they are a little more intense, but not terrible.
Only other thing, and I'm not really sure that it's related, is that my mouth is dry as hell. I carry little hard candies with me to suck on all the time! Anyone had dry mouth? Also, I did read that Tamox can cause GI upset, so I take it at night right before bed and haven't had any issues.
Got my positive attitude from Pontiac Peggy :-) Thanks Peggy !
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katcar0001 - thanks for the heads up on curcumin vs. Tamoxifen.
My MO is well aware I take curcumin. What I do is what I do with other meds that can't pass through the liver at the same time. I am on half the standard dose of Tamoxifen to start with. I take it at bedtime, a few hours after curcumin. So far no problem.
I do want to share this nugget from my Endocrinologist re: thyroid replacement hormones. He advised that Tamoxifen may necessitate having to increase dose of my Tirosint and Cytomel-SR, as the Tamoxifen can interfere with proper assimilation of the thyroid hormones. So head;s up on that.
Also, for those taking magnesium - a heads up from my rheumatologist. If also on calcium supplementation, ratio is 2:1 (in other words if taking 1000 mg calcium daily, then daily intake of magnesium would be 500 mg). He actually upped my magnesium to 500 mg.
So just some other things to ask your respective docs about should any of the above apply to you.
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ChristyJ--I had alot of the same symptoms as you all last year. 5 weeks ago I had my hysterectomy and most of those issues are gone. I would get very bloated every night where my stomach felt hard and like it was pushing up into my lungs. Sometimes I would feel like I had to concentrate on getting a full breath in. I also had nausea and dizziness and some horrible burping. I never had acid reflux but the burping would pop up and go on for an hour or so then not come back for a few days. Same with the dizziness. But the bloating was almost every evening and would make me feel really crappy. I had a TVUS back in April that showed cysts, fibroids, enlarged uterus and thickened endo lining. I also had the CA125 test which was normal and did a biopsy which was normal. After a couple of opinions, we decided to monitor every couple of months. By Aug, my cysts were gone but not the other stuff. Doc let me go till Dec and TVUS showed cysts were back and bigger and the other stuff was getting worse. We decided on hysterectomy. I was ok with it since I'm 51 and looking at menopause anyway and this would decrease my risk of BC returning. Now at 5 weeks out I have to say I feel pretty damn good! Surgery was a breeze, especially compared to mastectomy. I did it early enough that I could have it done laparoscopically. By day 10 I was feeling mostly normal. I am really glad I went ahead and took it all including ovaries. And I have to agree with you, this could be a blessing in disguise. Usually they can tell by the ultrasound if the cyst is anything to worry about so I'd bet your CA125 will be fine. Even if it isn't, you're finding it all early so you should be good. All my docs kept saying my symptoms were just perimenopause but I knew it was something else. I think it was my cysts. Google ovarian cysts and bloating, nausea, etc and you'll see lots of info about it. Good luck!
Also, definitely stop Tamoxifen before surgery....at least a week, preferably 2. I had 4 different docs tell me that. And don't forget to stop most everything else. Vitamin C, Vitamin E, ginger, fish oil, aspirin....anything else you might take that can cause bleeding. I stopped everything but magnesium and Vitamin D and probiotics.
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lala1-Thanks for all of the info. The nurse told me that my CA 125 levels came back slightly elevated, but that my doctor would talk to me about that during our pre-surgery appointment on Thursday. I didn't get a number. I asked if I should be concerned, and she said that he didn't seem overly concerned. I have a strong feeling that since he'll be in me already, removing my tubes, he'll take the cyst and/or ovary if needed.
I asked them about discontinuing the tamoxifen, and they said 4 days prior/2 days after, but I'll stop it sooner.
Oddly, I got my period this morning, and it's pretty heavy. I haven't had any significant bleeding other than a tiny bit of spotting since late November.
On top of everything else, I have a rotten cold/cough that I'm fighting off so I can go through with the surgery 3/9.
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I found this:
Many other conditions also can cause an elevated CA 125 level, including:
- Diverticulitis
- Endometriosis
- Liver cirrhosis
- Normal menstruation
- Pelvic inflammatory disease
- Pregnancy
- Uterine fibroids
For these reasons, doctors don't recommend CA 125 testing in women with an average risk of ovarian cancer.
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When I first started Tamoxifen my hot flashes became more intense. Now they have completely disappeared and I'm cold all the time. Has anyone else had this problem? I haven't had a period since July. My hormone levels were tested in November and showed post menopausal.
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mommato3-I have had no hot flashes but am always chilled. Granted, winter this year has been brutally cold but this is over and above the norm. Thank goodness for my electric mattress pad. I am post menopausal.
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My body temps are all whacky! I had a ton of hot flashes and night sweats. The hot flashes have mostly gone away, and the night sweats have reduced. I am cold more often now, but I'm blaming it on the horrid winter! ;-)
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Hi MagicalBean-
By chilled, you mean after a hot flash or out and out on its own? If it is on its own, then I experience this too. Usually definitely shortly after my morning dose of Tamoxifen. I take my Effexor at the same time though; it could be from that as well, but I don't think so. In the afternoon, supper and bedtime, I take some more psychotropic medications an still have some chilled periods. Hard to figure out what is causing what exactly.Be interested to hear what your answers are.
MarieBernice6234
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I am also on Tamoxifen and Effexor and my temp is all out of wack. I get so cold and then at night I get warm ups. Sometimes I am so cold my teeth chatter and I can not warm up. Not sure what med is doing this.Anyone else have ringing ears on these meds?
I have surgery to remove my ovaries and fallopian tubes as well fix a hernia on Monday. My OBGYN said I could stay on Tamoxifen and they would give me blood thinners so I called my MO and he told me to stay off it a week before surgery and a amonth after it and then he would switch me to an AI.
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Hello everyone. I am new to this board, as I have just finished my RT and begun my Tamoxifen. It has been only 4 days on for me. I am wondering when reading your posts when the SEs began? So far I feel okay, but I am sure it takes a good month before it is through one's system completely. Any feedback/ suggestions will be appreciated.
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MarieBernice-This is out and out on it's own. I was taking Tamoxifen and Effexor at the same time but switched Effexor to night time. I was having trouble staying asleep. It's so hard to tell what is causing these SEs. I am 67 and sleep issues come with getting older too.
The chills come and go through-out the day but seem to more intense mid morning, late afternoon and middle of the night.
ndgrrl-my ears are ringing all the time. But they did this prior to Tamoxifen.
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I'm willing to blame everything on this weather!
my Dr thought I was going through perimenopause because of the symptoms I'd been having for the last three years. One of which was warm flushes throughout the day. I'd been wearing short sleeves in the winter because I was too warm. Now it's the opposite. I can't seem to stay warm. I even sit under my electric blanket during the day. I didn't know if it was a SE of Tamoxifen or being post menopausal or something completely different0 -
Annie88 - I also just started Tamoxifen 4 days ago. While I know it's really early, I haven't experienced any SEs yet. I did read earlier in this thread that many people first start noticing SEs around the 3 month mark. My MO told me that most of her patients who experience SEs see them within the first month or so and that they usually subside a bit after a few months. Not sure what to expect at this point, but keeping my fingers crossed for minimal SEs. Hope the same for you!
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fralaliso-I hope we are in the clear for the SEs! It is good have someone starting w/ me. Not that I would wish tihis on anyone. We can compare notes
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HIMagicalBean -
Unfortunately, I can't switch the times for my Effexor, because I take it in the morning and at supper time. Tamoxifen is taken in the morning. Your times of being cold sound like mine as well, except not so much in the middle of the night.
MarieBernice6234
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MarieBernice-I've read that several people get chilled with this med. I hope it continues during the hot months. I may be able to save on A/C.
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Love that thought! It's already hot where I live.0 -
I wonder which med causes the chills the Effexor or the Tamoxifen. I too get chilled and also have night warm ups.0 -
I'm only on Tamox and I get the chills too. But I also get warm flushes.
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Hi ndgrrl and MrsDarcy -
Ndgrrl - do you take Effexor as well? Yes, I wish there was an easy way to tell. I hope that it keeps up this way too. If it just makes you temperature sensitive which means in the summer you might become warmer in the summer. That wouldn't be so good.
Christina
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Hi ladie,
Hope you are all well.
I have started noticing a new side effect (not sure if it is from Tamoxifen). My fingers (the bone and knuckles) feel like are getting sort of rusty, it happens at night and sometime during the day, I have to make an effort to stretch my fingers. This is the best I can do to explain it. I didn't have it during chemo or when I started Tamoxifen. I am wondering if it is because of tamoxifen or something else.
Anyone else experiencing the same thing?
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