Bottle o Tamoxifen
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Dizzybee,
I am having problems with endometrial thickening as well. It was discovered after two months on Tamoxifen because I had a TVUS due to pelvic pain. My MO took me off of Tamoxifen for about 4 months but my endo still got thicker. The MO put me back on Tamoxifen again and things are still thickening. Now at 2cm so I am having a hysteroscopy with D&C on Friday. Hopefully the biopsy will be okay. If so, I guess I will discuss with the MO and gynecologist how to proceed. I imagine I will stay on Tamoxifen and see if the endo starts acting up again. My MO did say that ovarian suppression with an AI was an alternative we could consider. I would think it should be an option for you as well. I don't really expect the biopsy to be bad. I think the chances of getting endometrial cancer from tamoxifen are really low, like 1% if I remember right, but if it should come back bad, I guess I will be seeing a gynecologic oncologist and go from there
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Well now I'm even more confused. There are two oncologists on the team, and they don't agree. My oncologist is adamant he wants me to have Tamoxifen, the other oncologist thinks it is finely balanced but on balance I should stop it.
So I've decided to carry on until something forces me to stop, I think they'll do TVUS monitoring to keep an eye on things. I just wish I could have an AI instead, sigh.
jpr143 hope your endometrial problem goes away, it's bad enough dealing with breast cancer, we don't need the rest of our reproductive organs giving us a hard time as well.
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Dizzybee---I also had Tamoxifen issues like thickened lining, cysts, etc. I just had them monitor me via TVUS every 6 months. I find them to be very easy and painless. I eventually had a complete hysterectomy and ooph and now feel better than I ever did with my uterus and ovaries!! I am in my early 50s and while not yet menopausal, I'm sure I was headed in that direction. And I like the idea of not having to worry about that type of cancer. And I am actually staying on Tamoxifen for now as I find it relatively "easy" to ease my side effects with exercise, massages and supplements. I'm very leery of the SEs of the AIs so I'd rather keep my QOL for now in exchange for the 1 or 2% risk reduction on an AI.... much less the very worrisome risk of bone loss!
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Dizzybee: Well done on making a decision. It just shows what a difficult decision it was, that the oncologists had slightly different opinions on it. That is good that you will have closer TVUS monitoring of your endometrium.
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Thank you all for your support, I didn't know anyone else who was trying to deal with this issue. I am so glad I found these boards because you can feel really alone when you're dealing with difficult decisions, or just the impact of having a breast cancer diagnosis.
But now I'm happy with the decision to carry on with the Tamoxifen because it's that or nothing, and if I have to take an antidepressant to deal with the mood swings I don't have to be ashamed, I have to do whatever it takes.
Iala1, that's an interesting take on Tamoxifen v AIs, maybe I've made a lazy assumption that the side effects of AIs are better because they're not the scary things, raised risk of DVT, heart attack and stroke, and endometrial cancer. But assuming you don't get those things, as the vast majority of women won't, the quality of life issue is really important. I guess unless you try them all, you'll never know which hormone therapy drug will suit you best.
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Dizzybee---Oh they all have the scary SEs!! Tamoxifen has the blood clots and endometrial cancer and the AIs have bone loss and, according to my MO, the possibility of heart issues. Apparently the AIs can have a tendency to raise your cholesterol levels which can lead to heart issues down the road. He does say all these potential problems are at a "slight" risk but it's all in how you look at the numbers. An average person's risk of endo cancer is 1% and Tamoxifen takes it to 2%. Doesn't sound like much but that's double the average. However, with regular TVUS you can catch anything very early before it becomes a problem. You just have to be proactive and make sure your docs are doing all they can to keep an eye on your health. I have a sister who died of a heart attack 8 years ago at the age of 39! She was overweight, smoked and had all the high numbers but still....it sucks. So I try to be a little more mindful of things that might affect my heart. And I've always been a little wary of things that might lead to bone loss. I figure that's one of the things that would be pretty difficult to reverse, much less live with. And then when I'm told that the muscle and joint pain is way worse on an AI than Tamoxifen, I think "Wait. Let's talk this out before I jump into anything." My BS, who is nationally renowned and in the BC business for 40 years, said to not jump on AIs just because they can give me a 1 or 2% better chance of not getting BC again. He said everyone really needs to consider QOL and weigh the pros and cons and that with my type of BC he'd be comfortable with me staying on Tamoxifen for now. Then my MO said the same thing, and he's a top oncologist, so I'm ok with my choice. For now. I'm always open to new ways of looking at it!
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Docs will never prescribe 10mg because there are no studies to prove its effectiveness. I for one do not believe in one size fits all. However since most docs don't test our hormone levels this is the way it is. Good luck to all....
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Back again.... completely freaked out. I had my estradiol and other hormone levels tested again. My estradiol has gone up over the past year, and it was already high. I do not know why I was expecting it to be so much lower. I guess because my onc keeps saying he wants to switch me to an aromatase inhibitor after 2 years... that is coming up about now. So, a year ago my estradiol was 247 and FSH was 53. Now, estradiol is 294 and FSH is 36, under 40 which is the limit for menopause (should be higher than 40). I know that Tamoxifen can raise the concentration of circulating estrogen.... but I would have expected my FSH to be much higher now. I have not had a period at all in 2 years. I am wondering if I need ovarian suppression? Certainly, that seems a certainty if I want to switch to an AI. If so, I guess I would have to consider surgical removal as I do not like what I have read about the side effects of Lupron and Zoladex.
Anyone in a similar position? I would appreciate some input from some of you who chose surgical intervention over the OS injections. Or, maybe the side effects from the injections are not bad for everyone? I hate being at other crossroad decision where neither path is clear.
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This article just added to my anxiety. The estradiol levels discussed here are sooo much lower than mine. A 41% increase in risk for every unit increase of estradiol?!!!
You need a login to read this but it is free.
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Hi Katcar! After starting tamoxifen my MO had my estradiol and FSH levels tested. They were 160 pg/ml for estradiol and 12.6 U/ml for FSH so he advised OS. My only SE from the shots is some ankle pain 2 or 3 days after. Nothing terrible, but I choose to walk briskly instead of running those days
I also take calcium and vitamin D3 supplements under MO advise.I asked about surgical removal of my ovaries (just to be informed) and my doctor told me is a big no for me, because of my age and the related bone loss and heart troubles.
Maybe you should give the OS a try? You can always stop, right? Best wishes!
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My oncologist had me go off tamoxifen for a month then test hormones. He says you get a more accurate result
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@dtad, thanks for your comment about 10mg Tamoxifen dosage...my MO agrees that there are no studies on AI or tamoxifen dosage and likely that if taking 10mg means that I stay on it for the entire 5 years that is better than taking 20mg and quitting early. Logically thinking, I don't see how we are all given same doses regardless of body weight, fat mass, diet choices, whether ovulating etc. I'm 2 years post menopause (low estrogen before starting pills) and so the only way I make estrogen is adrenals and body fat and what I consume. I'm very strict with my diet + exercise to keep my body fat low as possible and I'm no longer drinking any alcohol (causes estrogen to circulate in blood) so seems like I can take less estrogen blocker-med since less estrogen? IMO, I want to lower my estrogen as much as possible NATURALLY as every drug has it's side effects not only today but years in the future.
Of course no studies to show this as big pharma wants us all to take as many pills for as long as we can because that is their business model and why it's such a big money business!
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Yaugarette, I keep going back and forth on this issue--OS versus Ooph, and it is very confusing. I am so sensitive to medications, but yes, an Ooph is quite permanent. How many shots have you had so far? I am meeting with my Onc beginning of Dec. He is willing to do either option. Is Zoladex less toxic than Lupron? Seems I see a lot of negative reports and lawsuits against Lupron when I search online, but not as many for Zoladex.
Beachbaby, I find that so interesting that your doc took you off Tamoxifen for a month in order to get a more accurate reading. I lowered my dose this past month to 10mg to see if it would help my tinnitus, but I also wonder if that is why my estradiol went higher and my FSH lower.... Ugh. I am nervous to go off completely for a month with that much estrogen circulating around.
I do keep a low weight but I could use more high intensity exercise. I hate anything other than walking and a little yoga. Time to kick myself in the rear again.
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Question re: anti-depressants & Tamo
Hi all, I started Tamo on Nov. 2nd. I was taking Trazedone but stopped after reading how that affects the benefits of Tamo. Now I can't remember what or where I got the document that I was reading on-line with that info. I asked my PCP if she could rx an alternative but all she came up with during the office visit was Noratryptaline - an oldie! She was going to do more research.
I know that I've seen other meds mentioned that some of you are taking that don't lessen the efficacy of the Tamo but haven't been able to find them in this thread (I admit I didn't spend too much time looking back for this info). Those of you on mood/anti-depressants, would you mind letting me know what you're taking?
Thank you so much!
Vicki
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Katcar and others - I too am experienceing spiked estraoil levels - three tests since april, all over 300. My MO is suggesting ooph., but my gyn says she doesn't think it necessary (although she and I have not yet talked about it - GYN and MO talked). Does anyone know if there are any health benefits to keeping ovaries for a 53 y.o. perimenopausal woman? I understand that younger women would benefit, but what about older women?
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VoraciousReader certainly thinks there is benefit to keeping our ovaries for those of us over 50, and she does her research! I will find what she wrote me and copy it back here. Again, the decisions we have to make are just trade-offs, and there are no consistent answers.
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Well, I must have deleted the message. But I recall that she said that the little estrogen our ovaries produce post menopause is heart protective based on studies she read,and that we should keep our lady parts as long as possible and that her doctor agreed with her. She did Tamoxifen for 3 years and OS for 2 years before switching to an AI. Maybe she will see this and chime in.
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There are few antidepressants you can take while on tamoxifen. I started on Effexor, one of the few you can take. I'm on low dose of 75 mg. You can also take 37.5 and it helped tremendously with my hot flashes after my recent hysterectomy and I have fewer crying spells. I think I had to Google it in a specific way to find the list of low, medium and high risk meds that compete with tamoxifen for the same metabolic pathway
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I've just had mirtazapine prescribed for depression and mood swings, though I think it is also meant to help with hot flashes. I haven't had a problem with those so can't say if it helps for them.
Mirtazapine is taken at night because it can make you drowsy, so far I haven't really noticed any side effects, but I'm on the lowest dose, 15mg, the dose can go up to 45mg. I've only been taking it for a week, so it's a bit early to say how effective it is, I was just glad to find a sympathetic GP and to find there are things you can take if you're struggling.
I looked on a UK forum and it seems that mirtazapine is a common prescription for Tamoxifen users.
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Effexor gave me headaches and shortness of breath. As I weaned off, these s/e's abated. I had complained at every appt to my onco and she never mentioned that Effexor could be causing my problems. Instead, she ordered expensive brain scans, lung x-rays, echo-cardiograms, pulmonary testing....all of which I paid for since I have a very high deductible. The real kicker is, she prescribed the Effexor for hot flashes and it never really did much in the way of reducing those. Just sayin'.....
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Hi. I've been having low back, hip, groin area pain 2 weeks before my period during ovulation. It lasts a few days. Never had this before tamoxifen. Anyone else experience this??
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tamoxifen can cause ovarian cysts (benign) in premenopausal women. tell you doctor and hopefully you will be monitored (ultrasound?)
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thanks!! Gonna call my gyno.
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Hi Lala I have been on Tamoxifen for a year and my aches and pains are getting worse. How much turmeric do you take. I would like to try it and see if it helps. Also did you ever try magnesium supplements?
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Hi All:
I have stopped Tamoxifen now off for 1 month and a half after 6 years on it. I had DCIS stage 2 with nipple sparing BMX 6 years ago. No rads or chemo. Tamoxifen was the sole drug I was prescribed after my surgery.
In the past 6 years I had thickening of the uterine lining to the point where dealing with my period was like coming across a murder scene. Eventually a polyp was found via ultrasound when the lining was viewed via sonogram. (Cue hysterectomy plan)
Last month gyn & pcp decided I needed to get an IUD for hormonal treatment to stop the lining from my becoming more at risk for uterine cancer. I stopped Tamoxifen at the time of IUD insertion because GYN said it was known to thicken uterine lining. ONC said it was OK to try without Tamox while we monitored uterine lining (with Plan of a hysterectomy the next step if the Iud didn't help) since I had done my 6 years already on it.
The IUD side effects were awful. I felt cognitive impairment, 15 lb weight gain in 3 weeks* (and I have been at a steady weight all my adult life) and severe irritability, acne, greasy hair, constant vaginal bleeding like an eternal period, bloating, constipation, headaches, dizziness and sensitive vision. Oh, and the whopper - zero sex drive. I was at the point where I was missing work. I felt like an arthritic, crotchety, elderly whale. I was a wreck from the estrogen. I couldn't live that way and had it removed after 3 weeks to the concern of my GYN. She said the symptoms were due to perimenopause.... hmm... Not in my view... Not at that extreme.
Without the Iud I am feeling and functioning better and noticing no more extreme scenario. No period whatsoever... Yet... Well see.
No Tamoxifen for the first time in 6 years has left me feeling horrible joint pain. I still have it even after 6 weeks off it. I don't know yet if intend to restart it but will see my ONC in 2 weeks to get her advice. I'm in my 40s and don't want to feel so arthritic and have researched many others having similar bone and joint problems once the tamoxifen has been stopped. I believe the joint pain is due to withdrawal from the Tamoxifen.
I worry about needing to go back on it for the protection though and may do that despite all this pain. Maybe gi
Perhaps going back on it will make the joint pain better??
I do, however, see now it was the cause of my severe menstrual bleeding and I think it has resolved or at least lessened my need for a hysterectomy. More uterine biopsies lined up as well as sonogram.
To be continued...
Thanks for letting me share my musings...
Thank you all for your story sharing and advice.
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Hi ladies, I was on Tamoxifen for 3 months last winter, but then was switched to an AI plus monthly injection, because new MO felt it would give me better long term results. Two months ago I was taken off those meds because of severe joint/bone pain. I am seeing MO on 12/12 and I know he wants me back on Tamox, but I am concerned about it's SE's. Plus, the joint pain has not gone away in these two months, like MO indicated it would. I did okay on Tamox for those three months, but I'm curious...for those who have been on it long term, do the SE's build over time? This was the case with the AI..okay at first, but then kept getting worse.
Whitedove, I'm sorry for everything you have been through. I'm also in my 40's, but feel so much older. I hate it!! I don't have any advice for you...just hugs!
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Occovegirl---I take the Gaia turmeric at the recommendation of my naturalist doc. He said he's visited the place it's made in NC and it's produced very cleanly. This is how he said to take it......
Start with one capsule a day and take for a month. If you see an improvement in your pain level, then continue on that dose. If you don't, then increase to 2 capsules a day for a month. If that helps, then take that dose for a few months then try weaning down to 1 a day. If 2 a day doesn't help, then it probably won't work for you and you can try another brand of turmeric but be sure it has the black pepper in it.
Just for full info....he also suggested I take ginger with my turmeric every day. He said both are good anti-inflammatories so both will help the joints. I try to take a good brand like Nature's Way or something and I take 1 capsule a day.
As to the magnesium, yes I do take it as well. I actually take 2 different types. One is SloMag, which I buy at Walmart. It's magnesium chloride and does a great job with constipation. I take 2 tablets every morning and no longer have all the bloating and constipation issues from Tamoxifen. I also take Kal Magnesium Glycinate 400 which I buy off Amazon. I take one capsule of that each night which helps with joint and muscle pain and also seems to help reduce my hot flashes.
I also take 5000IU of Vitamin D and a good fish oil that has at least 1000mg of DHA/EHA both of which my doc said would help with joint and muscle pain from Tamoxifen (as well as the good fish oil helps to keep the possibility of blood clots at bay). Between all of these, I do really well. I exercise every day and while I definitely have more pain than i did before Tamoxifen, it's totally doable. And I'm thinking because my pain is less I find that I now sleep very well which I believe then helps me feel better overall.
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white tulip - I did Tamoxifen for two years, then tried two AI, but the joint issues were too severe, so I switched back to Tamoxifen in May. Just recently, after having switched seven months ago, my joints have started to settle down. I'm 56, and I do have osteoarthritis in both knees. I'm not sure if I'm getting used to T again or what, but even the hot flashes are reduced. Counting down the months, sixteen left, unless I get talked into ten years.
Question, who here is doing ten years? What was the reasoning for it?
My onc says ten based on familial cancers, but I'm not convinced. Going to try to get BCI test.
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farmerlucy--when I was diagnosed in 2012 my BS had just returned from the San Antonio symposium and said the new guidelines were 10 years on something. Oh joy. But this past Sept at my 4 year checkup my MO said he's going to do the BCI test at 5 years and based on those results either continue for 5 more on Tamoxifen, swap to an AI for 5 years or take me off everything all together. He said he's doing a lot of the BCI test these days and feels it's totally worth it for the information it gives in helping to decide what to do. I'll probably ask to stay on something (preferably Tamoxifen) for 10 just because it gives me more peace of mind. And I do pretty good on it now. I feel that after a couple of years the SEs seemed to subside. Or I just got used to them! You've had ovary removal and a very low oncotype score, both of which should help reduce your recurrence risk. I'll be curious to see what the BCI test tells you. Let me know if you get it.
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Thanks lala1! Great info. I'm getting all my ducks in a row, hope she'll order the test.
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