Bottle o Tamoxifen
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That remark of yours has just made my day!
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(The remark I'm referring to is lala1's about a broken give a s***tter).
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DeltaLady---I'm thinking I should have it on a tshirt!!
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Are there any pre-menopausal ladies here taking Tamoxifen withOUT ovarian suppression? (no Lupron, Zoladex, or oopherectomy)0
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I've been on and off of Tamoxifen for 4.5 years without lupron, zolodex, oopherectomy. My period keeps coming back. We discussed lupron/oopherectomy to switch to an aromatase inhibitor since I've had tolerance issues with Tamoxifen. I've been on now since Feb.
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Musosgirl- I am on on Tamoxifen without ovarian suppression. I am going to discuss OS with onc at my appointment next month- he wanted me to wait until after exchange surgery before starting OS shots. I am going to try it and if the side effects aren't too bad, switch to an AI since it is apparently better for ILC. I haven't had too many SEs- night sweats, hot flashes and joint pain that comes and goes so not sure I want to switch to AIs and have other SEs- I hate making these decisions-
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Musosgirl-I was pre menopausal prior to chemo. I haven't had a period since after my first chemo. I will not have any OS unless my period decides to come back. My last one was in Sept.
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Me. Last period was mid Aug, after chemo #1. Although MO said no period doesn't things not working.
& I haven't have any hot flashes for the last 2 weeks. Weird...
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Musosgirl -- I just started tamoxifen (yesterday). I met with my GYN today to discuss ovary removal. I will be on tamoxifen until the surgery.
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I guess I am talking long term planning. Wondering if anyone is taking Tamoxifen, regular current cycles, and not planning on doing OS?
Or if OS is standard protocol with Tamoxifen if you are having regular periods?
Everyone keeps saying the benefit with Lupron is that it is "reversible" where a hysterectomy is not. I feel like my choices are 10 years Lupron (which my GYN and pharmacist advised against) or a total hysterectomy. I am NO where near menopause. Just making sure Tamoxifen withOUT OS is not an option. My MO never said either way even though I asked.
I am still curious for me, but I am also asking for a friend (not HER2+, but ER+, grade 3, younger even than me, and same MO) who did not know OS is normal during Tamoxifen. Want to make sure I am telling her right.0 -
I am on Tamoxifen w/o ovarian suppression. I haven't had my period since my 3rd chemo in December 2014. In December, my MO is going to do some tests to see if I am actually in menopause. If so, she will switch me to Arimidex
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On Tamoxifen since June 1st, no other meds. No periods, though I have Mirena IUD. Hadn't really had a period for 2 years before chemo aside from maybe a little spotting, though I could tell I was ovulating and could tell when I should have been bleeding but wasn't. On chemo ovulation stopped after the first round and I could feel that it started back again 6 weeks later. Debating having the Mirena IUD removed at my annual GYN exam in late Aug/early Sept since I am strong ER and PR+ (95% each) . Oncologist doesn't think I need to have it removed - which seems odd.
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Hello Musigirl,
Ive just turned 40 and I've been on Tamoxifen for 10 1/2 months now and not doing any ovary suppression. My periods have been regular and I've not yet seen though should probably soon see my PCP about monitoring of my uterine lining.
I imagine when I speak to my oncologist in Novemeber we will discuss it but if all is going well it will stay status quo for years to come.
Good luck.
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Musosgirl, tamoxifen without ovarian suppression is absolutely a possibility; in fact, it was the standard of care for all ER+ BC for many, many, many years. The SOFT study introduced the notion that OS or oophorectomy might help with long-term DFS (disease-free survival), but it's most effective in women under 35 who combine the OS with an AI inhibitor. All of this is not without its side effects, however, and quality of life is important; the SOFT study was explicit about that fact.
Over here, I'm feeling the Zoladex in ways I really don't like--this includes ovarian pain, which I haven't had since I last ovulated before chemo last year--and I'm going to think long and hard before I get another shot of it. I was doing really well on tamoxifen alone. I've made an appointment with my PCP (next month) and plan to see a gynecologist before making my decision.
It's a tough call. 2-3% overall reduction in risk against side effects? I'm weary of this crap, and I'm seriously considering rolling the dice and just continuing to take tamoxifen.
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KateB79---Seems that you are pretty "up" on the results of the SOFT and TEXT trials right? I have a question you, or someone, may be able to answer. I am on Tamoxifen, and have been for over 3 years. I was premeno at diagnosis. No chemo or rads and continued to have regular periods with Tamoxifen. Then 1 1/2 years in I started having endo changes and cysts so we decided on total hysterectomy with oopherectomy. This was done Jan 2015 so now I'm postmeno. My docs have raised the idea of an AI. My MO said think about it and my BS said since I'm doing very well on Tamoxifen why change things for a small reduction in recurrence risk and an increase in SEs. I'm looking for numbers for what he's telling me. I do really well with numbers and percentages. So you're saying it's just a 2-3% reduction? I read a ton of articles and am thinking that this number might be for high risk? Do you know if it's correct that the reduction is nominal if you have low risk (i.e. Stage 1, negative nodes, etc) BC? I've run the various numbers on the LifeMath calculator and get the same numbers whether I put in Tamoxifen only or Tamoxifen followed by AI but I don't know if those numbers reflect SOFT and TEXT. I'd like to stay on Tamoxifen. I have some issues but have found supplements that work for them. I just don't want to give up a pretty sizeable reduction in recurrence just because of possible SEs. TIA.
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I've been prescribed Tamoxifen with no OS. The recent studies seemed to show adding OS to Tamoxifen was only beneficial for those at high risk for recurrence. Typically younger women who had chemo due to the more aggressive nature of their BC and who were not thrown into chemopause as a result. For older women with low Oncotype scores the benefit of adding OS to Tamoxifen seems to be negligible. Both my BS and OC are of the opinion that an AI would be "overkill" in my case, but the problems I'm having with Tamoxifen are making me think switching to an AI sooner rather than later might be a good plan.
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I am taking tamoxifen without OS. My periods are very regular. I will continue on Tamoxifen only. MO cited QOL and bone health as reasons not to start straight on AI with OS.
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lala1, I second what others are saying, here. I've read both the SOFT and the TEXT studies, and the evidence suggests that the most important things to consider when deciding about OS/oophorectomy are age at diagnosis (younger women have worse outcomes), whether chemotherapy was given (if it was, OS is more clinically relevant), and the pathology of the cancer.
The reason for my MO wanting to do OS with tamoxifen, later transitioning to OS with an AI, is because I have several high-risk factors: I was 36 at diagnosis and having clockwork periods; my cancer was HER2+; my cancer was grade 3; my cancer was multifocal (surprise tumor! yay!); my cancer was 80% ER+ and 80% PR+. It's all in the pathology, as far as most oncologists are concerned. The HER2+ is really the kicker, as far as oncology is concerned, but we also want to shut down the estrogen. It's a fine line to walk.
I did hard-core chemo, which put my ovaries to sleep; I haven't had a period since last August. Apparently this is good news, as women whose periods were suppressed with chemo have better outcomes and a lower risk of recurrence. I'm still at (relatively) high risk for recurrence, all told--it's something like 15%, even after rads and such--which explains her motivations.
If I had even one fewer risk factor, I would not have allowed even one Zoladex injection. We'll see whether or not I get the next one, or if I fly with tamoxifen as my copilot and see what happens.
That said, given that you had an ooph/hyst, you're a candidate for an AI. Post-menopausal women typically "do better," aka "have fewer recurrences" on AIs, but I totally agree with you about QoL. Tamoxifen has been around for years and years; we understand those SEs better; ultimately, it's a very personal decision. I wish you all the best in making that decision!
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lala. . .lol! They surgically removed my give a Sh**ter too. I'm not getting another one. Life is certainly different but I have taken control. On another note, the pharmacy switched my Tamox brand again. I'm going to make them order Watson from now on. I have fewer side effects. I'm also trying 10mg timed released melatonin with some success.
Scottie
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Joined the Tamox group today by popping the first pill. I'm almost 52 and haven't had a pd since last Nov. Due to having bilateral osteoarthritis of my knees and hips can be problematic, I'm unable to do the Lupron + AI MO wanted me on. She saw my struggle getting up and initially walking and said that route would cripple me. So I'm bummed that for my #s and chance for recurrence that I'm losing 4% protection. I'm 5'6" and weigh 224 lbs. So being overweight like this increases the chance of it coming back alone. So I'm depressed about this. I really wanted to give it my all but I can't be cripped either. I live alone to boot so I have to be able to take care of myself.
What is the average time to see SEs?
What are the most common? They list everything possible.
What do you about joint pain/stiffness if you can't exercise? Best supps?
I read ginger is good. What dose do you take?
Thanks!
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Hi I posted this on the generic brand question but thought I would try here as well my CVS uses activas brand formerly Watson any experiences with this brand? Scottiesmom don't know if it has changed but am interested in your experience with Watson
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Hi, everyone!
I've been on Tamoxifen since April...I started after I'd recovered from my mastectomy.
Is there anyone else in here who was only weakly ER+? I was diagnosed when pre-menopausal, and was also HER2+, which was the bigger concern. I did chemo + Herceptin and Perjeta...still have Herceptin infusions through late October. But on the ER+ front, I was a little surprised when my MO informed me I'd be on Tamoxifen for years. No one had warned me about that until after my chemo and mastectomy, and I had thought that because my cancer was only weakly ER positive, long-term hormonal treatments probably wouldn't be necessary.
I count myself relatively relatively lucky on the side effects front from the Tamoxifen; reading through a few pages of posts here, I see that a lot of women have pretty intense SEs with it.
The primary things I've noticed are more frequent hot flashes, muscle and joint stiffness and pain (which I've had ever since chemo), and weight gain. The weight gain is really pissing me off. Since chemo ended, I've been working so hard to get/keep my weight down, since that's a risk factor for cancer. I wasn't very overweight to start, but my weight had crept up maybe 10-15 pounds over the 8 years since I had turned 40.
Anyway, so now I'm eating very healthfully--loads of veggies and salads, whole grains, almost no meat or chicken, a glass of wine maybe 2 or 3 times a month, very little sugar or simple carbs, etc. I'm doing walking & running cardio 4-5 days per week for 45 minutes. I'm doing everything right to lose weight, or at least not gain it. And yet my weight is slowly creeping up!
So frustrating. But based on comments here, I take it that weight gain is a common side effect. Does anyone know if it continues to go up the whole time one is on Tamoxifen, or is there a slight weight gain that eventually plateaus?
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PlanB58. . .Activis is what I got this month and a couple of months ago instead of Watson. I'm not convinced it's the same because I have more SEs on Activis. I need to talk with my pharmacy and maybe try Teva if Watson is no longer available.
Scottie
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MDW my weight gain seemed to plateau at 45 pounds. my SEs started at about the six month mark.
After 2 out of my 10 years, I am done. My docs will be greatly unimpressed. I want quality vs. quantity of life. It isn't happening for me on tamoxifen. AI will do no better for me, I am already in treatment for osteoporosis brought on by chemo. I had my ovaries removed last October, hopefully that will be enough benefit. That and losing the extra weight I gained.
I have seen many posts about the SEs being different when the pharmacy switches them on you. Pretty sure it has to do with the fillers they use.
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Plan B58
I've been on Actavis' T. for a little over a month.
Some joint stiffness, that's it.
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RobinLK
I am sorry to hear about your experiences on the Tamoxifen, but it is certainly no surprise.
I would like to recommend Susun S. Weed's book, "Breast Cancer? Breast Health! The Wise Woman Way."
Her work is extraordinary and should be required reading for all of us who would like to pursue complementary medicine, especially herbs.
Blessed journey to you.
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So two weeks ago my heart started acting funny--fluttering a lot, shortness of breath, and periodically my blood pressure spikes (always comes down quickly but I have never had high blood pressure). My MO thinks my port may have slipped and be causing trouble and it is coming out in 4 weeks. The only other new thing is the Tamoxifen--any ladies hear have similar SE on it? Just trying to rule out one or the other...0
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Anyone have vision issues on tamoxifen??
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Musogirl: That sounds similar to the symptoms I had when I had a blood clot in my heart. Are you seeing a cardiologist? I had to give myself Lovenox injections twice a day for about 12 weeks and it resolved after about a month. In my case, it was caused by the port.
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Robinda: I don't know if it's Tamoxifen related... but I am due to get new glasses...last time was almost 4 yrs ago!
So I asked my MO about all the supplements mentioned here. She's ok with all of them. (vitamin D, melatonin, magnesium, turmeric, ginger). But I think i might hold off from them for now. My HF stopped 3 weeks ago, & it seems the constipation is better now (guess my body had adjusted to the higher fiber intake now (salad for lunch almost daily + green smoothie for breakfast)
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