Bottle o Tamoxifen
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Ok so just asking went for the colonoscopy on Thursday Got asked the weirdess questions by the nurse before the procedure though....do you own or rent, do you have cuts or bruises, are you depressed or ever want to harm yourself, do you have implants, are you in pain if so have you talked to your doctor.......seriously what does this have to do with a colonoscopy?!?! Has anyone else been asked these type of weird questions??
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mstrouble - I have had a colonoscopy and even though it is not a pleasant experience I don't see what in the heck whether you rent or own has anything to do with this. The other questions are also pretty bizarre. Seriously, the test is done on the rear. What are they going to do - try and puncture an implant?
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Mstrouble, it could be the hospital is conducting a short-term demographic study of their patients (which they should have told you about), or some new initiative to cast a wider net for public health or safety issues that people might ordinarily not reveal until there's a crisis. I have noticed lately that I often get asked "do you have any pain?" even when I'm visiting a doctor for something unrelated to pain. I think I've read about research finding that just asking that question will often flush out information that the patient wouldn't have thought to discuss otherwise, which can help uncover more subtle public health issues that can too often go under the radar. Seems to me it could lead to some silliness, like "Mrs. Smith came in with an ear infection, and sure enough she said she had pain!" Or some condescension, like "Mrs. Smith came in to have a mole removed, but our brilliant pain question revealed that she was really sick and didn't know it." But I think it's humanely intended. Similarly I would guess the question about cuts & bruises could be looking for domestic violence--unless they are just concerned about introducing infection through an unseen cut--and the self-destructive question is presumably looking for people who are dangerously depressive but wouldn't have come out with that. The own/rent question sounds a little different, more like background research. However, they should have told you why they were asking such questions, and after I'd been fasting for 24+ hours, I would definitely want them just to get the heck on with it.
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Runfree, I've been dealing with a rash on my irradiated skin which comes and goes. My skin is darker where I had radiation and the rash exactly follows the rads line. It started about 6 months after starting Tamoxifen. My onc told me to take up to 4 Zyrtec (10mg) a day. Plus I slather my whole chest with coconut oil and the itchy parts with an aloe-based cream. I think my histamine tolerance is lower with Tamoxifen, so when I have a rash I stop drinking wine or beer as they make me itch more. Hope this helps and the leg rash responds to Zyrtec soon.
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I had a bilateral MX with DIEP reconstruction back on July 23, 2013. My diagnosis was great and they said I required no further treatment as the cancer did not spread to my lymph nodes. Dx 07/23/13, IDC, 1.1cm, Stage 1, 0 nodes, ER+/PR+, HER2-. The onocologist is suggesting adjuvant therapy of Tamoxifen. I have been doing some reading and I am scared to take it. I have already had cancer twice in my life. The first time at age 18 Hogkins Lymphoma and the treatment of that cancer led to the cause of the breast cancer. The extreme radiation I received over 23 years ago put me in this situtation today. Any suggestions on yay or nay to the tamoxifen?? I do not want to end up with cancer again. I have beaten it twice. Age 40 and premenopausal.
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Take the tamoxifen. I was scared to first go, didn't take it and two years later got a second primary in other breast. I haven't had any problems with it. The serious side effects are rare.....about like getting hit with a bus....it works. At almost a 50% reduction for cancer returning, I'd play those odds at a casino.
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Colonoscopy funny: Before my procedure, the Dr was attempting to get a heart beat reading with a stethoscope on my chest. He seemed concerned until I mentioned that he was trying to get a heartbeat through my D size prosthetic boob.
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NRM, the risk of endometrial cancer from Tamoxifen is tiny. The risk of DVT is tiny. The other dangerous risks are tiny. The only thing that scared me at all was the quality of life side effects, of which I have had none so far. Granted, it has only been a few days, but like bluepearl said, it's all about the odds.
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NRM - A lot of us on this thread do have side effects but those who have few if any rarely post here.
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Hi,
has anyone experienced nausea with Tamoxifen?? I finished CMF in May and started tamoxifen in June. took it for 2 months and then stopped for my tissue expander exchange surgery and now been back on about 3 weeks and the past week or so am very nauseous. I was taking it first thing in the morning on an empty stomach but since have switched to after meals. I recently started taking it at night to avoid being nauseous at work. but i am still very nauseous.
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NRM,
I wanted to chime in here on this because I was terrified too of taking tamoxifen.
I have been on it for three months now and I have minor side effects. The worst was the first two months I had worse PMS or at least I imagined it was worse. It has pretty much stopped my periods. I still spot but thats it. But I'm 49 so I knew it would probably do that. Also I have occasional leg cramps but exercise seems to offset that side effect. Really for me for the benefit vs the side effects it hasn't been bad.
I think back and wonder why I agonized so much. But who knows, I'm only three months in.
Hope all the input helps you make your decision.
Best of luck.
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NRM - Take Tamoxifen. Especially if this is your second go around with cancer. Most have few side effects. I have been on Tamox since Jan 2011 and the only side effects I have had are numerous uterine issues. You don't hear about them often and I believe my case is one of the rare ones. Had multiple biopsies, D&Cs, polyp removal, vaginal bleeding (postmenopausal) which all lead to a hysterectomy. Again, my case is rare. I have to agree with lahela it's all about odds and the odds are better for not getting it again if you take the meds.
kcmanis - I was started on Arimidex and then switched to Femara - both of short periods of time and both due to nausea. I was afraid to take Tamoxifen for the same reason. What I did was for the first few weeks I split the pill and took half in the morning and half at night. That seemed to work but it was a pain in the butt splitting the pills. So, I decided to again try it in the morning with an 8oz glass of milk. NO nausea. As my body adjusted to the medication I no longer had to drink the milk. Just a suggestion for you.
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Hi all. I tried posting the following in another discussion thread, but didn't get much of a response (probably because that thread wasn't specific to Tamoxifen). So I'm trying again:
Is anyone interested in talking about the impact of Tamoxifen on their sex life? I know this isn’t a big/important issue in the grand scheme of things, but it’s been on my mind and I’d love to hear others’ experiences. I’m 47 and have been on T about 5 months. My sex drive hasn't gone away, but it’s definitely been taken down a big notch – which makes me feel sad, but not surprised (this was one of my fears about T). My husband is as in to me as ever, but I really have to make a big effort to try to get in the mood. And it never feels as good as it used to. I always knew that once I hit menopause I’d probably have these issues, but I didn't expect to be dealing with it in my 40s (although maybe I should have, it's not like I'm far from 50). I know I should just be glad that I’m an early stager, that my treatments were effective, and that there’s a drug I can take to help keep BC from coming back. But it just kind of sucks. Thankfully, my husband has been very understanding – so far anyway. I’m really hoping it doesn’t have a negative impact on our relationship. But how can it not? Any thoughts or advice?
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Pam7712
I just turned 49 and was having normal periods before tamoxifen. Now I'm barely having periods. I could already tell my sex drive was getting low before tamoxifen but since I've been on it for the last three months it's exactly as you describe.
My husband too has been very supportive but I worry too.
I'm like you and feel grateful mine was caught early.
Some women on this thread mention their sex drive returning after about six months on tami. Maybe others will weigh.0 -
Heidihill, thank you for your story. I did manage to see a derm today because my brilliant MO pulled some strings. The derm didn't know exactly what was going on, but he had a much better immediate sense of it than my NP did. He tested me for scabies (negative), thinks that whatever started it, it's now morphed into folliculitis with staph. He is suspicious of the Tamoxifen because of the radiation recall dermatitis I had on my breast, although he agrees it's odd that the skin on my legs is freaking out in a very different way. But he said that even if this is some multi-faceted reaction to Tamoxifen, that doesn't necessarily mean I should go off it. I'm going to try antibiotics and a prescription wash and antibiotic soap for a week, and if it isn't better, we'll biopsy it and take another look at the Tamoxifen interaction. I forgot to ask whether I should stop taking Zyrtec. I really want to stay on Tamoxifen. It has moderated my appetite, which is great, and other than occasional "warm-ups" I have no other side effects--aside from maybe this skin thing--and I really want the preventive power it brings. That's my thoughts for you, NRM. Going from a 1/1000 chance of endometrial cancer to a 2/1000 chance, which I believe are the numbers, is technically a doubled risk but still a very, very tiny one in the context of the risk of BC returning.
Pam 7712, I haven't had this symptom myself but my heart definitely goes out to you. I would encourage you to talk to your doctor, as many doctors as it takes. There might be something they can do or you can do. More oncologists are taking an interest in quality of life issues, and this is an important one. Sex is part of the normal use of your body and you deserve to keep that normal use intact if at all possible. And since I am turning 50 next week, I am invested in believing that this is NOT just to be expected as we approach the half-century mark.
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Pam7712 - I am 58 and 5 years post menopausal. Sex life? Sex Drive? What is that? I have forgotten. Tamoxifen has cause so many uterine issues for me, so much so that I had to have a hysterectomy in July. My husband is supportive and it takes all my effort just to go through the motions. All my desire is gone. It was not like that before this stupid cancer. When I went through meno I still had the desire and the whole nine yards. Not now! Grrrr!!!!
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I've decided to start tamoxifen after close to 1 year of thinking, plus making sure all are good before starting. Before starting tamoxifen, I already have bone pain, eye problem and uterine issue. So long as tamoxifen does not make things worse, I'd be happy. And I guess if tamoxifen causes more issue, I can stop any time.
Question for all. My onco asked me to go back in a month after starting tamxifen to do blood test. Any idea what will she be testing? I forgot to ask her when she mentioned the blood test.
Also, she said to avoid plant estrogen. I googled and found that lots of things have plant estrogen eg soy, flexseed, ginseng, barley, apple, carrot, rice and many more. If I were to avoid all food with plant estrogen, I dont think I'll have much choices of food. Did I misunderstand what she meant?
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My MO checks my blood at every visit, every 3 months. He also told me to stay away from soy products, black cohosh and other estrogens. I think they are more concerned about the supplements we take and not the actual product.
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I really don't understand the phytoestrogen thing - some doctors say don't eat this or that, some say you can eat what you like. As I understand it, Tamoxifen doesn't stop me producing estrogen, it just stops my body using it to feed cancer, so how much harm can I do myself eating a bit of tofu or whatever if the Tamoxifen is doing its job?
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guineamom - I think most MOs are concerned about the use of soy supplements vs food products. It is like everything else, if done in moderation it isn't necessarily a bad thing. And of course, each MO is different in what they want us to avoid.
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Try CoQ10. Recommended by my MO for leg pain and cramping. I have not had a foot cramp since I started taking it.
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I was scared too, I stared at the bottle on my night stand for two weeks then took 1/2 the dosage for a couple weeks then started the full 20. Its been since June and I think I'm adapting pretty well to it. The only thing I notice is joint pain and I haven't been back to the MO for a while now so it will be a topic of discussion when I see him next. When I heard that chemo, radiation and tamoxifen could all cause cancer I thought WTH, but they assure me the benefits outweigh the risks, that the worst consequences of these treatments are rare.
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Hmmm, re: the soy products, I am recently horrified to see that several of the vitamins I take have soy lecithin in them. I am assuming that this is one of those "not good for us" soy derivatives, so am wondering which brand of vitamins you ladies take that may be clear of soy altogether. I am mainly concerned about the multi vitamin and the CoQ10, since those are the ones I have yet to find with no soy in them. Thanks for any info!
Also, my itching skin is driving me a bit crazy, and especially when I try to capture that elusive sleep that Tamox seems to steal from me already. I am hopefully seeing my MO next week and am thinking about asking if I can take can a Tamox vacation for three weeks like I did last Spring, which resulted in all of my SE's leaving for a time. I'm sure her response will be for me to instead try an AI which I just can't see doing given my ongoing osteoarthritis issues, but has anyone ever heard of someone taking intermittent breaks from Tamox to manage the SEs?0 -
RunFree, I developed folliculitis during rads and was instructed to wash the area with Hibiclens. Could your skin issue be a case of rads-induced folliculitis gone wild?
Hope you find relief and that it clears up very soon!0 -
Gemini, thank you! I will look for it. What did the folliculitis look and feel like? Was it only on your radiated skin? I am not actually convinced that's what I have. My radiated skin is better now thanks to the steroids, but the raised pink part of the rash on my legs is more extensive than ever.
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Hi RunFree, yes it was only on the skin affected by rads. It was a rash of tiny, rough bumps that itched like crazy. Since I was undergoing rads, itching was forbidden (though I fantasized about taking a loofah to it!). I would do the Hibiclens washes twice daily with cold water to take the edge off. Fortunately it cleared up. But yours does sound a bit different since it has spread to your legs.
So sorry you are going through this! :-(0 -
Thank you! My rash is not tiny rough bumps. Hmmm. What's on my legs is different from what was on my radiated skin and has gone on to a second phase quite different looking from the first, and there's at least one other kind of spot that I have in a few places elsewhere that does not itch. But none of it sounds like what you're describing. If you managed not to scratch that skin, you are a better patient than I am!
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Hi again Run Free- sorry about your skin issues! I had folliculitis during rads. It felt like a mild case of shingles ... Little pumps, very red. I just used an aveno bath wash on it and stopped using lotions and creams altogether and it cleared up pretty fast. The RO nurse told me it was an infection of the hair follicles.
Good luck figuring it out!0 -
Thanks Lenn, very interesting. I've taken lots of Aveeno baths but not recently, so maybe I should try that again. My rash doesn't look like the pictures of folliculitis online and doesn't match yours either. I suspect I'll have to try again with the derm I saw or another. Next move is a biopsy, though I'm not sure what he'd be looking for.
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I have taken tamoxifen for two months already. No side effects yet... I hope it stays that way. I take the first 10 mg in the morning with food and the second in the evening with my dinner. My MO said that some women tolerate two doses a day better than a single one. I have gained some weight but this is because I started to eat too many carbs again. I am back on a low carb diet and I have lost a few pounds already, which makes me think that I am on the right track to get my weight before breast cancer.
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