Bottle o Tamoxifen
Comments
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RF, you've peaked my interest with your mention of ritalin use for brain fog. I would love to break through this fog, and regain my former level of executive function skills.....mainly be able to undertake and complete projects that now feel too difficult to stick with. I'm not thrilled with the idea of throwing more pharma at these side effects, but the trade off of regaining my productivity is pretty appealing.0 -
Dora, I also hope that you can access a more attentive and caring MO. Feeling that one's MO is "with you" on the journey to healthy living is really important. One should not need to become symptomatic to gain responses from their MO. I wish you luck with this!0 -
Regarding brain fog - I was so tired of it ,that I went to a Naturapathic Dr., who specializes in cancer, to deal with it. He said that the "fog" has something to do with the way Tamoxifen effects the adrenal glands ( and adenelaine). I did not completely understand what he was saying, but am doing a NeuroAdrenal Basic panel to see what is going on and take it from there. I really don't wan't to take Ritalin. I will let you know how I make out. I will go back to see him in a few weeks to get the results. I too, was embarrassed at work by my lack of cognitive clarity!
My pharmacy switched brands and I didn't know it. They went to Watson and I really had a few weeks of terrible mood swings and brain fog. I checked with them and found out about the switch. I am back on Mylan and doing better.
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I am on my 3 month of the tamoxifen and debating whether I should get a hysterectomy. My mom passed away at the age of 62 with stage 4 ovarian cancer. Would I still have to take the tamoxifen once my ovaries are removed??? If so , how come??
Any thoughts
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Sallt, the body still produces some estrogen even in the absence of ovaries. But you wouldn't have to worry about ovarian cancer if you had them out.
Lenn, I thought the Mylan brand had been discontinued! If you get a chance sometime, could you ask your pharmacist whether it's now back in production?
Lacey, my friend who took Ritalin got a noticeable benefit from it at first, then didn't. She stopped taking it, but felt better than she had before she took it. It's possible her brain fog was radiation-related, since it seemed to come after she did rads. It took something like 8 months post-rads for her to feel sharper. She's on an AI, so her fog is certainly not from Tamoxifen.0 -
Sallt - having your ovaries removed (known as an oophorectomy) is a very personal decision and not one that can be backed up with concrete evidence at this point. If you have an ooph, you would be able to continue on tamoxifen or switch to an aromatase inhibitor. AIs are only for post menopausal women because they stop the body from creating estrogen from the aromatase produced by body fat and adrenal gland. Tamoxifen blocks the estrogen(regardless of the systemic source) from fueling the estrogen receptors (ER) on tumor cells so pre- and post-menopausal women can take them, but AIs have a lower recurrence rate in studies. Even though I chose to have a full hyst/ooh, I decided to take tamoxifen (at least at first). Instant surgical menopause at 43 was daunting enough, I didn't want to eliminate the last traces of estrogen from my system right away. Have you spoken with a genetic counselor? I always bring this up, because it can be so helpful in making these major decisions. You could ask about the possibility of only having your tubes removed, as it is postulated that many cases of ov ca start in the tubes. A hysterectomy takes the uterus - you would only do this along with an oophorectomy if there was a good reason. Doctors generally don't want to remove organs unnecessarily so you should discuss all of your options with a genetic counselor (because of your mom's diagnosis) and maybe a gyn/onc. I decide to have my uterus, tubes and ovaries removed even though I didn't have any know cancer-causing genetic mutations because my dad's mom died at 39 of "liver" cancer and I personally had already had colon at 30 and breast at 42. My genetic counselor didn't really know what to tell me to do, my MO thought I was overreacting and my gyn/onc totally agreed with me. The bottom line is no one can guarantee your outcome so you just have to make the best decision you can with the information you have at the time. I know you're not expecting a definitive answer, but I wanted to share my experience. Surgery, radiation, chemo, endocrine therapy - there are so many variables that we have to live with. Once you've made your decision and acted on it, try your best not to second guess it ever again. Good luck!0 -
Anyone dealing with ringing in the ears?0 -
My oncologist during my treatment was amazing and she just left the medical center I like. The new onc is nice nd all but I still feel tossed aside now I'm in remission. Maybe that's how it is. It still is bothersome. I need to look for a new onc as well as a pcp. My pcp didn't even want to see me because I haven't seen her in over a year. I was like, hello I had cancer. It's so frustrating.
Sallat
You can have a hysterectomy but I believe you'll still be on tamoxifen because they treat you based on when oh were diagnosed. But again, every doctor and every women is different. I will have my ovaries out in about 3 years. I carry the BRCA 1 gene so I must do it. My onc told me I'll continue tamoxifen for 10 years, maybe just maybe switching to the post menopause drugs at the time. I'm in no rush, just trying to find the normalcy I really miss.0 -
Also
I had chemo brain so so bad. It was horrible.0 -
Cognitive, shmognitive.........that's what it is too. SHMOG! Can't remember anything. Go in another room to get something, can't remember what I came in for. Can't concentrate on a book or even phone conversations. Living by my calender, which I am writing EVERYTHING down in!
The up side......depression is MUCH improved since I doubled my dose of Effexor.....fatigue is slightly better but still hanging around a bit, since I can't sleep very long. That and joints in my fingers killing me are about the only SE from Tamoxifen I'm experiencing.
Do the SE's come and go? Get worse? Just started my second month..........only 119 mths left to go!!!!!!!!
Kimberly0 -
Thanks everyone....for your input regarding the removal of the ovaries....It was suggested by my genetic councellor and I've been referred to an obgyn next month so we shall see what he thinks. Ovarian cancer is the silent killer and with my moms history I think the decision will be easy. Estrogen comes from fat didnt know that.......well I'm a big girl does anyone have any pointers to lose some weight...please!!!
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ummmmmm..... I've only been on tamox for less than 2 weeks... Yesterday I couldn't figure how to get a gas pump to work (took me an embarrassing amount of time, until I finally read "press here"), this morning I stood at an elevator at the clinic for a while until I noticed the large sign that said "for staff only", and just now I found a half a block of cheese in the utensil drawer - next to the refrigerator. This couldn't be the tamox, could it? Or am I just getting stupid?! I'm really scaring myself!0 -
Sophia- I have been doing a few weird things myself - Today I found the box of spagetti noodles I had just purchased in the refridgerator that is next to the cupboard. Tamo has me not sleeping so I been blaming my forgetfulness on that. I have been on Tamo since Sept 25th.
How is your sleeping?0 -
Sleeping, what's that? Haven't had a good night's sleep since taking Tamoxifen. The hot flashes are horrible. All night long it's covers on covers off. I think the brain fog is a result of lack of sleep. It's going to be a long 5, maybe 10 years on this.
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I'm in my fourth month of Tamoxifen. The night sweats have been getting perhaps a little bit better, but still not sleeping well at all.0 -
Interesting article found on lower dose tamoxifen
http://www.newsfix.ca/2013/11/21/lower-dose-of-tamoxifen-could-be-just-as-effective/Will talk to my MO about this !
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Ndgrrl, I'm glad I'm not alone! Lol! I'm sleeping ok - typically wake up once to throw off the covers, sweat, and pull them back up again. I can live with that. Today I'm freezing - I have goosebumps all over - the inside temp is 72 and we have a wood stove i can stand by. I don't feel like I'm getting sick at all either. Weird. Now where are those hot flashes?!
If this is as bad as it gets, I can do it. Just hope I don't screw up something important with this absentmindedness though!0 -
Sophia, I find it odd that I get cold too sometimes. Thanksgiving I crawled on the couch under two quilts and it was 72 in the house. Like i told my hubby its like my temperture gauge is stuck. No hot flashes that day,and I ended up sleeping for about 14 hours- I was tired!!!
Anyone else get a cough after taking Tamoxifen? I am going to have to pay close attention to see if that is what is really causing my nightly cough. I take my meds in the evening.0 -
Ndgrrl, I haven't had a cough from Tamoxifen, but I have heard of people developing a cough after radiation--could yours be from rads?
Pooh, thank you for that link! I have a friend who has quietly lowered her dose by half and this article, while very preliminary, is promising.0 -
Hi Ndgrrl,
While trying to find some real info on Tam. I reviewed the info here
http://www.drugs.com/sfx/tamoxifen-side-effects.html
Cough is a possible side effect. I would talk to your doctor soon.
I emailed the manufacturer Teva and requested a list of every food, drink, vitamin, supplement, and topical product that I should not supposed to consume or use while taking tamoxifen. I got a the regular PDF of info that comes with your prescription. Not helpful at all. I learned nothing new from it and cannot understand why they can't provide a list of things they know we should not be using. Honestly I am angry and depressed about the whole thing. I still haven't started taking it yet. I just feel so uninformed.0 -
JWoo, I'll ask my MO about this when I see her in a couple of weeks. I asked her before and she waved it off, except for St. John's wort and certain Rx antidepressants. I think the huge list of interactions might be educated guesswork based on properties of those substances and their behavior in the body, not based on actual research about how Tami does interact with them. But I will take her the same list and ask her what she thinks.0 -
JWoo---I asked my MO that question last week at my appointment. He said the only things I DON'T want you taking with Tamoxifen is extra Vitamin E or Soy. Everything else he either said was fine or he didn't know. Not much help!
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I am supposed to be starting my 5yrs of tamoxifen this week and I am really concerned about it. I hear the side effects are uterine cancer and joint pain. I'm wondering if its really worth taking at all. I was diagnosed with DCIS and had surgery in October. I am single and 35 and I don't want to lose my uterus just yet or enter early menopause. What's been your experience? I'm wondering of these SE's don't outweigh the benefits0 -
Butterfleyez, everyone has different experiences with Tamoxifen. Your "normal" risk of uterine cancer is about 1% and with T it's about 2% - not really big in the scheme of things. Whether you get joint pains or hot flashes or any of the other nasties is a total lottery. It won't put you into menopause, but could mess with your cycle while you're on it. That's the thing to remember - the overwhelming majority of the SEs are only there while you're on it. If it gets unbearable, you can weigh the risks/benefits and decide to stop. My sister in law and my sister had absolutely zero SEs, but I have hair loss, of all things! Like I said, it's a lottery, either way. I'd advise giving it a go - you may be one of the majority who are lucky ones. Don't forget that the folks who post about problems do so because they have problems - we are a minority.0 -
So far I am doing okay with Tamoxifen. Started 10/2. At first a couple hot flashes but they seem to have tapered off almost completely. I have three friends who are on it or were on it. Two had no symptoms and one got off because the bloodwork showed changes in her liver function. Sounds like a great majority have no problems. And as was stated, lots of people who have no issues don't come on here to report how well they are doing. It is quite natural that when things are not going well you seek out help. Good luck!0 -
Actually butterfleyez, I've heard the risk of uterine cancer is 1/1000 normally, 2/1000 on Tamoxifen, so even lower than that. If you hear the risk doubles, it sounds bad, but it goes from a tiny risk to still a tiny risk. Also, I think younger women are less likely to have their cycles disrupted--that's a question for your MO though. I don't think Tamoxifen is a drug to be scared of. There are a lot of side effects you hear about, but nobody has all of them! It's a powerful weapon in your fight.0 -
butterfleyez...I have been on TX since Feb and have to say I'm having very few problems. Had some joint/muscle pain at night for a while but I added a 3" foam topper on my bed and started taking ginger and tumeric for inflammation per a holistic doctor is saw. And I now take .3 mg of melatonin to help me sleep because the TX had me waking up around 4am for an hour or so. The melatonin is great because supposedly it helps prevent BC. I do find my nails break a little easier but you can supplement with Biotin for that. Otherwise, I'm doing really well on it....knoick on wood and cross my fingers!! Give it a try....you can always stop later.0 -
Hi all, New to this forum. Took my first dose of tamoxifen on Sunday, December 1, my younger sister's 54th birthday and look forward to taking my last dose on the eve of her 59th. No SE at all so far but will chronicle any observed changes here. Hoping for smooth sailing and wondering how soon people see SEs. I'm particularly looking forward to the weight loss. 😁. Mimi.0 -
thanks so much lehala and runfree. That really helps to put things in perspective. Sometimes I think I can research a little too much. I will give it a try at least. If it gets to be too much I can always stop. Ill def be checking back here through the journey0 -
RunFree - you are completely correct - I got my numbers confused! Thanks for picking that up
Butterfleyez, there's a great group of ladies here to answer any questions you have along the way0
