Bottle o Tamoxifen
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Thank you NormaJean65. I just finished my treatment and I think everything is the cancer coming back. I am pre-menopausal. I am 43. I am petrified as I have 3 year old twins. They are my world and I can't imagine not watching them grow up .... So, I have days like today where I flip out.
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I have been on Tamoxifen since mid Oct 2013 (5 1/2 months). My worst se is dry eyes - got so bad I ended up scratching the surface of both eyes. I like to wear contacts, but now only can wear them about 1/3 of the time I used to, and am always using drops. I have night sweats which wake me, but I am able to fall back asleep quickly. Once and awhile I will have a hot flash during the day, but they seem to be increasing. I had some joint pain, but that goes away with exercise and it seems to be getting better. I am constipated and will be very bloated at times, which is my second biggest se complaint. I never had a problem before. I was nauseous the first week I started, but that quickly went away. My nails are now brittle, but hair seems ok (been taking biotin).
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ROAREUS.....just sent you a PM.
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Hi ladies:). I am one month into Tamox and my SE is not being able to stay asleep at night. I am taking biotin, vitamin d, calcium, omegas 369 and going to start msm this weekend.
I wonder if it would help others to post our vitamin/supplement regimens (how much per day, how often, etc). Perhaps this type of list exists on here somewhere but we could create a little one here ? Maybe even write in any or all (or none) SE's.
.. just a thought ..
:0)
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I'm all for sharing knowledge!
SE are dry skin, brittle nails, slow hair growth (not sure if it's from Herceptin - finished last month), vaginal discharge and constipation. And what I want to dub "cold flashes". Every evening around 5:00 I start freezing and just can't get warm. For once, I'm looking forward to summer . . .
I take a probiotic and Vit D3. I've been adding Vit C during winter months but will probably stop as we approach summer.
I have a friend who brought me a "trace minerals" mix that I'm debating. It's supposed to help your body recover after chemo.
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roareus, I've been on tamoxifen for three months with no side effects except no period. I'm 48 and premenopausal. No complaining here. My MO says there's no truth to the not getting hot flashes and tamoxifen not working. She says 70% of people get no side effects, and those people who don't get the flashes you don't hear from often, myself excluded.
. Hope I continue to be lucky and that you are too, and that everyone else's SEs go away.0 -
I've been on tamox since the beginning of November 2013. At the beginning I seemed to have very few side effects. Now, my hair is thinning, I have some warm flashes during the day but they are not too bad, have some night sweats and trouble staying asleep and have some joint pain. I started taking biotin to see if it helps with the hair thinning, and switched my down comforter for a silk one. The night sweats are better, but I still can't seem to stay asleep. I will need more time to see if the biotin helps. I already exercise and walk quite a bit, so not sure what else to do for the joint pain, general sense of tiredness. And, I had one period after starting tamox and then nothing - thought that was great. Then on this past Friday morning, one arrived. I was so ticked off!
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After listing my SEs for my MO, she said that it appears that I am very sensitive to hormonal manipulation. Never had heard that phrase before, "hormonal manipulation."
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I am 48 and premenopausal, and so far my only SEs are spotting, irregular periods, and a stuffy / dry nose every day since I started taking it in nearly 3 months ago. I have some joint pain, but I had problems with that before ever starting tamoxifen. I walk 4 miles every day and have changed to healthier eating, but I think the tamoxifen is making it harder to lose weight. It is going very slowly.
I also went to pick up my prescription today at target, (they finally got a shipment in), but even though the MO made it for 90 days at a time, my insurance only allows me to get 1 month at a a time. But at least I got some!
Good luck to everyone.
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Ditto McKatherine I have all those SE'S too, and tiredness........0
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I started taking Tamoxifen at the end of September. I was nauseas for the first couple weeks but that went away. I got really hot at night and night sweats were keeping me up so the doctor put me on Effexor which helped a lot. I also have some joint pain and headaches every now and then.
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My SEs include: joint/muscle pain only at night, weight gain, bloat, brittle nails, night sweats but not hot flashes, irregular periods and crushing fatigue in the afternoons. I recently started having issues with nausea and slight dizziness....but more of an sense of electrical buzzing in my head. MO said sinus problems and sent me to ENT. ENT said maybe and gave me nasal spray and nasal rinse kit. Helped some. But after extensive research I found this list:
35 Symptoms of Perimenopause
- Hot flashes, hot flushes, night sweats and/or cold flashes, clammy feeling
- Irregular heart beat
- Irritability
- Mood swings, sudden tears
- Trouble sleeping through the night (with or without night sweats)
- Irregular periods; shorter, lighter periods; heavier periods, flooding; phantom periods, shorter cycles, longer cycles
- Loss of libido
- Vaginal dryness
- Crashing fatigue
- Anxiety, feeling ill at ease
- Feelings of dread, apprehension, doom
- Difficulty concentrating, disorientation, mental confusion
- Disturbing memory lapses
- Incontinence, especially upon sneezing, laughing; urge incontinence
- Itchy, crawly skin
- Aching, sore joints, muscles and tendons
- Increased tension in muscles
- Breast tenderness
- Headache change: increase or decrease
- Gastrointestinal distress, indigestion, flatulence, gas pain, nausea
- Sudden bouts of bloat
- Depression
- Exacerbation of existing conditions
- Increase in allergies
- Weight gain
- Hair loss or thinning, head, pubic, or whole body; increase in facial hair
- Dizziness, vertigo, light-headedness, episodes of loss of balance
- Changes in body odor
- Electric shock sensation under the skin and in the head
- Tingling in the extremities
- Gum problems, increased bleeding
- Burning tongue, burning roof of mouth, bad taste in mouth, change in breath odor
- Osteoporosis (after several years)
- Changes in fingernails: softer, crack or break easier
- Tinnitus: ringing in ears, bells, 'whooshing,' buzzing etc.
I have a lot of these symptoms. I am 50 and have been on Tamoxifen for 14 months. I think alot of what we consider Tamo SEs could actually be perimenopausal symptoms since Tamo tends to throw some of us into early menopause. I think this may be my problem. I'm seeing my gyno in 3 weeks and will be taking this list with me. If this is just perimenopause, I'll deal with it. Just want to make sure it's not something worse. I'm sure everyone here understands dizziness=brain tumor! and bloating=ovarian cancer!! etc etc!! Hate how BC has made me feel like a hypochondriac!!
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So how about us older ladies that have gone through menopause, and now feel like we are going through it again? Just since starting the hormonal therapy. I hate it more when the docs don't take the se seriously. I have worked hard over the last 2 years to get a good team of health professionals to help me through this process. They include a new PCP, BS, MO, RO, acupuncturist, chiropractor, yoga teacher, massage therapist and occupational therapist. Not to forget the mental health professional! lol It's hard work!
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Thanks Mac you answered my question before I could ask...I am 54 and my last period was jan 2013. I am suppose to start Tam on weds 2 weeks after my final rads. I have decided I will wait to take it Friday night after work. I am soooo sick of SE as I know you all are too. It's like you just get thru one hurdle and you have to jump another. I just got my act together and am doing The Hungry Girl diet....I guess it is good that I have a plan if weight gain is an issue. I am still doing Herceptin until Sept. My hair is just coming in and I ACTUALLY LIKE MY CREW CUT...oh well...thanks for letting me vent. I know I will get thru this...wishing you all the best and no SE's!!!!!
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love, what is the Hungry Girl diet? sounds right up my alley. Good for you for planning on starting on the weekend so you can adjust your schedule if you need. I was nauseated at first, but not so much now. I had some trouble sleeping also, so now take mine at lunch. Just pay attention to your body and rest when you need to, it is still very soon after rads.
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Mac, I had also not heard about The Hungry Girl Diet until today when Lisa ( ), the author was on The Chew today. You can probably google today's episode to see what she proposes......interesting ways to reduce calories in meals while allowing you to feel full if you are a big portion eater, aka a "hungry girl". It was really interesting. You can also probably check out the book title on Amazon. I'd be tempted if I hadn't already lost 30 lbs........but these last ten are the most challenging, of course.
Love, so glad that you like your crewcut!
And I think you are wise to start your Tamox when it is most comfortable for you. My MO didn't have me start it until 4 weeks post rads, so clearly there is no hard and fast rule. Wishing you smooth sailing on the Tamoxifen schooner!0 -
Thank you Lacey and Mac....I am a little nervous about taking it because today is my first day back to work full time and I am one who needs at least 8 hours or it is hard for me to function. Hopefully my sleeping pills and xanax will help me through
.I am impressed with the hungry girl...I have been getting her emails for free for years and my excuse not to diet is because I can't stand to be hungry. I have improved on my fruit and veggie intake so I am hoping this will be the key for me. I know it still has a lot of processed stuff but it is better than what I was currently doing and I feel like it is something I can do.
Mac I would recommend you check out her website...a lot of recipes and tips for free. http://www.hungry-girl.com/
XOXO
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Just realized today is my one year anniversary of starting Tamoxifen. Have to say, it hasn't been anywhere near as bad as I was afraid of. Let's hope that continues!
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Annette47 - Thanks for sharing your fears and your good news. Its always good to hear someone is coping well with Tamoxifen.
Keep strong.
Turns out my mouth problems had nothing to do with Tamoxifen and more to do with an allergy to cinnamon.
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I have posted here a few times but read the board all the time. The advice/experience here has really helped me to cope with Tamoxifen Because of irregular periods (normal before Tami) my MO wanted me to see Obgyn. I saw her today for sonogram and she did endemetrial biopsy. She saw some thickening in my lining. I just wanted to post my experience of biopsy here for others because I know we are all unique. It was not painful. Sure I felt a little pressure but it didn't hurt. I was so scared because I know it is painful for some. Now I just hope I get good results back. Other than irregular periods which I think given I'm on Tami and almost 50 would've be expected. I do suffer from fatigue but I'm working on diet and exercise. So far Tami and I are doing okay. 10 months and counting.
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Getrude-thanks for letting us know that your biopsy wasn't painful. I had one years ago and mine was not painful either. It is a bummer to have to have these biopsies when taking tamoxifen. I hope your results are negative!!! Remember that they usually are!
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Bounce - I too have an allergy to cinnamon ! I don't feel so alone and freaky now lol !!!!
( not that I am saying you are freaky
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MrsDarcy
I am not only freakish but I am stupid too! Turns out that at about the time I started Tami I also started eating hot oatmeal with cinnamon for breakfast.
It would seem that I am not sensible enough to notice that between the extreme heat and the cinnamon I was wrecking my mouth. Only after about 3 months when I really had to do something about not having much skin left in my mouth did I Google and realize the cinnamon might be the culprit did I realize that the heat wasn't doing much good either.
I now eat my oats a little cooler and with a tiny bit of cinnamon.
Another hint to anyone having mouth issues - if you changed your toothpaste recently - go back to your original one and see if things don't improve.
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Gertrude & DawnCT...........question, if GYN does a uterine biopsy is she also doing a transvaginal ultrasound to check ovaries?
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I had an ultrasound and I know she was looking at my ovaries and taking measurements. She did the ultrasound first and determined from that to do a biopsy just because of the breast cancer and the irregular periods she didn't want to take any chances.
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I've been blaming the crushing fatigue (fabulous description - by the way) on post chemo / post radiation SE. Not sure why I was giving Tamoxifen a pass on that SE. It is by far the thing I'm struggling with the most. It just keeps getting worse. Maybe if I actually exercised I could find some energy.
Looking at that list of perimenopausal symptoms want to make me close my eyes, stick my fingers in my ears, and say,"LA LA LA I can't hear you!!! "
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McKatherine,
I know what you mean about fatigue although I was fortunate and didn't have chemo or radiation the Tamoxifen has caused me to have fatigue. It definitely helps to exercise. I do it regularly for a few weeks and I feel so much better but then something will come up with my schedule and I'll skip and I feel the fatigue returning. I realize I have to make exercise a part of my daily routine if I ever want to feel better. So easy to say so hard to do.
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NormaJean - Yes, they do an ultrasound first to look at the uterus and also look at ovaries.
McKatherine - I started Tami about 6 weeks ago and am also so tired. I have been chalking it up to leftover radiation fatigue as I was still experiencing that when I started the Tami. The day I started the Tami I started exercising daily (walk briskly for 30 - 45 mins). I also purchased a pedometer and have been doing my 10,000 steps a day. The exercise has not made me any less tired. So, don't beat yourself up about that! I am hoping this passes. I am tired of being tired!
Dawn
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Well Ladies............here I was blaming all the fatigue, aches & pains on old age!! So I guess it's just the Tamo and I'm not as old as I feel.
Lucky me, I have to stay on this for 10 yrs. instead of the standard 5 yrs. Welcome to my world but if it keeps me from a reoccurrence it's worth it. Keep on "trucking" !! 0 -
Crushing fatigue! I also experienced it after about two months on Tamoxifen. But take heart ladies, it has slowly gone away. I am now 6 months in and started feeling more energetic at about 5 months. Exercise really does help so try to force yourself out the door!
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