Bottle o Tamoxifen
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True, my oncologist kept me on tamoxifen although chemo-induced into menopause due to bone issues. As stated above, tamoxifen doesn't incur bone loss (density), but the AI's can contribute. We took the tamoxifen for as long as feasible (3 1/2 years), now on Aromasin. Migraines are the same, but I'm VERY glad to hear that someone is helped and migraines have dissipated, may that continue~!! VERY mild to no s/e's on tamoxifen--just menopause symptoms (hot flashes/night sweats that continue). Weight GAIN however, but again, due to menopause as well. Kudos to those who take weight off (safely--not due to illness). ~juli
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Hey Everyone - Thx for all the input here, it helps a lot.
I've been on Tamox now for about two weeks. No real problems so far. :-) The only thing I seem to have that's really bothering me (besides trouble with sleep from the hot flashes) is that I'm still fatigued. Is that a problem for any of you or was it an early se of the Tamox that eventually went away? I seem to have energy - use it quickly - then have to recharge for an hour or two. It get's discouraging.
I went to see my GP the other day and I hadn't been in at least a year. I've gained 13 lbs. I don't want to go up a size but I seem hungry most of the time and tired. That's not a good combination I know. I am beginning to relate to my dog when she was spayed and ate all the time then spread out all over. What a terrible thought!
Any of you winning the battle of the 'bulge'? Will take suggestions -- I would love to hear what's working. Carolyn
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Hi Carolyn,
Do you always feel tired? I've been on T for a little over 2 months now. I will have a day here or there that I am incredibly tired, no matter how much or little I slept the night before. Never really had anything like that (except maybe when my kids were newborns...). But thankfully it is not a constant thing.
Ann
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Carolyn, you know I'm hungry all the time too! And my onc flat out told me that she does NOT believe this excuse that Tamox makes you gain weight. But if I'm eating exactly the same amount as usual (maybe a tiny bit more as I take my Tamox with a small bowl of oatmeal in the am) and moving around as much as before why am I more hungry?! There must be a connection.
Good point! Can't give you any suggestions, as I need to lose 5-10 pounds.
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Ann -- You know I was feeling like I was gaining strength and doing pretty well -- then I took a trip by car (only 5hrs away) to see my Aunt and Uncle and came home exhausted. I haven't felt like I did before I left and that was at least a week ago. Maybe that's typical when you do something like that. I just don't know, nor do I know what to expect. Then I get down about it. Now, that doesn't help matters at all. And yes, I'd say it's kinda like how I felt when I had a newborn.
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Melanie - I do the same with the oatmeal in the morning. It seems to last longer than cold cereal. Then when I'm hungry later and I try to fill up with good nutritious things like apples, yogurt etc. It just doesn't seem to satisfy me but for a shot time. I'm going to try eating almonds, I heard they can curb your appetite. Will let you know if I have good results. Wonder if this is the appetite returning after being so depressed during Chemo? I have no idea.
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I've definitely had fatigue symptoms too. A lot of it I associate with recovery from surgeries, but some in the first couple months after starting tamox I think was associated with it too. I think I'm mostly straightened out now (11 months on tamox). If you've recently had a surgery as well as started tamox I think it'll be really hard to separate out the cause, and can probably only point to tamox if it doesn't dissapear in a few months. Anesthesia can knock you down for a while.
As for the food and hunger, interesting, others who are noticing different feelings of hunger too. I've noted this several times on this thread in the past and no one else ever concurred. Just for comparison, when I started tamox I felt like my hunger and satiety signals were all off, esp in that I didn't feel "full" when I would have before. I had heard stories of weight gain prior to starting and was determined to not let it happen, so I was just super careful not to eat more than before and to keep up my activity. Luckily, I didn't gain weight, and even better, my signals around hunger and satiety seem to have gone back to normal and I can eat normally and maintain weight. That took perhaps 3-4 months. Hopefully that will happen for anyone else who's recently started too, although we're all different so there are not guarantees.
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Glad to hear about the hunger issue. I am about 4 weeks on Tamox. Am still losing weight because I am trying to be a careful eater. But have just started to feel hungry all the time. Also, still having rads and started back to work. So I know alot is happening to my body this month. But, I did really pig out at lunch and finally wasn't hungry. Hoping I don't start packing on the pounds as my BC is very ER positive and I have been able to lose 20 lbs. I need to keep that off ! My only other real side effect is menopause. It is chemo induced but much more intense since starting Tamox. I am hoping that it levels off. Tired of coming home from work covered in sweat!
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I can't really lose weight! But I've noticed I eat about 1/2 of what I used to, both for lunch & dinner! I think because I love a "hot" breakfast, like an egg, & home-made potato cakes with either toast or ham/bacon, I stay full! A lot of the times, my DH & I will split a sandwich for lunch. But my Husband has lost weight, even eating a lot of snacks & sweets! I don't see how that's fair!
I heard this once...."Im not fat, I'm just fluffy!" xoxoxoxoxoP.S.....Is it possible that my hair is thinning because of Tamoxifen? Have any of you noticed this? I didn't even have chemo! I had heard on an average, we are supposed to lose approx. 80 hairs a day....that sounds like a lot!
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I just wrote a longer message then lost it and now I'm to tired to re-type it.
cs777 -- I had surgery last December so that can't be it. Guess I need to cut back more on what I eat and exercise. The same thing that always worked before. I just don't really want to do it now. No energy. I feel like your Avatar( picture ) chevyboy!
Thx "Fluffy"
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Well, after 19 months, my body decided it didn't like menopause...now I'm having hot flashes AND cramps! REALLY?!?!?! Not fair, just SO not fair! *pffft*
In August, my gyn said that my ovaries were in premature ovarian failure and my blood counts indicated I was in menopause (FSH of 29.7). Apparently (according to my oncologist) I was "borderline" (NOW they tell me!)
Going to have a pelvic sonogram on the 11th to make sure my ovaries have actually awakened and its not the Tamoxifen jacking with me.
This disease is the the gift that keeps on giving.
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Hi Fluffy! Ha! That was funny! In YOUR picture, you are beautiful!
Sorry Alaina about your problems! Dang! I guess I am so lucky I had all that behind me before this cancer stuff came up! And I say a prayer every night for being so fortunate to have THAT behind me too! So many women with small children! And having a worse time than I ever did.
I don't think I even knew when I went through menopause! I was on the pill almost all my life, then estrogen after the hysterectomy, so it probably came & went without nary a word to me! And all I get now are "warm waves"...but those are easy to handle... just rip off all your clothes & stand in front of the swamp cooler! That will blast you back into your senses!
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chevyboy, you are SO lucky at least with the menopause symptoms. Still going strong with hot flashes/night sweats/red face 4 years after Taxol slammed me in one day into chemopause.
Alaina; DRAT! I hope your sonogram goes well. I was totally pre-menopausal (periods every month), until the Cytoxin/Adriamycin, then I had my period the whole 8 weeks of treatments. Had a biopsy, as they weren't sure it wasn't uterine cancer (benign). Onco said NO WAY the chemo prolonged my period (I'd heard from many others that indeeeeeeedy it did to them too). Then, slam-bang, first day of taxol, no more periods/menopause.
We all have such different stories, how in the world could they EVER find a correlation between patients??? MUCH luck to us all...yes the gift that keeps giving, I like that one! ~juli
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If this benefits anyone else, I'll be happy. I've started working with a Naturopathic Oncologist for the past 6 weeks, since the end of my rads. I had a Environmental Pollutants Panel test which showed extremely high levels of Pthalates in me. Pthalates are what makes plastics flexible and, I'm told, are everywhere. Every product which lists "fragrance" on it has them, lots of cosmetics and lotions, etc. They are in the lining of fast food wrappers and cups, microwave popcorn bags, saran wrap, etc. So my Rx is to sit in the sauna, drinking cold water with Emergen-C mixed in, and sweat them out because I'm not sweating enough from exercise. Then jump immediately into a cold shower. Starting out at 30 mins/3x week and hoping to work up to 7. I thought I would be so tired from doing it, but it makes me feel great. She's also added HMC (Hesperidin Methyl Chalcone) and Evening Primrose Oil 500mg daily which has reduced my hot flashes overnight to almost nothing. I was only ever having a handful a day, but usually one or 2 doozies during the night. She also added 1500 mg of L-Glycine for me to take before bedtime to help detoxify me and the side effect benefits?: I am sleeping like a lamb and all my anxiety has gone, poof. Blood tests showed I have low levels of circulating Vitamin D and she's upped that to 5000 iu/day. She said excessive Pthalates are common in breast cancer patients and so are low levels of D. I'm paying to see her out-of-pocket as my insurance doesn't cover this, but her costs are reasonable and honestly, today, I was thinking I feel better than before my diagnosis back in May. Trying to be careful of what I put in my yap and regular exercise, even on days I don't feel much like it plus following the advice of my Naturopath is paying off in droves.
On a side note, there is an old guy I go to church with. We haven't seen each other all summer but he was at Saturday Mass this week. He asked how I've been and I told him my tale and to my surprise, the sleeve he wears, which we thought was from a burn or something, is actually there for his lymphedema from breast cancer surgery 4 years ago. We both got tears in our eyes and hugged. One of my oldest and dearest friends meets with a surgeon next week to set a biopsy date. This crap is everywhere! Hope everyone is doing good today, or good enough.
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Thanks so much for the info phxsunshine! I will be asking my naturopath about the Environmental Pollutants Panel test. I have read about the benefits of saunas and am willing to try anything to ensure the cancer doesn't come back. I too was low in Vitamin D and take 5,000 i.u. per day plus I get out in the sun for 15 minutes with no sunscreen (wearing a hat though). I would love to take Evening Primrose to combat the hot flashes but I thought it acted as estrogen thus offsetting what Tamoxifen is suppose to do. I'd love to get rid of the hot flashes and get a good night's sleep!
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SLEEP? What's that?
It is the constant dreaming that I hate...or maybe it is just the "always thinking" that bothers me. And hey gals, do any of you notice your hair thinning? I keep cleaning hair out of my brush, & finally looked it up, & yes, Tamoxifen does cause that..."What is tamoxifen? Tamoxifen is a medication for cancer, especially the breast cancer. Hair loss during cancer therapy might be caused by the chemoteraphy and the tamoxifen. Generally, there are some medications that gives a side effect to our body. The side effects maybe different, it may affect your body, and/or your emotion. It can cause hair loss, headache, etc. Anyway, nobody wants to be bald especially women. Women's hair is their crown. This is the reason why people are so concerned about the side effects of some medicines that cause hair loss or massive hair loss.
Mr.Wiki said :
"Tamoxifen is an antagonist of the estrogen receptor in breast tissue. It has been the standard endocrine (anti-estrogen) therapy for hormone-positive early breast cancer in post-menopausal women, although aromatase inhibitors have been proposed.
Some breast cancer cells require estrogen to grow. Estrogen binds to and activates the estrogen receptor in these cells. Tamoxifen is metabolized into compounds that also bind to the estrogen receptor but do not activate it. Because of this competitive antagonism, tamoxifen acts like a key broken off in the lock that prevents any other key from being inserted, preventing estrogen from binding to its receptor. Hence breast cancer cell growth is blocked. "
(wikipedia.org)Tamoxifen, is especially treated for women, and women are very concerned about what they look like. So, when the tamoxifen causes hair loss, this also affects them, this is also another problem. Hair loss becomes another problem to be solved after the breast cancer.
Tamoxifen cannot distinguish body cells from cancer cells. Tamoxifen only detects the rapid-multiplying cells. This is why when they attack the cancer cells... they also attack the body cells including hair cells. Don't be overstressed of being hairless. Your hair will re-grow soon after you finish the cancer treatment. During the cancer treatment and hair loss , you can use a wig to cover up your hair loss. Or,you can short-cut your hair."So, well, I guess it might get better, right? At least my Mammogram came back good! Just wondered if any of you noticed your hair getting thinner. I didn't have chemo either.
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Anyone have gastrointestinal issues with Tamoxifen? I've been on it almost 3 weeks and I'm having some issues. No hot flashes or such but my bowel movements have increased to a million a day! Is this from meds?
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I have noticed that my sleep is worse (sometimes no sleep) on Friday and Saturday nights which also happens to be the nights that I allow myself 3 to 4 ounces of organic red wine and a small piece of organic dark chocolate. My acupuncturist said that these are "heating" foods which may make my hot flashes worse and keep me up. So either I will go without or try white wine.
Yikes! No hair loss. Thought I missed out on that by not getting chemo.
Also no gastrointestinal issues but I do know of someone who couldn't keep food down after starting T.
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Hi Jan! Your side effects might straighten up after like 2 weeks, & then more than likely you can count on a NEW one...Ha! Watch what you do to "treat" one thing, because it might cause something else to go wacky. I never had the upset stomach thing though! In fact, I don't even have to take Ranitidine any longer! (Zantac)....So I think the Tamoxifen helped THAT anyway.0
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jan508, I did have a lot of GI issues in the first several months - stomachaches, nausea and yes, if I recall right, more bowel movements. Eventually all that settled down. I hope it will for you too.
chevyboy, I think wikipedia's description of tamox is not completely accurate. It seems to be equating some of tamoxifen's actions with standard chemotherapy's (like the part about only attacking the fast growing cells), so if anyone wants accurate info on tamox I think I'd recommend going to some of the cancer org pages (including BCO) or dedicated drug info sites that have the actual medication guides on them. That said, you're right hair-loss is reported in response to tamoxifen by some percentage of women in some studies, and I'm sure it is disheartening when it happens.
Hope everyone has a good day!
CS
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I hope no hair loss! I'm not taking anything for intestinal issues because I don't know if it's the T or the antibiotic I was on for almost a month YUK! I just have been trying to eat normal and take Activia for breakfast this week. We'll see how that works out.
Thanks for your input
Jan
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jan I'm only one data point but I haven't had additional hair loss, 11 months on tamox. My impression from the studies i've seen is that it's not one of the more common side effects, so hopefully that will help you not worry about it.
i didn't take anything for the stomach stuff either, just hoped it would settle down with time and it did. my onc's NP made me take a pregnancy test after 2 months though because of my stomachache and nausea complaints, even though I'd just had my period for 5 days. seemed dopey to me...i suppose preg was possible but highly unlikely!
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This is one of the problems with Wikipedia, someone can add bad info, and it stays there until someone corrects it. It is chemo that attacks rapidly multiplying cells, not Tamoxifen.
The first paragraph in quotes in Chevyboy's post is substantially accurate, but the paragraphs below that are not so accurate.
Chemo causes hair loss. Tamoxifen may cause hair thinning, but there is a huge difference between thinning and total hair loss. We know that there is a relationship between hormones and hair. We know that some women experience hair thinning during menopause, and that Tamoxifen often triggers symptoms similar to those experienced during menopause. Clogged drains and full hairbrushes are disturbing, but they aren't baldness.
I haven't heard of anyone who lost their hair, or became hairless on Tamoxifen, but almost everyone who does chemo to treat breast cancer loses their hair.
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Does anyone know it your supposed to take Calcium while taking Tamox?
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ECT
My oncologist has me taking my 1200 mg of calcium daily as usual. I also take a Vit D and multi daily.
Jan
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Thx Jan - it's my endocrinologist who put me on the Calcium. I had a low Vit D3 score of 16 ( now taking 5,000 daily) so he put me on Vit D3 and then told me to take the Calcium too. Was wondering if I really needed it as I know Tamox kinda helps the bones anyway.
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My onc. did a blood test for my Vit D but I won't get the results until my next visit in 2 weeks. I guess at that time he will discuss whether I need additional Vit D.
Yes, T does help with bones and I'm on that because I have osteoporosis in one hip. Even though I'm postmenapausal.
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Sorry you have the Osteo problem. Guess I'll just ask about the Calcium the next time I see the oncologist. Hope your test results are good.
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Hadley -
Interesting you mention that. I was so worried about the hot flashes, yet I've found myself being cold very often - and I've always tended toward being too warm. I've been on it for about two months now.
Ann
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I know everyone has sort of moved on, but for those of you talking about saunas, you might want to look into your risk of lymphedema. I don't think saunas or jacuzzis are recommended if you've had lymph nodes removed.
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