Bottle o Tamoxifen
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Re measured regularly: yes I suppose I have. I was checked last July due to persistent upper right quadrant pain. My Family physician decided to do an entire abdominal and pelvic scan to check every thing when I told her I was on tamoxifen. This summer over the past month or so I've been feeling crampy and having some abdominal upset so she said lets do it again. Last year they also identified a couple of cysts on the liver and kidneys so she had them evaluated too. She knows there is a link between tam and endometrial hyperplasia so better safe than sorry.
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Hapb, I am 64 and my oncologist put me on Tamoxifen because I have mild osteoporosis and osteopenia. He said Tamoxifen helps bone density. His plan is that I stay on it for two or three years, then switch to an AI. So far, no side effects after almost three months. I haven't noticed hair thinning yet, but I am taking biotin supplement.
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I have been almost a month now on 10mg a day (first pill was the full 20mg blast, just to get a load of it in my system). I was hoping to avoid some of the commonly experienced side effects.
Has this worked? NO!
What does this tell me? I am assuming that if a 10mg dose is enough to give me SEs, then it is most definitely enough to saturate my system to do its cancer-starving job. This might not be a correct scientific conclusion, but I'm going to go with it as indicative of the 10mg dose being enough.
The first two weeks, no problem. I was thinking wee-haw, going to be a breeze, lucky me. Hah! Constant night sweats and stupid, disturbing dreams came as a matched pair. Every 15 minutes I heave the covers off. Cool down, ahh, how lovely. Then I'm freezing! Cover up! Repeat all stinking night long. When I manage to snatch a few moments sleep I have some stupid, insane, what the hell is that about, dream. This is NOT normal for me at all!
Last night I had three separate legs cramps featuring three separate muscles. These made me bolt out of bed and lurch around the house like Frankenstein's monster. I find getting up and walking helps we work out a muscle cramp, but you have to do it immediately or you're in for the long suffering. These cramps didn't just come once and go. No. Repeat customers. And I don't know about you but once I've had one of those killer legs cramps I'm scared to death to let my guard down, go back to sleep, maybe make a sudden leg movement which just triggers them again! Fear of leg cramps will literally keep me awake at night.
I have not noticed any hot flashes in the day, yet. And my hair loss seems normal, which is pretty serious even not on tamoxifen, I shed worse than the dog.
What I do not know is how these SEs would compare to my SEs if I was taking a 20mg dose daily. Maybe I'm getting off easy? Maybe it would be a living hell on 20mg a day? Maybe not. And I am only a month in, I might 'get used' to it after a while. If my body adjusts (to hormonal starvation, yeah, that makes perfect sense - not!) things may settle down? It IS hot here so maybe that's why the night sweats. I am still recovering from radiation, I did go fishing yesterday and hiked through some rugged terrain, so maybe that's why the leg cramps? I was very winded and weal yesterday, it was upsetting. Again, I do not do well in the heat and I am still in recovery mode (I keep telling myself, maybe I'm just a hopeless slob, I don't know).
The jury is out. I think though that 10mg, if it carries this big a SE whallop, is also doing what else it needs to do to keep the cancer from setting up house somewhere else in my body. Time will tell.
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I'm 38 and will be 39 next month. I found the lumps in my breast of April this year and my oncotype was -8.
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Anyone have tired, aching legs?
Not sure if it's the Tamoxifen, varicose veins playing up, or I've just overdone it. Not the first time since I've been on Tamoxifen, but don't remember if I used to feel like this ever before.
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Blue, I had those tired, achy legs with restless legs, spasms and severe hip pain after I started tamoxifen. I have found turmeric with black pepper and magnesium glycinate to do me wonders!! I tried to cut back once and the hip pain became horrible again. I also take calcium and 10,000 IU of vitamin d every other day
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ndgrrl--
I take both tamoxifen and thyroid hormone. Soon after starting tamox, I noticed that I was less tired and also having more heart palpitations. I had my TSH tested and, although still in normal range, it was significantly lower than it had been over the past several years. I believe that something about tamox must increase the strength/effect of thyroid hormone pills at least in some people. But what little actual research there is (at least that I was able to find) did not find any interaction. It's interesting that your Dr. does seem to be aware of this connection--mine isn't. I think there are some older posts on this site from women who also had to lower their thyroid dose.
Due to problems with SE's of tamoxifen (I pretty much became mentally nonfunctional), I am now taking tamox at 10mg, and the too-much-thyroid symptoms have improved. But I am still less fatigued than I was before--although I hate tamoxifen, it does seem to mysteriously make my thyroid hormone pills work better, and in a different way than just raising the dose of thyroid pills, because I had tried that in past with no luck. The endocrine system and its interactions are so complex!
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hi everyone, I've been on tamoxifen since the end of March. Finished chemo in February. I noticed after chemo my leg hair and under arm hair started growing at normal rate, well as of about a month ago I noticed my leg hair /under arm hair is not coming in as quickly. I can go a whole 2weeks without shaving. I might thinking it's the tamoxifen. I cold capped so i do have hair but lost half so now I'm worried it's slowing my hair growth on my head too. Anyone else having problems with hair growth
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Hop, I noticed the same thing with my leg hairs. Only shave every other week now. Too bad I still have to shave the arm pits the same though lol!!!
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Don't worry it will pick back up. I shave every 3-4 days now. Of course under my radiate arm I have about 3 hairs. On my legs I get enough to shave regularly. I still don't have full eye brows and my lashes are schtubie little things. I did used to have to shave every day but I've always had thin eyebrows. I firmly believe it's related to hormone manipulation and perhaps having been menopausal 2 yrs prior to breast cancer tx.0
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Hello there!
I am big on exercise too. From memory, leg pain etc didn't go until about my third year out. I also had some falling over events and little strength. Weirdly, I didn't get better over a period of time - it was just that stabbing pains and tingling just suddenly stopped. I think that it is a combo of chemo and post operative healing and whatever biological drug you are using. I have been on Tamoxifen since July 2009. I exercise quite a lot and dance classical ballet three times a week. Whatever exercise you focus on the most, really it is best if it is muscle buildings as we loose so much during the cancer trip. At five years or so, make sure you get checked out for thickening of the endometrium as this can and does happen with Tamox. I will move to an AI shortly.
My health is pretty good these days. I thought I would never feel strong and energetic again. But here I am, getting on with life and enjoying myself. All of us would prefer a journey to a lovely beach and not the ruddy cancer journey. Just keep on walking girls and one day you will likely find yourself much nearer that nice beach. Love to you all
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Virginia: Thanks for sharing. I have had two surgeries since May and I have not been working out. Need to get back to it!
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hi, thanks everyone for the info on thyroid meds and Tamoxifen. Hen I was previously on Tamoxifen I was unaware of this and had to lower my dosage and now I understand why. My MO just Fri told me to take my Tamoxifen in the AM with my thyroid meds. I will be contacting my Endo but I feel this is not right.
Anyone take Effexor for night sweats and anxiety from Tamoxifen? Can I ask your dosage. My MO was going to prescribe it in the lowest dose and I am to take it every other day, anyone heard of this? I have not picked it up yet.
I saw my MO on Fri and my BP was crazy high. I told her I had been at work seminars with no sleep all week combined with other stress. She freaked sent me to the ER. They ended up treating my headache after a CT scan that was clear which ended up lowering my BP. In the meantime I missed my infusion which is a trial using Zometa for prevention, she called the ER trying to get me released to have it. Ummm, hello, you send me there. I never got to ask her about it but she says its up to me if I want it. Up to me? I hate hate that!!! My previous MO was all for it and made me get dental clearance. I am 4 hrs from the CC so now I have no idea what to think. Anyone else do Zometa for prevention? She also took me off Tamoxifen for first she said one month than she said 3 months because of my insomnia and I guess the BP which had been fine at my pcp's office the week before. I asked her if she felt Tamoxifen caused high blood pressure she said no one really knows what it can do so I needed to listen to my body, so hmmm?
Does anyone know where I can find out what fillers are in certain manufacturers of Tamoxifen? A friend is wondering if gluten is a filler in them.
Sorry about the book...
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Hi, I was prescribed Effexor in Feb after taking a low dose of Lexapro for 10 yrs. I was terrified that I would experience lexapro withdrawal symptoms on top of the lovely side effects from tamoxifen, but only had 1 or 2 days of feeling poorly. I take 75 mg of Effexor at night. At first, it did help w/hot flashes. But my tamoxifen side effects have accelerated in the last month or so. I am taking a self-prescribed break this week from tamoxifen to see which side effects are related to tamoxifen. I woke up feeling great this morning except for ongoing hot flashes, so I blame all of it on tamoxifen. Horrible headaches, dizziness, hot/cold flashes all night and all day, inability to cope w/work stress, stomach upset, foggy thinking, general feeling of misery. I will go back on tamoxifen after a week because I am too scared not to, especially w/my family history, but I plan to enjoy the heck out of this week!
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Hi Hopfull2 - I also did cold caps. It took about 1 1/2 for my new hair to catch up to my old hair. I took Biotin twice a day and do think it helped. My hair on legs seems less or grows more slowly. My eyelashes also still seem thinner as do my eyebrows. I don't get them waxed anymore. I don't mind shaving less! But hair on head is important! Have you tried biotin?
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hi Suzanne50, thanks for your reply, yes. I'm taking biotin and viviscal. I'm 6months out. I just want my regrowth to catch up then I will have a cute neck length bob. That's for giving me hope. I mean I have hair but scared the tamoxifen is slowing the growth.
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I have been on T for a year with minimal side effects, if any. I am concerned that I am not metabolizing it, but doc and pharmacist at Dana Farber say that is absolutely not an indicator.
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I remember when I was pregnant, people thought if they didn't have morning sickness, they might not still be pregnant. Never had morning sickness. When I was having chemo, people thought if they weren't having horrible side effects, it wasn't working. I don't think it's an indicator that it is not working. I am happy to hear you say you are having minimal side effects.
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I was about to purchase a bottle of Gaia Tumeric today because of all of the posts and recommendations about it, until I read on Komen.org that the cir cumin may act like estrogen. So now, I'm having second thoughts about it. Has anyone checked with their doctors and got the ok to take it. I'm confused.
http://ww5.komen.org/BreastCancer/Turmeric.html
Hormone-sensitive condition such as breast cancer, uterine cancer, ovarian cancer, endometriosis, or uterine fibroids: Turmeric contains a chemical called curcumin, which might act like the hormone estrogen. In theory, turmeric might make hormone-sensitive conditions worse. However, some research shows that turmeric reduces the effects of estrogen in some hormone-sensitive cancer cells. Therefore, turmeric might have beneficial effects on hormone-sensitive conditions. Until more is known, use cautiously if you have a condition that might be made worse by exposure to hormones.
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TinyDancer5- my MO took me off Turmeric due to my cancer being ER+ as Turmeric does act like estrogen. I was so sad because I took Relief Factor for a year and it helped reduce my arthritis pain.
I had to stop Turmeric for Taxol at first but did ok with arthritis inflammation due to steroids with chemo. Now that chemo is behind me AND I was told to stop Turmeric, my arthritis pains are returning. Hip pain, knee pain, wrist pain and all of this is BEFORE taking AIs. I am so worried about feeling crippled due to the path I have to take to fight BC.
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DodgersGirl, I was just about to confirm my Amazon order when I though, let me check into this a bit more. I'm happy and sad that I did. I was looking forward to taking Tumeric to help with my joint pain and inflammation. Have you found anything else that works?
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DodgersGirl, I was just about to confirm my Amazon order when I though, let me check into this a bit more. I'm happy and sad that I did. I was looking forward to taking Tumeric to help with my joint pain and inflammation. Have you found anything else that works?
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I currently take tumeric and was about to place an order for Almased Multi Protein Powder to help with tiredness. Almased is a soy protein isolate that was recommended to me by GNC and the reviews on Amazon are great, but not sure if I should avoid that as well since I am ER% (100%). But since I am tamoxifen which blocks the effects of estrogen, then maybe it is ok. This is all so confusing.
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TinyDancer5- I haven't found a solution for arthritis pain yet and that has me bummed right now 😔
My MO suggested Omega3 and FlaxSeed but I haven't purchased any FlaxSeed yet and glucosamine with chondroitin.
The Relief Factor I had been taking (which had me at a level that I seldom had arthritis pains) contained Turmeric and Omega3 pills so I have the Omega already.
I have started taking berberine (approved my MO) which can help with inflammation and and taking Genacol with glucosamine and chondroitin. It's too early to know if these will help as much as Turmeric did.
I was told I can still eat meals with Turmeric in them as the amount of Turmeric would be much less than my supplements.
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Thanks DodgersGirl, let me know it works for you.
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Hi all,
I delayed starting Tamoxifen for several months, because I was already feeling rotten, and wanted to give it a fair chance (I'm the Queen of Side Effects).
So this morning, I said what the hell, and took a half dose (10 mg) to be cautious, and didn't think about it any more. Had a coffee and a bottle of Boost.
About an hour later, walking into an appointment, I got a strange but familiar sensation in my mouth and ran to the ladies' room. Everything in my stomach was gone in a matter of seconds. My body was saying, "hell, NO!" I've never had this happen before with a medication.
I will give it another shot tomorrow morning.
Wondering if I might be allergic to it? I'm not interested in taking an anti-emetic long-term, which just adds to the meds I'm already taking, and if my body is saying "POISON!", I don't want to ignore it...
Carrie
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Carrie, When I took my first pill, I took in the morning also and made me feel sick. I now take after lunch with no issues. Try taking it at a different time of day with possibly more food in your belly.
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Dana Farber pharmacist said "no" Turmeric w/ curcumin because est+.
Thank you Trvler. Nice analogies.
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My MO is a research oncologist and at my request extensively reviewed the literature on turmeric and concluded it was ok for me to take. He said even the supplement amounts aren't enough to "push" BC but they are enough to help with the joint pain. He ended up researching many other things I've found to work and one of the things he asked me to cut back on was flaxseed, specifically no flaxseed oil but ground flaxseed ok in small amounts. He also told me 5 years ago NO soy but now says he's ok with natural soy like milk, edamame, tofu, etc just not large amounts. He specifically wants me to stay away from soy as additives. He spent many weeks researching this for me (he's pretty awesome!) and says he's very confident with these suggestions.
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lala1- do you have any links to studies that support the use of Turmeric when ER+ BC? My MO is a research oncologist, too, and even though I asked twice (and she looked twice) she still said no turmeric. I so want to be able to take it again.
Thanks
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