Bottle o Tamoxifen
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I take my tamoxifen with food and in the morning. When I took it on an empty stomach the SEs were bad, including dizziness.
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shelabela - I'm 49 and my blood work also indicates menopause (and has since chemo in late 2015), but MO wants me on Tamoxifen for 10 years. I'm on a 'holiday' from it now - 5 weeks off Tamoxifen and I feel awesome! - the best in 1.5 years. I finally feel like ME again - woohoo!! So happy being off it! First year on it was OK but really how could I tell what was post chemo, post radiation, menopause, or Tamoxifen? It all blended. Last 6 months have really been awful, so the break was to tease out the source. I'd say 90% of my complaints were from Tamoxifen. Meeting with MO this Friday to discuss. I don't think I will ever consider an AI. As an athlete still significantly involved in higher risk sports (mountain biking, snowboarding) I can't risk the possibility of fractures.
- xo
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TWills and sm627 Thanks for the info! On Amazon right now, it is still $57 for one month (slightly less if you buy multiple months at a time) & another site, JDF Womens Health has it for $50 one time or $35/mo for subscription sent every 30 days, same as the Relizen site subscription. That is not bad. I may try one month to see how it works & then do the subscription if it works. I heard it may take at least a month or two to know?
Alternatively, I saw on Amazon (and sold at GNC & other supplement places) another brand with positive customer reviews - Source Naturals Swedish Flower Pollen extract tablets, 90 tabs for only $13.65. This seems to be the same product, but a lot less expensive, but not sure what the "proprietary blend" is in Relizen. Marketed to men for prostate but reviews say works for hot flashes (like Relizen). Anyone with experience with this product?
Yes, my hot flashes just recently got really bad - I had gotten down to only one or two during the evening and then as I was waking up, but now they're coming on stronger (downright sweating vs. just warm) and more during the day, which is tough in an office environment. I dress in layers but I'm sure my colleagues wonder when I'm peeling my cardigan off & on every 30 mins lol That has really been my only SE of what I thought was from the Tamoxifen. I thought I was in menopause (hadn't had a cycle for 1 yr 10 months) then I had a very short cycle last month! Last April when we checked my Estradiol levels, I was stilI not close to menopause, so not sure.
Re: UCSF I would highly recommend them to anyone who is newly diagnosed or wants another opinion. Even if it's too far to get treated there, their collective brains there are some of the best. Always at the forefront of everything, and I have had great care there. I was seeing my Onc/NP every 6 mos for a while, then they tapered me off to annually. Now they said I don't have to come in every year unless I want to. I probably will for at least a few more years.
Thanks!
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lomlin, I thought of that also as a reason for dizziness but even taking it with food makes no difference.
Andraxo, my MO told me taking a break would only intensify the hot flashes. And make SE worse when I start back on
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I guess I’m one of the blessed ones because I took Tamoxifen for 4 years - first year on Arimidex and when my 5 years were up my MO said I was done with it. Yea!
My experience with Tamoxifen wasn’t too bad. Hot flashes and joint pain at night however I can relate to hot flashes at work. I even had a small fan on my desk. Gotta admit itwas pretty obvious I was sweating. It was embarrassing.
I know lots of women have debilitating SEs from the drug. If I had had them I would have opted for something else. QOL is important.
Diane
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I only had bad hot flashes the first year on Tamoxifen - haven't really had much the last 1.5 years on it. Occasionally I'll have mild ones a few days in a row, but not often. Off tam a little over 5 weeks and the hot flashes did not start up. I did get a light period though right at 4 weeks off it. I'm sure my body is adjusting to being without it because technically (per labs) I'm menopausal.
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Does anyone have cold chills? I don't have hot flashes I have spells were I freeze! I'm sleeping in so many layers and under 4 blankets. I added leg warmers to my layers and it has helped. I'm not waking up because I'm cold.
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Vargadoll, yes to the cold chills! Sometimes I feel like my bones are cold.
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Yes! Beaverntx! I almost put that in my post! I've always had a tendency to be cold but this is extreme! It's not new either. I have felt like this since my lumpectomy so it's been almost 2 years. Most of the post are about hot flashes and joint pain so I was curious if anyone else had the cold chills. Thanks for responding! I'm not alone
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vargadoll, I've felt cold so much that my PCP checked my thyroid function -- which turned out to be normal. It is nice to know I'm not the only one.
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re cold chills, yes I seem to have surpassed 5 years of hot flashes (which I still get time and again in the wee hours) and substituted periods of extreme cold, inability to get warm. I wear 2 layers do of clothes. A fleece and a Sherpa and I might warm up. I now have a heater in my office where I once dreamed of January breezes. How sad is that?0
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vargadoll, me too for extreme cold spells! I don't think I've had hot flashes, just the odd warm spell. But chills for definite, sometimes I can't get warm for hours.
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Well, I'm afraid Tamoxifen has finally got the best of me and I'm taking a break for a month or so. I have been losing fistfuls of hair and I can't take the stress of it any longer.
If the hair loss lets up after a month, I guess I'll know it was definitely the Tamoxifen. Otherwise I'll see a dermatologist. Such a hard decision to make...
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I would love to hear anyone's stories of how they became friends with their tamoxifen. I am about 8 weeks in and feel like my surgery and radiation are mostly behind me so I am trying to adjust to taking medication daily and dealing with the side effects. I am to the point where the side effects are annoying but not unbearable. Anyone have suggestions on how they adapted to their new normal?
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I am sure that my behaviour today can be chalked up to tamoxifen induced batshitcrazy. Even my adult daughter was like, whoa, mom, dial it back a notch.
I make a handmade item and decided (crazy) that a local big chain store should carry them. I called the store. They don't handle such decisions. I must call Head Office and talk to Bob Blahblah. So I call Bob and get his voicemail. I leave a long detailed message about the greatness of my item and how he should carry them.
Not happy at that, I phone him again the next day, to make sure he got my message, which he did, and to make sure he saw my website, which he did. But he says my items are kind of pricey (not really considering the quality) and that most people won't pay that (wrong, I've sold quite a few at the price) and besides they already offer a made local product from some other maker. Thanks for calling but no.
Not ready to give up yet I send him an email. I pitch my product AGAIN. I have seriously tipped over into lunatic behaviour, but I don't think I'm being a lunatic, no, I'm just being super motivated in pursuing my goals. Pushing myself past my comfort zone. Asking the universe for what I want. Oh my god.
In the meantime I do research on the local crafter of their made locally product and I find nothing. NOTHING. There is not a hint, whiff, hair of evidence that this person exists. You can find nothing about her product or anything. Weird. Most people who handcraft at that rate for such a big chain boast about it. But there was nothing. It was like she didn't exist. Turns out, she doesn't. Turns out that 'she' is a manufacturing company churning them out in bulk with off shore, cheap goods making it look locally made, hand crafted, when it is not!
So, I send the guy ANOTHER email telling him to basically go get stuffed! I accuse him of dishonest business practices, allowing me to think that he carried locally produced handmade items when, in fact, nothing could be further from the truth. And the difference between what he pawns off as local and MY product is worlds apart and all he has to do is try one of mine on and one of his own to tell the difference!
If the cops knock on my door and accuse me of being a crazed stalker, I will probably deserve it. I can't believe how pissed off I got over this. It makes no sense! I'm going to give corporate Canada a piece of my mind and smarten them right up? As if! What am I thinking? What is wrong with me? How come I get so pissed off over everyday bullshit? Poor Bob Blahblah, he must think I'm a nut job. I think I'm a nut job. It's the damn tamoxifen!
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I started my tamoxifen last night. I got bone chilling chills about three hours ago and now feel better. My Apple Watch said my resting heart rate was 115 which is higher than my walking rate! Just waiting for daughter to buy a thermometer see if I have a fever. I don't think I do. So this is normal?
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yeah the hairloss sucks. I have alopecia to begin with. My hair is wavy and curly so have been able to hide those large areas of loss with a good hair stylist and colors but the front is now unhideable. So I'm just making the most of it. At 54 it sucks. I've had alopecia since early 40s and it's finally to where the front sucks and counting. But what can ya do. I assume T is working and since i can't do AIs due to real shitty ses, got to stay on the T.
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I've had to put a catcher in the drain to keep the hair from plugging the plumbing. It's all over the bathroom floor. I am thinning in the front as fast as Hub is. But on an up note the bedtime joint aches have eased off and the leg cramps ... knock on wood ... they've been good for a while. The hot flashes though, oy!
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FindingOptimism--I think you just have to learn what your new normal is. And it will depend on what resources you have available to you. In a perfect world, you'd be able to have acupuncture and get a good massage a couple of times a month. And working out in some form most days of the week will definitely help. I do cardio, weights and yoga every week and feel it's the single most important thing that got me through my 5 years. Well, that and turmeric and ginger. Those really helped with the joint pain. Oh, and magnesium which helped with constipation as well as insomnia. And once I finally realized how dehydrating Tamoxifen is (wish my docs had told me that one!) I upped my water intake and got rid of the nausea and dizziness that I had every day. It took me about a year to find all the things that helped me but after that it was a fairly easy 4 more years. Hope you get there as well!
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I've been losing hair for years. I gradually went from fairly thick hair to very thin after my hysterectomy in 2008. It's always looked like a drowned gerbil in the sink strainer after I washed my hair, which was usually every day or two. And for hours after washing, hair would fall all over me and anything near me. I started taking biotin in December, shortly before starting Tamoxifen. My shedding has really slowed down. Maybe it's a seasonal coincidence, but I don't remember the shedding letting up in the winter other years. I'll have to see how it goes over time, but so far, so good. I'm not really having any SEs on Tamoxifen. I wonder if the decade-old surgical menopause helps? I never had real hot flashes from that, either - an occasional night sweat, but usually after being chilled and putting too many covers on. I've probably just jinxed myself and will start getting all of them now!
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I used to have thin hair before diagnosis, was so scared that T will take the rest , but surprisingly my hair got thicker than normal...my joints pain is sooooo bad, if I sit for 10 mins Standing up and walking is so painful, it takes 1 min of walking to get back to kind of normal, my knees and ankles are the most painful parts, should I get concerned about metastasis??? Really don't know which pain is normal which is not, taking mag/cal but pain is still there......my bone density was lower than normal in last week exam
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FindingOptimism - lala1 offers good advice on finding your "new normal" and what works for you. I also find exercise and streatching critical to feeling better. Exercise does not have to be in the gym, when not there I hike, bike, x-country ski, snow shoe. Look forward to paddle boad in the summer (not much exercise, but fun). Acupuncture helps as well, and one of these days I will treat myself to massage. I will have to check out ginger. Magnesium glycincate seems to help with leg cramps. My oncologist has also suggested being sure to get enough water, maybe potassium as well. I think tumeric helps as well. Biotin, definitely notice it in the nails, but I think hair as well. But how much to take, not sure, the doses available vary considerably. I take 1-5mg. I am not friends with that bottle of tamoxifen. Actually started on Aromatse Inhibitor, but quit after a few months do to joint stiffness and pain. I did try various hemp/marijuana products, but they did not seem to help, but others post that it did help them. I keep planning on food/exercise/activity/drink journaling, hoping to find relationships in why I sometimes feel good and sleep great, and other times not.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil. For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine. Often add turmeric to meals.
2009 ER+ left breast. 52 yrs. Lumpectomy, Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. Cold Capping using CHemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months do to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger.
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I've had hot flashes due to too much Synthroid and I had some hot flashes during chemotherapy as my ovaries were being poisoned but I've noticed something strange about these Tamoxifen hot flashes.
Right before I have the hot flash, I have a cold flash. I will literally be sitting there and realize I am cold, and then, without taking any action, I suddenly realize I am hot.
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hello ladies,
I just have a query I hope someone might know the answer to. I have been on Tamox for coming up to 2 years, and recently my MO did my blood work to check was I in menopause, ( this hadn't been done before as far as I know). It came back that I am not post menopausal, so he wants to add Zoladex to my treatment. My question is, which I only thought of after my meeting with him, would the blood levels be correct while I am on Tamoxifen?
Thanks.
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My MI said that in one year I will go off Tamoxifen for 2 weeks and then get blood work. I had a "false post menopausal " blood work while in Tamoxifen last year. Once I start Anastrozole I flip back to perimenopausal. I have no fact based answers, just what happened to me
. No period for 17 monthe while in Tamoxifen. Blood work...post menopausal put on Anastrozole immediately. Took Anastrozole for 2 months started spotting, blood work ordered. ...perimenopausal and back to Tamoxifen. I have been back in Tamoxifen for 9 months. No spotting or no period blood work a few weeks ago is still perimenopausal. 0 -
Okay I have been on Tamoxifen for 4 months or 5. I am now experiencing heavy duty anxiety and popping xanax. Does anyone else have this or are on a different anti anxiety med. I can't handle this. Feels like the heart is going to pop out. I feel it beat against my chest cavity from time to time, like as if I had exerted myself. I get on a stationary bike for about 20 minutes to get heart rate up, upon suggestion from my oncologist. I can't say I have experienced anything like this before Tamoxifen. It also feels like I am getting squeezed. Yuk. I have heard Paxil is no good to take while on Tamoxifen. I'm feelin' a bit crazy.
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LomLin - I didn’t have anxiety but I did have trouble concentrating. I was surprised at the meds you shouldn’t take with Tamoxifen like Benadryl. I would ask your doctor for a different med. Tamoxifen has other side effects like joint pain. No sense adding to the misery.
Diane
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Good morning all. I've just finished 8 months of Tamoxifen, and the most recent refill was a switch from Actavis to generic. (My regular local pharmacy just closed and I had to switch to a pharmacy chain.) I've been taking the new pills for about three weeks.
I've noticed an increase in joint pain with the generic version and woke up this morning with intense hip pain. Has anyone had a similar experience? I don't remember doing anything yesterday to cause this kind of pain and am considering asking my MO to switch me back to the Actavis brand. I had some joint pain before, but it's definitely worse now.
Buttercup
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Princess, a number of people here have reported having different side effects with different manufacturers, possibly due to different filler ingredients in the pills.
Three weeks should be long enough that the Actavis brand is pretty well out of your system so you may well be reacting to your current brand. I've been on Tamoxifen about the same length of time as you and have had pills from 3 different manufacturers! Haven't noticed any big differences that I can attribute for certain to the Tamoxifen but that is not the case for everyone.
Have you asked your pharmacy about only getting the Actavis brand? Sometimes they will honor your request (with the possibility of a higher fee for a special order). If that doesn't work and your pain continues, well worth a talk with your MO. Five to ten years on a medication is a long time and finding the brand that works best for you is important.
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Lomlin, I had the same experience when I started taking tamoxifen, within a few weeks I was a complete emotional wreck, anxiety so bad my heart was pounding and I could barely put one foot in front of the other.
I was prescribed mirtazapine, which has given me my life back. I've stopped taking it a couple of times, and the old anxiety has started creeping back,, so I guess I'll probably stick with it as long as I take tamoxifen. Plus it has the added bonus that it gives me the best sleep I've ever had, a solid seven and a half to eight and a half hours a night, and I wake up feeling great. I don't get hot flashes, but I reckon I'd sleep through them if I did.
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