Bottle o Tamoxifen
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Question for ya'll: I am enjoying (ack!) my first head/chest cold since dx. Do you notice Tamoxifen SEs any worse when you are sick? I feel as if I am flashing more these past couple of days and am just curious. More of them are the hot-drippy-sweaty kind of flashes, too.
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sm627- I'm blown away that your MO denied your side effects were caused by Tamoxifen. My MO increased my magnesium, K-2MK7, Vitamin D3 to help with muscle/bone issues, warned me about the dangers of getting dehydrated and dehydration causing dizziness.
If you read the section here on this site on Tamoxifen it clearly mentions leg pain, bone pain, it also tells you to immediately call your doctor if you have dizziness or leg swelling.
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My bottle of Tamoxifen comes with a red sticker warning that it may cause dizziness.......
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Hi Everyone,
Thanks for all of your support I really appreciate it! I did read the side effect page more closely and did find what you all have been saying about join pain and dizzy spells as SE. Now I know I haven't gone crazy! Thank You!!
Egads007- I come to lean on you all almost everyday if not every other. Thank You!
Threec - I tried adding lemon to my water on Friday and I had some tea in the afternoon and I didn't feel light headed. Thank you so much for your wonderful suggestion. I am going to start doing that more often. The only problem I had on Friday was a headache but I think that was caused from work and many of my little preschool children having loud temper tantrums. I know I couldn't understand how my MO didn't think my knee pain and light headed moments weren't caused from Tamoxifen. She told me that leg cramps are from Tamoxifen but knee pain wasn't. I told her that most of the dizzy moments happened a week before my period and a day or two during it. She told it was PMS. But I never felt that way before. Anyway thanks for listening. I will just keep on plugging away and hope things get better. Right now the only good thing is that my pelvic pain is as bad as it used to be. How are things going with you?
BlueKoala- Glad you have lots of options for leaning objects. Grateful that you haven't blacked out I hope not to have that happen either. Wishing you all the best in staying up right on your feet. What other SE do you have? Have you every thought of stopping or are you going to stay the course? I am going to really try to make it to 5 years. how many more do you have to go?
Vampeyes- I had really bad pelvic pain for the first 3 months of taking Tamoxifen, but now at 6 months it has become much more mild and some days I don't even notice it. I hope it gets better for you! Wishing you the best.
Georgia- Thanks for sharing your ear issues with us. I hope things get better for you and I hope Tamoxifen doesn't cause you any other wired issues.
Okay off to eat some healthy food and drink some tea. You know I might just have a brownie with my Tamoxifen tonight just to sweeten it up a bit. I can't go healthy food 24/7.
I hope you all have a good weekend.
Hugs to all,
Sara
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I think this summer is going to suck. It’s not hot here yet, but I now have the AC on as I am about to DIE. Can’t sleep under even a sheet right now. Have mercy! (If it would just flash and be gone, but noooooooo, stick around and make sure I’m hot and sweaty and miserable and laying in front of the AC vent, then go away fast so I freeze. Thanks big T for the SE
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Hi to all!
sm627- Glad to hear you are feeling less crazy! You may be too young, but there was a song that went ... "The foot bone's connected to the shin bone and the shin bones connected to the knee bone.... Etc Etc." I think I would have your preschoolers learn it and sing it for your Endo. Maybe she could practice it so she remembers that bone pain is bone pain.🎶🎶🎵🎶🎶 I get the pre-school headache. I have grandkids and the youngest are a set of 4yr old twins- One fire engine red haired boy and his blond haired twin sister. The red head has the famous temper. He can cause a migraine with his tantrums. His pre-school teachers are heros!
Georgia- I am post-menopausal too and the crickets are singing in my ears tonight! (Tinnitus) I can't find a trigger and while it is not every night, when it hits, it is maddening. If I wasn't afraid of BC recurrence I'd take a break too. One weird thing about side effects from T, they keep changing from day to day...
Time for Tamoxifen and a treat...
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it would help to know if chemo was done or not also
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Here is a link to the survey/questionnaire I have come up with so far, what do you think? Ready to get some answers?
Cheryl
Edited by Mods to remove link to survey. All surveys must first be preapproved by the Mods, per Community Rule #4 & #14: https://community.breastcancer.org/help/rules
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Cheryl,
This looks good! I can't think of anything to add really. However, I might recommend the following changes:
(1) Regarding "How ling have you been on hormone therapy"...I recommend that your first two response choices as follows: "Less than 6 months" and "More than 6 months but less than 1 year"....This way, your time intervals will not overlap. For instance, a woman who has been on therapy for 6 months will clearly have only choice that works. Same for women who have been on therapy for one year. With your current selections, both types of women could check two boxes.
(2) You might want to indicate where we can "Check all that apply." I assumed it in some cases, but I didn't want to fill out your survey to see if this was the case.
Great idea to do this! Other women likely will have more feedback before you release it!
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Scarfgal,
Thank you so much for the feedback, I really appreciate it. I have made these and other changes. It will be interesting to see the information as it comes. Are you able to view the percentages/results?
I have messaged the moderators in hopes they will post it somewhere where all can see it.
Cheryl
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I don't see any results but I have not filled it out yet. I would love to see the results and even check out the raw data, if you are willing to share it. When my semester ends in May, I would like to see what the data might suggest, looking at it in different ways.....maybe a few of us could take different views of the data and compare notes to share with everyone.
I am off to teach now....will check back later this evening....
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vampeyes- Great survey. I had a thought... I wondered if there was a way to indicate not just the Hormonal treatment we are currently on, but if we tried any other treatments that we stopped. I've noticed many of us on Tamoxifen had tried other treatments first only to find they weren't tolerated. Might provide some interesting trends.Thanks for all your hard work.
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ThreeC,
I should be able to add that question, will lol into into it tomorrow.
Loving all the feedback, thanks all! 💞
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vampeyes---very good questionnaire! I might add about the questions for hormone therapy. I checked that I take Tamoxifen but I've actually just finished it after my required 5 years (BCI test said no benefit for continuing another 5 years) and there wasn't anywhere to check that I took it in the past. One question also asks about time of treatment but doesn't give the option of 5 years, just less than or more than it looks like. Otherwise I think it's great!
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Lala1,
Thank you, I made changes. Unfortunately I don't think we will get many more responses, not allowed to post the link for it on the breastcancer.org site.
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Well that's dumb. This survey can only help us. Can't really see a downside to getting as many responses as possible. Oh well, you never know what's going to upset the apple cart.
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Hi everyone! I believe I will be joining the tamoxifen taking team here in the next few weeks. The SE's sound rough, but I'm trying to not worry about those until I actually experience them. I'll see my MO next Tuesday for the first time, it took forever to get my Oncotype DX score back after my surgery in March. From what I've read, I am going to need to stop taking Paxil, which I have been on for YEARS. I was curious if anyone else here had that same path and if you went directly to a different anti-depressent/anti-anxiety medication and how that experience was.
I take Paxil for panic attacks and it works wonderfully with no side effects. I took Lexapro in the past and hated the SE's, so I think I would like to try Effexor.
Coming off of Paxil is hard (dizzy, foggy, unsettled feeling) and I'm trying to prepare as many questions as I can for my doctors in the coming weeks.
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Hi SadieSue!
I am on Trintellix, didn't have to ago or change with the Tamoxifen. I wouldn't recommending going off till you see the doctor. Likely they will prescribe something else and possibly this will help with ther withdrawals. Good luck and welcome? 😜💞
Cheryl
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QUESTION:
Has anyone tried the Brand name version of Tamoxifen? Curious to know if the side effects are different than the Generic versions. Especially seeing as some women are posting that different Generic are giving different side effects.
Cheryl
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I don't know but I bet it would be expensive. I have to buy brand Ritalin for my daughter and it costs a fortune. When there is a generic, they are not crazy about paying for brand.
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vamp eyes, what is the brand name for tamoxifen? I take apo tamox of the now sadly infamous apotex group0
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The brand name is Brand Name: Nolvadex, I was thinking of asking my doctor for it next month when I see him. I can get it covered if the doctor writes no substitutes I believe, but if there is really no difference I won't bother with it.
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Molliefish, good question. I started Teva brand in 2013, and it switched out to APO (rip Barry & Honey) in 2015. The pharmacy stuck a label on it saying 'new look'. Now that I think about it I had more knee issues with the switch. I think I'll have a convo with my pharmacist about all brandsavailable here in Canada.
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How do you manage the fatigue? I am trying everything. Iron pills, iodine, magnesium, greens with energy, less coffee, more water. I can't live this way anymore. I just want to lay around and sleep all the time. This is not my personality at all. 😭😴😪
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Vampeyes the only thing that works for me is a consistent exercise regime. When I take occasional breaks I turn into Rip Van Winkle. I’m sorry you’re suffering
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Vampeyes if I knew the answer I’d tell you. The fatigue is relentless. Nothing seems to work. When I get home from work in the evenings it is all I can do to fix dinner. I’m already in bed. You’d think I’d be able to sleep really well as tired as I am, but the sleeplessness and constant waking up stop that. If I could get some consistent sleep maybe the fatigue would be more manageable
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Hi everyone, I checked with my insurance company and as long as my MO writes no substitutions on the prescription, they will pay for the name brand.
As far as the fatigue, i am considering asking for Ritalin. I am tired all the time! I thought i read somewhere that Ritalin is sometimes given with Tamoxifen. Has anyone else heard this?
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ugh, if anyone finds an answer for fatigue post it. Lol
I also feel like i could go to bed every night about 630. No energy at all.
The joint pain is awful. The only good thing is my hot flashes are down to only 2 now. Instead of all day....
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I too find I'm more tired than prior to tam. My worst times are getting up in the am. I used to, not that long ago , get up at 530 to get a work out in before I started my day. Now it's work to get up at 645 in time to get ready and take my girl to school and then head out for my day. Prior to chemo and tam I could get by easily on 7 hours sleep. Now I'm back to 9 to 10 Just to feel rested. I know some ladies on here who are needing more than that. I don't have any answers. I just keep on keepin on0
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Nothing helps me. I give in with naps or get out of the house for fresh air.
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