Bottle o Tamoxifen
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Posted this in the other Tamoxifen thread also. I am post menopausal since my ooph. I have been on tamoxifen for 3 weeks. Today I feel like I did when I still got my periods - crampy and bloated. Is this normal or something I should be concerned about?
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★Happy NewYear!★
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I hope 2014 brings us all health!
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BayouBabe- I often feel bloated since I started tax in Oct. For me it is constipation, like when I was pregnant. It makes me very irritable, but there have been some days recently (and they seem to be occurring more often) that I feel normal with no bloat. I don't really have cramps - but rarely do.
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I wanted to add that I had reg periods until I was dx in June 2013, and my last period was the day I started tax in Oct.
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susanhg1234, thank you so much, and all the other great women here. i did get the ok from my onc for stopping for two weeks, and then i call him back. took 9 days before my pain even lessened a little, but guess what! on the 7th day, i actually felt some real enthusiasm & joy, since this whole party started, over a year ago. so i am in there somewhere. i dont think my arimidex induced osteoporosis is going to go away, but it is nice to know that my mood is naturally lighter, now that i am off tamox. i know how important it is, to take it, but. i am so tired of all the "special effects, i am about willing to take my chances. what good is being alive, if i cant muster energy, strength of will or any kind of happiness, to do it? love your phrase, about the dead sea, too, cant wait till someone gives me an opening to use it! hoping everyone has a better 2013.
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HI all
I am new to the tamoxifen game and keep holding my breath for SE but 5wks in no news is good news. I WISH I stopped regular periods but oh no, christmas day like clockwork- maybe next month or over time.
I know this will sound all new-agey to some but I highly recommend yoga- I am not saying it has to be pretzel or super-heated or flow yoga that feels like ADD. I have been doing yoga for about 10 years and its been a godsend during diagnosis, surgery, rads and now. If you are low energy (or no energy) you can still take a class and the flexibility and increased range of motion not to mention sense of accomplishment and calm is a really good thing. Immune system and lymphatic system benefits too
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RunFree - I often say my uterine issues are not normal while on Tamox. I don't write about them much since I don't want to scare anyone but I do want to try and be helpful.
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wyo - thanks for the good thoughts about yoga. I just wanted to say though that when I had radiation fatigue I would not have been able to do yoga! Sometimes it felt like I needed to think just to keep breathing. I knew from the start that exercise was supposed to help keep fatigue away so I really tried but after a week and a half I could not do any exercise and cope with my home and work life!
If I could have spent all day resting and just do a yoga class that would have been great - but the real world had different expectations of me.
I start Tamoxifen tonight and am actually worried about how I am going to get in my daily exercise seeing as I haven't quite bounced all the way back from rads yet.
For anyone who can do yoga - go for it.
Question - I see Tamoxifen comes in 10 mg strength and 20 mg strength. - I have been prescribed to 20 mg. Who gets the 10 mg?
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Bounce, I got 20mg as well. I am 45 and started last week with it. No SE but My knees started bothering me. Like if I did too much exercise, especially when I bend them. Is that normal?
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Bounce, it doesn't look like you've been out of rads for very long. Give yourself some time to regain your energy.
I've only heard of women using the 10mg pills for a twice-daily dose. I believe the 20mg daily dose is the standard.
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I have not seen people prescribed 10mg but I have seen during drug shortages people having to take 2 10s to make the 20mg when its not available.
My cancer support center offers yoga for cancer survivors- the level is focused primarily on breathing, relaxation and regaining/maintaining ROM. I thought it would be too "easy" since I practice routinely but it was just right. We did some guided imagery which was pretty great too- its free so I want to support them while taking advantage of a great thing. 75minutes out of my day just for me!!
While down in Miami I went to a great yoga instructor who said I should not be supporting my body weight (downward dog/plank pose) for 6 months to allow nerves and lymphatics to heal- uh oh too late I had already done a few more strenuous classes and I have backed off significantly as I do get increased axillary numbness after too much vinyasa- hmmmmm.
Cautionary tale- ** Read lots on this site and others about NO hot yoga- contraindicated for lymphedema risk
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I have read no hot yoga. There isn't any offered where I live, but I've been a bit intrigued. Oh well. I simply heard no downward dog, with no time limit, unless you've been slowly building upper body strength. Glad to hear just 6 months.
The recent national Tamoxifen shortage caused my pharmacy to use Watson instead of Teva. Anybody still getting their Teva with no shortage? I am feeling a bit more symptomatic since a little after I started the Watson bottle, more hot flashy and not sleeping enough.
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Okay, here's a somewhat taboo side effect for discussion, that has only really been bothering me for the past few weeks - stress urinary incontinence. I had the cold/flu starting almost 3 weeks ago and every time I coughed, I have some urine leakage. I'm almost finished my 5th month on Tamoxifen. I actually first noticed this a few months ago, but didn't blame it on the Tamoxifen at that point. Has anybody experienced something similar? Dr Google suggests this can be a Tamoxifen side effect.
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I am getting Teva but due to the shortage I am getting the 10mg pills (and taking 2 a day). Yes, I have noticed increased stress incontinence (still minor). I have always believed (and I have noticed) hormone levels influencing incontinence (would be worse at the end of my cycle- which has stopped since starting tax).
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Update on the itching......as soon as I resumed taking Zyrtec, the neck itching and eye sensitivity stopped. So I guess I'll be keeping that in my pillbox year round for the next three years.
Wow, hadn't heard about the Teva shortage...."it's always something!" But if ten mg is available, I suppose using two of those will work just fine.....
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Run Free - I am way more symptomatic on the Watson brand, I was on Mylan.. my local CVs is still trying to get the Mylan for me. I did great on that.
I do yoga as well. Great for everything! I also see a naturopathic doctor who has me on Andrecor - It is supposed to help the adrenals when you are on tamoxifen. My fatique and brain fog have improved temendously. He also has me on Niatab,Riboflavin,Ubquinol,Borage Oil,Kelp, and K/D liquid..all to make tamoxifen more effective. I have canned everything else I was taking except melatonin and baby apsirin.
A great book to read: "The Whole Food Guide for Breast Cancer Surviviors - A Nutrional Approach to Preventing Recurrence". Great info on supplements (and diet).
A Healthy and Happy New Year to everyone!
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I take the Teva brand and haven't had a problem getting it. The 10 mg dose is used to twice daily dosages. I started Tamox that way and once my body adjusted to it, I went to the once daily dose. And the countdown continues - 2 years and 1 day left. Yeah!
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Saw a therapist this week and discussed Ritalin for chemo brain/brain fog/fatigue/etc. We had our phones on fire on research mode. Settled on Provigil. Longer half-life. Took script to my pharmacist. Small neighborhood pharmacy with true individual service. Still delivers. He looked for flags with other meds. Nope. Ran through. Nope-required pre-authorization. $350 for 15 scored tabs. oh my! IF authorized he will call me with co-pay. If too high will go back to discussion of Ritalin.
My pharmacist and the "young guy" the PharmD both thought this was an excellent plan. Told them=another idea from my friends on the threads. Thank you ladies. I thought I would always be chasing rabbits.
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Required pre-authorization: CRAP. Pardon my French. Just seems like the tail wagging the dog. But it's great to know that not only is Ritalin a pretty good idea, but there's another option beyond it (medically speaking, if not financially).
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Run-Ritalin should go through fine. With my insurance will be $3.00/month regardless of amount. Provigil-am going to ask pharmacist if the cost increases greatly with amount. If it is approved and the co-pay is decent will contact therapist for an increase in number. He did 15 scored tablets and wants me to do half for 30 days to see how it goes. Drug costs are crazy.
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So, I have been on the tam for 4 weeks now, and I am exhausted and my bones and joints hurts like they did when I was in chemo. I am hoping that the SEs lessen as some of you have mentioned. Trying to find the energy to do really basic things (work, cleaning) is so hard.
RunFree, where did you hear no hot yoga? I am trying to find a yoga studio near me that has experience with post-mastectomy patients, and just want to make sure whatever I choose for classes is not going to cause even more issues.
Thanks!
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Hi All!
I've been on Tamoxifen for 5 months now. Really the only SE I have noticed is the HOT FLASHES! They happen multiple times per day and night and although I don't actually start sweating (not a big sweat-er anyway) I get so unbelievably hot that I have to take off my hat, jacket, shoes, etc. Basically strip down wherever I am. They are really annoying but not debilitating. Plus I read an article that said that women who have hot flashes from Tamoxifen have a lower recurrence rate because it means your body is actually metabolizing it so it is working!
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MaureenB-
I hope that is true! I have flashes all day and night too. I've always been a sweaty girl- and I turn into a terrible mess a few times a day, and several times a night. NOT looking forward to summer in central Texas with tam. I will just have to keep the tub full of cold water 24/7 since I don't have a pool!
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Maureenb I like your thinking - I have 1-2 flushes a day - no sweating as such just a really hot flush that is uncomfortable for 5 mins or so
I have been on T for nearly 3 months and am in a hot west australian summer ( that's not SOOO hot) so JWoo it's def manageable !!
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For those with the bone and joint pain what does your MO recommend?
For hot flashes-I was put on Effexor ER prior to starting the AIs. I started low dose and am on 150mg now. I have few and they are very mild.
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JWoo, I found the link. Someone posted this in the 2013 Running thread a few weeks ago.
http://www.stepup-speakout.org/Handout%20doc%20for...
Let me know if the link doesn't work. This only pertains to people who have had lymph nodes removed under their arms (don't know about anywhere else, actually). It is the most, well, maybe alarmist thing I've seen about lymphedema risk, but it does say there are ways we can resume strength training and other upper-body exercise, just as long as we're incredibly slow and careful about it. The yoga part is at the end. But the recommendation to avoid hot yoga doesn't say to build up to it--just says not to do it. If you have a PT or trainer or doctor you can talk about this with, it would be great if you--or anyone else--could report back and let us know if this handout is overstating the risk.
Maureenb, I've been having much more problematic hot flashes for the past few weeks, coinciding with getting a different Tamoxifen brand. What you said about how that means we're metabolizing it better is a bit thought-provoking. I wondering if that means I should stick with the brand that works less well for me? Seems to me the active ingredient(s) would have to be the same, and only the fillers would be different. Maybe I'll write to my MO with this question.
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Thanks for that link, Run. I have to honestly say that I have been so busy with my "get fit" mode that I have totally stopped worrying about lymphedema. So far (over the past eight months) with my working out every day, I have not had any symptoms, but you can be sure I will be thinking about it with every future plank! I think I'll pass this article on to my trainer who is also a bc survivor (albeit a much younger one).
It does get me to thinking that I might want to check into whether I need a sleeve for a flight to Europe this Spring. As Rosanna Rosanna Dana used to say, "It's always something..."
MO emailed today to let me know she has yet to hear from the cardio doc about "approving" the Ritalin trial. Fingers still crossed.....
Re: the theory that the hot flashes show the tamox is working....I do recall that my MO said basically the same thing regarding my having several side effects over these first two years....that it meant that it was doing its estrogen blocking job and I'm just very sensitive to that estrogen change. So....there's the silver lining. But I don't think that we can assume that no SEs mean the converse is true, since some folks are just not that sensitive to such hormonal changes....lucky ladies!
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Lacey, that's very interesting! My PT said to wear a sleeve when I fly and for an hour or more after. But she didn't know everything, because she had me doing exercises with a resistance band and the article says to avoid those, since the resistance can't be precisely measured. If I ever go back to her, I'm going to show her this article. I'd be glad to have the most extreme aspects of it debunked. That is wonderful that you've been working out! I would like to start planking too. I will just start with very short ones. I hope you get the green light on Ritalin!
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