Bottle o Tamoxifen
Comments
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Renee, sorry I don't have any experience or knowledge about the blood counts. I'm sending good thoughts your way for figuring it out and that its cause is nothing serious. My best to you.
Sue - Woohoo!!!!! Good for you!! Thanks for sharing!
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Sue - I can certainly appreciate your milestone!!! Congratulations!!
I think I know what you mean about your friends being over it!! I get a lot of 'but sure you're fine now - it's all behind you'!!
I hope the next 4 years zip by for you!!
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Irishmom,
We have a lot of the same...details(?). I too had my uterus but not ovaries removed about 3 years ago, with the idea of a slower occurring menopause. When I asked my cancer surgeon about having my ovaries removed, he told me after chemo they'd be shot anyway. ( I was 47 when he said that.) So I have questioned taking tamoxifen rather than an AI and all my different doctors have said basically the same thing....take the tamox for a year, then we'll revisit.
After doing some more reading I decided I am not so concerned anymore about switching so quickly.
(1) I read that tamox has been used for 30 years (is that right? I couldn't re-find the source). So if it's been in use that long, I don't expect any "surprises" from the FDA.
(2) Regardless, it's been available long enough that it's a cheaper generic drug. Waiting a couple of years, maybe some AI will be generic.
(3) No loss of bone density as in AI - although I understand that AI bone loss is reversible.
(4) No uterus, so no uterine cancer concerns for me.
I did read the study about better prognosis, less chance of recurrence with a couple years on tamox followed by a couple years on AI. For the blood clot concerns I got my cholesterol checked for a baseline, taking fish oil caps for triglycerides and walking 30 minutes/day on the treadmill. There was probably other advice for avoiding blood clots, but I can only implement so many changes at a time!
Granted I have only been on the tamox 3 days, hardly time for SEs to show up. But since I too have been advised to wait a year, I'd have to deal with them anyway for that long.
So if anyone has comments, advice about this approach, please share. If anyone wants sources for what I remember reading, I will try to re-find them.
Good luck to everyone starting their tamox.
Angela
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cs777: Can you tell me again the benefit of taking such a large dosage of Vit. D? I know you posted it awhile back, but I couldn't find the first posting.
Brenda
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Hi Brenda, It's not so much about taking any specific dosage, but about having enough in your system to be healthy. In this case, vit D3 has been proven to be necessary for bone health, as it is a critical regulator of Ca balance in the bones vs the rest of the body, and without a level over ~30 ng/ml over some time you're much more likely to develop osteoporosis or (in kids) rickets. It's also critical for Ca absorption generally, which affects neuralogical function, and it's clear that vit D3 acts in nearly all the tissues of the body and so presumably is important to them too (e.g., immune system, hormonally, etc.). There's a lot of suggestive evidence relating deficiency of vit D3 to various cancers incl breast cancer and other chronic disorders like MS and depression, but I don't want to overstate that - the research is ongoing and doesn't prove causation yet. Nonetheless...
It turns out that many recent studies of random people in the US (and other western countries) have shown that the majority have insufficient (21-30) or deficient (<20 ng/ml) levels of 25-OH-vitD3 in their blood (that's the metabolite that's used to track vit D3). This finding is attributed to our spending much less time outside generally, plus wearing sunscreen when we're out, which totally blocks vitD production in our skin (which is how we'd normally get it). In addition, the further north you live, the longer wintertime you have in which you'll make no vit D in your skin since there's not enough UVB in the sunlight in winter. Anyway, when someone is as deficient as I was, typically the docs recommend taking a large dose of 50,000 IU 1x/wk for a while to "fill up the tank", then a lower daily amount for "maintenance". (The 25-OH-D has a half-life in the blood of about a month, making such a "fill-up" possible.) The problem I found in my research is that no one agrees about what the maintenance dose should be these days. Many many years ago the US RDA was set at 400 IU/day, but that was at a time when people didn't wear much sunscreen and spent more time outside. Nowadays, as I said, many recent studies have shown that people ingesting that much are still very deficient in vit D. So, the dosing regimen I described has gotten me to 60 ng/ml. I can't prove it's not still rising but since I have a long way to go before I hit the upper level considered "standard" I'm not going to worry about it. I've only seen one report of vit D toxicity in the literature and it was someone taking something like 100,000 IU/day for months. Now that's a lot!
Well that was long, but i hope it answers your question.
Oh, an interesting (although 10-yr old) story of vit D discovery and understanding can be found at http://www.beyonddiscovery.org/includes/DBFile.asp?ID=91Have a great weekend everyone! CS
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Sue-congrats on a year down!
Bookworm: I think everyone's onco suggests different things. Mine said to split it twice a day when I started it in January.
CS knows what she is talking about since she is brilliant and way smarter than most people I sure know! If she says it is a good andn safe thing, than it defintely must be so. I don't doubt her one little bit.
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Hello tamoxibeauties! Sorry it has been so long since I posted, just been busy, busy, busy. lol But, good busy! Living and loving life.
I pray that all of you are doing ok on tamox and have no or minimal side effects. For those new, I had headaches at first with tamox, but, they have vanished now. So yippee for that!
I mainly came on to wish everyone a very Happy Mother's Day! I pray that all of you have a wonderful day with your families. My Mother passed away, so, I celebrate it with my Aunt, who became like my Mom, and, my mother in law. Looking forward to a great day. Hopefully, someday I will be a Mom myself!
Ok.............later ladies!
♥ Susie
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Ok, you just knew I had to leave you with a kitty pic, sooooooooooooo here it is!
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Hi All!
I thought I'd check out this group since I'm technically a member now.
I've been on Tamoxifen for 3 weeks. I had my surgery, 6 rounds of FEC chemo, 6 weeks of radiation and now this.
It's only temporary because I'm having an OOPH on July 15 and then I switch to Ramoxifen.
So far no side effects other than being creaky through the hips but I'm not sure if that really is a SE of this.
I do have trouble remembering to take it. I'm on 1 pill a day and it comes in a blister pack. They are 3 packs of 10 (30 pills) in a box.
On my calendar I have written 1-30 and I'm supposed to check it off. But I keep forgetting to do that and take the darn pill.
What do I do - take it when I remember or miss it?
So far I've only missed by a few hours (I usually take it in the morning) but tonight I completely forgot and I've just taken it now.
What do I do about the morning dose?
Any suggestions would be helpful!
Thanks!
Marie
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I forgot to add that most days I have a headache but today I did not.
Was that a coincidence or is that a side effect of the Tamoxifen?
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Marie, Here's one way to remember to take a pill: Put the pill next to your toothbrush, in a teacup or something, whenever you think of it during the day. Then just pop the pill when you brush your teeth. Usually the prescription info sheet says what to do if you miss a dose - if it doesn't, you can call your pharmacy and they'll look it up for you.
Best of luck! - Ali
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Hi To All,
Susie: I saw that kitty cat picture as I was rather quickly going down the page and said to myself ' MUST BE SUSIE' and it was. LOL
Like with the headaches, most of my earlier SE's have subsided except the dry eyes and I don't see that mentioned much so that must be a rare one. I've been on the Big T for 8 months now.
Hope all our Tamoxitrainers are enjoying a bit of spring weather.
And Happy Mother's Day to all the mothers and those who are fortunate enough to have their moms still with them.
Bonnie
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Bonnie I too have the dry eyes but it started with chemo not Tamoxifen.
I have had ongoing issues with focusing and if I move my head around too much it's like I'm on a wild ride. Afterwards I get lightheaded.
I know it's my eyes because if I do the same thing with my eyes closed I'm fine!
When I wear my reading glasses I'm fine.
I also attribute the headaches to eye strain from not wearing my glasses enough.
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Love your kitty picture Susie! They always make me smile.
I have dry eyes lately, but, I just thought it was allergies. Maybe it is the tamox.
Happy Mother's Day to all!
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To the gal who asked about taking both pills at once or separately at two diff times/day: In terms of getting the dose you need, it doesn't matter. The tamoxifen (and its metabolites) builds up in your system over a few weeks until you reach a "steady state" level. But that steady state has little peaks and troughs sitting on top of it like waves that coincide with each pill you take. Those peaks and troughs will be littler if you split the dose and bigger if you take it all at once, but expts have shown the average steady state value is the same either way. Note that the peaks occur about 5 hours after taking the pill(s). For women w/problematic side effects, some report that splitting the dose is helpful. Presumably it keeps the peaks a little lower and therefore a bit less problematic. Some women still take it in one dose but have experimented with whether they feel better if they take it in the evening or morning.
The most important thing is just to take your full dose every day, picking a time you'll remember it. Speaking of which, to the gal who asked what to do if you forget...I recall the drug insert says to take it when you remember you've missed it, unless you're very close to the next dose, in which case just skip it and take the next one. Don't take a double dose.
bcincolorado - thanks for your confidence, but I'll still encourage you to take a questioning mind to everything written on boards like this. What's that saying..."trust, but verify"? I do try to keep my comments to things I find solid data for (or else I say when I don't have good data), and my biomedical research background helps in this arena, but everyone should still evaluate and verify things important to them for themselves.
Happy Mothers Day to all the moms among us, and to all our moms!
CS
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The comments about dry eyes are interesting. I've felt like mine have been that way some too but thought it was due to lack of sleep from being uncomfortable with TE in and getting on the Tamoxitrain at night for a hot flash or two.
CS777: I wouldn't trust everyone's opinions, but I know you are a scientist and read enough of your posts to know you research everything before you post something for us.
Happy Mother's Day to all of you who are Mom's or have Mom's or other female friends who are role models!
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Hello My "T" Gals, Love all the great post & good Info. I apprecaite all of you!
Click here: YouTube - Pink Warrior Happy Mother day to all My Pink Warriors !!
Hope you all are Having a Blessed Mother day weekend. I have to work on mothers day-Ugh
Been Back on "T" For 1 week now since infections gone. Starting to have headache & I have been moody today! My Husband has notice a change is my mood said I am very edgy today, maybe it just him Not the "T" LOL. {{hugs}} Gina
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Hi Ladies.....this is a voice from the past ! I try to check in on you all from time to time and see lots of newbies.
I noticed that many are wondering whether or not the tamoxifen is working - the whole side effect/ no side effect debate.
First off, for those of you who dont remember me, I'm first hand evidence that SEs are NOT necessarily indicative that T is working. I had BAD hot flushes at night, but I turned out to be a Poor Metabolizer of Tamoxifen so that the amount of Endoxifen in my system was subtherapeutic (i.e. I was getting NO benefit).
Secondly, although it aint cheap , there is a way to determine if you are getting therapeutic benefit from Tamoxifen. A super nice and helpful geneticist on this site, Kashcraft, told me when I asked her that there is a test that measures endoxifen levels. The funny (and perhaps I mean just the opposite) thing is that my medonc didn't know that this test was available anywhere ! Anyway, testing can be ordered from NMS labs with a prescription - http://www.nmslab.com/SearchResults.aspx?code=4311BCost is $396 and requires a blood or serum sample. If you're concerned or inquisitive, print out the information about the test and the lab and ask your doctor about it. (By the way, cynic that I am, I checked and Kashcraaft is not affiliated with this lab.),
Finally, although it is by no means ideal - there are options for premenopausal women other than tamoxifen so again if your MedOnc says there are no options call him/her on it. I know because I am one. I now get a Lupron shot - which puts me into chemical menopause and take an AI (specifically Arimidex).So far, 4 weeks in, not much different than my SE's on Tamoxifen, except that now, to minimize side effects, I take the pill in the morning rather than night .
Hugs to all !
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Hello everyone,
I started taking Tamoxifen on Dec. 25th (Merry Christmas!), so I've been on it for 4 1/2 months now.
At first, I got a lot of hot flashes but they subsided after roughly 2 months. For 2 months after that, I was feeling good, I hardly had hot flashes. Well, they recently just came back, and with a vengeance!
My onc. told me to take Vitamin E twice a day to help with hot flashes. But it just seems that it is not working and that it possibly makes them worse...
Anyway, my questions are: Is anyone on this thread also on Vitamin E ? Is it working for you? If it is working for you, how long did it take before it started working ?
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Hi Marion! Yes, a bunch of us ARE on Vitamin E...Or the Fish Oil with Omega 3.....& Vit D, & Calcium & A Multi-vitamin & Glucosamine! I don't take plain E....I'm taking the fish oil with Omega 3......I feel really good, but don't know if it is the vitamins, or what. Just try the proven vitamins with the Tamoxifen, & see if you notice a difference.0
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Marion - I am taking a separate vitamin E capsule - 1000 mg along with the rest of the vitamins. I haven't really noticed if it helps yet. I tried Effexor but didn't think it helped at all and I didn't like being on it.
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Hi girls - Happy Mothers Day to all - I see alot of women are taking the Fish Oil tablets but when I went ot buy them at the pharmacy the pharmicist told me the best type to take is the fish oil - omega 3 6 9 - any thoughts on this. I'm also taking Vitamin D once a week 50,000 IU per week for 12 more weeks, (this is the second prescription I already took it for 12 weeks and was still not about average so they gave me another 12 weeks), once I'm done with the prescription then the doctor ordered Vitamin D with calcium - any thoughts are appreciated. Thanks Kathy xoxoxo
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Hello everyone & Happy Mother's Day:
Marion:
My onc had me taking 3 400 iu vitamin e/daily since Februay when I started Tamoxifen....it did not help with the hot flashes at all and I took it faithfully. When I saw him last week he said just stop taking vitamin e...some women it helps, some it doesn't. He prescribed Celexa 10 mg to help with hot flashes and I have already noticed a great improvement. I actually have not had a hot flash all day today and had been having them practically hourly through the day. I could sleep maybe 3 to 4 hours at nite before I would have one and then I'd have them the rest of the night.
He mentioned Effexor & Celexa both.....I didn't want Effexor, due to reading other ladies experiences on it. I took Celexa in 1997 after my Daddy passed away and tolerated it well so I opted for the Celexa....
Hope this helps and sure do hope you can get some relief. Rest is so important in the healing process....and I definitely need all of it I can get!
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I'm taking vitamin E also. I take 400iu twice a day in addition to my multivitamin. My onc said to take 800-1000iu per day. She said it helps about 20% of women with their hot flashes. Thankfully mine aren't too bad. I'm not sure if it is really making a difference or not since they never were too bad to begin with. If they ever do get worse, I'll consider other meds at that time. If your hot flashes are unbearable or really disruptive to your life, I would definitely try something else.
Psalm121: I was looking at your diagnosis info at the bottom of your post. I wasn't officially diagnosed until 8/4/09 but my excisional biopsy was 7/29/09. Otherwise we have the exact same stats. I consider my cancerversary to be 7/29 since that's when it was removed from my body. Hard to believe that day is not too far off. I actually started this whole cancer process just under a year ago. I found my lump the day I walked in the Susan B Komen walk in our area--what irony!!
TCK
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CS--Thanks for all the info on Vit D. I have been deficient for quite some time; I haven't had my level checked since right before chemo last year and will likely have it ordered when I see my onc next time. Both he and my internist have advised me that I do not need to take 50,000 IU/week for a number of weeks. They just focus on what I would call a maintenance dose. My chemo brain is creating a memory challenge for me right now, but I think I take 2500 IU every other day. I appreciate your input and I will follow up about this issue, again.
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Marie, good to see you again. I almost didn't recognize you....you have to pop into our other threads and catch up.
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Hannahbearsmom:
As I have passed the date-milestones of where I was the previous year and thinking about where I am now, I have wondered what date would be considered cancerfree-versary for me. I still can't decide....is it the mastectomy date (Sept 15th)? the date of my last chemo (Jan 7th)? the date (May 4th) I had a left-breast mammogram and it was Negative? I guess I feel mostly that Sept 15th would be right, as that's the date "IT" was officially removed along with a very personal, intimate part of my person and personality. I did chemo because of my age (45) and my DS is my heart and I wanted to fight bc with absolutely everything....now the Tamoxifen. Yeah, the side effects are aggravating and slow me down...but after chemo....Tamoxifen is a Vitamin!
Also, TCK, I will be thinking of you as our important dates approach.....we share dates, similar diagnoses and genuine concern, love and support.....Thank you for that!
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I just started back on Tamoxifen after being off of it for 9 months (oncologist said I didn't need to be on it since chemo stopped my periods - based on this protocol: CLICK). Now I have had a couple of periods in a row and extremely tender breast (still have the left breast) When I was on Tamoxifen last summer I had awful green sticky vaginal discharge. I am crossing my fingers that doesn' t happen again. Has anyone else had this side effect? It just made me wonder what in the world was going on in my uterus for that to be occuring. Amazing how within just 24 hours the tender breast sensation is GONE!0
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Koryn i also have that terrible discharge. I usually have to wear a pantyliner or it will ruin my panties. It is very gross. I have been on Tamoxifen since August of 09. I thought maybe it would lighten up after a while, but not so far. As a matter of fact none of my se's have lessened. I have hot flashes, chills, mood swings meaning one min I'm grouchy and the next I am crying. Terrible joint pains but I have just put myself on glucosamine/chondroitin for that. I hope it works. My onc wants me to have my ovaries removed. I am 43 and my periods will just not stop. Has anyone had theirs removed that is about my age? As bad as the se's are from the Tamoxifen, I am really scared of how bad it will be to be thrown into menopause so fast. I go to talk to my gyn about all this in a few weeks.
To all those who are having bad se's hang in there. Hopefully over time it will get better for all of us.
Susan
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Susan-
I'd rather have the s.e.s than menoapuse any day. Chemo threw me into instant menopause for about 8 months. My hormones tested post menopausal after chemo last May but by this March that had reversed.
I use progesterone cream which stopped hot flashes. There is a good thread about that here on the natural girls forum. If the green icky discharge returns I may decide to try something else though. All I could think while I had that was what in the world must be going on inside my uterus if that is what is coming out and with the 253% greater risk of uterine cancer on Tamoxifen I just don't want that. Maybe the progesterone cream will help your mood swings, bad periods, etc.? It claims to. Many women here have a good point - they have not come up with anything to "block" progesterone like they have estrogens blockers so maybe progesterone isn't such a bad thing - it balances overproduction of estrogen.
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