Bottle o Tamoxifen
Comments
-
Little Red hang in there, hope some day you find someone special as I did but know well the men suck routine! My husband is my rock I am truly blessed. Here you can spout about any and everything we are here thru tamox and any issue that affects our life. Glad the ambien is working for you it works great for me.
Busy week at work, feeling stronger every week but have to have my sleep, I agree that rest is so very important. I choose wine one day over my ambien and was so tired the next day. Used to be if I had a rough night pre BC I was fine, now it hits me hard if I do not sleep, it affects my whole day.
Hope all have a Happy Friday, I will I get to work from home for a few hours and then what ever!! Hubby and I are going out for Friday night dinner! Tamox SE's still livable, but starting to get leg cramps at night some times.
0 -
The weekend is near!!!! Yes Friday will be heppy, it is the gateway to the weekend!!!!
I am very tired tonight!! Had a hot flash at 4:30 and never wnet back to sleep and like the energizer bunny I am still going!
0 -
Ladies - Still reading away. Almost up to page 50 of your old posts, compiling a comprehensive list of side effects and other important info. My favorite tidbit by far are the "special" side effects - shoe shopping and mini orgasms. Aaahh, if only.........
0 -
Thought you might be interested in this Vid D info - especially those of you not in sunny California:
"The Canadian Cancer Society has recently recommended that a vitamin D supplement of 1000 IU/day be taken by all Canadian adults during the fall and winter, and that those at increased risk should consider year round supplementation.[51] Other Canadian organizations have also recommended higher intakes (800-2000 IU) for adults.[51-53] Although further research is needed to determine the vitamin D requirements of individuals of diverse ancestry living in Canada, the results of our study support the need for higher vitamin D intakes to improve the overall health of young Canadians, and the need for food fortification strategies to meet these requirements."
Our measurements in Canada are different as well - low is 80 (which I am) and I can't remember what high is. My family doc said she has has never ever seen anyone with a toxic level of Vit D. I take a multi vite with 400 IU and a Vit D supplement of 1000. The research community seems to be rethinking how much Vit D we should be taking - and its going way up not down.
0 -
Rachel & Kari - Thanks for the welcome! Kari, we share the same Dx date (7/7/08), my brother's birthday. I wish I was in Northern CA to join your Nor Cal BC sisters meeting. I forgot, is it in November?
My PCP says even in Calif we don't absorb vit D like we used to. Something about the ozone layer I think. So I take the calcium with vit D, and there is vit D in my multi.
(sorry, bad case of chemobrain here)
anyone else just taking 10 mg of Tamox (like me)? I think I recently read someone else was. I'm too afraid to take 20 mg.
Rachel - How is the cookie thing going? I love your posts...no matter how long they are! LOL
hugs
0 -
Ok, still reading merrily along. However I did notice that because of the Tamox driven insomnia, taking sleeping aids isn't uncommon. Even though we all tend to think of over the counter stuff as harmless, please, please check with your Onc before taking anything. One of the ladies posted a link listing drugs that will interact with tamoxifen (broken down into severe, moderate and minor drug interactions): http://www.drugs.com/drug-interactions/tamoxifen.html . Amongst the "severe interactions" are Benadryl, Tylenol PM, Advil PM, Actifed Allergy Day/Night and various forms of acetaminophen.0
-
MTG Thanks for reminding us of that drug site. A great resource.
0 -
Ahhhh....definately a big difference with the Ambien. I need at least 8 hours to feel OK for the day. Less than that and I am dragging my heels. More than that would be heaven.
Worked today, went to rads, came home and made dinner, took my son to practice, picked him up from practice. By the time I got home at 8pm I felt like it was 10pm. I didn't even have the energy to finish all the dishes...(my bad)...I'm curled up with my cocoa, my mint square, and looking forward to the last pill of the day and hopefully sleep, sleep, sleep...
Just had to check in to say hi to all you lovely ladies. I hope everyone has a wonderful weekend!
Be good to yourselves!
0 -
LittleRed, You wear me out. YOU be good to yourself, too. Try to get some rest this w/end!
0 -
Just a drive by... thank you Juli... workin on the cookies, I think its gonna be fine, or better.
Today was the "playgroup interview". I was all kinds of nervous, including wondering if my period was coming or this was going to be the site of my first hot flash... but all was well. I think I am supposed to write an email now about my impressions from the playgroup. Monday we finalize the cookies and Tuesday is the "parent interview" at 1230. I was kicking myself for picking 1230 because that's lunch time, and not a great time to meet someone- they are hungry! So I'll bring some cookies from Monday along muahahahaha. Like PattyB part deux says, no sparks yet...
hope it stays that wayHugs Mary
0 -
I tried taking Tamoifen for 3 1/2 months with horrible allergic reactions nearly every day. These ranged from itchy palms to swelled lips and hives. Finally after meeting with the head of oncology at my hospital about this, and showing him photos of my swollen lips, he asked me "are you still having your period?" I told him, no and that after chemo finished in May I started having hot flashes and haven't had a period since about a year ago. Even that was spotty. He then said something that nearly made me fall off my chair! He said he had no problem with me not taking Tamoxifen or any A.I.'s and cited the ZEBRA study <---click to read which showed that women like me who were pre-menopausal prior to chemo but who went into post menopausal status afterwards, faired just as well as the women who were put on Tamoxifen in terms of survival and non-recurrence. He said that without the monthly surge of estrogen anymore, and the fact that I am no longer taking birth control pills since my diagnosis last fall, that I didn't need to worry about it. He added that though this is not the standard of care, and most oncologists don't practice this, it is proven. Whew! Has anyone else been told this or read about it?0
-
The ZEBRA study is interesting. You might want to start a new topic and see if there are others out there who are wondering like you are.
Re Tamox - I wonder if you might have been allergic to the BRAND of Tamox you wre taking? I understand each manufacturer uses different binders/fillers. My 20mg tab is made by a different manufacturer than my 10mg pill.
So, if you have to go back on it - maybe try a different 'brand'?
0 -
koryn- I am a little confused why you come to this thread of Tamoxifen users periodically to repeat the same or similar frightening "information". You're a rare allergic to Tamoxifen person, by your own statement. The great preponderance of women will have no trouble with Tamoxifen and it will reduce their chance of recurrence- save lives- by 50%. I am sure you wouldn't wish trouble on us, and nor I or anyone here on you. I think it stinks you can't take Tamox, and I am very sorry for that. But I am hoping I can stay on it, for myself and for my son. Let's all just hope the rest of us have an easy ride. Right now, Tamoxifen is my safety blanket. I'm doing my best to make it work for me. This is all I am going to say.
0 -
Rachel - thanks for the vit D info BTW VERY interesting.
How come you are still up? It is late there!
0 -
Although I'm new to this thread, I actually appreciate KorynH's post. I figure we're all pretty intelligent women; we can read each other's post and take from them whatever we want. As I've said before, for me, there's no such thing as too much information.
On the looking for information front, I've read that a least a good handful of women get rashes from some of the manufacturers of Tamoxifen. In reading the back posts I'm left confused because of various mergers where a company that didn't cause rashes was acquired by one that did,[For Rachel's benefit - i.e. Ivax which women on this thread have raved about was aquired by Teva a company which manufactures Nolvadex and one or two women on this thread had said that Nolvadex led to rashes. See also Tamoxifen--skin rash all over including Vag on this site. For anyone else interested - it is not only the manufacturer that's important, it's also the country in which it is manufactured; the US, Canada and Western Europe have greater oversight and protections.] Can you ladies tell me which manufactures you're using these days that do not cause rashes ? Thanks.
0 -
Hi MTG,
My 20mg pill is from Nolvadex, called Nolvadex-D. My 10mg pill is not in a box but is labelled Tamofen. I take them both together in the evening. So far, after 23 pills, I have no rash.
0 -
Boo!!!
Only the oldbies would remember me, but hi everyone. Been doing so well and carrying on with life - one week till my cancerversary. Over here in Oz next week is Breast Cancer Awareness Week and things will go ballistic so I am having a party to celebrate life one year on. Must say I am pretty chuffed as tamoxifen has been, so far, really easy going (except for a hiccup early on). No side fx to speak of and still have my period, kind of regular AND an extensive metaboliser to boot. I haven't needed antidepressants, nothing to help me sleep and only take vitamin D3 which a lovely lady here informed us all about
That isn't said to make me seem smug but just to let anyone who may be interested in hearing that quality of life on tamoxifen can be achieved. I am getting close to 8 months on now and honestly feel pretty close to what I was before SFBC - except of course for the stupid squeaky toy and a few brilliant new beautiful friends.Just wanted to pop in and say hello to any of the old gang and and also to let any newbies know that tamoxifen can be doable and there is a difference between side fx and allergies.
Have a great weekend everybody.
Big hugs
Helena
0 -
Helena is my hero (ine)
MTG- please cite your sources - what you "read". And here's a useful link (you will find if you keep reading this thread, as the people who have already been through this introductory period and had to find their way past "informational" sites that actually had another agenda- which is NOT about saving your LIFE).
Deciding whether a Source is Reliable- CDC guidelines
Information is a good thing, but misinformation is a horror show. Do NOT pass on bad information.
I read a whole thread about a group starting their hormone therapy together, and learned that for instance... they were all seeing their skin dry out... and then they all realized it was WINTER and their skin of course always dries out in the winter. I was reading everything they were saying was happening and getting terrified, but they themselves answered me to remind me that people generally only post when they are having problems- as Helena just pointed out, she hasn't been around because she's doing great. I am scared that I am doing so great, afraid to say it because I think the gods of karma will consider it hubris and give me a problem. I hang around this thread because I have grown to like the people on it- can't wait to hear what's going on in their lives and tell them about mine. We hold hands when we've got a problem, and celebrate when we are doing well. Today I am thinking about meg (ivorymom) because she hasn't posted since her oomph surgery.
The great thing about the other thread is that its short enough to really read the whole thing- and you will notice that it... ended.
Most did great on either Tamox or AIs. I have a couple friends who have had to stop taking Tamox for SEs, and they are pretty much terrified, as I would be if I had to stop, so again, I am keeping a good thought and looking for information on how to make it more comfortable. So far so good. There are threads for people who do not want to take Tamoxifen, if you read them, you will get more reasons not to take it, if you read threads for those who are taking it, let it be about reasons for taking it!
Another thread I read completely is even shorter:
Anyone starting tamoxifen with no chemo?
Pretty much everyone who didn't have to deal with the after effects of chemo did so well on Tamox there was nothing to talk about.
Here's the original study with 13K women, half on Tamox and half on placebo. The point of the study was to see if Tamox worked, but as a side note they discovered that yes, the women on Tamoxifen reported side effects, but here's the fun part- SO DID THE PLACEBO GROUP. Same incidence of side effects, save for the hot flashes.
Another big point about this study was that they had to call it off before it was scheduled to end because the women on Tamoxifen were doing SO MUCH BETTER regarding recurrence than the women on placebo- it wasn't fair to the women on placebo.
The Breast Cancer Prevention Trial
Hey- this is about preventing cancer recurrence, for crying out loud. Tamoxifen does. They don't know why. They don't know how. Tamoxifen was not created as a cancer drug, it was created for bones. They just know if you take it your recurrence rate goes down. So the less SEs the better. Same for f*cking chemo- talk about side effects!
Another study about the side effects of Tamoxifen, but only a couple hundred women:
www.buchholzmedgroup.com/articles/PDF/Tamoxifen.pdf
And consider for a moment the women with hormone negative cancers. They haven't got Tamoxifen to take or berate, and I'd wager they don't have much patience for people who whine about having to take Tamoxifen.
I also was on this thread for months before I started taking Tamoxifen, and I sure as hell didn't start mouthing off about bad things about Tamoxifen to women who were taking it before I even tried it. That takes some special nerve. Look at the post that started this thread- that's what this thread is about. If you want fear mongering, go elsewhere. I am getting really ticked off now, as I have been with the women on this thread for about half a year and we have made it through some tough times together, they really helped me fight my SFBC, with humor, with knowledge, with perseverance and creativity. And now I understand why the "oldbies" PM'd me to thank me for picking up the torch. It gets really tiresome fending off new people who insist on promoting senseless fear from nameless or unreliable sources.
From this point on I am just going to put those people on ignore.
0 -
Rachel - "and I sure as hell didn't start mouthing off about bad things about Tamoxifen to women who were taking it before I even tried it. That takes some special nerve."
What are you talking about ? (Maybe it's just something they put in the water here in NYC, none of us take any guff or even any perceived guff.) Anyone who has read my posts knows I'm not a "fear mongerer" but I do my research, do it well, share when I find something helpful, and I also cite my sources when I use them. I've even outed one woman who had her own agenda (She was raving about a product and...lo and behold...she owned the company.) That said, I appreciate the various links and will check them out.
FYI, my goal is two fold - to prevent a cancer recurrence and to have the best QOL while doing that. I dont think that's any different from anyone here !
0 -
MTG, every time I refill my prescription, I can wind up with a different manufacturer. That is what happens with generic drugs, the pharmacy goes with whichever company is giving the best price on the day they place their order.
I prefer the pills from Teva, the ones from Watson labs seem to dissolve more quickly and have a bitter taste if you don't get them down fast enough, but that is a very minor issue.
The few women who have had issues with rashes could easily have had a sensitivity to the binders used by various manufacturers. I am prone to reactions, (eating pez or necco wafers guaranteed me a sick day from school till they figured out the rash wasn't contagious) and haven't run into any issues on that front with any of the formulas. IF you develop a reaction to the pills from a specific manufacturer, you can have your doctor exclude that brand on the prescription form, and you should let your pharmacist know immediately so that information is included in your profile, and you don't get that brand again.
We are all different, and may have different reactions to the same ingredients. The "only" brand that one woman can take without reaction may well be the only one that causes a reaction in someone else. The deal is that we each have to stay on top of our own care, and reactions, and look out for ourselves.
I hope that you have a gentle ride on the tamoxitrain.
0 -
PatMom - Thanks for the input. All things being equal, even the bitter taste issue is worth noting.
I pretty much assumed that the rash problem, if it occurs, is caused by the binders/ inactive ingredients which is exactly why I asked which specific manufacturers you ladies are using. The inactive/ binder ingredients vary somewhat from manufacturer to manufacturer but the active, important one - Tamoxifen Citrate - is the same for all. (If anyone is interested, you can see images of each pill as well as an active/inactive ingredient list from both http://dailymed.nlm.nih.gov/dailymed/search.cfm?startswith=tamoxifen&x=0&y=0 and ( http://www.drugs.com/tamoxifen-citrate-images.html . My guess is that almost all will consider NIH and drugs.com [which uses Wolters Kluwer Health, Physicians' Desk Reference, Cerner Multum and Thomson Micromedex ] to be legitimate informational sites.)
My Mother and Father are both in their 80s and I've been helping them to research and buy their medications for many years. I have found that so far at least I CAN specify which manufactures are acceptable; the online/ long distance pharmacies would rather accommodate me than lose a sale. I simply call, ask to speak directly to the pharmacist and they note the file.
0 -
Hello to all. Rainy here in the Poconos, but warm. Doing a bit of cleaning. Not fun. Taking a break!!!
About se's and such, it is nice to know all the possible problems we could face, but remember we are all individuals. If you have questions or concerns, remember your pharmacist is your friend. Even if you use mail order, you can go to any local pharmacy and explain you symtoms and tell the RPH all meds that you take and they will know if there are any drug interactions and such. Be sure that all your doctors know all meds you are taking, even OTC and herbal and vitamins!
0 -
I read enough of MTG's response to see she did not include a link to explain this weird claim about rashes ( but told me I should go google it, which is pretty funny to anyone who has been reading this thread ) , and that she went off on me, so MTG good luck finishing RADs, and with Tamox whether or not you take it, good luck with your cancer, but I got you on ignore.
0 -
Mary- its TOO DAMN WARM. Where is my cold weather!!!! AUGH!!!!
0 -
~Sigh ~ There are always those who need to be spoon fed:
See Topic: Tamoxifen and Rash Anyone? http://community.breastcancer.org/forum/78/topic/726175?page=1#post_1170735
See Topic: Tamoxifen--skin rash all over including Vag http://community.breastcancer.org/forum/78/topic/699698?page=1#post_811551
I was tempted to find you the date and name of the ladies who raised this on the Bottle 'o site, but it's not worth it.
Of course, while we're on the subject of Side Effects that dont meet your approval ... (Rachel wrote: - "I read a whole thread about a group starting their hormone therapy together, and learned that for instance... they were all seeing their skin dry out... and then they all realized it was WINTER and their skin of course always dries out in the winter. I was reading everything they were saying was happening and getting terrified... The great thing about the other thread is that its short enough to really read the whole thing- and you will notice that it... ended").... Well, according to the wonderful people who bring us the medical info on this site, Breast Cancer.org, DRY SKIN is one of the top 11 "most common side effects of tamoxifen." See: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp. Now, since"(a)ll medical information on the Breastcancer.org web site .... is reviewed by members of the PAB [Professional Advisory Board], which includes over 60 practicing medical professionals from around the world who are leaders in their fields," (see http://www.breastcancer.org/about_us), my guess is that almost all will consider Breastcancer.org to be a reliable informational source.
0 -
Well, I just got back from the beach, windy but a lovely day. Walked on the sand barefoot, with Wolfie. I really feel pretty good today. Funny I always feel better on the weekends.....I love my job, but gee it's always nice on the weekends. Hey girls! Right on Rachel, keep up the good fight, we'll get through it together.
0 -
I really don't mind others posting info about Tamoxifen and it's effectiveness, or lack thereof. I know enough to Google info/sources/whatever to satisfy my curiousity or substantiate a report. I think Rach is just being protective and that's OK, I understand that! I haven't been on this thread very long but I do see where she's coming from.
I made a conscious choice after months of debate, research and doctor discussions about Tamoxifen. No doctor told me I had to take it; it was a 'suggestion.' I'm sure that was because of my particular cancer situation and pathology report and the protocols that are followed. We are all different in that respect and will feel more or less committed to taking Tamoxifen based on our circumstances. For me, it's reducing the chance of a recurrence by a relatively small percentage because my chances weren't that great to begin with. For others, it's a very meaningful percentage (some users probably 50% reduction), and the Tamoxifen represents a very real lifechoice. I can foreseeably quit taking it without too much of a risk if the SEs get to be too much, but for others, it's a different story.
What was my point? not sure, other than we should keep this thread friendly but also be aware that although we share this estrogen-blocking experience, we have very different needs and expectations.
Now for the bad news, I believe Tamoxifen has affected my ability to play "Bejeweled" on Facebook. I haven't done s**t on that game since I started on that bottle. Seriously! (Well, sort of, my concentration seems to be hit or miss.....but then again, I did just turn 60..... )
0 -
You know, I agree with the friendly part completely.
Frankly, I think this all started with a misreading of my post. I asked which manufacturers people buy their Tamoxifen from because some users got rashes from some Manufacturers. Now, every pill has as its Active Ingredient the same Tamoxifen Citrate. If I were "attacking" Tamoxifen itself, I wouldn't care which manufacturer anyone used. The only thing that varies from manufacturer to manufacturer are the INACTIVE INGREDIENTS or binders; that's why I was asking !!!!!!
With that said, I dont like anyone trying to bully anyone (esp me ~smile~) into not asking questions and/or not mentioning side effects or other options. That is not what this thread or this site is for.
0 -
Hi fellow passengers on the T train!
Rachel and kfin - thanks for the pushes and Rachel for the links to Vitamin D info. Very interesting and I learned so much from reading! I spoke to my onc nurse on Friday and she said to take 800 iu's of D3 in addition to whatever Vitamin D might be in my multivitamin. Regarding not testing levels before taking, she said that following chemo the chance of me having a too high level of D would be slim to none. So, I will take the multivitamin, the D3 supplement and have my level tested at my 3 month onc followup in January. Thanks again for the info and the PUSHES (positive peer pressure).
I don't know if it's coming off the steroids (used as a premed for chemo which ended 9 days ago) or what...but I am sleeping really well. Love it.
I'm reading "Living Through Breast Cancer - What a Harvard doctor - and survivor - wants you to know about getting the best care while preserving your self-image" by Carolyn M. Kaelin. It's the 2005 edition. A new edition is available for pre-order now. I got it for the chapters on moving beyond treatment but have found the whole book really informative.
I appreciate this thread!!!!! Never knew the CDC had guidelines to evaluate a source.
0 -
Anyone else have bitchiness as a side effect from Tamox? I think if I keep this up my husband's going to divorce me. Man, can I get nasty sometimes....never did that before the Tamox, well, not on a regular basis anyway..lol
Terri
0
