Bottle o Tamoxifen
Comments
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Terrij - welcome!!! You are in good company here - and yes it does have its ups and downs but you are one less pill down now that you have started. And that's right just deal with those SE's IF you get them.
Rachel - you have been freakin??? I hope not - big huggggsssssssssss beautiful girl.
YOTH - after living in Sydney for most of my adult life to live here is like heaven - does heaven have all these bugs????
Carolynn I have PM'd you about the photos - sorry ran out of time this morning.
big hugs
Helena
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Rachel, posted this on my FB profile, but I wanted to make sure you see it.
http://growingbolder.com/media/technology/vehicles/romancing-the-road-259598.html
I hope it comes thru. A friend sent me an email of it and when I saw it I immediately thought of you. That will be you at 85.
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Awesome awesome awesome Layne.
(those are supposed to be hearts). When I asked about Zometa, I meant for it's anti-cancer abilities. Maybe its not for DCIS?Everything you say matches my ONC and the studies overall, and the experiences of the women on KAK's thread.
For your friend who had bad effects and went off Tamoxifen, did she try just taking a break of a couple weeks and retrying? That has helped a lotta women.
Every so often someone posts here about UNNAMED studies or states that "it's well known" or has "a friend" or family member who had some experience, or gives a link to a site that looks impressive but with a little scrutiny is revealed to be crank/quack/shill, feeding the Tamoxifen fears. As much as I know this intellectually, they do get to me on another level. (for my fellow sci-fi fans, Dune, "fear is the mind killer"). Some posters here need to scare other readers... to feel more comfortable about feeding their own fears, as if if they should just get enough women to agree with their fears and distortions of statistics they could change the reality of the situation. No one is more skeptical of the drug industry than I am, few are more resistant to taking more drugs instead of less, and sure I wish I could manage my cancer risk with foods that I eat- but that just ain't how it works. Denial is not going to lower my risk. I (like most of us) wasn't supposed to get breast cancer, no risk factors save for an early period.
I guess I am more now speaking to the "Natural Girls". They are the ones who spoke to my fears. I went to their thread and found that most of their posts were rants, rants about how they are being attacked, and distortions of statistics. I stopped reading when I realized that they hadn't been posting long enough to know if they were going to have recurrences. Oh how I hope they won't have recurrences, but how the clinical trials show that they will.
I can relate to these women on many levels, and that they strongly believe they are helping others by spreading this same misinformation along with dramatic retellings of horrible side effects. I didn't see anyone coming to their thread to try and change their minds, no attacks or needs to be so defensive, and they don't seem to get that the people who would challenge their conclusions are just the same as them: strongly believing they are helping others.
Some of them come to this thread and drop little pieces of poison... well intended I am sure at least outwardly, but really just seeking to reinforce their own distortions by feeding fear.
So when someone like you, an oldbie, an alumni, comes back years later to testify to your own personal experience, no one can debate or feed fears in the face of your reality.
The clinical trials cancel out my distrust of the drug companies but I can't stop people from posting bad or misleading information from their own supposed personal experience (or their friends or mysterious poorly credentialed sites) but you knock my fears right out of the park and more than that, align me with my ONC, who has been 100% right all the time.
So again, thank you, thank you, thank you.
It's hard to keep remembering the lesson I learned on KAK's thread too, that the women who are posting here are the ones who are still having problems- so everyone we are not hearing from is not having a problem. It's a lesson for this thread too- as most of the "oldbies" moved on- so its even more wonderful that you stuck around.
I prefer to think of "oldbies" as "upperclassmen" or "alumi", and us beginners like freshmen...
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Rachel,
You are so right in the fact that most women who post are those who do some sort of problem. That's why most come here - to find others and commiserate and compare to see if they are the odd one out. I have (in the grand scheme of things) fairly few se's. One major hot flush, night sweats (gone), leg cramps (almost gone), an increase in pms (aka tamoxi-rage) and the strange bloating, I'm gonna start my period now feeling. I can tolerate those with NO problem.
My uterine issues, I believe, tamoxifen has contributed to (as I've already had fibroids prior to bc). My first trans vaginal u/s was done 2 - 3 years prior to dx and that's how I could compare the differences (GET COPIES OF YOUR REPORTS GIRLS!!). As I compared notes I could see a gradual increase in my endometrium to where it is now triple the orginal size. Rachel, again as Layne as said - everyone reacts differently to meds, as our bodies are different and as our cancers are different (size, grade, stage, hormone status, etc.)
Gentle Hugs to all!
Trish
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Just for some of the "freshman", I consider myself a "sophmore" LOL I have been on tamosifen now for 144 days, I have had very manageable se's. As with any medication, everybody's body will react differently. If something becomes unbearable, I know that there are other options out there.
Just a side note, my 8 yr old DD is teaching my 4 yr old DD how th write her letters.
The picture is me and my son when he was still shorter than me, now 3 yrs later he is the size height as me. When I took him shooping for bts clothes, he needed everything, because he out grew everything this past year!
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Mary- I saw an article about that lady but I hadn't seen the video- SO COOL!!! Thank you, yep, that'll be me. I will be PM, FB or emailing you soon... coming back your way and also want to gather up the PA gals (PattiB, PatMom, You and Me)
Helena darling I LOVE the pic of your backyard and got this image in my head of you and hubby and family all turfin on those ride along mowers... with stilettos on top... and so happy you're going to be exercising and shakin' it soon!
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Trish- they told me during IVF I had big ol' fibroids and I didn't even know it. After they told me I started to get the symptoms they told me about. Either I am highly suggestible (I AM) or the fibroids grew with all the heavy duty estrogen I was shooting up like an estrogen crack addict. So when I read about Tamoxifen (i read that it made fibroids grow, but that was for post-menopausal women who already didn't have estrogen to speak of, and the theory was that Tamoxifen acts like a little estrogen, so for post menopausal women the fibroids would grow), I set up an appt to get a baseline TV US - just like you said. But they were so obnoxious about what the test involved I canceled. Plus my ONC, who has a habit of being right about everything, said I didn't need it and that my fibroids should shrink on Tamoxifen. Well that would make sense on the theory above, I am "pre-meno" by cancer standards (perimeno by non-cancer standards). And my OB/GYN agreed with my ONC and so did my radiologist.
I probably should get the baseline TV US just as you said, its the kind of thing I'd do, and like you say, keep all the records as I do on my hard drive as well as paper copy. But I will probably chicken out. Icky icky medical stuff.
It was the women on KAK's thread who told me to remember they only post when they are having a problem. I came there first and was completely freaked out by soem of the SEs they were reporting, that's when they themselves told me they were only posting when they had a problem, and then... they stopped posting! So they all are doing just fine on Tamox or AIs. I followed them around BC org, some are still around to just be with others, but they ain't having trouble with their meds
I followed some of them here and Trish, you also say the same as my ONC. Everybody reacts differently. Just take it and see. I also learned a lot from the other gals going before me, abotu the "break" and how the vag discharge kind of counteracts the vaginal wall thinning.
Oh SEX! Right... well I am a single mom, no boyfriend, no hubby and no sex. Before DX I just didn't have time with the baby and all, and I still don't have time to go man-hunting per se, and all the IVF pretty much made it impossible to "date" or even have soem fun sex. I did have some just before IVF and I had some bad sex right after, but I was kinda hunting around now, or more like wishing there was someone I could have some sex with, like uh, baseline sex? If I am about to embark on a 5 year trip like this, I'd like to get some last minute YA YAs out just in case it all changes. (And I wonder if that might be correlated too, are the women who are not interested in sex also the women who are gaining weight?)
If you were around for the part about finding my EX on FB and him having affairs, yes it did occur to me to hook up with him. I could see the difference from our relationship 25 years ago (GOOD G-D AM I THAT OLD?) to now, and then after... purely from a scientific perspective- OK that's horsepoop, he was one of my two favorite all time lovers, so it would be a heckova sendoff for my sexuality. And there's a guy I have been dancing arond for some years but he lives 1000 miles from here and smokes cigarettes (uck ptui), still I was thinkig of flying in for a seduction.
Eh, like the baseline TV US, I probably will chicken out of that too.
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Mary, Mary, Mary... trying to skip a grade eh? ::::buzzer sound:::: Nope, here at Tamoxifen High School, there are no Advance Placement tests. You are a Freshman for a year. Me, I am still stuck in Summer School.
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Rachel,
Meg is right. My tech would have me hold my full bladder right until after the external abdominal ultra sound and then let me RUN to the bathroom, then have the internal ultrasound done. It's only when you have the tvu done with saline, that it's yicky. If you don't about that type, TMI ALERT!! The doc inserts saline into your uterus so that it expands the uterine cavity so that they can get an accurate measurement and picture of what exactly is in your uterus. (it makes a mess! They clean it up!) The doc told me that it might feel as if I would be having some cramping during that procedure, but they went slow and it did not hurt. That's how the doc determined I had polyps and fibroids and their sizes.
The full bladder thing? I never drank as much water as they told me to!!! LOL I must have a small bladder and a big uterus!
Hugs all!
Trish
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Meg- yes that was the part that really bugged me, waiting room with full bladder and insensitive staff. (The wand itself doesn't bug me, it kinda became my boyfriend during IVF, I was going to buy it a bottle of wine and cook it dinner...) But here's a tip from my shrink... she said don't drink ALL the water before the appt. Drink a bunch, bring the rest with me to sit in the waiting room, and if it's not enough, they can tell me to drink more. :::snicker::: I love my therapist.
yeah- and Trish does it too! YAY Trish!
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Rachel--the transvaginal ultrasound is really no big deal----- just feels weird, but no pain or discomfort at all. I developed uterine fibroids and large ovarian cysts while on tamox (I was premenopausal)---gyn says tamox wasn't the cause, but I never had any of those issues before tamox, so who knows. I ended up with a TAH/BSO due to ovarian rupture--I may have been able to avoid major surgery, had the gyn let me go for a TVUS when I requested one earlier, but I'll never know. for sure.
Anne
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Hi Wordy,
I agree with you, any medication you take you have to look at the benefit versus the risk. Tamoxifen decreases my chance of a reoccurance significantly . More so than the chemo I had. I take my tamoxifen every day and won't miss a dose. I do have side effects that I live with. Early on I had vision problems and developed beginning cataracts (which I didn't have the year before) and a couple of months later I developed a retinal problem (Posterior Vitreous Detachment) which I am now doing OK with- I just need to put drops in my eyes several times a day. Now I am having joint problems.These eye problems could be due to the chemo, the high dose steroids I got or from the tamoxifen. The joint problems a similar story. Treatment has put me into menopause - so is it menopause, lingering effects from the chemo or the tamoxifen. I am glad there is a drug like Tamoxifen that can help improve my chances.
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Hi Layne (aka wordy) LOL - I guess I am in the minority of women posting as I just keep coming back, not to talk about my bad experiences but to purge my mind. I don't feel comfortable talking about breast cancer with my friends and family so come here where it is all we talk about. I have had a smooth ride with treatments and surgeries and, after an initial problem, now have virtually no side effects from tamoxifen. I come here regularly to post, especially to newbies, to encourage them to give it a try at least and give them my more positive experience. I avoid any threads which appear confrontational as my sensitive nature would do me in straight away!!!!!!!! Big sook - but working on being more assertive.
I know that in time I really need to get off this forum and move on and to be honest I can feel it happening already - better weather, recovery from surgery nearly over but I just love these women and can't break away yet. Perhaps a large proportion of the women here are like me and just need the comfort and cyber hugs (and laughs).
Thank you so much for coming back to visit - tamoxifen can be your friend.
big hugs
Helena
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Lots of posts to read. Had a good laugh at some of them!!!
On my last day of RADs, I had my pix taken (cell phone) with the two techs when they presented me with my completion certificate! The pix was my wallpaper for a long time, and the certificate went on my frig for all to see! We took our youngest out of school so we could celebrate over lunch. It just felt good to say "I'm done".
Don't blame any of you ladies for having the ovaries out - the sooner the better. I've been screened since I was 32 for ovarian cancer. My mom was 58 when she was diagnosed with stage iv. For the last 16 years (48 now), I've had a TVU and the CA125 blood test - alternating every six months. I will continue that schedule, so I have the ultrasound usually around Dec/Jan and the CA125 in the Summer. Even though the blood test has alot of false positives, it is still the only screening tool. They are working on some new testing - I read about it while I was having my treatments (Boston Medical Ctr) and it is expected to be more reliable than the current CA125. I was lucky and tested negative for the BRCA gene. Even though I look like I should live in Ireland (red hair, fair skin), you never know if you have the gene. This should be a standard test for everyone who has been dx'd with either breast or ovarian. I had to appeal my insurance company's denial of payment for the test. Really annoying, as I work for the #17 most profitable companies in the world. They did pick up $3000 of the $3500 cost but it still pissed me off that it was not automatically covered. URRRGGGG. It really pissed me off when during October, when we have our "pink" products in all the stores, yet won't automatically cover the needs of their employees who have bc.
Have a good night all.
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..... see Layne I'm all warm and fuzzy now ... what a great way to start the day ...
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Well let me just be a downer for now, I NEED to vent.
Went to Rads onc for c/u, told him about pain and bam I have three more appts. Blood work, bone scan and ct of chest. Then surgeon called about ooph,, I go Aug 4, which means one more appt next week! Then driving home car starts to smell, no idiot lights come on, so I check oil, radiator and belts, all seem ok, but the I see smoke from underneath near catalytic (sp) converter. I think it is either ac/heater or fan near there. Waiting for dh to check it out so I know if I can at least drive it to dealer tomorrow and go get blood work!
Now next week, I have bone scan/ct on Monday, then Wednes I have my c/u w/BS and physicals for all 3 children, then thursday I have appt w/ooph surgeon for pre opt and later appt w/ rads onc. What a fun week to look forward to. Br careful what you wish for, it just may come true. Of Course I need my car, so hopefully, it will be easy to fix!!!!!!
Okay, I feel a little better!!! Sorry to dump on you guys, but when I called DH to ask him to change his day off, he was like "well I have a side job on my day off" and he wonders why I never say anything pain to my doctors.
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Yep I am with ya Layne and Helena... I think I will always be here on this board, on this thread the whole 5 years and beyond.
Its the only way I can like- compartmentalize the cancer. Like you, my friends just want it to be over (yeah, as if I didn't!) and after a while, I have to let it be over- for them. I read an article today (and man I can't find it now for trying, it was in today's NY Post, I swear) that an experiment was done and that compassionate people were generally happier. There was a great line.. damn where is that article!!!!! Something about how helping other people makes your own problems seem smaller. This is how I feel when I can help someone who was just diagnosed or going through whatever I have been through.
Its nice too to spend time with them on non-cancer stuff. Nice to have "the old me" back.
And of course, when I have a complaint, my friends don't want to hear that either, so I'm here.
And they totally don't get the really good jokes. ::::snicker:::
If I am in a room with a friend and see something hilarious here and start to cackle, I can't even tell them because they just... don't... get it.
But I am also reaching out to my friends who were my friends before I had cancer but they had or have cancer in a way I hadn't before.
And when I was DX'd, my friends from before who had cancer, the ones who never told me, reached out to me. Its a familiar greeting, "I am sorry to hear you joined the club, but as long as you are here, welcome. How can I help?"
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Holy Cow Mary! OK I don't know what the deal is with your car - and it just came from the shop too, right?
Any way to stack your appts so you can do all in one day or trip?
I am glad they will do a bone scan, is it also a PET scan? Probably is nothing but its really nice to know.
Anything I can do to help? Oh for the bone scan, bring a CD and/or MP3 player, they usually let you listen to your own stuff 'cause you're just sitting there for a while.
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Ditto Layne and Helena!!
Mary, keep us posted on your scans next week. Same thing happened to me a month ago!! It all turned out fine...got referrals for PT and acupuncture though!!
Rachel, you have a terrific sense of humor!!
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Mary - hope that stupid car gets fixed in time for that week from hell next week - wish I was close enough to help out. Hope all goes well - let us know.
Big hugs Kari and Rachel - aren't you all supposed to be in bed????
Better get off this computer and hop in the shower and get to work. DH is staying home with my girls today (still school holidays) - so nice just to get myself ready for a change. Sigh.
big hugs
Helena
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Helena, I'm in California and its only 1:19 pm...I'm at work!! LOL!! you better get to work now!! Have a wonderful day!
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How I do love reading these positive, brave, intelligent posts. Helena, Rachel, Layne and all others who have helpful things to say, laughs to laugh and, yes, the occasional SNARKY thing to snark, I thank you. I feel like you are all standing in my kitchen when I take that wretched tamoxifen. Unless I forget it, which I seem to be doing this week!
So, I thank you, all of you. My own diagnosis is a pretty good one, but my dearest friend is not so lucky. Stage IV, Inflammatory. She has been to hell and back with neuropathy (sp?) and a chemo-induced perforation of her bowel. Had a colostomy the week before her mastectomy! She's not much of a computer user, so I read the boards relevant to her situation, too.
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Rachel - You pm me but you don't accept any pm's????? What's up with that? PLEASE do not pm me again. That article was for those that want more help than what they are getting from there docs. The man is dead by the way so he is not selling anything.
Dx 1/22/2009, IDC, <1cm, Stage IIa, Grade 1, 1/30 nodes, ER+/PR+, HER2-0 -
Hi again,
Rachel, I love your posts, thanks! You touched on many things, I've been struggling with, FEAR and how good it feels to help others, instead of always thinking about my problems. Lately, people have been approaching me, with their fears, for family members or friends, with health issues, not necessarily about cancer, and I keep them in my prayers. Meditation has also helped me, although I'm a newbie at it, I'm good at visualization, and trying to turn that around for the good, and not always think of the worst case scenario. You Rachel, have helped me numerous times, and I hope to pass it along!
Today has been a good day.
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Well the car is fixed. WHen DH came home he was baffled at first, since everything that would cause the car to overheat was ok, oil, radiator, fan and belts. I was right it was coming form the catalytic converter. When DH went under car he saw oil, the oil filter had a pin hole in it. We bought a new filter and replaced it tonight. Tomorrow when car in on the flat surface I have to remember to check the oil.
I am more relaxed more, had PBJ with potato chips on it( my favorite comfort food). Most of the appts are already stacked. Monday is bone scan and CT, wednesday is BS and kids physicals, fun day that will be, thursday is pre-op for ooph and then hurry home for rads onc, or I may have to reschedule that to friday, or just have them call w/results.
One day at a time, that is the only way!!!!!
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Hey peeps!!!! You have to see this. Just amazing. Feel free to share with other threads.
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I have posted on this site for awhile now, but not on this thread, i will be starting tamoxifen soon, and was worried about taking it untill i started reading all your posts i do feel better ,so glad i came here, but my head is spining im a little confused, i read that ALS were better than tamoxifen, now im wondering if i should bring that up to my onc when i see him next week. I wernt thru menopause early at age 45 about 7 years ago, also how soon after chemo do they start you on tamoxifen?
thanks for all your good info,
debbie
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Hi. I am posting because I have started having some SE which may be from the Tamoxifen. I started Tamoxifen in January after chemo, surgery, and rads. I have been taking it fine minus the night sweats. The last couple of weeks I have been nauseated and more bloated. I was taking it at 10 p.m. to address the sweats, but then I would feel nauseated until about 11 in the morning. My onc recommended taking the meds at 7 so that the symptoms would be over by morning. Well, it worked yesterday, nausea ended about 8. I woke up this morning around 4 with a stomach ache and couldn't get comfortable to go back to sleep. Have anyone of you had similiar SE? Does a different time work better? Are there any home remedies to reduce the symptoms? I have 4 more years of this med, and I want to find a way to make this more doable.
Thanks for any suggestions.
Julie
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my doc prescribed ambien to help me sleep. it made a world of difference.
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Jule I would call your onc and ask. I started tamox in March adn about 2 wks later started Effexor xr 75mg ofr se's( helps w/ night sweats and hot flashes and mood swings).
Any new se is worth checking out w/ dr.
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http://www.youtube.com/watch?v=QuMVaAxuH6o