Bottle o Tamoxifen
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I hope you don't mind if I jump in here asking for advice or thoughts - next time I'll try to find a hunky guy to bring with me. :-)
I've been taking Tamoxifen for three months, and am desperate to stop. I wanted to give myself time to adjust to the medication, and to be honest it was easier at the beginning than it is now. The hot flashes/night sweats are a little better at this point (I actually went 12 nights without ONE episode...but then they started again, I have no idea why). It's the bone/joint pain that is making my life a living h*ll - from my fingers to my toes. I struggle to even stand up straight anymore. It's hard because I'm active - I run, I do yoga, and I am just *so* miserable right now.
My original path came back ER+/PR+ and HER2 equivocal; FISH testing revealed HER2-. My Oncotype score came back 42, and changed my PR status to negative. My ER status came back at 6.6; the cutoff for negative is 6.5. So, according to the Onco test I'm barely ER positive (my original path report does not give me the level of detail most people have, it just says that the tumore was ">50% positive"). I don't know what to believe.
But what I *want* to believe is that my ER status is low enough that I can stop Tamoxifen. I'm just so uncertain what to do. I have an appointment with my MO in two weeks and am ready to tell her I'm going to stop. I don't want to take a chance, but with an Onco score of 42 I suppose I'm taking a chance every day anyway...
Ideas? Input? Someone want to slap me senseless? :-) Thanks.
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Nancy, the life you have needs to be worth living....
Jenn0 -
Nancy, many of us have given tamoxifen a try on more than one occasion, and several of us have discontinued due to quality of life issues. With your receptor status, it would be worth asking you MO just how beneficial tamoxifen is FOR YOU as an INDIVIDUAL. Lots of the numbers they toss around are based on the "of 100 women who take this, x% had recurrence compared to y% who did not." Then the absolute risk reduction is usually not stated (e.g. 10% compared to 15%) but rather a relative risk reduction (33% relative risk reduction, 5% absolute risk reduction). Think about your life values and goals, and how YOU want to live, and make your decision accordingly. Best wishes!
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I remember all to well the pain from the Tammo. I started the pain train with my Taxol treatment and then it went on with the Tammo. There were days that it felt like I was hit by a Mac truck and it was winning. I think what bothered me most was that up until all of this crap, I was living a very active life. That pretty much got sucked away by BC in one way or another. I would think to myself that there has to be something better out there. I even considered stopping this little white pill. I'm very bull headed and I still continued on takinig it, because in my own twisted way I wanted to show this beast who was boss. I wanted to win the battle of the little white pill, so I continue on taking it. Not to say that I still have up and downs, because I do. I still have HF like nobodys bussiness. Mood swings where I just want to rip your head off (and thats the nice version). Pain that had for the most part finally let up. It took over a year for that to happen. I know before you say Paula why did you do it for so long? Maybe I'm just a bit insane as well. Mostly chicken is what it comes down to for me. I do envy you gals who stick to your guns and stop taking this little white pill, but for me I continue taking it and will try my best to stick it out. With all that said, you have to have some QOL and if this pill is not for you then you have to do whats best for you. Don't let anyone make you do something that just isn't right for you!
Well all I better get back to the salt mines! Love and Light to you all my sistas!!
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Folks,
Wondering about some symptoms I'm having. I've been taking Tamoxifen for a week now and I'm pretty much okay. I wake up an hour earlier but so far it hasnt been too bad.
BUT the right boob (site of the offending tumor) is sore, my underarm is sore, and there is some swelling along the side of my underarm alongside the boob. I'll see the BS tomorrow, but not but an hour ago I felt a little discomofrt in my left as well. I'm wondering if some of this--not all--might be Tamoxifen related. Anyone else experience this?
Thanks,
Scorch0 -
Scorchy I'm gonna ask a silly question. Do you still have your breast?
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Paula - No such thing as a silly question.
I just heard from Sherry. She is on her way home and doing good. She is still a bit groggy and has a dry mouth. Surgery was 3 hours. She will get on here as soon as she is feeling up to it. I'm sure she appreciates all your thoughts and prayers.
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Yea, i also went to get my eye exam and she did a dialation of the eyes to check the health of the eye and said, she is doing that as tamoxifen can damage the retina of the eye and so she wants to do an annual exam of the eyes to check it. But yes as far as aching, i had to do a heap, of washing other day and man standing there, my ribs and back ached folding it. from neck to toes i was miserable. then put it all away. i was quite worried getting such sore ribs just standing. i have not taken it for two nights, revenge, probably not a good thing to do, but i was annoyed with it, annoyed that i had to b on it and annoyed that i have BC in the first place. i was just bitchy with myself, an d i get really bitchy when i am sore and something like the birdseed spills all over the floor or i drop something and it really hurts bending down to get it. i hate getting in those moods, but it just comes over me and gets quite over whelming, i try to get it out of my system b4 anyone gets home so i am not cranky with them. have a good moan to myself and put on a different face for the DH. it does get fustrating.
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Paula 66,
Hi there! Yes, they are both still here--the FNA of the sentinal node was clean (though I realize things could have changed since then). I was diagnosed a month ago and Tamoxifen has been started to shrink the tumor before lumpectomy. I've been taking it for about a week.
So far the only side effect that I can pinpoint is waking up about an hour earlier than I usually do. This would be the kind of thing that BC (before cancer) I wouldn't think twice about it. Now every new thing that hovers anywhere around the boob is a cause for alarm.
Scorchy
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Well it looks like I am going to give Arimidex one more try and no tamoxifen... Thank you ladies for all your input on what I should or shouldn't do! You are awesome!
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Good luck with the 2nd go-round on Arimidex, GMA! Hope it fits this time!
Scorchy - those are the good ol' days when we could have a pain and not give it a 2nd thought! Now I have to try to reason with myself with all the pains I have. My MO did say the Tammi could cause pain just about everywhere - I've complained with pains in my breasts, bones, abdomen, etc. I don't know if it's the Tammi or just typical aches and pains - can't tell the difference any more...
Sherry - hope you are feeling better and resting well. One thing about general anesthesia - it sure makes it easy to sleep a lot at first! Here it is 2 weeks later and sometimes it's still all I can do to stay awake, but here I am now awake at 3:00 am, so that's the bad SE of easy sleep!
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Scorhy I agree with HnS. I remember all to well the sleepless night. The beginning was the worst for me. So much was going on. I think we become super sensative to what our bodies are going thru. I'm pretty sure the Tammo has something to do with what your experiencing now. I know that some gals have said in the past that their Onc says no pains from Tammo, but I think thats just not true.
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Good to see all you ladies doing well after those pocket parties.
I also attibuted a lot of pain to the tamoxifen, but I still have a lot of pain (maybe not quite as much) after being off the tammi for several months. The thing I keep thinking is that chemo can have such long-lingering effects, and I started tammi while I was still having lots of pain and fatigue from the chemo - or at least I am thinking that now, because those symptoms did not resolve after stopping the tammi. The mood issues, joint pains, hot flashes and general misery DID resolve after stopping tammi, and I am definitely a happier person. I did try the usual pharmacological treatments to try to reduce the SEs from tamoxifen, but those SEs were even worse and added to the misery. At least most days now I wake up and don't have the immediate thought of "gee I wish I wasn't waking up today" and I am enjoying lots more activities. Again, I don't think it was ONLY the tammi, and also not ONLY the chemo. It's the whole ball of wax.
And as far as the oncs who minimize the SEs from ANY of their treatments: I say "expletive deleted, listen to your patients, and try it yourself if you think it's so easy!!! And READ THE LITERATURE!!! There is a LOT of evidence out there, and mostly all you have to do is READ THE PACKAGE INSERT!" (not the one they hand out to patients, but the one that satisfies the FDA info is given to the docs).0 -
Hi all, you girls reallly behaved that last couple of days. But I was really hungry smelling all those snacks. Surgery yesterday went well. It was a 3 hour sugery because he had quiet a bit of pocket work to do. I was in quiet a bit of pain and was neasuous so they had to get that under control before I could go home. We left the hospital about 8pm and got home around 9:15. I can't shower until tomorrow and can't wait to see my new girls. Thank you all for being there for me. Jo thanks for letting everyone know for me last night.
Nancy regarding the tammoxifen and joint pain. I had quiet a bit and it seemed to travel through out my body. First was hip, then it moved into my neck. MO have me pain pills to take and kept assuring me my body would adjust. The neck really did not but after i had my BMX the pain finally went away. I think the reason is because I was on so much morphine then hydrocodone so I think the imflation finally got under contro. Also I was off my tamo for 6weeks during that surgery. My path also did not give a percentage on the hormones, but my onco score showed my ER+ to be 6.7 so pretty low. When I asked my MO about it he said because it is positive even so slightly that they would still treat it as posistive. He compaired it to be a little pregnant. You are or your not. But I also worry how much benefit I am getting from tammo. After my surgery I was feeling so much better not being on tammi that when I went back to the MO and talked to him about. I told himI would try it again and see if I still have the bad SE's. AFter we discussed it he asked me if I would try it again and we would revaluate in three months. So that is how were approached it three months at a time. I am also very active in yoga and walking and the joint pain was inteferring.
Scoorchy with the swelling in your arm you might want to get evaluated for Lymphodema. Better to be safe.
Midnight my MO has me getting eye exams every 6 months.
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Ok, I have all the standard se from the "wonderful" little white pill (hot flashes, joint pain, insomnia, mood swings and lack of appetite) but I also have blurred vision since the beginning. The fluid in my eyes actually looks like gel, and as long as put drops in my eyes every few hours it's a whole lot less blurry. Crazy!!
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mstrouble, both my eye Dr and MO warned me about eye changes due to Tammy. I, too, got blurry eyes due to dry eye.
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GmaFoley, you DH sounds like mine right now!!! My DH looks at all the pills I take (vitamins too) and thinks that I should just toss them..... not really, but he feels bad for me. Just frustrated because they know it causes more issues and they don't want to see us suffer.
I ended up with a total hytser when I had my BMX because the Tamox caused a fibroid to grow on my uterus and it wasn't worth keeping the ovaries because they produce estrogen....BAD for me! Now, I have more surgery coming because other things are falling :/Merry Christmas for me
NOT!!!! (it's break from school) Oh, and more meds for that too!!! If i could jump 3 1/2 yrs down the road, I would hope that it's ALL rainbows!!! Snoopy, as for the rib pain, it's probably from rads. I have it on both sides, but (left) was the only one that was radiated. My PS told me yesterday that it can take another 2 yrs before things stop shrinking and being affected. Gabapetin & IB 600mg help me.
Hope you all have a great day!!!!!!!! ALL RAINBOWS remember
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sherryc- glad everything went well and hope you heal well. I was out of town so hope your colonoscopy went well too.
chabba- thanks for mentioning about the dry eyes. I was wondering what was going on with my vision. Guess I will see my eye doctor sooner than later.
I have lots of joint pain too, in my hands every morning , then my hips. what a lousy SE yet I heard with Armidex those pains are more severe. Can't see how! One day at a time.
Paula-eye candy thank you!
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Lezza - I'm well past menopause so they tried me on the Al's first, believe the pain was much worse. I couldn't handle it and I can generally handle pain pretty well.0
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Hi all. I have been on Tammi now for 9 months. Haven't noticed weight gain, some loss but I have been working out and eating better. No period since last July during chemo. Am 41 years old. I do have hip pain, neck pain and lower back pain. I have had xrays and 2 bones scans this year alone and nothing has shown up. I want to ask my onc when I see him in October for a PET scan. I doubt I will get it but I am a hypocondriac now since dx. He thinks that pain is from the tamoxifen, I am hoping he is right. So far he has been. I will stay on this drug and any other as long as I can.
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Lezza: That is what i heard too. My gyn said I am in menopause but I am sticking with Tammi. The morning joint aches are pain but they do go away. My onc said I would not like the other one.
ckgrayoh: I think the pain is an SE of the drug. These aches in my hands only started when I started Tammi. Guess we just have to deal with it. I would still go for a PET scan. That's important. I am asking for one at my annual visit wth him. So sorry you have the pain too.
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Next month I'm to begin on Aromasin and Lupron. I'm no longer able to take Tamoxifen due to blood clots from arteries and blood vessels during surgery last month. Onc is working on getting a bone density done for benchmark purposes, especially since have had arthritis since age 22, now 52.
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I have a question gals, and frankly I'm too lazy to go back and read posts. I've been on the tami since Feb. and when I had labs drawn, my triglycerides are thru the roof and my cholesterol is high. Anyone else have any issues with that? The only thing that's been different is the tami. So then they put me on crestor and after 4wks my numbers are not much better. Thanks for any input you all might have.
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Hi St Jude 10 ... yes- yes- yes... I've been on lipitor (10mgs) for 15 years ... runs in the family.... and it was completely under control with the lipitor. 3 months after I started tami - my numbers had literally doubled to 360! They doubled my lipitor dose to 20 mg ... I started exercising, and even further changed my diet ... I dropped down to where I wasn't a walking heart attack looking for a place to happen. but its still lingering around 200 ... but the triglyceride % is better. My MO says this SE is very common.... but the cholesterol is easier to control than the BC. I really wanted to have my ovaries removed and she refused - that I had to do tami for at least 18 months to 2 yrs minimum and then if I was still having issues, we would revisit that. (My MO is a leader in BC Research and Director of Oncology at Vanderbilt Univ.)
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St Jude ... I've been on tami for 18 months ... it took a good six months to get my numbers to level down ... and I really worked at it ... I did not want to go up to an even higher dosage of lipitor ... I'm still on 20mg. My regular doctor keeps saying diet & exercise its not tami ... and I want to punch her! I've been dieting, exercising, and doing all the right stuff ... My numbers should be a shining example of success but they're not ...
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Thanks BlueLily, I really appreciate it. Since I started the Tami, my cholesterol doubled to 250 and my triglycerides went from 200 to 950. The Crestor's only brought them down to 217 and 725. I'm a hit and miss exerciser, but always have been. The only difference is the Tami, and these numbers are too high. I thought about taking these 4 wks off it and check my labs and see if they've come down. Not sure what to do, and the more meds they put me on, the more $ every month.
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Hey St Jude ... been there... totally understand. Because of my node involvement, my MO felt really strongly about not stopping tami. I hadn't exercised in yrs (other than occasional walking pre-BC ... ) I started walking - progressed to running and dropped 25lbs since my cholesterol skyrocked with tami. I'm still running 2x /week ... and seriously limiting red meat & cheese. ... It took about 9 months to get it down but it has leveled down to a number I can live with ... but again, I did double the dose. It seems like every 3 months or so my SE's from tami change ... first it was the cholesterol, got that under control, then it was the hot flashes ... several months of pure sweat! That eased up pretty much then came weird pains -- I'm now deep in to mood swings and sleeplessness ... not sure if mood swings are tami or lack of sound sleep induced. Don't give up --- Debbie
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Is Damiana, for low libido, safe while taking Tamoxifen? Has anyone tried it?
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Hey 'yall,
This is surely a question that must have been asked here, but I am unable to find it (681 pages to wade through and a sample didn't reveal an answer).
So how long does it take Tamoxifen to start to work, anyway?
I must admit that when I first started to take this, I was diagnosed Stage II. since then things have changed and now I am Stage IV. So where before a month wasn't such a big deal, now? I'm kind of wondering how long it takes for this sucker to kick in. (Of course, when I left myBC's office I thought of the question.)
Any wisdom from the fold would be appreciated.
Scorch
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The pharmacists guide says steady state serum levels are achieved after 4 weeks. Elimination is mainly via faeces and is slow with it still showing in samples up to 14 days after dosing.
Tamoxifen as ingested has to be metabolised in the liver to its conjugates which are the substances that selectively bind to ER receptors in BC cells.
Hope that helps...
Jenn0
