Bottle o Tamoxifen
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Walkingmydestiny, I don't think they give us 20mg based on an old study, I think they give it to us based on NO study. As best as I was able to determine, and full disclosure here, I am no scientist or researcher, 20 mg was arrived at as the amount that the most women would continue to take, the dose they would tolerate and not quit. To this very day non-compliance (fancy word for when women say, to hell with this bullshit) continues to be a big problem with tamoxifen. It has a bad reputation. Rightly so. Yes it is the best chance some of us have, those of us for whom chemo would not do a lick of good. But despite many months of searching for the evidence that trials were done at differing doses of tamoxifen, I came up empty handed. They know at 80 and 60 and 40 mg, women quit. Women felt like hell continuously and said, screw this. 20mg seemed to keep the most followers, unhappily. So that's the number they settled on. Not the BEST dose, but the most tolerable dose they had tried so far.
You would think that someone, the makers of tamoxifen, researchers, would be following women who self prescribe 10 mg (or whatever) to collect what data they can, even if it's anecdotal. But there is no money in knowing more about tamoxifen. Thus no one cares to know or wants to know. It just isn't profitable to know.0 -
there is a worldwide shortage due to manufacturing disruptions as well as increased demand. Some limits have been placed on how much you can take out at any one time. I had to travel 160km today to get a repeat prescription
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It's called female pattern baldness when women’s hair thins as the hair falling out is a result of lowered estrogen (testosterone causes this in men). I was really worried at the start when mine started falling out and then, when I read up about it I chilled a bit as the hair loss would have been on the cards with or without BC and tamoxifen. My mum's hair when she went through menopause thinned a lot. And a number of ladies at work younger than me complain about thinning hair and they are not on any treatment. It gives me a bit of relief as I then, feel like I'm experiencing something to be expected.
I have been using an infrared lamp and massager on the intense leg cramping (the smallest movement can set it off like one of the ladies in this thread). It helps a bit especially if I'm struggling to fall asleep. The twitching is still there but it does ease it. A standing desk at work has also helped. Getting out of bed is slow but you know it's good to be able to get out of bed even if it's slow. And the truth is that most middle aged people, and older, are mostly all in pain. Our bones age like most things. Muscles don't age so, maintaining those can be a big motivator. And it does help with pain management as it can reduce inflammation. But I get it that some days it just builds up on us and we have a rough time psycho-emotionally. I had one of those episodes just recently. I went easy on myself and had to say "no" to a few request for things that I knew would overwhelm me. And I had to ride out the low feelings ... I hope all of us find effective pain management strategies to give us some relief.
I know it's unorthodox but I quite like the hot flashes ... but at the same time mine are mild and at 52 I was due them anyhow. I was quite relieved to get them as I had a sign my estrogen was decreasing and that's what I want in my circumstance. My mum and sister both had a terrible time with hot flashes (my sister used to have up to 50 a day) and they both had intense sweats. Neither of them have had breast cancer. So, again with or without tamoxifen women can have a terrible time with hot flashes and myriad other menopausal symptoms.
With or without tamoxifen treatment we are experiencing a uniquely female phenomenon. I do feel for the chaps with breast cancer getting hot flashes on tamoxifen that must be quite confronting for them. And yet in the same vein my dad used to get hot flashes after his prostate was removed from prostate cancer ... the body ... such a wonderful, curious, complex set of systems ...
And of course young women ... it’s really unfair on them getting menopausal symptoms and I know of ladies who get two menopause(s) once during BC treatment, when they are young and then, again when it’s time for menopause.Good luck everyone and I hope your choices bring you peace of mind.
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Anyone on T get involuntary random twiches? Seems to be becoming more frequent. Sometimes it actually moves that body part like a little jerk.
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Yes, I do. I've always been a little twitchy but it seems to have gotten worse since starting T. Leg cramps too. I figure it's all sort of the same issue.
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no cramps other than sometimes uterine, but everwhere else, yup. Sometimes my limb moves!
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Hey Ladies! I’ll be starting day one (of 5000 years) of Tamoxifen. I’m also still getting Kadcyla infusions every 3 weeks, till end of July. Feeling nervous. Sounds like I should:
- take it at night
- increase my water intake
- increase my exercise
Any other advice for a Tamoxifen newb? Any and all advice and experiences shared are welcome and appreciated!
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Hi Paloma1211
I too am starting tamoxifen this week and feeling rather apprehensive about it. Let me know how it goes..
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I eased into it. 1/2 pill every other day, then 1/2 pill every day, then full pill MWF half pill other days...each step for 1-2 weeks...this helped with the side effects for me. I take it in the morning. TT
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Hi Paloma- those 3 things you listed are
what i have done since june and no
side effects yet- good luck
( post menopausal women have an easier time
tho, I have been told
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Many don't have ses and don't post.The ones here seem to. Night is best. Ses can kick in right at the start, midway or layer. Ses can go away or change. So best to go in without fear. It's like an other rx, no different.
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Artista928 is correct: many don't have ses and don't post. I have been taking Tamoxifen since April 2019, almost a year, with no side effects at all. I asked my MO when it was best to take it at night or in the morning and she said that it did not matter so I take it at night. Hope all the new starters are as fortunate as I have been with the lack of ses.
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That is all very heartening to hear Artista & Elephant! Last night was my first one (out of 3653!). I woke up with a headache this morning...but it might be because I was crying yesterday evening. Who knows? I guess I’ll just hope that was a one-off & that I’ll feel mostly good. Thank you all for chiming in!
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I took two months off and just started on half which is 10mg. Looking back it seems a bit odd to go on tamoxifen when your body hasn't recovered from treatment, so I took a break so I could sort out what I was feeling and how it allaffected my body. My side effects now definitely from the pill - nausea especially when brushing my teeth, nausea, nausea, and standing still like a zombie and feeling like a zombie.
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I have fatigue and fuzzy brain stuff at times but nothing I can't live with. AIs debilitated me so that's out. I do have a risky profile so I'll deal. I no longer have the ses i started with, hot flushes all the time even in the winter and pelvic cramps. So it can change up, down, around at any point. But it's like other meds out there. It seems scarier because people doing ok on it are gone. What's mostly left are those struggling. That's with all forums here. I don't see my 2015 class here, no one.
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hey, I haven’t been on in a long time. This board has been amazing! I am 5 years out from diagnosis in sept and have been on tamoxifen for 5 years February. I have had the night sweats, hot flashes, dry eyes, and some ovarian cysts. But I have not even considered going off of Tamoxifen because As a RN I feel it is the one thing I can do to prevent reoccurrence or metastasis. I just recently had an ultrasound to check on things. My onc does them yearly. I had a pap last month that came back fine. But the sonogram showed abnormal growth with cystic changes in my uterine lining. Suggested endometrial hyperplasia or further etiology. I have major issues with anesthesia and have also had uterine ablation prior to diagnosis. I do not want to just have a biopsy. I think I want to get a hysterectomy. I have dealt with ovarian cysts since the age of 14 and already had right ovary removed because of them. Tamoxifen has contributed to contribute to left ovarian cysts and I’m just over it. I never stopped having a cycle while on tamoxifen. I did not have to have chemo. My question is has anyone else had to deal with this? Would stopping tamoxifen make it go away ? Any advice appreciated! And I dread more anesthesia (it causes myoclonuc seizures for me for 24 hours.)
thanks! You all are the best. And I still would take tamoxifen if I had to do it all over again. This is treatable even if it is cancer vs Mets.0 -
Hi ForHisGlory,, I'm postmenopausal and started Tamoxifen last April due to having osteoporosis. My MO said it wasn't necessary to see my Gyn, but I did anyway last June. I had a baseline transvaginal ultrasound and it showed a thickened lining. I was unable to have a biopsy completed in the office so I had a D&C last August. Everything came back normal, but they removed a large fibroid/polyp. The Tamoxifen had fed this fibroid and gave me a false reading that my lining had thickened. On my own I decreased my dose to 10mg. Considering this issue and that I had a prolapse I had a total vaginal hysterectomy last Monday by a Urogynecologist. He said my uterus was enlarged and it was full of fibroids/polyps. I feel good about my decision to have had this done. The first few days were the hardest, but it gets easier every day! If you can have it done by laparoscopy the recovery time is shorter. I'm taking another couple of weeks off of Tamoxifen before restarting. Good luck to you.
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ForHIsGlory--I am over 7 years out from diagnosis and 2 years out from finishing my 5 years on Tamoxifen and just wanted to say that I had a hysterectomy during all this (at year 2) and I feel it made tamoxifen easier. Compared to a mastectomy the surgery was a breeze. I did it laparoscopicaly and had everything taken including uterus, ovaries and cervix. I spent one night in the hospital and went home the next day. I took Tylenol for 2 more days then nothing after that. I drove myself to the grocery store by day 5 with no issues. The only problem I had was feeling so good that I lifted something too heavy on day 10 and set myself back about a week.
My original GYN brushed me off when I suggested a TVUS to monitor my lining. After pushing her, she agreed to do one which showed significant thickened lining along with an enlarged uterus and many fibroids. It wasn't till I had the hysterectomy that I realized how bad all that made me feel. I admit my hot flashes came on full tilt but that was because I wasn't yet in menopause when I had the surgery. They've gotten a lot better in the last year or so with plenty of exercise and water which was the same thing that helped while on Tamoxifen. One thing I want to STRONGLY recommend is the possibility of getting a second opinion. That same doctor who poo poo'ed my request for a TVUS then came back after seeing my results and said I needed a hysterectomy immediately and that it would need to be abdominal because I'd "never had kids". (Insert huge eye roll here!) So I got a second opinion (mostly because I had promised at my diagnosis to my dad, who's a doctor, that I always would) and that second opinion said let's slow things down and just do some watchful waiting which was just what I needed. Eventually I did need the hysterectomy (about 9 months later) but he was easily able to do it with 3 tiny incisions! Thank god I got that second opinion! The first doctor actually called me not long after getting that second opinion because that report got sent to her. When I questioned why she was so insistent on an abdominal incision she admitted it was actually because that was all she knew how to do!
So again, talk to however many docs it takes to get you comfortable with whatever decision you make. Wishing you the best!
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lala1 - have you had any bladder issues (such as symptoms of prolaspe) after the hysterectomy? GYN saving hysterectomy as last resort for me because it can lead to other problems. They want to do D&C and hysteroscopy first. I haven't had kids either and I too would eye roll if someone told me the surgical technique would be different because of that. That is absolutely false for this surgery. I just want this freakish bleeding to stop before I head to Nepal to trek for 3 weeks in May. No time for hysterectomy before the trip anyway.
- xo
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Yes, it's true that some women who have problems with the drug post about it here. Those posts might lead one to believe that everyone has bad side effects with this drug. The leap to the other side of that coin is that women do NOT post because they do NOT have problems with the drug and since more are not posting than are posting, it is reasonable to assume that more have no trouble than do have trouble. (that was not a very clear sentence!) But I have always had a problem with that hypothesis, that if you're not posting about it you're not having a problem with tamoxifen. I realize this is offered up as hopeful, encouraging and supportive and that's why most of us are here, to offer support to other breast cancer patients. But the claim 'most women don't post so most women don't have side effects' is a patently unsupported claim. There is no evidence to support it one way or the other. Posting or not posting on BCO is not an actual tally of the overall tamoxifen experience. It would only be indicative if every single woman with breast cancer was forced to become a member and document her experiences with tamoxifen and then, after years and years of this, there might be enough data here and in doctor's files to say, with any certainty if most women do not have side effects or most women have some side effects and a few have ghoulish side effects. Vocality and frequency of posting, or silence and not posting, does not lead us to any real, solid conclusions.
In my reading about tamox before I started taking it I came across one sentiment over and over and over. That tamoxifen globally has a very high non-compliance rate. This is a known fact. It leads to the question - why? Why do women, the planet over, quit this drug at a very high rate? Why is getting women to take their 5 years of tamoxifen such a known battle? It makes one wonder. At least it makes me wonder.
Having said that, we have 4 bullets in our gun to shoot cancer. Surgery, chemo, hormonals, radiation. If you do not have chemo you are down to 3 bullets to kill the beast. Most of us want all the fire power we can get in this showdown, so we take our tamoxifen or AIs and tough it out, because that's what John Wayne would do as he stared down the enemy. I have found the SEs miserable at times, tolerable mostly. But it's a little like that big wheel on The Price Is Right, where you give it a mighty spin and you never know what will be the SE of the day. Leg cramps? A vagina that is growing tumble weed? Hair falling out and into everything you cook and on everything you wear? Skin that is aging faster than it should? Crazy bad periods? Suddenly gone periods? Hot flashes? Insomnia due to hot flashes? Homicidal thoughts when you realize you're hairy husband is causing the hot flashes and shooting him seems like a reasonable reaction? Weight gain. More homicide when Hub mentions the weight gain? Constipation? Whacked out dreams? Aching joints? I mean, the list goes on and as much as I've had most of those listed, I do carry on taking my tamox because I want to not die from cancer.
To those who have side effects and the those who don't, none of us know if we are in the majority or not and posting here, or not, does not indicate what the majority might be. To those who have to swallow the pill and feel fearful, don't worry. All you can do is try.0 -
thank you all for your input. I’m still a bit confused as to what to do. I’m waiting to hear from my MO but my regular gynecologist called and said as long as I’m not having symptoms of irregular bleeding then he doesn’t need to do a biopsy? My sonogram report said “abnormally heterogenous endometrial stripe with internal cystic change. Endometrial hyperplasia or additional etiologies cannot be excluded. Clinical correlation and gynecological evaluation recommended.” Would you be comfortable waiting to see? He basically said call if you start having symptoms and we will do a biopsy. I said I would skip the biopsy and just get a hysterectomy but I’m going to see what my MO recommends. I think this dr just doesn’t want to take me back to the OR because of my anesthesia issues. But really? Wait for symptoms or cancer to grow from precancerous cells? I’m definitely going to need a couple of second opinions on this one too! I did tell him that I’m so over the mood swings, cycles, and painful cysts. I’m ready and he said if you didn’t have problems with anesthesia... I’m at a loss as what to do. I wanted the decision to be an easy one not one I had to make. Praying for clarity from my MO thanks for listening.
PS and yes we do have symptoms and not post. I’ve barely posted while living with my slew of them but still would choose to do it to keep the beast away
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Hi Andraxo, I know I'm postmenopausal, but the D&C wasn't anything to worry about. They give you a lighter anesthesia and you are not intubated. You might have menstrual type cramps as a side effect. You just can't lift anything heavy or vacuum for about 10 Days. Most people are able to go back to work in a day or two depending on their job. As I was told prior to my hysterectomy some issues like incontinence or prolapse can happen especially if your pelvic floor is weakened. Before surgery I had a urodynamic test to make sure I wasn't leaking urine. A cystoscopy was done during surgery to make sure my bladder wasn't hurt during the procedure. Knock on wood!! Everything is working fine so far. I already had a prolapse so I am hoping I am one of the 85% with success. After healing I'm going to do my kegel exercises!! It sounds like you have a good Gyn.
runor. I understand what you are saying even though I am older than you.
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runor - one other "bullet" in the gun is lifestyle. Probably more effective in lessening the chances of getting cancer than curing it, but those choices may help fight as well. Seems like some thinking on cancer is that we are born with it, and that something causes it to outpower our body's ability to keep it at bay. I have used all of those bullets: surgery, radiation, tamoxifen in 2009; chemo, surgery, anastrozole, then tamoxifen in 2016; and now amimidex and Ibrance in 2019. Good news is that tthe new tumor shrunk, hopelly it will shrink into oblivion. DR thinks that each occurrence is/has been a new one rather than recurrence. Maybe if I had eaten those brussle sprouts as a child.......... I'm trying to learn to like them. Actually, it may of been weight gain starting in my 40s and too much sugar.
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. Radiation 6 weeks, tamoxifen 5 years. Dense lumpy left breast, normal right. Acupuncture offered at facility as part of integrative medicine. It really helped with anxiety/stress during radiation treatment.
2016 ER+ left breast. Probably a new cancer, but unknown. 4 rounds TC Aug-Oct 2016, Bi-lateral (my choice) Nov 2016, no reconstruction. 2 sentinel nodes remove, negative. Cold Capping using Chemo Cold Caps (DIGNICAP not available). Anastrozole 1 mg starting May 2017. Joint issues noticed immediately. Stopped Anastrozole after 3-4 months due to joint stiffness in. After several months of no AIs, fingers were feeling better. Started tamoxifen March 2018
6/18/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. 8/2019 CT, Breast/chest , neck/thyroid ultra sound Right Axilla tumor found 9/2019 DR ordered biopsy , also 20+ genes checked, no known genetic markers. Started Arimidex and Ibrance. 1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1 but picked up something in lower bowel. DR consulted a DR I saw in 2011 who compared it to 2011 image, said they had not grown, but one has changed and was starting to obstruct. 2/14/2020 Happy Valentine's Day. Surgery removed to remove, waiting for pathology
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Thanks Flashlight! Glad you are doing well post procedure! I'm very athletic (running, mountain biking, snowboarding) so I'm concerned about down time and restrictions. Peri-menopausal per labs, but I just went 4 years without anything after chemo and now I'm cycling again. Definitely periods and not post-menopausal bleeding based on all the other symptoms that go with regular cycles. Plus, no hot flashes in the months I've been bleeding, and even my vagina is happy! Ha! Fewer tamoxifen side effects since likely more estrogen in my system and I only take 5mg to begin with. I'd prefer the hot flashes and other menopause sx to all this bleeding though. 2 out of the 3 cycles I couldn't keep up with it no matter what products I used and I end up bleeding through my clothes. That's not good when I have my own patients to see and I have to zip home (thankfully walking distance) to change. I feel too old to have deal with this bleeding crap anymore. Sounds like the anesthesia for D&C is light sedation, which is good.
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BlueRedGirl, my god! I hope and pray for some good news for you. You must be so sick and tired of this all. I can't imagine.
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The trend I have seen from contacting the class of 2015 and others chiming in that on this board, people who are doing fine TEND to leave this board and move on with their lives. Some of us doing fine stay or come and go. That's what not only I'm saying but others have too in the past, that it TENDS to be the trend. That's why it SEEMS that there are more issues because so many doing fine and want to forget bc have moved on.
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Hello All,
Was prescribed tamoxifen 20mg today (took anastrozole last year / stopped due to worsening, untreated joint & ligament damage. Must use cane to walk now.
I'm surprised that my insurance requires "prior authorization" for generic tamoxifen -- otherwise, it's out-of-pocket ! Hopefully, med onc's office will come thru w/ pre-auth --
Plan is to try tamoxifen in the morning w/ breakfast.
Good luck to everyone... thanks for opportunity to join the conversation
Roseanne7
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BlueGirlRed,
Wow -- you've been through a lot !!! I admire your tenacity.
Hope there is some good news after your surgery this month --
I'm learning to like brussel sprouts, too!
All the best,
Roseanne7
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If am doesn't work well try at bedtime.
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Andraxo, Your symptoms sound like what I went through when I went through menopause. I had a heavy period every 2 weeks. No hot flashes or night sweats until the bleeding slowed down. It was terrible. You must have Fibroids. Today is day 11 post op and I feel great. My recovery with the repair is 8 weeks! I'm trying hard to be good! I would recommend seeing a urogynecologist who does the hysterectomy laparoscopic or robotic assisted for added bladder protection. They say the recovery is a breeze. I wish I would have looked into it sooner when I could have. Good luck to you!! Have a great time on your vacation.
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