Bottle o Tamoxifen
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Excellent news Lula! I hate that these drugs can wreck a good sex life! I was so worried about it! My DH and I are extremely busy all day and when the night time arrives that's our time to think a "potential life sparing" medication could take that from us made the first few months stressful. Basically waiting for my va-jaja to turn on me! So far so good my va-jaja is still my friend!
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I'm supposed to start Tamoxifen in two weeks. I tried birth control a few times when I was young and always become too emotional on it and quit. I've always been sensitive to drugs and have often taken half doses. Steroids during chemo made me into a crazy speed freak. Has anyone taken half doses of Tamoxifen? Maybe too risky?
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rachelcarter- I’ve read a few people that will take half doses most of the week and then a few days of a whole dose. I’d give it a try with the full dose and you can always cut back if it’s bad. I am 33, diagnosised in April 18, BMX on May 21, and started tamoxifen June 18. So far so good. The only major side effects I’ve experineced is some hair thinning (similar to my postpartum hair loss two years ago) and my appetite sucks so I’ve actually lost weight. Good luck!
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Rachelcarter, I take half a dose 5 days a week and a full tablet 2 days a week. Sunday and Wednesday I take a full tablet. Other days I take half. But this is a decision that has to be arrived at after some thoughtful consideration.
1) how old are you? We know that younger women seem to statistically have worse outcomes with cancer, so your age and thus your increased (or not) risk should factor in to your decision making. If you are 97 you might be more inclined to live on the edge, take a risk and go for half a dose. .
2) how are you going to FEEL taking half a dose? I do not mean physically, but mentally. Are you going to FEEL that you are at risk? Because that is NOT a good feeling and if taking half a dose makes you worried all the time that you aren't doing everything you can to fight this disease, then you are not a good candidate for half a dose. It will give you too much mental torment, at a time when you already have more than your fair share of mental torment.
My own thoughts were that there is no evidence, anywhere, that say we MUST HAVE 20mgs a day or we won't get the full effect. That research DOES NOT EXIST. If your onc is honest he will tell you that 20mg a day is the industry standard, but HOW that was arrived at has nothing to do with effectiveness, but was found to be the dose that most women could 'tolerate' without throwing the drug in the toilet and saying, to hell with this. And 'tolerate' should not be misread to mean that women had no problems on this drug. Oh, women have problems alright and put up with a lot to stay alive. But at 40mgs a day many women felt so miserable they refused to take the drug. So, is 20mg a day NEEDED to be effective? No one knows.
There is a teeny, tiny bit of experimental research that says lower doses might be just as effective. But they are too small to be considered conclusive. To me though, they were compelling enough that they factored in to my personal decision making. My oncologist, at out last meeting, also said there is evidence showing that intermittent use is also effective. As in, be on for a few months and off for a few months and the overall survival rates look the same. Again, what this points to is unclear, but it brings up some interesting possibilities.
I didn't want to feel miserable because I know that when I'm done, when I've had it with something, I am done. Finished. Over. And I didn't want to have that happen with the drug that offers me some positive outcome. To that end I decided on half a dose, part time. If I get a recurrence, many people will say it's because I didn't take the full dose. But those people will be talking bullshit because they have NO PROOF WHATSOEVER that the full dose would have made any difference. WE DO NOT KNOW. No one has done that research.
Despite taking half a dose I think, for me, the effects have been quite profound. Not intolerable. But pretty big. My hair is falling out. It clogs the drains, covers all the furniture and is in everything I cook. Hot flashes, night and day, are miserable and sticky. Some women can't sleep, I don't have that problem, until unrelenting leg cramps wake me up over and over. Seems they clear up for a while then suddenly I'll have them every night for weeks. And they are DOOZIES! My joints have seized up. I'm fine in the day moving around. But in bed, when I'm still, rolling over and moving hurts. By morning, my shoulders and elbows are stiff and pain is the first thing I have every day. Oh, and it stopped my periods dead in their tracks 100% ( happy dance, clapping hands, goodbye evil periods from hell, I do not miss you!). So far my vagina has not shrivelled up and fallen out, although there have been a few sexual encounters where I was NOT focused on anything other than "What the hell is wrong with my kooch?" as it feels like someone is smashing a hockey stick around inside a toilet. Awkward and really pointless. I have had an increase in bladder infections. Because my lady parts are just not up to snuff anymore. Age does this. I think tamoxifen does it faster.
This is long, but hope it gives you some things to think about to help you come to a decision that works for you and you can live with. Good luck to you!
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Rachel - I am also half dosing tamoxifen. Started full dose 3/2018, stopped in June for 5 weeks and then started following runor’s system. My SEs were terrible - hot flashes day and night, no sleep, tingling numbness in face and legs, headaches - just really feeling like crap all the time. Not one day did I feel normal. It was depressing and overwhelming.
I still have the hot flashes, tingling and numbness, but to a much lesser degree. The headaches are gone. Sleeping can still be an issue, but not every night. A new SE I have is really sore feet in the morning. But I can cope with this.
To be on this drug, this is what I need to do. I can’t live feeling horrible. I still think of quitting sometimes, but talk myself out of it!
I truly hope you have no or minimal SEs.
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2fun, I would love to try the acupuncture but really need to know if all are equal or how to find someone reputable in my area that has hours late enough for me to go after work. I have used all my PTO time and am just about out of FMLA time, right now I am out of work for my implant exchange, I was told no drains this time and I ended up with 3, the radiation had evidently caused encapsulation and a lot of scar tissue. I still need knee surgery and will have to return to work a day or two after. I had it all planned to have it a few days after the breast surgery and recover from both at once... when the orthopedic surgeon saw the drains he cancelled my surgery... so now I have to wait.
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Hi Dawn,
I also have joint pain from Tamoxifen, and was prescribed Gabapentin by my RO. They've said that I'm on a fairly low dose and can take it daily if I want. I have to take it at night because it makes me sleepy, and I need to function during the day. But so far it's the only thing that works for my joint pain.
In general, I think that each specialist I've seen does their piece of the pie extremely well. It's the overall view that is lacking, so I feel like I'm a bit on my own to sort out problems like side effects. No one seems to believe me when I tell them that I still have days where I feel like I've just had a chemo infusion. They say that the chemo drugs can't possibly be in my system at this point. For now, I'm concentrating on trying to get some pain-free sleep, and Gabapentin helps with that. I'm also getting back to the swimming pool, and that seems to help a bit.
Maybe this is the new normal? Time will tell, I guess.
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Hello everyone. Wow, ten years out and I'm finally finding you! I had chemo and radiation 10 years ago. Took tamoxifan for ten years. I handled it okay, just had to get used to living with joint pain, exhaustion, brain fog. Stopped tamoxifan 3 weeks ago. Oncologist would not allow me to stay on it. No studies exist to prove it beneficial after ten years. I was also on Effexor (anti-depressant) for ten years 125mg, reduced to 75mg (2 weeks ago) and stopped completely 3 days ago. I am a wreck. The effexor withdrawal has symptoms similar to heroin withdrawal. Horrible headaches, tremors, brain zaps, nauseua, sweating, crying at the drop of a hat, vertigo. Hallucinations (minimal - bugs, all over me but only happened once), inability to discern reality, and I could go on and on. I have no idea if any of this is linked to stopping the tamoxifan. I don't think so although it could be contributing to the headaches and sweats. Taking wellbutrin to try getting some relief. Hasn't helped yet. Concerning tamoxifan (topic of this thread) I was not expected to live past 3 years so I stayed on the tamoxifan no matter what. I'm glad I did. The Effexor? Wish I was given an alternative med.
Crying as I write because I feel so alone in that people generally don't understand what they have not experienced - right? I get that. But this is so @*^# hard.
Anyway, have read many of the posts on this thread and you all seem like such wonderful, caring people. Hoot! Hoot! for you!
Anyone been in my shoes?
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hello all I too took tamox for 5yrs with some of same side effects don't remember too much about them cause Praise God I am a 24 yr Survivor and I don't have any of the side effects wanted to Inspire You All ..msphil idc stage2 0/3 nodes 3mo chemo before and after cytoxin adriamycin 5fu Lmast then got married we planning at diagnosis then 7wks rads. Hang in there with HOPE
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Question for those peri-menopausal:
Are you still getting a period on Tamoxifen? If so is your cycle messed up? For example I am a week early this month, at least I am assuming/hoping that is why I see blood on the TP.
Thanks ladies.
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Vampeyes I have only been on Tamoxifen for 7 weeks. And my second period on this drug has been 14 days so far. Light, but consistent. So yes, I think it throws it all out of whack. Now I have to decide if I need to go see the gyno. Ugh
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Vampeyes- I started Tamoxifen March 2017...no period for 14 months. Oncologist switched me to Anastrozole in March 2018. Periods were like clock work (I'm 53) until lumpectomy in Feb 2017. I skipped one that month should have started the day of surgery (glad I didn't that would have been to much for me to handle!) Since I hadnt had a cycle in 14 months the oncologist said I'm post menopausal. Took Anastrozole from March 2018 until first of June 2018. I started spotting May 31. Spotted for 15 days. I am perimenopausal and now that I'm back on Tamoxifen and here it is October and nothing since the spotting for 15 days in June. Of course I'm told Tamoxifen has nothing to do with me not "having a cycle"....smh!
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Sorry about the periods Vampeyes and Rah2464 I was diagnosed at 50 but had regular periods up until chemo started. I’m 52 now. No periods for the last 18 months (10 on tamoxifen). My gyn has been pretty good with testing and info on menopause. Hopefully, yours can shed some light on your marathon periods.
Karinna, sorry you are struggling with the meds. Perhaps you needed a longer weaning off period since you were on the Effexor for so long. I would go back and ask your doctor for help. You shouldn’t have to feel miserable.
Thanks for the encouragement Msphil! Congrats on 24 years.
I have random aching and discomfort on my rib cage and abdomen. Not everyday and it is more discomfort than pain. CT and ultrasounds showed nothing on my liver, ribs or anything else in that area. That is good but still doesn't explain my discomfort.
My ultrasound did find, however, that my endometrium is 19mm thick and I will need another D&C after just having one in March. I'll be Switching from tamoxifen to Aromasin next week since obviously it is doing something to my uterus. Hopefully, the joint pain won't be too bad. I had no side effects from tamoxifen that bothered me untouchable l they said my uterine was thickened again
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vargadoll, that's interesting that your period came back after that long. I'm wondering if mine will do the same after I witch to Aromasin. My blood work says menopause but who knows. Were you tested formenopause before your change to an AI?
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Varagadoll - they deny Tamoxifen for a lot of side effects we all seem to be experiencing. I am so thankful for this forum and the wonderful women that are here.
Legomaster I am sorry you have to go in for another D&C, especially so soon after the last one!
Rah - I booked an appointment with my gynecologist a few week's ago, unfortunately I still have another month before the appointment.
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Legomaster- YES!!! I had blood work March 20th and was told I was post menopausal. ..bam just like that! No easing into the idea of the next phase of my life!!! I stopped Tamoxifin and started Anastrozole March 21st. Spotting started May 31st (and it wasn't pretty! A really disgusting brownish color...tmi) called oncologist was scheduled for blood work the next morning. 5 days later I get a call that I'm perimenopausal stop Anastrozole and go back on Tamoxifen. I have yet to receive a reasonable answer about how I went from post back to peri... I "assumed" it was the Tamoxifin. I just know that 15 days of spotting put me and my va-jaja in the spot light at my gyn. Atleast I have a good baseline on the condition of all my lady parts..
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Vargadoll, or anyone else with experience,how many days were you off tamoxifen before you started your Anastrozole?
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Vampeyes, none for me so far since the last one right before my diagnosis at age 56 (almost one year ago!). I was soooo close to menopause before last year. My working theory is that getting rid of the tumor stopped the hormone factory which was fueling my cycles. Tamoxifen is my insurance plan.
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Hi Vargadoll,
Way before I ever had cancer, over a period of a year and a half, my hormone levels were tested three different times checking to see if I was in menopause, and was told I was in menopause each time. It's a good thing that I listened to my body instead of the tests because the first two times I wasn't and could of gotten pregnant. The third time I was in menopause. So, regardless of taking medications, sometimes it's difficult to determine when your in menopause for sure.
,
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Veeder14- Thank you for sharing! I always get more info from the ladies at BCO then anywhere else!
Legomaster - took Tamoxifen in Tuesday night got the phone call to start Anastrozole the next night. Just switched to straight to it. I had no side effects whatsoever at the anastrozole (except weight loss. .bonus!) the tamoxifen I have to pee more and have a little brain fog but that's it.
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Vampeyes, I had no symptoms of being anywhere near menopause. Not a single hot flash, no sign that my evil periods were going to ease off anytime soon. They were unmanageable and ruled my life! At 53 I was horrifyingly regular (with some variation as I have had all my life, regularly irregular). I asked onc if tamox would affect my periods. He said no. Boy, was he wrong! 100% wrong! Stopped my periods completely. The last period I had was July 2017, I was staying at the cancer lodge having radiation. When I was done radiation I took my first tamox tablet, Aug 1, 2017. That July period was the LAST period I had. So (counting on my fingers) a little over a year since a period?
I do not miss them.
But I also instantly got all the other signs of menopause, like hot flashes, night sweats and thinking my husband is deliberately chewing like that to drive me insane.
My onc tried to tell me that I was obviously menopausal and my periods would have likely stopped instantly and completely anyway. Bullshit.
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Well not a period as it only lasted yesterday.
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Hi Everyone,
How are you all doing? Vampeyes, please don't get me started about periods! Tamoxifen makes mine so much more yucky and I'm due for my period in about a week. That is when the bitchy side of me comes out to play! LOL.
Any way I have question for you all. I plan on getting my Flu shot in the coming weeks, and I was wondering if any of you have had any kind of negative reaction to getting it while taking our friend Tamoxifen? Has it made your side effects more intense?
Thank you all for your help! I don't know what I would do without you!
Hugs,
Sara
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Hahaha Sara, those poor kids! That sounds awful about the periods, but I think I have read that with you shedding like that you won't have the build up of the lining. That's a good thing! How is the pain? Can't help you with the flu shot, I don't get them. Did once when the kids were little and haven't since.
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No flu shot for me either!
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I have never had any issues with getting a flu shot.
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So my second "period" on Tamoxifen has lasted so far 17 days and getting heavier. Maybe the heavier is a real period and the last 15 days were spotting or something. So I am guessing that the little white pill has made my lady parts quite irritable. Since I only started the medication July 27th, this doesn't bode well for my uterus adapting to it. So off to the Gyno I go for a check. Cancer, the gift that keeps on giving!
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Karinna - I took Effexor years ago and experienced all those symptoms while discontinuing it. It was awful. I finally started my own ‘weaning’ schedule. I cut the pills and would decrease the dosage every week or 2. It took me at least 8 weeks to come off it
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I have been on Tamoxifen for 8 mos and am having regular periods.
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I’ve been on Tamoxifen for a year and haven’t had a period in about 4 months. But they were pretty regular for the first 6 months. Hope they are done.
I have a fun new se. Feet (both of them but the right more than the left) pain. Worse in the morning when I get up but not wonderful all day either.
And leg cramps are making a comeback. ( I’m trying pickles, will let you know how that works out. )
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