Bottle o Tamoxifen
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MyraVH - have you tried switching brands of Tamoxifen? I've found that the Watson brand causes extreme bone pain for me, so much so that I was about to ask my MO for pain killers if she wanted me to continue with Tamoxifen (I've been on it for 3 1/2 years). But then my pharmacist happened upon a bottle of Teva brand Tamoxifen. They haven't had that for about 8 months. I was curious to see if that would help my bone pain so I postponed asking my MO for pain pills and sure enough, after about one week the pain was tolerable and by the end of the month it wasn't bothering me at all.
However, getting Teva brand here is difficult. But I will scour the city each month if I have to. Watson just tears me up. My favorite brand was Mylan, which was what I started with, but they have "temporarily" (for the last 18 months) discontinued it so I'm not counting on it again any time soon.
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I'm scheduled to have my hysterectomy on June 16th. My MO told me to stop taking the tamoxifen 5 days prior to surgery. The tamoxifen can cause blood clots. I can start back after surgery. Anyone else had to do this? How did your body react? Just curious.
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lonnie713........I had 2 surgeries in Jan. 12 & was on Tamo. None of my drs. told me to d/c my Tamo BUT I had already had extensive blood work done for my tendency to develop blood clots after my port quit working & caused a complete closure via a blood clot in my jugular vein. After sixteen vials of blood at one blood draw it was determined I had no worries. Must be why no one considered the interruption of my Tamo was necessary.
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Wow, thanks Norma Jean. I have no history of clotting after surgery and I've had a bunch. I would think that they could give me a blood clotting prevention drug during the surgery. I plan to discuss it with my gyn onco who is performing the surgery though. I'd rather be safe then sorry. My sister was given a clotting prevention drug during and after her recent mastectomy but she wasn't on tamoxifen at the time. She had to inject herself everyday for ten days after the surgery.
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heartnsoul76 - my Tamoxifen is the Teva brand. My oncologist doesn't think that it's from Tamoxifen since the pain persisted even when I stopped taking it. She thinks it's still from the chemo. Today I went to see her and was prescribed Lyrica, scheduled for bone scan and had bloodwork. I also scheduled for acupuncture tomorrow. Let's see how that goes.
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heart and soul - I am with you. I had NO problems on Mylan. I have been on Watson since November and all kinds of issues.
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I am also on Watson and have been from the beginning which was Feb 2013. I developed major muscle/joint pain around 2 months into it. I upped my anti inflammatories and added a foam topper and was much much better. Then about a month ago the pains came back with a vengence. Now they aren't just a night but throughout the day. I think I'll ask my pharmacist about getting a different brand. He's always given me Watson and has no problem getting it. My other option is to buy new walking shoes....
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Since taking tamoxifen the last month my asthma (which is usually under control with regular exercise) has gone insane - I need to use my inhaler multiple times of the day and night. It's ridiculous.
Could this be the tamoxifen?
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Geosomin, last year I was suddenly beseiged with allergies (tho no asthma, luckily)after living my whole adult life pretty much allergy free (except for a few food allergies which were easily avoided).
By this past winter, (on Tamox two years, miserably) I was dealing with, as mentioned before on this thread, lots of serious allergic itching. I'm seeing a functional medicine clinician for treating this, taking Perque bufferred ascorbic acid (high vit C content), and have a new dermatology regimen, and it is getting under control nicely. I am off tamox (on an extended break, with my MO's recent blessing), and I think that is definitely helping reduce the allergic reactions, as well as other side effects I just could not live with any longer. As my derm explained last year, estrogen is protective of our immune systems, so immune system issues are more likely to surface when we take these estrogen altering drugs.
Maybe that relates to your asthma? Good luck!0 -
Lacey12, may I ask how long your extended break is? I too need an extended break after only 3 1/2 months on tamoxifen. I am miserable and suffering, on three other meds to deal with the SEs of tamoxifen. The other meds have SEs of their own. I have to get to the root cause. As my MO said, some women are very sensitive to hormonal manipulation and I am one of them.
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i was reading the thread and found this great information about melatonin and tart cherry tablets. I will start taking them tonight. I will let you know how it goes.
My fatigue is getting worse and worse. Is anybody doing anything that works for it? Do you mind sharing?
Thank you!
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Headeast, the low dose controlled release melatonin helped me at least get to sleep....and return to sleep after my typical middle of the night awakenings. But I now find that nothing works as well as being off Tamox! I need no melatonin and sleep fine....feeling very energetic during the day. This is the first I have felt close to my old energetic self since before rads. Just love that schnauzer pic.....looks just like our old Lacey!
Corky60, my MO has been very understanding about my need to take a long break. I have been off it since mid March, and yesterday she said that I could stay off it into the Fall. I'll see her in early October, and she'd ideally (from her perspective) like me to try an AI just in the outside chance that I might have better tolerance on one if those....and if not, I can drop it. Sadly, I belong to the "very sensitive to hormonal manipulation club" too, so I can't imagine that an AI is going to be my friend either.
. Doing nothing (but leading a very healthy lifestyle with lots of exercise and kale!;) is certainly a risk, but she was totally in agreement that I gave it my best shot over two years and I just could not tolerate the SEs. More relevant to you, perhaps is that my first Tamox vacay was a three week one after the first three months on it, when I could not sleep and was exhausted.....and working a demanding full-time job....I cannot now even remember that period of time!! Needed to see if the tamox was causing the fatigue and sleeplessness. Clearly the culprit!
When I resumed tamox, she tried to help the sleep issue with Gabapentin, which resulted in my needing a cardiac workup.
/. Abandoned that meds, and eventually found the CR melatonin that helped a bit. Last year in March I took another break for three-four weeks, to see if I could feel more energy...I did, but again went back on it with the hope that I would avoid some of the previous SEs....not a chance...then the allergy problems started....and big time cog fog, which was really impacting my life. I sucked it up until this past March and MO was totally understanding about my needing to see if I could get my brain back....and lo and behold, three weeks after being Tamox free I did. No need to see the neuropsych, which we had discussed. So, it feels weird, but for now I believe I am doing the right thing, given my terrible sensitivity to this drug. It is reassuring to have her support, but scary to know that we have no way of knowing if any cells are lurking about. I keep banking on my very low oncotype score (4) as a hopeful sign that I won't have a recurrence, as well as the fact that I did do two years on the Tamox. Good luck! Sounds like your MO "gets" your situation too, so will probably work with you for the best solution to gain some relief.
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Lacey, yes Tamox is the culprit. I feel I drag my feet every morning to go to work and now I am not a positive person anymore. Tired all the time and worried I will lose my job because I am not delivering the way I used to.
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I have been on Tamoxifen since Sept and I seem to be getting more and more tired daily. It is rotten!!0 -
I LOVE this board I lurk more than anything and it's very reassuring to know I'm not alone (or crazy) with how tamoxifen makes me feel!
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mstrouble...ditto!
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Hi Ladies
I started taking Tamoxifen in the mornings instead of the evening a few days ago in an effort to get some better quality sleep in order to be able to function the next day.
So far no change in sleep - still get up every two hours to go to the bathroom or because I am overheating or because I am too cold with the AC on!
But there might be a tiny improvement in my coping during the day so I am going to keep up this routine and hopefully see some improvement.
I will report back.
I have decided that if my MO had nothing helpful to say about this issue and made me feel like I was nuts I don't want her treating me so I will be changing MO's in December when I have my next checkup.
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hi girls I have come off Tamoxifen after 5 long years (had several breaks of 1 month for travel etc) I did not realise till I came off it (since early march) that it was the cause of all my insomnia and breathlessness and general exhaustion. I thought I would never feel like I did before BC but now I do. I was going to continue on for 10 years but after reading this site and much soul searching realised that I had a low quality of life for a very small percentage of benefit. My life is so much better now off it
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Lacey12, thanks for your reply. I have pretty much made up my mind to quit this drug. Unlike you I don't have an oncotype score since it isn't protocol to do it for a lesion of the size of mine. Furthermore, there was no cancer present in the lumpectomy. It must have been removed with the biopsy. I have lowered my risk of recurrence by losing 12% of my body weight since the beginning of the year. Less fat means less estrogen. I still have about ten more pounds to lose to get back to my high school weight. With the weight loss and hormonal therapy the ten-year survival rate is 89% with no meds or 94% with meds. I sure would like extra "insurance" that the meds would give me but the cost is too high. God willing I will not have to take hormonals in the future. It's a hard choice but as I ease into it I am becoming more at peace.
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wow Corky, tough decision but at least you have made one. I am still resting in bed with my husband bored to death watching tv.
I think i will email my MO and see if I can stop it for a week or two and also change it to the am.
Don't want to have cancer again, but this is becoming ridiculous!
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Hi Myra,
Sounds like your MO thinks it may be neuropathy? I have a little neuropathy in my toes - they get painful at night. A lot of women swear by Glutamine and it's been helping me a lot. It's an OTC supplement. I recommended it to someone with neurological pain NOT from chemo and he's also had relief.
Let us know how the acupuncture goes. I've heard so many good things about it - pain relief, energy boost, helps with sleep and depression. I should just go and try it out myself!
The Watson brand of Tamoxifen definitely caused me pain because it went away when I switched brands. What I was saying though was maybe you should switch brands - in this case try the Watson brand and see if it works better for you. We all react differently to the different brands. Either way, I hope you get some relief soon!
Ladies, I've become skeptical about Melatonin (although I just bought a BOGO so now I have tons of it!). What I've found is that it does help me sleep but it also makes me tired the entire next day, sometimes two days. My pharmacist said it doesn't even help her sleep, just makes her tired the next day. I think I'm only going to take it when I definitely can't go to sleep and plan on it making me tired the whole next day, too.
Delvzy - thanks for posting and letting us know how it feels to be OFF the Tamoxifen! Sounds wonderful! I have 18 months to go and I just do not think I'll be going for the 10 years. Besides, I want to give my body a break from all of this chemical treatment! It's a scary thing to fly without the security blanket but I'm anxious to see if I feel like my old self again.
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Corky, yours sounds like a sensible decision to me, given your dx and treatment stats. I am just relieved that my MO is very attuned to her patients quality of life issues, thus supported my decision to take such a long break and ultimately acknowledge that tamox was not a useful drug for me in terms of my overall life. Wish that were not the case, but at least I'm not made to feel badly about it. While the worry about recurrence in another site certainly exists, I seriously believe that I would be better to have a shorter productive life, than the sustained existence of a sloth, which describes my last two years! I almost cnnot believe how alive and productive I feel now. And yes, I believe my thirty+ lb weight loss ober this past year will be helpful in warding off recurrence. Hoping I can lose just a few more lbs, but even if not, I am carrying more muscle weight than fat now, which should help in the estrogen non-production dept.
Bounce, I hope you can find a more empathic MO. No one should be made to feel badly about SEs from drugs! And it sounds to me like you have been a trooper! We are people not statistics!! Have you tried the controlled release melatonin to help with sleep? I did find that that improved my ability to sleep while on Tamox. Best of luck to you....
Delvzy, Congrats!
Headeast, my MO had explained to me last year that a short few week break does not affect the overall outcome of tamox treatment since it is a long term treatment. So, it seems to make sense to ask about that. Good luck!
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Lacey, yes, I will ask and let all of you know what happens after.
Reading this thread I went yesterday to CVS and bought chewable Melatonin (no soy in it) and Tart Cherry at the Vitamin Shoppe. I tries the Melatonin last night and even though I slept much better (5 hours of deep sleep) I woke up very tired. The tiredness can be still the Tamoxifen.
Well, tonight I will try the tart cherry and will let you know.
Yesterday I also took the Tamox at 6.30pm instead of my regular 8.30pm, today I took it at 4pm and tomorrow I will take it in the morning. I read for some people Tamox is better in the morning.
As you see I am trying different thing from what I read in the thread (thank you thank you!) trying to make my life the most normal I can.
If any of you have any ideas of have something that works for you please share.
Thank you so much, Headeast
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Hello ladies...I am having trouble sleeping too but I have given up on being able to get normal sleep. I tried Melatonin and it did not work for me either...did the BOGO too. LOL. Gave the other one to the food pantry
I was wondering if anyone else noticed that they had hot flashes after they ate? I noticed this and wondered if it was the medication kicking in when my body is creating estrogen. Very curious if anyone else is experiencing this.
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Last week I had another TVUS which showed my right ovarian cyst was a tad bigger but my left much smaller, endo lining down just a hair. Dr still wants to do hysterectomy but said I can wait till end of summer maybe even Nov depending on next ultrasound. He ran a test on my hormone levels and just called to let me know that I was NOT in menopause, or even perimenopause. This throws me for a loop as I thought that would explain some of the problems I am having. Now I'm wondering if it's all the Tamoxifen. I've been on it for 16 months now. I was having regular periods till the Jan. Then I didn't have one for 10 weeks and now it's been 3 months. Does the Tamoxifen stop periods? I didn't have chemo or rads. I have been having many issues ever since my last regular period in Jan....nausea, dizziness, night sweats, trouble sleeping, crushing fatigue, memory problems, aching joints, mild headaches, fullness behind my eyes like sinus problems, bloating, weight gain, possible allergies which I've never had in my life, and most annoying of all....electric shock-like buzzes in my head that just last a second or two. All of these symtoms can be attributed to perimenopause. Is it possible to have normal hormone levels but be going through perimenopause? I am worried now because if all this is due to the Tamoxifen then it makes me worry that maybe I shouldn't be taking it! I know chemo can put you into menopause. Can Tamoxifen do the same but without necessarily changing hormone levels?
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Loral, I vote for the pharms to put that on the bottles of Tamoxifen along with the other warnings!!
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lol! Ok ladies, I found out that part of my fatigue is lack of iron. We need to take 18mg of iron and vitamin C to boost it.
I became a vegan almost at the same time I started with Tamoxifen amd reading now about fatigue I found out I am deficient in iron.i started taking Tamox in the am and iron today. Last night I started with Tart cherry pills to sleep better and be less tired during the day.
I hope this solves my issue with fatigue. I will keep you posted.
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Headeast, if you find the iron pills too harsh on your GI tract (for me they cause bad constipation), I recommend a tonic called Floradix. It's a vegetable-based tonic that provides iron that is easily absorbed and digested without the constipation. I found it very helpful when I needed iron supplementation during pregnancy. I bought it at Whole Foods, but you can probably find it online at Amazon if you don't have a local WF nearby.
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Hi Everyone:)I see my oncologist for an appointment on Friday and I want to discuss with him what my genetic counselor had suggested. Even thought I am negative for the Braca 1 and Braca 2 genes and for the E-cadherin gene she is still suggesting I consider removing both breasts and my ovaries because of family history of breast cancer. This just bummed me out. Why was this not suggested when this all started before I had surgery and radiation- sigh...
Has anyone been advised about Soy while being on Tamoxifen? There is a medifast diet out there that many are using in this area and losing weight but I was wondering if soy interferes with Tamoxifen or if anyone's oncologist has warned them of the effects of it? I will also ask my oncologist on Friday about it as well.
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