Bottle o Tamoxifen
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Hello all my lovely ladies, Quick question for all of you who are further down the tamoxifen road than I am(started taking in December 2017) Have any of you had problems with spleen/liver enlargement or gallstones? The only reason I knew I have these issues is because of digestinal issues I have been having and they are trying to get to the bottom of my tummy problems with a Ultrasound and CT scan. (You know theres a issue when Zija herbal detox tea doesnt do what it is suppose to do) getting upper and lower GI over the next couple of months. I believe around a month ago I had a gallbladder attack where stomach muscles were spasming with diaharea and throwing up (I know TMI) I am kinda feeling like I am falling apart! I eat clean and exercise at least 30 minutes a day 4-5x per week. I am so frustrated!!! Just recently my hot flashes and flushes have became worse, like the infernos of hell have opened up and swallowed me whole! This summer should be interesting!!! I am already on Magnesium trying to keep regular. I drink tons of water, and try to be a good girl, but I am just at my wits end.
So thankful that my follow up with MO is coming up on April 9th!!! I have ton of questions. Any imput would greatly be appreciated. 0 -
I thought b/c patients were supposed to avoid lavender oil
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I have elevated liver enzymes and gallstones and have been on tamoxifen since July 2016. My liver enzymes have slowly increased each lab I’ve had since December of 2016. I also had ultrasound and ct that showed the stones and fatty liver. I have chronic insomnia, hair brittle and falls out easier. The big T is the gift that keeps giving
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Lovinggrouches, since you are low risk I would advise you go to the website that assesses your risk benefit difference of using tamoxifen or not, based on the specifics of your cancer details. My benefit, I also am low risk for recurrence, gave me a 13 mo lifespan advantage, but w/ all the negative health efx from 2 yrs on tamoxifen, I worry that I'm losing more than that if I stay on it. I know I have lost more than 13 mos worth of quality of life!
I went off it for 3 mos to stop night sweats so I could have dermatology allergy patch testing done. I made rapid progress in PT, had less pain, became clearer visioned, stopped the dizziness, & actually went into the deep sleep stage at night. Oh, the joy! For the first time since starting tamoxifen, I felt hopeful. The day after the testing was over, I went back on tamoxifen. W/in 2 wks all the old side efx returned, including the awful digestive problems. I became so despondent. I decided to research newer medical research, articles on tamoxifen, & didn't like what I read. After finding, using that risk assessment tool, I had no qualms; I have taken back my life, stopped "the torture in a bottle", & am starting PT for 2 more conditions that were made worse by tamoxifen. I feel like I have been liberated. I now have realized that while on tamoxifen I was more afraid of what condition I would be in at the end of the 5 yrs, than I was worried about getting cancer again. What a relief to not have that burden anymore! I am so grateful to my dermatologist.
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Blownaway, If any of your cold/flu med contained benedryl, that might explain why hot flashes stopped. Benedryl is on the list of med that interfere w/ the effectiveness of tamoxifen.
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I've been doing the Tamoxifen thing for only about 7 weeks, so a relative newbie. I am having between 15 and 20 hot flashes a day, and chills in between. It seems as if I am too hot, or too cold. And it's not that kind of invigorating warm or cold feeling -- it's that sickly sweaty and chilled feeling most of the time.
My question is -- is this normal? I am trying to figure out if I am dealing with symptoms I should talk with my MO about, or if I am in the suck-it-up-buttercup range of side effects. I know this isn't going to be easy. I am just trying to figure out how hard this is going to be.
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rhyfelwr- Yes, unfortunately I’m with you. A few weeks back I posted the same question about the chills on this very thread. Several people responded that they had this too. SUCKS! Can’t even sleep because I’m cold no matter what I do. Then the hot flashes come on in between. The only thing I’ve found is that sugar seems to make things worse, so I’ve cut way back. I’m 6 months in and it’s not any better. I leave sweatshirts all over the house, put them on, take them off, ALL day long. Not quitting this though. It’s my insurance policy.
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Magnesium absolutely stopped my hot flashes and muscle stiffness and aches. I started Tamoxifen in November and was having 5-10 hot flashes a day and moderate muscle/bone aches. Started Magnesium in Jan and within 2-3 weeks all flashes and aches were gone. Was it the Magnesium? I’m not sure but I’m going to keep taking it! I’ve seen others post that it helped them too. I’ll post a pic of what I use, it says take 2 daily but I only take one. I ordered it from Walmart. Like most vitamins there are a ton of different ones but I really like this one. Some forms of Magnesium are hard to absorb and can cause bathroom issues.
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TWills, I am taking 1000MG of magnesium a day for migraine issues, and that doesn't seem to be doing the trick for me with the hot flash problem. I do find that magnesium helps for the migraines, so I am going to keep it up!
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3dognightmam... do you have a link for the website with that assessment
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Rhyfelwr, Well at least it helps your Migraines:)
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When I researched tamoxifen as related to hot flashes, followed by chills, I learned that the reason we go from 1 extreme to another is because our body's temperature "regulator" is affected from both ends; our bodies that normally had a 5-6° range of comfort, narrows to 2-3° range of comfort. Not much leeway there!
One day, as I started getting ready for chiro's appt, a hot flash began, I went to sit where my tower fan could do its job, & then, the hot flash never subsided. It went on & on! I missed my appt, & after 1.5 hrs, was trying anything I could think of for it to be over. For awhile after that, I dreaded even more the beginning of a hot flash, so afraid it would happen again. I bet my blood pressure was sky high during that hot flash!
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Gigibee, the website is www.surgonc.org/resources/models-nomograms/breast-cancer-risk-models
Then, I chose the cancermath.net Breast Cancer Outcome Calculator
It was all easy to use, good thing, after tamoxifen's effects on our brains!
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Hello ladies, it's been awhile since I posted. I have a question for the ladies on Tamoxifen that have had BMX. If all your breast tissue is gone why the need for the Tamox still?
For sleep - has anyone tried hemp oil?
Tlfrank - you should be Anne to tel your pharmacist that you want the other Tamoxifen and not this new one.
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vampeyes---All your breast tissue is never truly gone. My sister's MIL was just diagnosed for the third time! First time she had a double mastectomy and was put on Tamoxifen. She couldn't tolerate it's SEs so she quit. Second time, she found a lump in the tiny bit of tissue close to her underarm. This time they gave her AIs which she quit for the same reason. This time she found the lump just at the bottom of her implants along the ribcage. Unfortunately it had spread so she's just had a port put in and is doing chemo. They are quite optimistic that she will do well and get many more years. When I had my hysterectomy I expressed my happiness with the idea of no more pap smears and my GYN was quick to tell me that would not be the case. He said that first of all I still have a vagina so there's always a risk of vaginal cancer. He then said that even though he took my ovaries as well as cervix that you can't be sure every microscopic scrap of tissue was removed so the risk of those cancers never disappears completely. I'm 3 years out from hysterectomy and still get pap smears. Last one was even suspicious for cancer but it turned out to be a false positive. And I get not only a mammogram on my remaining breast but every 3 years I have an MRI to check my boob and foob thoroughly for cancer as well as checking my implant for leaks. I'm a big believer in being vigilant so I make sure to get all my recommended checkups....including the dreaded colonoscopy since BC give us an increased risk of colon cancer. And I get it every 5 years instead of 10 just as recommended. Tamoxifen helps reduce risk not only of contralateral BC but also distant recurrence.
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Yes, the cold and hot is normal. But I can tell you what helped me the most with it. Exercise. If I sit too long, I get cold and then it is followed by the hot flash. I worked out 10 days I the last 14 and the hotflashes have been better lately.Trying to work out more but life gets in the way.
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I've been on Tamoxifen for almost 2 months now and have a few side effects. I am COLD all of the time, no hot flashes just freezing all of the time. The other SE that I can only attribute to Tamoxifen is weight loss. I generally have very little appetite, have to remind myself that I need to eat. I have lost 15 lbs since my BMX on 1/4/18. I know most people gain weight, not me so far although I'm only 2 months in.
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I've been on it for just short of two weeks. The only side effects I've experienced are dry mouth and insomnia. I have noticed I'm frequently cold, but I've always been that way, so maybe it's just the norm. While the insomnia is a bear, I hope I that's it. I can deal with that. Jadalulu, I also have to remind myself to eat. I've lost a few pounds since starting.
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Today I was sitting in my clean kitchen, cup of fresh coffee, fire in the furnace, all was well. I bit into my toast made with my wonderful home made bread and as I chewed and looked out over the melting snow I thought, there's too much butter on this toast.
Let me say that again in case you missed it. I thought, there is too much butter on this toast. In what unholy universe is there ever, ever, too much butter?!?!
This is tamoxifen! My love of salty things and sweet things has been destroyed. Used to be I loved a donut and coffee. Now, no thanks to the donut, I can't handle the sweet and I cut back the sugar in my coffee. And then salt. Used to be I loved some good old salty Ripple chips. Now? I can eat a few and then nope, no thanks, done, can't hack the salt. And today, out of the blue, when I was sitting there minding my own business, I get the EVIL and unnatural idea that there can be too much butter ?!
What the hell is wrong with me?! Damn tamoxifen!
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Lala1 - thank you so much for your reply, I have been contemplating BMX, but reading that makes me think it's not worth it if I can still get breast cancer. I was trying to avoid the fear, panic, worries every time I found a lump in my breast. Although with the BMX maybe it would be easier to spot? Big decisions, but I have time.
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Runor- too much butter? Hopefully bacon will not be next on the list
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I’ve also been quite sensitive to salt for a few months, I never considered the Tamoxifen as the cause. I just thought my taste was changing, sugar hasn’t been a problem.
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This is great information as my next complaint about the Big T is the hot flashes when I'm sleeping. I think I woke up about 5 times last night boiling hot. Thanks for the tip!
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I woke up from a hot flash from hell at 2AM today and never could get back to sleep. I ended up just getting up and getting on with my day after a few hours of trying to fall asleep. This is just the worst SE!
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I agree- these hot flashes. Oy. I am NOT looking forward to summer here in Texas. 4 fans ready to blow. Too much? LOL
Runor- egad....too much butter? That's just wrong. Damn Tamoxifen.
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Runor---Damn! Why couldn't that have been my Tamoxifen SE?! I now CRAVE butter....and salt...and sugar...and donuts....and everything else that's bad for you. But really Capecodgirl? Bacon? Sheer blasphemy to hope bacon is next!
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Runor: thanks for another post that, onceagain, actually made me LOL! Your research and humour are much appreciated.
On SEs, I have had hot flashes/night sweats and cold spells in my first month on the big T. But the hot flashes are not even close to being as bad as those I had when going through menopause. Plus I have vivid dreams that others have reported, but I think are likely caused by my disrupted and light sleep. I am content thinking that me and the T are kicking cancer in the butt!
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I know that some of the deal of T is that it is crashing me into menopause instead of being let down slowly, so a lot of the SEs are things that would have likely crept up on me eventually anyway. But I am having a hard time with feeling as if I have the flu all the time -- just one big sweaty shivering aching mess.
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I just found this thread today but I am happy to recognize so many names! I started Tamoxifen 7 days ago and so far, so good. I seem to be super thirsty all the time despite being a good water drinker. Sleep is not a problem yet, but I did have a dream where I had to rescue my DH from a bad blond rockstar neighbor who was trying to kill us...oh yea, that must be the big T! I am having dull headaches and a dull pain in my left side too but no other GI issues. I have become so much more aware of my own body and sensations since this whole BC thing began - I never really noticed anything much before. I researched like crazy for each stage of BC treatment ... until this one. For some reason, I am terrified of Tamoxifen and medically induced menopause (that's what this is, right?), but I guess it's time to put on my big girl panties, join this group, educate myself, and read up on it. My MO told me that he thinks my periods will cease in 3 or 4 months, and he blew off most of the other SE's except told me to call him if I felt like "killing myself or anyone else". Gee wiz, what am I putting in my body? Thanks in advance for all I will learn from you.
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DownNotOut, I don't know that tamoxifen puts us in menopause. It's a good question. Technically our bodies are still producing the estrogen they used to produce. It's just that many of our cells are blocked from getting and utilizing that estrogen. True menopause is when our bodies, on their own, have a serious dip in estrogen production. I think our situation is that this is not TRUE menopause, but sure as heck feels like it.
My onc also said that tamoxifen would not stop my periods. Boy was he wrong! I have not had a period since I started back in August 2017. Up til then, while they were not on the nose time wise, they were always there. Now? Nothing. Not even a dribble.
About the dull pain in your left side, I noticed that constipation was an early problem with tamoxifen and it's possible that might cause some side/gut aches. It did resolve after a while but now and then I think gee, I ought to increase my prune intake. But I DO know what you mean about being hyper-vigilant and slightly panicked about every little twinge and ache. An unfortunate side effect of cancer: paranoia.
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