Bottle o Tamoxifen
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I just picked up 180 tabs yesterday. I take 10mg twice a day. No shortage of Tamoxifen here.
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I picked up my usual 90 day refill this week, no problem!
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I have not been able to get more than 30 tablets at a time for the past 3 refills. They are either not available or they are limiting the amount they give out.
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I'll find out tomorrow if there's a shortage here as my 90 day refill is now in process.
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runor, Could you ask your doctor to call in the 10mg tabs to see if that makes a difference?
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This is the beginning of week three of tamoxifen. Was really stressed out before taking it after reading all the side effects, but so far it hasn't been too bad. Was perimenopausal when diagnosed so I was already having hot flashes, worried about the hair loss. Dry skin, from the medicine or the season? Hands and feet are really dry.
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Dear disotte,
Welcome to the BCO community. Thanks for sharing your story. We hope that you will stay active here, get connected and benefit from the support and shared experiences of our members. Let us know if there is anything we can do to be a help to you.
The Mods
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disotte, I take fish oil and it has really helped with my dry eyes. It does take a few weeks to work. The Tamoxifen really didn't give me dry hands/feet. I feel that is the season and washing your hands more because of the virus. Also, you have to stay hydrated while on this med.
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Hi Runor;
I filled my prescription at BCCA last week, they gave me three months, at no cost. I've just jumped on this thread, and likely am missing info you posted earlier. Please ignore this post if so
You can message me if you'd like me to pick up for you and drop off.I reluctantly went back on Tamox a couple weeks ago post op. Ugh. Feel like I've been clubbed in the head, pain in hip again, and a thousand other cuts that make me fell like a complainer and a malingerer etc etc. Will try another year - the MO explained an option of medically inducing me into menopause. I'm 50, but nowhere near menopause according to bloodwork.
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BlueSkye I was also off my tamoxifen for surgery (now postponed indefinitely due to coronavirus). I was supposed to be off it for 14 days pre surgery and one week post surgery. I was on day 10 when I got the call that my surgery was cancelled. I was just starting to really enjoy an energy surge and better sleep. I empathize with you on feeling like being clubbed in the head again. Bleh
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At my MO appointment yesterday, the PA asked if I'd gone back on the tamoxifen. I told her no and that I probably wouldn't. I've had three pretty bad allergic reactions in the last couple of months (most recent was last week from my Prolia shot, ugh). And right now I feel like my body is just not going to tolerate anything else and needs a chance to get back to normal.
I'm still not interested in taking tamoxifen even after that, I told her. That heart rate spiking was dangerous--my resting pulse yesterday was 45 (normal for me, I'm a runner). Those heart rate spikes occurred within about 30 seconds of starting a run and jumped to the high 170s and 180s. NO THANKS.
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edj3, I feel like especially for the next while, when so many medical professionals and facilities will need to be dedicated to Coronavirus care, you made the right call to stay off of it. You don't need anything that increases your chance of needing emergency care now. Or really, even anything that would need in person care if at all possible.
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BLuesky, thanks for the offer but I live in the interior, it would be a heck of a drive.
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Rah2464, My wife is suppose to have a lumpectomy at Dana Farber in Boston the first week of April. We are anxious about it being cancelled - especially since we have to travel. Do you mind me asking what they said when they cancelled yours and what type of organiztion the surgeon was with?
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Lieserjp, the hospital cancelled the surgery. This surgery was to repair an issue with my reconstruction, so there was no life threatening component to it, just discomfort. I am sure operations to address cancer and other serious illnesses would get top priority and completed as soon as possible. I also think an outpatient procedure may have a higher chance of being completed but that is just a guess on my part. Do you have to travel far? I am so very sorry your wife is going through this journey at such an unsettling time. Please update us as to the status of your wife's surgery. Bless you both.
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Sorry your wife is going through this at this difficult time but please call the doctor and the hospital to make sure the surgery is still going to happen. My Surgery for another issue was cancelled and has to be done May 1 now and that is still not a definitive date according to my dr's. Take care and keep us posted.
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hair loss update: no it's not good. I continued to lose hair at an alarming rate. I spoke to my MO in December and he had no real advice to offer except to commiserate. In January I purchased some rogaine/minoxidil and started using it the last week of January. I spoke with Mumsy who is a retired nurse and decided about a month ago to reduce the tamoxifen by half again, so I am splitting a 20 mg tab and taking to ever second day. Finally for the past three days the hair loss has returned to precancer normal.
Let's hope this is the end. I have some really thin spots at temple on one side, and the crown is nearly bald. I'm able to do a comb over. I can see some tiny hairs emerging in some spots but I despair that his is the new normal.
That said. I am alive. Cancer and COVID free. My family is healthy and well. I am happy to just be.
Love to all.
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I will take my first dose of tamoxifen tonight. I am not excited about the listed SEs but am hoping for a good response. Trying to have a positive attitude that "just because" it's listed doesn't mean I'll experience it. I have not gone through menopause yet but have been having the occasional hot flash and some vaginal dryness. I did pick up a bottle of replens in case. My husband asked what it was for and I said "to hopefully keep my vagina from turning into sandpaper." He cracked up and said they should adopt that as the new tagline on their packaging. We have tried to find the humor through this situation wherever we can
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10 days of ‘normal’ hair loss. Dare I believe in this small positive in such a turbulent time? Ya I think so. :-) I have quite a few little white guys frowing in there and with not being able to go for root touch ups I’m sure hoping to see lots more in the coming weeks. Yay for hair growth.
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after nearly a year of significant 'shedding' of my hair - I remember asking my MO to drop my tamoxifen back to 10mg in June 1019 due to hair loss and dry skin. Then again in the fall of 2019 on my last visit to the MO... more like winter it was in December... he had no advice but lots of sympathy... here we are.. April 10, into 20 days of norma hair loss... I am hopeful. With the Covid, I haven't coloured my hair since february... so i'm kind of encouraged by the tiny silver highlights growing in.. I also dropped my dosage back by half again... so i take 1/2 tablet every other day for about a month so or 5 weeks... take care everyone.
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Hope your hair continues to stage a comeback, Molliefish. I hear you about the dry skin! Not that I'm dry, just old and weathered looking. I got old really fast on tamoxifen. Like, fast.
My body hurts way more than it should. Yes I'm not young and yes I'm no athlete. But simply moving around in bed at night is an exercise in agony. I remember this was a symptom I had in the first few months on tamoxifen. It eased off but lately seems to be back with a vengeance. It seems the tamox side effects come and go in waves.
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Hi ladies,
Going on 3 years of being on Tamoxifen. And my body i have every side effect possible.
I have not found anything to help with body pain.
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Shelabela...the overall, unspecified, general annoying ache and creakiness. What the hell is that?! I CANNOT believe that I could be fairly flexible and limber in 2016 and within months of starting tamox in 2017 turned into the Tinman, all my joints seized and in need of oiling. I literally have to plan the strategic moves required to bend over and put my shoes on! But where I have noticed it the most is in bed at night. Rolling over HURTS. Lumbering my unwilling and crickety body into a new position is an exercise in pain. Is this normal aging? Or accelerated aging? I don't know. But I do know what you mean about body pain. Everywhere.
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I am sorry too Runor and Shelabela. I have been fortunate to have avoided the aches, pains and stiffness, but do suffer the weird cramping at night, or pretty much any time. I can get a cramp in my diaphram or intercostal muscles bending over to tie my shoes, or in my toes putting on my socks...
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runor, molliefish, yes the cramping is horrible also. I have found that massage therapy helps a lot.
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The cramping... I fear the cramp. Mine go on and on. I find drinking water before bed helps, but then I have to get up to pee. So it's either a cramp throwing you out of bed onto the floor to flail and moan OR you have to get up to pee. Or it's a hot flash roasting you awake. No wonder I feel tired all the time!
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Leg cramps. I no longer take tamoxifen, but when I did, I was prone to leg cramps, especially in the left calf. It could happen anytime, when active, when sitting, when stretching, etc. And always hurt/interfered with what I was doing. Magnesium seemed to help a lot. There are many formulations. The one that seemed to help the most was magnesium glycinate. Just do not take too much since it might excite the bowels. I tried a magnesium lotion as well, but don't think that really helped. One person told me she used "Calm" to help with sleep rather than cramps. Staying hydrated and active also helped.
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
6/2019 Noticed Swelling in R-arm, opposite side from where lymph nodes removed. Trip to urgent care. They did ultrasound, concerned that there might be a clot, there was not. 7/2019 called my oncologist who referred me to lymphatic therapist, who fortunately recognized something was very wrong, contacted my oncologist.
Oct-Sept - scans, biopsies. Tumor in R-axilla. Stopped Tamoxifen. Started Ibrance and Arimidex.
1/2020 CT showed tumor in Axilla shrunk (hooray!!) from 2.3 to 1.1
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I just picked up my Tamoxifen. 20 mg. Walgreens is NOT the place to get it. 30 pills $40. No insurance here. I'll go to Walmart next time. Hubby was nice enough to tell me it was cheaper there. No surgery here yet b/c of the Covid and just found out I'm DCIS yesterday. Dr. wants me on the Tamoxifen b/c she can't do surgery or send me to the oncologist yet.
I've rooted around in this thread some. It seems taking it towards dinner is better? Some ladies were saying they sleep better taking it towards night? Also it can cause some constipation- so drink plenty of water with it. Does anyone still drink coffee? I was reading my menopause books for hot flash tips and of course it advises against caffeine. Is there any way to avoid mood swings? Also- naively I was thinking it would throw me quickly into menopause. duh. So I guess I'm still going to have periods for awhile and they'll be irregular and possibly heavy? I guess I'll have to go get some magnesium glycogen so I don't have leg cramps? I guess I should maybe think of putting some extra sheets on the bed or a towel under me in case I sweat like a freak and don't want to get up and change the sheets in the middle of the night?
If I'm about to have a period should I wait until it's done to start? TIA
Am I in the ballpark for what to expect? I'm just afraid this is going to wreck my Qol. You know. Sweat at night, leg cramps, so hence no sleep. No sleep makes me super witchy. Then having to try to work fatigued and witchy. Am I allowed to say fml? I already have fatigue and body ache. If it gets worse I'll be barely able to function. It's the reason I went to my PCP in the first place. Had blood work- everything fine there. Had mammo and 3 moths later biopsy.
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Mareny109, I find taking my pill when I am least likely to forget is the main thing. So I take it at night with my blood pressure pill. I have never noticed if side effects are better or worse due to pill timing.
Constipation, yes. For me especially the first few months but that leveled out. And crazy dreams! Like....sit up and think, what the hell was that all about?! That passed too after a while. To avoid mood swings have Hub move to a separate residence and arrange visits in which he brings wine, chocolate, roses and FOOD. You will be happy. Then he will go home and you can sweat, or not, alone in bed and disturb no one with your on and off again cover tango. Coffee is the elixir of life and anyone who tells you to give that up is just plain evil. As I figure it I can be miserable and caffeinated or miserable and NOT caffeinated and which leads to homicidal, so coffee is a good idea.
At 53 I was having regular periods that were so hideous they ruled my life. I asked doc (onc) if tamox would affect my periods. He said no. He was wrong. Last period was July 2017. After that period I started tamoxifen and that was it. Over. Finished. Gone. Woohoo! He did warn that sometimes when people go off the tamox the periods come back. Oh hell no! But I have had no spotting, no smudging, no suggestion or threat of a period. NOTHING.
Good luck with this. This must be a horrible time to be waiting for surgery. Anxiety over a diagnosis is bad enough, but this endless waiting is even worse. Hugs.0 -
Thank you Runor. It’s 12 am and just had a freak out moment so I’m back here reading the form. So afraid to take it, but I saw someone say you can just stop and all the se go away. I guess the time to try it is now before I do have to go back to work. I’m non essential.
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