Bottle o Tamoxifen
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Veeder - sorry I really don't know the answer to your question. Maybe consult a pharmacist on your particular medication.
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i started it about 2 month ago and so far so good! I have gotten some hot flashes but other than that it has been wonderful as of now.
Vi
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runor,
Thanks fr answering, mine could be related to my extra 30 pounds that I put since taking tamoxifen, I tried calorie counting few times but surprisingly still put weight, my nutritionist told me I need cardio style exercises for burning fat, but my knees and legs don't help me, who these things are just so frustrating ....
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BlueGirl: I have had ups and downs with side effects including sleep problems, joint pain (which has subsided), hot flashes, leg and foot cramps (which Magnesium helps). I think when I moved from Denver to CO it may have coincided with a change in the manufacturer of my Tamox pills due to different pharmacies/doctors but I also wondered if the elevation was a factor in the joint pain--or maybe that's a crazy hypothesis. The problem that bothers me the most is vaginal dryness/atrophy and is ongoing, plus ovarian cysts and thickening uterine lining. These latter issues scare me, but my docs have reassured me that they are not concerned and will keep monitoring.
Jen2Mom: Sorry to hear about your painful ovarian cyst rupture! I have had ovarian cysts come and go since being on Tamoxifen and it does make me nervous. I have also read it is a side effect. I have considered having my left ovary removed b/c that's where they usually happen. So far they haven't been painful, thankfully. i would definitely talk with your docs about the issue and see what they say. You might also want to do a search on this site for ovarian cysts to find out about other people's experiences.
Someone also asked about thinning hair. I lose lots of hair every time I wash it, but fortunely my hair is very thick (and coarse) so I don't mind losing a little bit. My hairdresser did mention that castor oil applied to the hair/scalp can thicken your hair, so that might be an option for people. But it takes a bit to wash it out!
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Pamela23: I just read your post! Thanks for sharing--I actually recently saw that ACOG article and my Ob-Gyn said she would give me the low-dose cream. I think I will give a try a few times. I've tried Replens and Vmagic and still have too much pain for intercourse, so I need to do something about it. Maybe I'll reassure myself by taking Tamoxifen more than 5 years --if I can just solve that problem it might be worth all the other side effects to take it another 5 years. I'm about 1.5 years in so far. Thanks again.
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Hi All,
Thank you MinuteAtATime and Lezza13 for you advice and support I appreciate it so much.
Lezza13 I hope something can be done to help with our hot flashes?
Minuteatatime: have you started the cream I hope it helps.
I have a little update I went to see my primary doc and a new GYN. Primary did blood work and found out that my iron levels are still low even after being on iron supplements for a month the good news is that my iron went up from 6 to 23. I need to continue the iron supplements for another 2 months then go back for more blood work in September. The new GYN that I saw said that Tamoxifen could be the reason why my periods are so heavy because of the added estrogen to the uterus and ovaries. (My MO said that heavy periods was not caused by T) Make me wonder who to believe! Gyn and my primary doc have agreed to put me on Naproxen during my periods to help reduce the heavy bleeding. Hope it helps get my iron levels up too. Thanks Tamoxifen :-(
My Gyn has suggested I try acupuncture to reduce my pelvic pain that Tamoxifen has given me. Has anyone tried acupuncture has it helped reduce pain? I am willing to give it a try if it mean I don't have to take another drug.
So I was having a really rough week with Tamoxifen and at my job too. I sent my MO an e-mail bitching about Tamoxifen and how horrible I felt. She wrote back and asked if I wanted to stop taking it. I told her I wanted to keep taking it and that I was just feeling so horrible when I wrote her the letter. It felt good to vent and tell her everything I thought and felt.
How is everyone doing and does anyone else need to vent!
Hugs to all
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Hi everyone,
I took Tamoxifen for 5 1/2 years. Then I took a break from it for 3 months. Now I am back taking it but I cut some pills in half to make it 10 mg and then cut them again to make it 5 mg. The cut for 5 mg is harder to do. So I alternate taking Tamoxifen between 10 mg and 5 mg. So one night I take 10 mg and then the next night I take 5 mg and repeat . I am wondering if anyone here is still taking Tamoxifen after the 5 years is over. Any ideas if I should consider stopping the pill. Is there a 5 mg Tamoxifen? and does Tamoxifen get equally divided as far as dosage of I manually cut it?
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New2bc, may I ask why you are continuing to take tamoxifen past the 5 1/2 year mark? Have you been advised by your doctors to take it for 10 years? Or is this a personal decision?
I take 10mg a day , taking a full 20 mg dose every Wednesday and Sunday. (I have to use one of those pill box things to keep it all straight). My oncologist does not endorse this approach, but he also said there is no evidence saying that 20 mg is the dose anyone HAS to take. He says some tamoxifen is better than no tamoxifen. So this is what I have been doing. Splitting pills.
I am wondering how I will feel going completely off tamoxifen. I struggled like hell with the idea of taking it. I deal with the side effects. BUt I wonder how vulnerable and like a sitting duck I"ll feel when I take nothing. I feel like a sitting duck now!! I think, after 5 years, if my oncologist will continue to prescribe tamoxifen, I would feel some reassurance taking 10 mg on Sunday and 10mg on Wednesday and no pills any other time. From what I understand, tamoxifen hangs around in your body for quite a few days (I've heard varying reports of how long) and taking 10 mg every few days should keep levels bumped up? I think. Thats' my theory anyway. At this point this is the thought rolling around in my head. That might change.
sm627, I wonder sometimes about how much our MOs know about the drugs they prescribe? Yours says the tamoxifen is NOT responsible for your heavy periods. Yet here you are, having bad periods. I asked my onc if tamoxifen would affect my periods and he said no. Well, WRONG! I have not had a single period since I started tamoxifen. Nothing. Not a spot or smudge, nada. So... maybe there's not way to tell what tamoxifen will do to anyone. Seems to be a bit of a crap shoot.
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Runor,
I was diagnosed with IDC back in 2012. My oncologist did not advise me to take it past 5 years but indicated that it reduces the chance of recurrence by a few points. After quitting for 3 months, every little pain worried me that cancer is back. So I decided to take a lower dose in the routine I described above. I think taking a 10 mg pill every other day is easier than cutting one pill twice to try to get 5 mg. Is anyone here taking the pill past 5 years?
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SM627 -> In regards to your question on Acupuncture....My LE PT referred me to Acupuncture to help with my Breast LE, Fibrosis, and Rib Dysfunction caused by RADs. I was in so much pain & tons of SEs before going to see her. After just the first treatment I felt relief, granted it lasted for a short time (a few hours) in the beginning. Now 10 treatments later (they are weekly visits) I get relief that lasts for days. It doesn't take away all of the pain of course but it sure helps make it more manageable, plus it's helped with my sleep, my migraines, nausea, hot flashes from the Tamoxifen, and so much more. I would highly recommend giving it a try.
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Anyone get itchy/prickly when they get hot? Every time I get hot - indoors or out - my back gets all prickly and itchy. When I cool down, it goes away. I blame everything weird in my body these days on the tamoxifen. Just wondering if anyone else experiences this. Google searches aren't really turning up anything for me. :-)
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HOT FLASHES - I can't take it anymore. Yes, to Petey, I get hot prickly rashes when the hot flash comes. They come with a vengeance. About every hour I have to strip, now I'm wet and cold, re-dress /Hotflash, strip, REPEAT. Its a full time job. I mean no disrespect to all who went thru everything to beat cancer - but I'm at the point I can't take the hot flashes anymore and I am thinking about taking my Hormone Pills again just to have one month of relief. My MO said there is nothing that can relieve hot flashes. Live with it. I have stopped Tamoxifen since April 10th. I take Magnesium. (I had Hot Flashes way before Tamoxifen, but never this intense)
I can't go anywhere because I'm drenched - and can't strip in the middle of the grocery store. I feel like I'm going to pass out. Thx for letting me vent.
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runor - tamoxifen or no tamoxifen and how much, does it really do any good? Sometimes I feel like it is the only thing that can be oferred, with so many unknowns. I did take tamoxifen for 5 years the first time. 7 years after the first diagnosis, a "new" cancer, same breast. Whether it was a new cancer or a recurrence, is unknown. The oncologist thought it was probably a new one, given the time period. Then again, with a dense lumpy breast, maybe it just went undiagnosed. I quit the AIs I was given the second time do to immediate stiffening of fingers and trigger finger. I considered taking the brand name AI, even got an Rx and first delivery, but since I was feeling better after not taking anything, I did not take it. After a few months I got worried, and asked my oncologist about taking tamoxifen, which I now take, 20 mg. I took a 3 week break recently after going through many sleepless nights ( I would wake up tense, agitated, and not able to get back to sleep). Initially I blamed the sleeplessness on a change in the BP generic I was taking. The problems happened immediately with that change, and BP also went up slightly , and sometimes was over 130. (It used to be 115/65). The generic BP I was taking has not been available for months, and a brand name is prohibitively expensive ($193/month). BP came down a little, I just restarted tamoxifen 2 days ago, so far, so good. Only problem I had with it before were occasional very painful leg cramps. Magnesium glycinate, potassium, and hydration seem to keep that at bay. I take a number of supplements, both the oncologist and primary advise getting as much as possible from food, thinking it is better absorbed. Friends tell me that their DRs often describe supplements as expensive pee.
Exercise very regularly, if not at the gym, then walk/hike, weights, stretch, swim, x-country ski etc
2009 ER+ left breast. 52 yrs. Lumpectomy, Sentinel node removal, negative. – 1. 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
10/2018 noticed stiffness and some trigger finger again. Was eating meat a lot more (daily) than normal. Usually 1-2 /wk. Have cut way back on the meat, seems to help, but one finger still very prone to trigger finger. 2/2019, trigger finger and stiffness much better.
Supplements: GAIA turmeric-joint; glucosamine-chondroitin; magnesium glycinate; biotin; potassium-iodine; low dose calcium; C; B-complex ; D; Fish oil (but not now). For a year or so after bi-lateral used Juven Nutritional therapy for wound healing with 7g arginine, 7g glutamine for about a year. Often add turmeric to meals. Ran out of fish oil supplement that I liked, other brand caused fish burps, so have not taken for a while
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rljes,
I feel your pain! My hot flashes got so bad, they were triggering my migraines, which are triggered by lack of sleep. My onc recommended trying acupuncture. I was skeptical, but I have to say, it has helped immensely. Feels like someone turned down my internal thermostat. Our local cancer center offers a course of treatments to cancer patients for free, which I have taken advantage of. When those tun out, I plan to continue. My insurance covers it, but there's a $50/co-pay. Worth it, for me!
I hope you find some relief!
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Thx mobscene, I called my chiro to see if she has an acupuncture treatment specifically for HOT flashes. They will call back. They don't bill insurance, but along with a chiro adjustment, they charge $30 (My insurance pays for all chiro adjustments) I'll do /pay ANYTHING for relief. ! Thx for the suggestion.
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I get that way right after I freeze, then prickly, then HOT HOT HOT . I call it the shake and bake.
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Hey Rjles,
My understanding is that it is NOT true that there is nothing that can be done about hot flashes. My psychiatrist from the cancer treatment center mentioned Effexor and gabapentin as possibly useful, and it sounded like there were others as well.
For me, hot flashes aren't a major side effect - but I was having terrible fatigue. Based on this board, I learned that different women have different side effect profiles with different brands of tamoxifen. There is research bearing this out. My MO also approved me trying different brands until I find one that hopefully has less side effects. I'm on my 3rd brand now. It's only been 3 days but I think it's a little better than the other two. I just have to call my pharmacy and ask for a different one to be sent. As long as I have refills left, I don't even need a new prescription.
I feel that some medical practitioners are too lackadaisical about the side effects that impact our quality of life. I hope you can get some relief!
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I used to take Evening Primrose Oil and it seemed to help with hot flashes. The link above discusses whether it is safe to take with Tamoxifen, and it says yes, it's safe. There were several other articles that popped up when I did the search saying it's safe.
Regarding muscle cramps at night. I don't know if this is a new idea or not, but light stretching before bed might help. My husband is a runner and is plagued with cramps at night despite ample water during the day. He started stretching his calves and feet for several minutes before bed for the past week and has not experienced any muscle cramps during the night since.
As far as weight goes, I started time-restricted eating over a year ago and went plant-based last summer, and I have dropped 10 lbs and kept it off. The "Forks Over Knives" film on Netflix describes the benefits of plant-based eating (and there are several facebook pages for FOK). I ate rather healthy before, but going plant-based has really helped me so much. There are certain foods I thought I could never give up (cheese, eggs, greek yogurt), but there are so many foods in the diet that are so tasty that I am okay without those things.
Anyway, I just wanted to throw those ideas out there in case it might help someone.
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Thank you Runor and Spoonie77
Runor: I always enjoy reading your posts you either make me laugh or I get some great straight no nonsense talk/advice from you. :-)
Spoonie77: Thank you for sharing your experience acupuncture. What is the overall experience like do you feel the needles and how long is each section? When you are done what feeling do you get?
Thank you! I am willing to try anything that isn't another pill to help manage Tamoxifen.
Sending Hugs to all
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Hi all - thx everyone for input of Hot Flashes.
Salamandra- I have tried Effexor and gabapentin before cancer for my auto-immune diseases, and couldn't take them. Too many SE's. gab made my skin crawl, and Effexor felt like a bottle of Nyquil. thanks - It might be worth it to try again.
GoKale - I'll try the Evening Primrose Oil. Some suggest Turimac (?) and I'm already taking Magnesium. Fortunately I have no leg cramps. Just SEVere fatigue & Hot Flashes. Thx for the suggestion and interesting about the plant based diet. (I love baked Kale)
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SM627 - > Glad to be able to share something that wasn't another pill, I SOOO know how that goes!
"Spoonie77: Thank you for sharing your experience acupuncture. What is the overall experience like do you feel the needles and how long is each section? When you are done what feeling do you get?"
I went in once a week for 6 weeks in the beginning. Now I go once every 2 weeks. My acupuncturist likens the process the Chriopractor, where at first you need routine visits and then once the body gets back in sync, you can start spacing out the visits. Made sense to me and this has been the pattern for me most definitely.As far as the needles, I can rarely feel them. You don't bleed when they are removed, or if you do it's a very tiny drop of blood.
She puts all of my needles (about 45 per session - but she is treating many issues and dx for me, ie migraines, sleep, nausea, lymphedema, hot flashes, etc) in over about 10-15 mins and the I "rest" in the room for about 30 mins. It's a great time to meditate or just "be" and decompress. The needles are in different areas all over my body. Some on feet/ankles, some in ears, some between eyebrows or on top of the skull, or around the hands/wrists and elbows. Their placement mainly depends on what the treatment goal is.
Just after a few minutes in I can feel certain changes already happening in my pain levels, headaches, joint pains, etc. By the end of the session, I sort of feel "normal" again. It's wonderful. Less pain, less stress, less of everything. In the beginning the relief was less than it is now in duration. Meaning, those first sessions only gave me a few hours of relief and then it began incrementally fading out. Now I feel as though that feeling lasts mosts of that day, and my pain/symptoms are definitely less bothersome over the next few days. My hot flashes are now non-exsistent, as are my migraines. I went from having about 10 a week (HFs) and 4-5 (Migraines) a month, to 0 and 1 or 2 respectively. It's amazing to me. I've suffered horrible migraines for years and nothing has helped until now.
I'm guessing how everyone feels at the end of or during a session would be different. My experience may not be someone else's, but I tell you I could not have gotten through the rough parts of the after effects of RADs without it. It's given me so much of my range of motion back that RADs took away.
Anyway, if I were looking for an Acupuncturist, I definitely would not just pull a name randomly off of the internet. I would ask around within my cancer care team to see what names they could give me. Thankfully my LE PT had a few I could choose from.
If there's more you would like to know, feel free. I'm happy to share. Hope this gives you a good idea in general.
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Hey Spoonie - I wish your chiro could contact my chiro and explain how to use acupuncture for Hot Flashes. I called and asked my chiro (who does acu) and she said she has no way of helping with hot flashes. Huh! I used to go to another acupuncture in another state and went regularly, and never found relief. My body is just strange - because I know it works for a lot of people! Glad it works for you.
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RLJes -- I guess it could have something to do with your provider being a chiro and a acupuncturist? Mine is not a chiro.
IDK.
It may be helpful, so here are the qualifications/degrees/certifications that my provider has.
Is there anyone you can contact to help you find one that is familiar with acupuncture for cancer support? Try asking your Oncologist or your Physical Therapist.
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I have not had a period in 2 months since starting tamoxifen but started spotting today and it is dark brown, is this normal?
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Hi Spoonie77,
Thank you so much for sharing so much about what your experience has been like. I am so glad it has helped reduces so many of the pain you have been having. I hope it works the same for me it would be so nice to feel like a "normal ish" person again :-)
Since you have been doing acupuncture for a while now have you been able to get through a week with less pain before your next section? If you do get little blood spots from the needles do they heal up quickly like with in a day or two? I know that everyone has different health care plans but is your copay low?
Thanks for your help I appreciate it very much.
I hope you have a good week.
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Jen2mom I've only been on Tamoxifen for close to 7 weeks. My first cycle was normal, but I had only been on it for 2 weeks. My second came a few days late and it started off more brown but the next day was pretty normal. We will see what this next cycle brings if anything.
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Went to MO today and now have an Rx for 10mg...plan to start every other day at 5mg for two weeks and see how the SEs go, then maybe 5 everyday...yikes! Had to stop Arimidex after 3 years due to horrible side effects...having had a 2.5 month rest, I am not looking forward to this, but feel I am a much better consumer than I was in 2016. Starting slow and if the SEs become too much, I'll stop.
Happy Monday to all. TT
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Rah2464 That was funny. Thanks for putting humor with hot flashes. It's miserable being the only person in a room that is hot!
TrmTab It's interesting you are on only 10 mg. I have been on 20 mg for almost 6 years now. I would never try Armidex even if I am in menopause because of the SEs. I am going to ask my onc if I can either cut mine in half or change brands like lots of women on this thread have done. Lots of questions to ask at my next visit.
rljes. I have used acupuncture for my hip bursitis and it has really helped. I am going to ask about hot flashes. I don't go through insurance. I get a discount with a Groupon. I do that because my deductible is way too high to use a chiro that way. Best of luck.
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Lezza, the thing about asking your ocn if you can go on half a dose is the answer YES or NO is going to be based on what kind of rule follower your onc is.
I am pretty convinced that there is no hard evidence anywhere that says we HAVE to take 20mg or the drug won't work. I looked everywhere for the information that said tamoxifen was given at different dosages and it was found that 20mg was needed to keep recurrence away. I invite you and anyone else to look for that information. It does not seem to be out there. What I did find was multiple references, short, fleeting and almost as an aside, that when this drug first was given to women in 60mg and 40 mg doses, they quit taking it. They felt so incredibly lousy that they said to hell with this shit and refused the tamoxifen. At 60 and 40mg there was an extremely high non-compliance rate so they lowered it to 20 in an attempt to get women to stay on the drug. But this IN NO WAY is the same as saying 20mg a day is the lowest effective dose. Those two things aren't even close to being the same thing!
Your onc is likely to tell you that you have to take the full 20mg dose. If he's a rule follower and a by-the-booker, that's what he's going to do. He has no evidence saying that 10mg is better or safer or just as effective. But he also has no evidence saying that it MUST be 20mg or it won't work. All he has is This Is The Way We've Always Done It and This Is What The Book Says To Do - so that's what we'll do.
I take 10mg on Monday, Tuesday, Thursday, Friday and Saturday. On Wednesday and Sunday I take a regular 20mg tab. This is not based on my onc's blessing. This is based on me not wanting to feel so lousy that I quit altogether. This was based on looking over this site and seeing that women who took tamox for 5 years or more could still get a recurrence (mets) and realizing that there was no guarantee with this disease. You can do everything right, you can have a really good prognosis, you can follow all the rules, take all the treatments and get cancer again anyway. So. I went rogue. I did the reading, I came to a life decision based on what I was and was not willing to do. I fully accept that if I get mets someone is going to point and say it's because I didn't take the full 20mg dose everyday. But of course that will be pure speculation and bullshit because NO ONE KNOWS how much tamoxifen anyone needs to keep a recurrence away. COnsidering that effective treatment dose is a mystery, but side effects are a reality, I made the decision to go with half a dose most of the time and hopefully not have many side effects. I have had a LOT of side effects, some of them quite miserable. BUt I am still taking the tamox and hope to continue until 2021.
Your oncologist's reply will depend on if he/ she is a rule follower or not. But he/she has been left unguided by a lack of research into effective dosage levels of tamoxifen.
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I am far from an expert on this but in my researching over the past two months of being off Arimidex and before starting Tamox...this is what I found...
First, the pill comes in both 10 and 20 sizes...which makes me think some folks do take 10 from their Drs orders or perhaps split it as an a.m. and p.m.
Second, there are many studies of 10 vs 20, that have made lower doses acceptable, especially for someone like myself, with DCIS -- so an noninvasive/low grade diagnosis.
Third, most recently (Dec 2018 San Antonio BC Symposium) new research looking at 5mg levels for folks with DCIS were released....Wow, 5 and not 20...that is huge.
My Dr is too cautious to approve 5, but was totally okay with 10 based on the research that has been done over the past 5+ years.
Also, while not scientific, I think this pill follows many of the characteristics that birth control has...when first released in the 60's, the pill were 3-4 times the dosage of current birth control. When tamox was first released it was at 60 then 40 then 20..now 10 and perhaps 5...
There is no 5 pill, so I will have to cut them, but that is how they did the trial with using just 5. TT
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