Bottle 'o Tamoxifen

Rah2464

I worked for a company that manufactured items that contained active topical ingredients, requiring detailed tracking of exactly how much active ingredient was present in each item. I can imagine the tracking and reporting requirements are even more stringent on anything ingested. There is more than likely some variation of active ingredient distribution vs inert ingredients in a single pill, just based on slight density differences of each ingredient and how they are mixed. I wouldn't think the variation would likely be high, but present to some small degree.

downdog

I also find it incredulous that pharmaceutical companies can guarantee their extruder machines can squirt out precisely a 10mg or 20mg dose consistently on the production line, unless they have uniformity of the product formulation. This means consistent mix throughout. So, maybe not exactly the same precise number of molecules, but pretty darn close. Whatever their quality thresholds are, let's say for example 9.95 to 10.05 mg for 10 mg pills (could even be more rigid than this), there will be stringent quality standards that must be met. What I think is far more likely is that it is extremely difficult to cut a pill in half, so that you end up with two identical halves. When I have cut pills, I have had varying results in terms of evenness. Sometimes close to 50-50 and the odd time as bad as 30-70. You also generally get some powder residue, so cutting may yield two unequal halves totalling less than the original dose.

Veeder14

Rah2464

Do you think that would also apply to medication that is scored down the middle and meant to be split? Just wondering.

Jen2Mom

Hi gals, I am recovering from a very painful ovarian cyst rupture. After an ultrasound,, they found 3 more cysts on my left ovary (all around 4cm) and a 2cm on my right. This is a big change from Jan when I only had one small one on my right side. I've only been on tamoxifen for about 6 weeks. After doing some research, cysts can be a side effect. I'm going back for a recheck in 6 weeks but didnt know if any of you had similar experiences?

Nas

when should we get concerned about the pain in legs??? Well my both knees and ankles are sooooo painful, I am only 39 and I walk like a 80 year old lady, I ama teacher and by the end of school day I can't walk anymore, I get home and just lay down, but pain is just so bad the moment I get up, after few minutes walking getting better though

Is it normal while taking tamoxifen and lupron injection???

runor

Nas, for at least the first year I was on tamox, my joints ached! It was worst in bed at night where every move I made just killed. It hurt to sleep! As you say, it would get better when I got up and got moving. I am happy to report now, about 1.5 years in, the joint pain has stopped. The hot flashes have eased off but not disappeared. The leg cramps ... ooooh mama, the leg cramps! They still get me. Hair is still falling out. My skin is looking older than it should and I am thickening around the middle after initially losing weight. But I think the initial weight loss was stress related to the diagnosis and not anything to do with tamoxifen.

Rah2464

Veeder - sorry I really don't know the answer to your question. Maybe consult a pharmacist on your particular medication.

Via

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

Nas

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 ....

MinuteAtATime

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!

MinuteAtATime

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.

sm627

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

new2bc

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?

runor

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.

new2bc

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?

Spoonie77

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.

petey111

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. :-)

rljes

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.  

BlueGirlRedState

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

mobscene207

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!

rljes

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. 

Rah2464

I get that way right after I freeze, then prickly, then HOT HOT HOT . I call it the shake and bake.

Salamandra

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!

GoKale4320

https://www.drweil.com/vitamins-supplements-herbs/supplements-remedies/is-evening-primrose-oil-safe-after-breast-cancer/

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.

sm627

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

rljes

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) 

Spoonie77

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.

rljes

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.

Spoonie77

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.

Jen2Mom

I have not had a period in 2 months since starting tamoxifen but started spotting today and it is dark brown, is this normal?