Bottle o Tamoxifen
Comments
-
TaRenne Iron Infusions are soooo boring. I had to do one, thankfully only one and it was the longest day of my life. The nurse made a comment about the food I brought - I am one of those people that needs to eat when hungry or I feel sick and then headaches along with the "hangry". I had packed a lunch and snacks, seeing I was there all day! I was so upset about her comment I never bothered to go back for more infusions.
I have noticed foot/feet issues lately too, just figured it was from my strange foot design or wearing shoes all the time. I may look into the KT tape as well. For me it feels like my toes are being pulled up and back.
Trvler - Thanks for the tip! I do hope that the biotin works for the hair, do keep us posted on this.
0 -
Trvlr- I think you're right about the hot flashes and stretching out on your back in the bed. It allows more cool air to circulate around your body parts as they are more exposed.
Vampeyes-hello! Things have been a bit crazy on my end. That blueberry based memory supplement worked really well for my focus and memory however it had horrendous GI pain to go with it. I had to stop taking it. I'll be going back to the store to pickup a different brand to try. Sounds like you guys are having a fun summer. I'll send you some updates soon!
TARenee and Vampeyes- curcumin can really help with the joint and muscle pain. I'm familiar with the foot pain...I had it on tamoxifen and the other day when I didn't take my pills for 2 days due to tummy upset. Within an hour of taking the curcumin the pain was gone. If you're not already taking it, you may want to give it a whirl. I take the Solgar brand.
0 -
This thread would be better named: Battle o' tamoxifen. Much more fitting.
0 -
TaRenee, was your low iron caused by the tamoxifen or something else?
0 -
Lula - have you tried MCT oil? The local health food store said they have studies showing it has helped with Alzheimer's patients. I am only doing a tsp a day right now, she said you have to work up to the tablespoon as it can give you stomach issues. My naturalpath already has me on curcumin so hopefully it starts working soon, been 3 weeks today I have been on it.
0 -
I haven't, but I'll look intoto it. Thank you!
0 -
So I am currently waiting for my MO to call me back. The last few days I've had the most horrible cramps. I am officially in menopause according to my drs. And bloodwork. Haven't had a period since February of 2017. Not even spotting. I am freaking out.
0 -
Runor, I don’t know what caused it. It could be the Tamoxifen, but nobody has told me that.I have an appt with my MO next week and we do more blood work and I’m sure we will talk about it then. I do feel a LOT better as far as my energy levels are concerned.
0 -
shelabella - I think I have read women seem to hit menopause during chemo treatments, the cramping may be caused by a cyst or fibroid. NotVeryBrave had really bad pelvic pain from a cyst on her ovary. I hope you are feeling better and not in as much pain.
This is getting ridiculous! Last night I started out with 3 Ziploc bags half full of ice and an ice pack to cool me down, once I got my body temperature down I only needed one Ziploc bag and the ice pack! I took my temperature thinking I had to have a fever, nope 35.9, 36. and 36 were the readings (I didn't trust my therometer, lol) How can I feel soooo flipping hot and not have a temperature?
0 -
Is anybody taking medications or some sort of treatment to prevent hair thinning from taking Tamoxifen? I don't want to loose my hair and my scalp has been super itchy since starting this medication 5 days ago. I never have scalp itch.
0 -
Veeder14 - I have seen Biotin recommended for hair loss/thinning.
0 -
Veeder- Biotin helps a lot. You start with 2500 a day and if you don’t see a difference bump up to 5000. I use the Natro brand because I can get all 5000 in just 1 regular size capsule. I judged whether it was making a difference by how much hair ended up on my hands and on the shower drain when I washed my hair.
Vampeyes-it is crazy that we don’t have a temp when we have a hot flash. Probably why so many docs gave a diagnosis of hysteria to women years ago and just brushed us aside. Shoot, we still have docs that brush off our symptoms. Anyway, the reason why there is no increase in temperature is because the hypothalamus incorrectly senses that we are hot and sends a signal to the blood vessels at the surface of our skin to dilate to release heat from our body internally. If we were actually hot, we would cool down some from the process. However since we are not actually hot, we get to feel the heat release on our skin as a whoosh of heat.While our internal temp does not go up, the temp on the surface of our skin can increase by as much as 8 degrees F.
0 -
Veeder14 - I have been taking biotin since I started T in April ‘18. I haven’t noticed a huge amount of hair loss, but it may be too soon to tell.
I have always had an itchy scalp, biotin doesn’t seem to help with that. I just use an itchy scalp shampoo formula from Head & Shoulders once a week to help with that.
0 -
Veeder- yes to the itchy scalp. I switched to extra moisturizing conditioner and it has helped a lot. Plus because my skin, scalp, etc are so dry from the Tamoxifen, my hair also seems to appreciate the extra conditioning
0 -
I never had hot flashes before. I am 54. I started taking Tamo 5 days ago and today, after watching son’s baseball in 90 degrees weather, we stopped to have lunch and my face was bright red withsweat dripping at the table. My son and the waitress were really surprised. I had to go to the bathroom and wash my face. I wonder if this is hot flash or I was just super hot.
0 -
nonomimi- I’d bet it was both. Time will tell thoygh
0 -
After only three months on tamoxifen and noticing changes in my periods which previously had been very heavy but regular (I'm 52 and premenopausal) my periods are now irregular on tamoxifen but I am now on day 20 of this period, with scary heavy bleeding and approximately 900 mL blood loss, hematocrit went from 38 to 27 with all of the usual symptoms of acute anemia. I went in for a transvaginal ultrasound & endometrial Bx last Tuesday. My uterine lining was 15 mm, (and this was after all that bleeding for ~15 days) and she found a 5 cm cyst (surprise!) on my ovary. She did an endometrial biopsy in her office & I should have those results tomorrow ( I always seem to have procedures before a holiday which results in pathology report delays :-() So here is what is frustrating me… My periods are normally very heavy but nothing like this one. Knowing that, why did they not do an ultrasound prior to my tamoxifen to see if my lining was already thick? I have no way of knowing if this is purely tamoxifen related or something that might've been happening anyway. Assuming that the biopsy comes back benign ( please, God) I'm not sure how to proceed. I know that I cannot go through periods like this one again. It was hard to function at work with the cramping and going to the bathroom every 10 minutes to change ultra tampons, or soaking a postpartum sized pad in less than an hour. ( on that delightful subject, have any of you used a menstrual cup? That might be a better option for me to use with pads?) Otherwise, side effects from tamoxifen have not been too bad and I thought I was going to be a superstar! Early headaches and joint painhave gotten much better, and I've had no hot flashes or insomnia. Has anyone else had this experience with super heavy bleeding? Did you end up with a hysterectomy?
0 -
Downnotout- I’ve used a cup before and i liked the concept. The insertion and removal can be a little tricky and messy but i did find i could leave it in longer than a super tampon. I had heavy bleeding before the BC diagnosis and had a mirena IUD put in to deal with it. It worked for years. I went to my OB/GYN complaining of unusual breakthrough bleeding that had suddenly appeared and they did trans-vag ultrasound. Turns out the mirena shifted and i had some lining buildup which she suggested ablation for. I was also due for mammo and that’s where the BC story starts. MO said leave mirena as latest research shows it helps keep lining buildup from tamoxifen low. Fast forward 6weeks, genetic tests show risk for ovarian cancer and tamoxifen gave me blood clots. I had everything removed (tubes, ovaries, uterus, cervix). My only regret was not at least removing the uterus sooner. And the surgery was easy and little to no pain afterward. Fee free to ask questions!
0 -
Hello. I know some people gain weight from Tamo. Do you know the reason behind it? I feel hungry all the time now and I don't know if that's one of the SE. Just started Tamo a week ago.
0 -
I have only been on Tamoxifen since mid-March but no weight gain. In fact, I've lost 6lbs without trying except eating a bit healthier.
0 -
I had that with the generic brand I was on, always hungry, never felt full. Thankfully the name brand Tamoxifen doesn't give me that side effect.
0 -
I have that same hungry feeling all of the time as well since starting T. I told my ONC that I've gained weight since I've started taking it but it's because of the food I've put in my mouth for sure.
0 -
Okay Ladies, So I should probably search the forum first for all my questions, but since we're talking about 953 pages, I'm gonna be lazy and just ask.
I am 52 years old, have a Mirena IUD in place, Stage 1b lobular cancer. Had lumpectomy a couple of weeks ago. Lymph nodes negative. Surgeon said tumor highly estrogen sensitive, like 85% I think.
So, starting me on Tamoxifen. They asked me about whether I was pre or post menopausal at my last visit, but honestly, I don't know. Since I had the Mirena IUD in place, I haven't had a period. And honestly, I haven't really noticed any monthly fluctuations in mood or anything (never had), so I honestly don't know.
So, I asked Surgeon during my last visit, if Medical Oncology would decide if I took Tamoxifen vs the drug for post-menopausal women, and he said they had discussed it at Tumor Board and already decided that I would be on Tamoxifen. I should have asked questions at that point, but honestly, it didn't occur to me. So, now I'm wondering.....what would be their reasons for choosing Tamoxifen without verifying my menopausal status?
My nurse navigator is on vacation this week. I'll give her a call next week.
Also, anybody else a little teary-eyed starting on T?
0 -
Robinj- they haven’t said anything about removing the merena? I am 33 and just started tamoxifen 3 weeks ago. Because of the estrogen positivity of my tumor, I was told under no circumstances I could go on birth control with hormones. I’m getting the copper iud on Wednesday. Do not want to take any chances getting pregnant on this!
Maybe they didn’t check your menopausal status because they’ve assumed you’re ob/gym has since you still have an iud in place? Wish I had more advise on this but at my age my dr and I haven’t really thought about menopause yet.
I did work with a lady who was on tamoxifen for 2.5 years and the switched to something else after menopause hit, so this may be your situation too.
But as far as eye issues, that is probably the only side effect I’ve experienced so far. Dry but watery eyes.
Good luck!
0 -
robinj, i also can't believe that they are allowing you to keep the mirena IUD. I was told only a copper IUD. If I was you I would ask.
I have not gained any weight on T. But then I still have off taste buds. So i do not eat as much
0 -
Been on it since Nov 2015. No weight gain, actually had lost some weight since chemo - but I've more active & changing my eating habits
0 -
Mimi - As you know tamox is an estrogen blocker. Lack of and declining levels of estrogen can cause the body to use starches and blood sugar less effectively, which would increase fat storage and make it harder to lose...especially around the mid section. Hence why we tend to 'barrel' out after menopause. Tamoxifen just adds to the troubles. For me it's like menopause on crack. In youth estrogen is the effective'fat clearing' devise and why it was easier to lose or maintain weight on the same amount of calories. Watching carb intake and cutting sugar, along with exercise is the only solution I've found.
0 -
I really thought I would hear something today but my pathology report still isn't back from my endometrial biopsy done last Tuesday. My bleeding has almost stopped on day 21 of this cycle & I'm feeling so much more energy. I was trying to be cool but I admit that now I really am anxious about the report, but at least I was able to schedule a follow up pelvic ultrasound next month to check the ovarian cyst they found. Patience, grasshopper..
0 -
Mirena, breast cancer, and tamoxifen-
Over the last 15 years or so scientists have been following women to determine if mirena which releases a small amount of levonorgestrel locally in the uterus to prevent pregnancy could also be used safely in women diagnosed with BC who are taking tamoxifen to help reduce lining build up, reduce fibroid growth, and/or reduce risk for uterine cancer. Most MOs or OB/GYNs who are not up on the science and outcomes hear ‘hormone’ and automatically say no with absolutely no research into it. The latest information shows mirena does help keep the lining from building up, helps reduce fibroid growth and helps reduce risk for uterine cancer. Plus the added benefit of birth control. I had already researched it before seeing my MO (OB/GYN said it would need to go). My MO was up on the data and agreed it needed to stay in for these reasons. The reason why this scenario was even considered for study is because only a very very small amount of hormone from mirena makes it to the blood stream and tamoxifen blocks the hormone from entering the cells so we should be good to go without increasing risk of recurrence or new cancer. The studies bore this out. As always, be your own best advocate so you can have an educated interactive discussion with your MO or OB/GYN on the pros and cons of any of the choices we have to make.
https://www.webmd.com/breast-cancer/news/20001116/new-answer-for-tamoxifen-problem
https://www.ncbi.nlm.nih.gov/m/pubmed/29482839/?i=5&from=Mirena%20breast%20cancer
https://www.ncbi.nlm.nih.gov/m/pubmed/26649916/?i=12&from=Mirena%20breast%20cancer
0 -
Today was my first annual appointment with my oncologist. Since I did not have chemo we had limited contact with each other through the initial cancer crap.
Today I told him that I am NOT taking the full 20mg dose because I was never able to find where that dose is the dose I HAVE to take in order for it to be effective. I waited for him to blast me. He blinked a moment and said I was correct, testing on the lowest most effective dose was never done and 20 mg was arrived at as the dose that most women seemed to tolerate without quitting the drug. It was about how patients stuck with the drug but NOT about how much drug they did or did not need to prevent cancer recurrence.
He further said there is evidence now that for the second 5 years on Tamoxifen, taking it intermittently has the same outcome as taking it steadily. In other words, you can be on it for 5 months, off it for 2, back on (etc) and the outcomes are the same as taking it every day for the last 5 years of a 10 year course. He said this method has NOT been tested on recurrence rates in the first 5 years after a diagnosis - but one might extrapolate that if it works for the second 5 year stretch, why not the first? He did not freak out and tell me I was going to die. He said some tamoxifen is better than no tamoxifen.
I also told him that when my vagina dries up and becomes an annoying problem that makes my life miserable, I squirt up some Premarin, which is contraindicated for hormone driven breast cancers - and I waited for him to blast me. He did not. He said the evidence on that points more and more to it NOT be extremely contraindicated. He said it would be a bad idea to use it every day. I said I don't. I have used it one time in the past year. One desperate moment of needing my vagina to back the hell off. He said, pffft, once a year or even 5 times a year, not going to make any difference.
Overall I think it went okay and I feel like I am not committing suicide by taking half a pill most days, and a whole 20mg Sunday and Wednesday. I've got my own little routine worked out - and still having all those glorious side effects, that aren't so 'side'.
0
