Bottle 'o Tamoxifen

DeeRatz

Trvler- I did Accupunture for my hot flashes. I am at the point where they are not bothering me anymore. I still have a bit of problems at night but I am sleeping way better. I have been on Tamoxifen for almost 2 months so it my be my body adjusting to the medication as well. I would have a terrible night the day of my Accupunture. She said it is due to the needling stirrng things up. I would take an Ativan those days to help me sleep

TinyDancer5

Aches, pains, hot flashes and cold chills? Yikes! Is this what I have to look forward to after I begin taking Tamoxifen? Are there anymore side effects that I need to be aware for?

molliefish

Not necessarily TinyDancer, I have been on it for a week or so now, not a single side effect so far. That being said I already have hot flashes from menopause that started two - three years ago. I have had sore feet in the mornings for a couple of years too so I'm going to say that I probably won't notice the Tam at all. :-)

Sloan15

Tinydancer - I haven't had snd SE yet either. I get a few hot flashes a day, but I started having those after radiation/chemo - so not the Tamoxifen.

Trvler

Really the chills and hot flashes are my only thing and they started after chemo and before Tamoxifen. Neither is worse after starting Tamoxifen.

jbokland

The thing about Tam is that SE can kick up at anytime. Months or even years later! Crazy

jbokland

I work for a drug reference company. We provide all evidence-based information to hospital throughout the world. Here is some in depth info provided to clinicians

Tamoxifen Citrate

1) Tamoxifen has been used successfully to treat both pre- and postmenopausal women with all stages of breast cancer. It is used both as a palliative treatment for those with advanced disease, and as adjuvant treatment following surgery for node-negative or -positive disease. As postsurgical adjuvant treatment of early breast cancer, tamoxifen has consistently prolonged disease-free interval with a low incidence of adverse effects. A 20% reduction in 5-year mortality can be realized, with this reduction being most clearly evident in women over 50 years of age [360].

2) Approximately 30 to 40% of women with advanced disease given tamoxifen will have a favorable response (partial or complete remission). If these patients are grouped for analysis based on the estrogen and progesterone receptor (ER and PR) status of their primary tumor, patients with ER+/PR+ disease have a 70 to 80% chance of responding favorably to tamoxifen

MomOfTwins98

Hello

Just reading through the posts as my "therapy" when feeling down or that everything hurts. I stated tamoxifin 7 weeks ago - don't get hot flashes but do get awful chills and then night sweats. I am also on gabapentin for very bad pain in my groin, pubic bone, and down legs. Have had three MRIs and they cannot find out what is happening. They did find a cyst on my right ovary but do not think that is causing the leg pains. I was told by my MO that, once I started tamoxifin, my periods would stop - nope! Started Nov 30 and have had three periods...crazy. Just three weeks apart and light. My ob/gyn is not too concerned but has followed that cyst found on MRI with an ultrasound and have another ultrasound next Saturday - I get so nervous but she wants to watch it so I know she is aware. Just another thing to think about/worry about. I also just finsihed radiation and had to have IMRT as so close to my heart and lungs. My tumor bed was very long and deep and at 6 o'clock but slowly starting to heal - lost all the skin under my breast and quite raw but now doing the Domeboro soaks which does seem to help a bit...think it will just take time. I. too, have lost weight, not gained but may be stress, not tamoxifin. I get so scared of recurrence and every ache and pain but, just read in an older post, someone wrote, "at least I'm alive to bitch" - made me smile as it is so true!

MomOfTwins98

Hi

I found a good way to deal with my nightly chills - I have an electric throw blanket - when I'd put it on me at night, I'd wake up drenched so, now, I put it on under my covers and warm up my bed. Then turn it off and it keeps the bed warm enough for me to fall asleep - Honestly, I dont sleep well and never have but at least i'm not shaking

MomOfTwins98

Does anyone have teeth pain or a weird feeling in teeth? Mine are just sore and so sensitive - never had any issues with my teeth and do not even have a single cavity. My dad is an oral surgeon and he suggested using Sensodyne...has helped a bit but find it so odd that my teeth would be affected. Any advice?

Wendy3

Tinydancer you may be lucky...I have been on tamoxifen for seven months. No side effects at all at present( I need a piece of wood to knock). I take it at eight o'clock every night I make sure of this. If I don't and I take it later I am sometimes a wee bit nauseous in the morning. Not anything terrible eat a banana and it goes away. Menopause is hard with or without tamoxifen. A lot of these "side effects" I think are just part and parcel of getting older hot flashes and cold sweats at night etc. My advice take it at night and excerise everyday. Good luck

Anonymous

Here's a funny little story I thought you ladies might also find humorous: Since finishing rads on 12/15, I was supposed to start my Tamoxifen prescription (which I had filled when first given the prescription back in November), however, I was worried about SE and possible long-term problems, so I kept postponing that first dosage. Finally, I decided that January 1st would be a good start date, and dutifully swallowed my first pill that morning. I then took my second pill the next morning, but noticed that I felt drowsy both days and had difficulty staying awake, so I switched to taking it in the evening. No problems, so I continued this routine for the next 14 days. Wow! I wasn't experiencing any SE except my appetite seemed to increase a little. I saw my oncologist this past Wednesday and when he asked how the Tamoxifen was doing for me, I could honestly tell him "no problems, except being a little bit more hungry". Fast forward to this evening. I had bought some supplements at CVS and was refilling my pill container when my DH reached into the back of the cabinet, pulled out a stapled prescription package and asked "What's this?" as he proceeded to open the package. Guess what??? TAMOXIFEN! I then grabbed the "other" prescription bottle that I had been faithfully popping pills from since January 1 and looked at the label: Meclizine, the anti-nausea medicine I had been given for surgery that I never really needed or used much! Drowsiness explained! After the initial shock, I had to laugh at myself. My DH has been telling me since this BC scare that I haven't been thinking clearly. Obviously, he is correct. I guess the moral of this story is this: read the label!!

queenmomcat

ElishebaJoy: (bursts out laughing, though entirely sympathetic) Yes, that's absolutely something I can see myself doing. But no wonder your appetite improved a bit!

sailorbev

Hello everyone--I have been taking Tamoxifen for 4 months with what I consider to be very minor side effects. Something odd has happened recently which I think might be related to the Tamoxifen but I wanted to see if any of you can relate. In the past 3 weeks I sustained 2 really minor burns by briefly touching a hot oven rack with an arm and then, a week later, a hand. The burns were initially VERY minor but looked worse every day even though I took good care of them. They are taking forever to heal. I have never had problems like this in my life. I am not diabetic and recently had blood tests that were normal. 

I found a scientific article online that suggests Tamoxifen slows wound healing. Does anyone else have experience with this?

molliefish

LOL Elishebajoy

Suzanne50

That is funny Elishebajoy!

I vaguely recall that my MO told me that tamoxifen would decrease my chances of recurrence by 30%? He is very into statistics. Chemo and radiation were far less. So this is the biggest preventer for me.

Lolis197138

momoftwins, I had the same problem with the teeth. They sensitive and the gums would easily bleed. That went away. It didn't last too long. I used water and salt rinses that switched to toothpaste with no flouride.

Re the slow healing, I have noticed that it takes a bit longer now for bruisers to go away. So it can totally be because of the tamoxifen.

keepwalking

Sloan - Thanks for the caffeine news! Nice to know there is something I indulge in that I don't have to feel guilty about! I wonder if I should increase from my 1 cup of coffee to 2

solfeo - Thanks for the links to info on alcohol and tam! I only have about 1 glass of wine a week but good to know that it might not be bad for me.

ElishebaJoy - I'm with you on the not quite thinking straight these days. At least we can laugh at ourselves I am glad that mine comes in a box that is clearly labeled

I'm 6 days back on and so far so good. I had one day of feeling sort of like cramps, but that passed. The only other thing is some bouts of dizzyness, but it is hard to figure if that is the tam, radiation or a combination.

ksusan

Tamoxifen can cause vertigo.

MarieBernice6234

Trouble with Tamoxifen

Hi, All -

Has anyone here experienced any difficulty with the Tamoxifen they were taking? I have been taking it for about one year, when I had a follow-up visit with my Medical Oncologist. Yes, I had the initial symptoms when first taking it, which did dissipate over time. What I hadn't completely realize was what it was starting to do to me emotionally. It had gotten to the point that I began to feel completely alone in the world and didn't have any way to relate to the changes that happen with menopause. For other reasons, unrelated to the BC, I was never able to have a period or children. So take all that and add the emotional impact of cancer and treatment, including being pushed into menopause. It was all more than I could take. I just muddled through it, I thought because the Tamoxifen was supposed to help me. I tried to talk with other women, who should have been able to relate to menopause but still felt all alone when they couldn't.

Well, talking to my MO and the "emotional dam" broke, and together we decided to put me on a Tamoxifen holiday until March 1st. rethink the game plan and perhaps re-start Tamoxifen or start on Anastrozole. She really understood and said that Tamoxifen can do some really "wacky' things to women. This is only Day 2 of the holiday. Let's see how it goes.

MarieBernice6234

jbokland

Marie. You've come to the right thread.

I'm so sorry you feel alone. Truth is you are in very good company! Too many of us going through the same things! It's the 'insult to injury' factor and it just sucks

However, it is what it is for us

I understand many women take Effexor in addition to the Tam to help even things out.

MarieBernice6234

jbokland - Yes I am on Effexor 187.5mg, Depakote Sprinkles which is a mood stabilizer.The extra 37.5 of Effexor was just recently added, within the last two months.

MarieBernice6234

FastWalker

I noticed my teeth have been bothering me on and off to the point where chewing soft food hurts at times -- so I did a google search "tamoxifen and teeth." And lo and behold, it says Tamoxifen can cause problems to your teeth and gums: "Dental hygienists reported increased gingival inflammation, gingival bleeding, periodontal pocketing, xerostomia and burning tissues in patients" (As well as cavities.) This article advises careful monitoring of oral health:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC407503...

The article above also mentions that Tamoxifen can cause osteoporosis in pre-menopausal women, which my medical oncologist refutes.

FastWalker

Memory problems can also be attributed to Tamoxifen. "The researchers were able to isolate the cells in the human brain and nervous system that are harmed by tamoxifen therapy."

http://www.webmd.com/breast-cancer/news/20130917/t...

Gee, I wonder what else Tamoxifen does?

ORgal

Anyone else have this? I've been on Tamoxifen for 6 months. Saturday I woke up and went downstairs, got up and down a few times then sat for 10 or 15 minutes. When I stood up, my knee was in pain to walk, bend, etc. and has been in pain ever since. It is getting better, but it just came from nowhere. I was almost nauseous from the pain on Saturday when walking. I can poke and prod it with my fingers and hands while seated and feel no pain at all, only hurts when using it (or bending or twisting it). I'm wondering if it's an example of joint pain from Tamoxifen.

solfeo

My oral thrush or whatever it was went away after a day of rinsing with warm salt water, so my immune system must not be totally shot. I guess I'll never be able to figure out what triggered it. Hopefully it was a one time thing

ORgal - I have joint pain in my knees and nowhere else. I injured my knees a couple of years ago and the pain lasted a long time but was finally gone before I started the tam. It feels like an aggravation of the old injury with tamoxifen as the underlying cause. It comes and goes now.

colleen1013

I also have a knee pain (only on the left) suddenly appeared two months ago, I didn't injure my knee, also cannot find any swollen part, sometimes it gets better but may turn worse the next day, I cannot bend or twist my left knee, it is strange that it only happen in one knee, I am really upset not able to enjoy my daily walking

TinyDancer5

I took my first Tamoxifen pill this morning after breakfast. I will look out for any of the side effects you all experienced, and keep you posted. Thanks

CidneyI

I have been on Tamo since Dec 2014. My biggest complaints about the se from Tamo is 1) hot flashes and my oncologist put me on Effexor. 2) I have gained weight and down to three pairs of pants I can wear. 4) Memory problems, 5) eye issues and a few other bothersome things I can deal with.

This Jan, I decided to take control of my life - well, as much as I can.

I started getting off of Effexor mid Dec and has taken about a month to get off that drug. I would say I am about 98% back to feeling my old self pre Effexor. I would rather deal with the hot flashes than feeling high and not myself all day long. I will never take Effexor again.

On Dec 28th and 29th, I went to a wellness dr and a dietician. I am on a very healthy detox diet for the next 30 days and check in every Monday for accountability. I have lost 8 lbs in just a little over 2 weeks. I am very excited about this. I have to say, I haven't felt this good in over a year. My energy levels are really high, I have started walking/running again. I feel great!

I wish my oncologist would have suggested seeing a wellness dr and dietician. in the beginning, I feel like the oncologist just listen to you, write a prescription and send you out the door. I hated how I ended up on so many other drugs to offset the se from Tamo.

ORgal

Thanks solfeo and colleen for sharing your experiences with knee pain. It's good to know I'm not alone. I'm really frustrated. I am not an athlete, but I had done two triathlons and a couple long bike rides in recent years (much to the surprise of my family and friends - mostly to have a goal for keeping in shape). I had planned to do both again last year and feel like cancer robbed that from me. So, as kinda my own personal victory over cancer, I'm trying to be able to do them this year, and then wham! my knee hurts. I hadn't even done any work out for a couple days prior. I can almost walk normal today and am hoping to get back to trying to run or cycle. Hopefully it doesn't linger forever. Everyone says exercise is one of the best ways to prevent cancer or reocurrence, but then our treatment gives us side effects to hold us back - UGH!!!!