Bottle o Tamoxifen
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Yeah, Bonnie!
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Yeahhhhhh, Bonnie!
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Ok, I have a couple of questions, first a little back ground-when I was diagnosed in Aug I was on birth control and stayed on it until three days before my surgery in Sept. (13th) (went on a cruise the week before surgery) the day of the surgery I was on my cycle. Had the surgery, blood pressure dropped (I have high blood pressure and was removed from meds until it went back up), then started my first of four rounds of chemo on Nov 9th, last one Jan 9th, started Tamoxifen on Jan 28th stopped Mar 1st (had stage 2 surgery) went back on Tamoxifen on Mar 20th now since that cycle on 9-13-2011 I have yet to have another cycle, is that normal??? I go back to my OB/GYN in Aug I was just wondering if anybody else had experienced this. Secondly after the chemo everything started growing back, hair on head, legs, underarms, eyebrows and eye lashes, now I've noticed that my eyebrow's and eyelash's are getting thin again, what's up with that??????
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Sherry ~ Welcome! I think with all you have been through and the chemo can do that. I know when I started Tamox I stayed pretty much on schedule for the 1st year and then after a whole year I started with the irregularities and then nothing at all for 3- months at a time to then get it back again. I do know alot of other women here have experienced no periods pretty much immediately and I am sure someone will chime in.....
Bonnie ~ CONGRATS!!!! party time for Bonnie Paula.....
Ann ~ I think any doctors appt would be a concern for worry, but we will all be there with you in your pocket and praying for good news only. Welcome back and good news on the checkup.
Nibana ~ welcome and good luck and praying that you will have no SE and if you do someone here will help you get through them.
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Sherry ~ Welcome! I think with all you have been through and the chemo can do that. I know when I started Tamox I stayed pretty much on schedule for the 1st year and then after a whole year I started with the irregularities and then nothing at all for 3- months at a time to then get it back again. I do know alot of other women here have experienced no periods pretty much immediately and I am sure someone will chime in.....
Bonnie ~ CONGRATS!!!! party time for Bonnie Paula.....
Ann ~ I think any doctors appt would be a concern for worry, but we will all be there with you in your pocket and praying for good news only. Welcome back and good news on the checkup.
Nibana ~ welcome and good luck and praying that you will have no SE and if you do someone here will help you get through them.
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mstrouble chemo took my cycle and that was in feb, 2011. I haven't had one since. When my sissy went threw chemo the first time, she said it took her about 5 months and it came back. She was 30 at the time, so I don't know if that makes a difference. I'm in my mid 40's so chances are I may never get it back, I could be wrong though. I was like you and started to get my hair back but my lashes and brows did that funky thing too. It does change so hold on. I've also seen other gals say the same happened to them.
Ann yahoo!!!
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Thanks ladies, sometimes I just think geeze seriously come on, then I read I'm not the only one. Glad I found this site.
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I talked to my MO's office today to see if I should stop Tamox before trip to Ireland since flight is about 10 hours. He said it would probably be a good idea and said to stop about 3 to 4 weeks before the trip so the end of August I will be getting about a 5 week break. It will be interesting to see if my sleep improves.
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peg...I am just coming off a 6 week break from my tamox and yes, my sleep was so much better when I wasn't having leg and feet cramps, night sweats and body aches. They did not go away completely, but enough that I did get some good rest every now again. Today is my first day back on and so we'll see how it goes.
Have fun on your trip!
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Hi all,
I just had my 6 month mammogram. It was a huge stressor. They took two pics, then needed another one because they saw something else. All in all, it turned out to be nothing, but for 5 minutes, I was barely breathing. I heard myself saying "I can't go through this again". Luckily, at this point I don't have to.
I've been battling with myself whether or not to take tamoxifin. After my 5 minute scare, I can't wait anymore. I have to take it if it will decrease the risks of recurrance.
The side effects that scare me are:
weight gain (I'm not happy with the weight I am, much less gain more because of medication)
joint pain (I have joint pain already due to Rheumatoid Arthritis. I'm not sure I can handle more pain)
Hot flashes (Kill me now. I can't stand being hot. I prefer winter over summer)
uterine cancer (my mom had uterine cancer and I have an overactive uterous already).
I'm not happy. My anxiety level is high. However, the fear of a recurrance is quickly coming to the top of the list.
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Hi lifechanging and welcome!!! I was really scared to take the Tammo as well. I know lots of us are and thats normal. I know that the more I read about it compared to the other meds, the SE are pretty close to each other. I was more scared of it coming back somewhere else in my that I knew I just had to take it. I know that with all of the meds out there, the SE really freak the crap outa me, but I know that BC really scared the crap outa me more. I do however make for sure that I moniter my other lady parts better since I take the Tammo, so if there are any problems that they will be caught early. I still struggle with the SE but I just take them one day at a time. I cant let them have anymore control over me like they did in the past so I just keep on keeping on. If it did make things worse for me, then I would stop taking it, but for now I'm ok. Hang in there!
Well ladies have a fun filled day and love and light to you all!! Love ya my Sistas!
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Good morning ladies. Well I have had lower back pain x5 days, of course I am turnign thoughts towards the dark side. I hope it is just the tamoxifen. My radiation onc got me an appt for a bone scan, going today at 10:30am. Sigh..... Good thoughts, good thoughts.....
Have a great day everyone!!
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peg I took a 6 week break when I had surgery and I slept so good when I was off tamox. As soon as I started back on it my sleep was effected again. Have fun on your trip and enjoy your tamox break
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Tink - Glad that your appointment went well. The pocket party was so much fun!
Chachamom - My hair started thinning the second week I was taking Tami. About double to triple the amount of hair was falling out. Sure freaked me out, since I have always had thick hair. It also fell out for about a month after my surgery. I went to the natural pharmacy and they suggested BioSil drops. Its supposed to help with hair, skin, nails, bones and joints. I noticed a difference in hairloss within a week of taking it. Since I get low back pain, I thought this could help as well. Also, my nails have been looking really good with less splitting and breakage.
Peg - So glad you wondered about stopping Tami before your trip. I am off to visit DB family across the country and wondered if I should stay off Tami during the whole trip or just before each flight. Maybe I'll take a Tami vacation while I am away.
Monst3 - I too have been feeling like its hard to concentrate on things sometimes. I know for sure its the Tami in my case because I've always had a good memory and since being on Tami, I forget things that I would normally not forget.
As for having periods on Tami, I was at the tail end of one when I started taking it. Then 3 weeks later I had a period. Don't know if I will have my next one though as I have already had my menstrual migraine this week and no signs of a period yet. I didn't do chemo and had my period all through treatment and stopped birth control pills when I was diagnosed.
Jo - I will be thinking of you and hoping your appointment goes smoothly tomorrow.
Welcome to the newbies! I love this discussion group
I hope everyone has a good today with minimal or manageable SEs.
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Well, one week on the Tam and I don't have one side effect. In fact, I'm spending all of my cancer treatment in physical therapy getting buff.
At first it seems too easy. I don't need rads or chemo, just pump iron and have my PT pull on my arms. I know I have to be very dilligent about every part of my body. The thought of recurrance is still a shadow over me. Right now, I just have to trust that this Tamoxifen will get the demon at bay. I don't have a uterus anymore, so at least I don't have uterine cancer on my list of worries.
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Well it seems like if anyone wants to be in my pockets tomorrow you are going to have to get up before the chickens. I have to be at the hospital at 5:00. Supposedly I am first on the schedule at 7:00. Maybe it did some good to whine about last year. I was at the hospital for almost 7 hours before I was taken to surgery. Hopefully I will be home before noon. Will post when I can.
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Missangie ~ where can I get the biosil as I would love to try it.
Jo I am always up at that time so I will keep you company till the other sistas rise and shine and bring boy toys of course.
Peg have fun in Ireland, you must be so excited. If it wasn't for this thread would anyone have told me that I would need to worry about that drug and flying. I just love the information we gather from all you lovely ladies.
Well off to cook for the kiddos, hugs and kisses ladies!
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OK...maybe margaritas are out, but we can have a pot of strong coffee....don't want to eat since you can't have anything.
Hope it all goes well for you. I'll be sending calming and peaceful thoughts your way.
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Jumping in the pockets in the morning Jo!!
I found you something to focus on, I'lm sure this will help!
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Paula - Be still my beating heart!! Once again you found some luscious eye candy. That should keep me focused in the morning. I'll even share if I have to.
June - You can crawl under that stupid blue cap. I just washed my hair so it will be nice and clean and smell good.
openheart - Strong coffee may be the order of the day.
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Well here is some man candy for the pockets!
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Hi all,
I have been on Tamoxifen for about 3 years now. I have had several side effects that I am working through (heavy bleeeding between cycles/night sweats/sleepless nights/etc), but was wondering if any of you out there have had joint pain in hands and feet/ankles. One of my doctors (internal medicine) has prescribed Celebrex for the pain and is hopeful the pain will go away with the ending of Tamoxifen after 2 more years. (Another problem that I have is that my Oncologist seems to think every side-effect that I mention is not related to the Tamoxifen - is this typical??)
Any feedback is welcome. I sometimes think I need to find a new Oncologist, but have been with this one since right after the surgeries in 2009. I liked him at first, b/c he seemed to be very up to date on clinical trials, etc, but now am feeling like he doesn't really listen to my complaints and usually just asks me if I plan to stay on the Tamoxifen - which I do - but would like to understand if the side-effects I am having are really related to the Tamoxifen.
Thanks everyone - Rose
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Hang in there Rose! I have been on Tamox for 1.5 years and joint pain was my biggest complaint. I started taking a supplement, SAM-E and it has really helped. Took a few weeks to kick in. Some people take the Glucosamine/Chondrotin supplement but I did not find it effective (though it is much less expensive!) My onco also thinks every complaint is NOT related to Tamoxifen and all I can say to you is - read these posts from the women who are taking the drugs. They/We know what the side effects are and it becomes obvious that each person is unique and nothing is out of the question. The Onco's aren't taking the drugs and they're just reading the little pamplet that comes with it. I've learned to just get my blood tests from the Onco and do my own research. Mine wasn't even interested in having me take Vitamin D or be tested. I am going to see a Naturopathic Doctor next month and am looking forward to seeing someone who is intersted in helping me combat my SE's with natural alternatives. I won't stop taking the Tamox but I do not want other drugs. I would be very wary of Celebrex.
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Rose - It is not unusual to hear that most if not all of the MOs deny Tamoxifen has any side effects. Like Hipline said, they are not taking it and must have not read the little pamphlet that comes with it. I have not had the joint/bone pain but am dealing with hot flashes and thinning hair. I take 5000mcgs Biotin for the hair issues and it does seem to help. Each one of us has our own issues and ways to deal with them. This is the place to come vent, rant, rave and learn from others. I know I have gotten a wealth of info here.
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Thanks Hipline. I am hanging in Thanks jo1955 . I actually do realize that all my side-effects are not just in my head, as my oncologist might make me think. I guess I have been frustrated with him for some time and need to get past it - either find someone new or just take it for what it is. But, I have been somewhat interested in natural medications. A friend of mine has seen a local holistic doctor and she thinks this would be a good idea for me too. Funny you are on the Sam-E. My husband took that for some time after a friend of ours recommended it - she actually had had breast cancer some years ago and may have also been on Tamoxifen at the time. Fortunately for me, at that time I had no idea of the side-effects of Tamoxifen. Not so lucky now... She actually quit the Tamoxifen after 3 years and she was diagnosed last year with bc 13 years after her original dx. One of my motivators for staying on the 5 years. 0
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Rose - Whether or not we take Tamoxifen for a few years or the full five years - this is all a crap shoot. Our MOs want us to stay on it but can't guarantee it will keep us from having a recurrance or new primary. We have to be our own advocates and do what we can to prevent going through this again.
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Jo - Glad that you'll be in early and out early! I will be hopping into your pocket early tomorrow morning as I have to get up early to get ready for our flight.
June - I bought my BioSil at a natural pharmacy that sells vitamins. I am using the drop formulation which gets absorbed faster than the pills. It doesn't taste very good, so I put it my coffee in the morning and some juice in the evening. Its cheaper in the long run to buy it in drops, but if you have issues with stuff that doesn't taste good it does come in capsule form. Here's a link that gives you more info. on it and you can do a search to find where you can buy it near you. If there isn't a place where you can buy it, send me a PM and I will buy it for you here and mail it to you!
http://naturalfactors.com/us/en/products/detail/4832/biosil-beauty-bones-joints Rose - my RO was surprized when I told him about my hair loss. He said it was rare and that it ends up being male patterned baldness. Most of my hair has fallen from the sides. After reading the Tamoxifen discussion boards, I was convinced it wasn't a rare side effect. If you are having heavy bleeding between cycles, you should really get that checked out. I don't sleep as well as I used to and I am now taking Melatonin and I think its been helping. I don't wake up 3 to 4 times per night as much. I am blaming Tami for the sleep issues as I used to be a very sound sleeper. I think MOs and ROs really just go by what they have heard through clinical trials, reasearch and what materials they have been given in terms of side effects. We should be the ones writing those pamphlets that go with the pills!
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Jumping in your pockets Jo!!! Love ya my Sista! Take care and focus on the man candy to ease your nerves.
Well all tonite I walk my 2nd survivors lap at Relay. Last years walk was a bag of emotions for me. I was 6 weeks coming off chemo and a few weeks into my Tammo. A lot has changed since then. I'm so greatful that I'm closer to that light at the end of the tunnel. I don't have days upon days that are spent worring and living in so much fear and emotion. I do still have days, but they are so far apart now, this I'm so thankful for. It really was starting to get to me, feeling that way. My mind always went to places that it didn't need to go and that really was bringing me down. I was always a strong willed woman, but this really knocked the wind outa my sails for awhile.
Love and light to you all!!! Love ya my Sistas!
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Thinking of you, Jo.
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Paula: I worked with firefighters for 25 years and none of them looked like that...dang it..I never would have retired if they did!!!
Thinking of you Jo. Hope everything has gone well for you today :-)
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