Bottle o Tamoxifen
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I don't usually post on this thread but I did post a bit back when it first started..... 5 years ago! Today I took my last Tamoxifen! It honestly went by pretty fast. My only SE's were hot flashes and insomnia. I am supposed to start on Femara now for the next 5 years. Now that this 10 year Tamox study came out I am wondering if I should just stay on it rather than switch - chemo put me in menopause.
Hugs to all you ladies going through this!
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Connie - Like everything else, it is a personal choice. From what I understand, there are more SEs with Femara - joint pain, etc. I am also postmenopausal and can't take the AIs. I would stay on Tamox since my body would already have adjusted to it.
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Thanks Jo! That is exactly what I was thinking. I am calling my onc tomorrow to see what he says. I was really looking forward to being done with Tamox even though it hasn't been that bad but I am worried about the SE's of Femara.
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Connie - in other words, if it ain't broke, don't fix it.
Have my 6 month MO appt in the morning. I am definitely going to ask my MO what he thinks about this new study out about taking Tamox for 10 years. I really don't want to go beyond the 5 years. Heck! I don't want to do another year. I just have too many uterine issues. I am scared of getting uterine cancer from the damn little white pill. I will let you know what he says.
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Connie - that's so exciting! Glad to know the time went by fairly quickly... I still have 3 years to go. I guess if I quit thinking about it so much that would probably help, lol
Yeah, if it ain't broke don't fix it! The only thing that's bothering me is I remember this conversation with my MO where I think she said that IF I should get breast cancer in the other breast, the chances are it would be hormone negative, more so with Tamoxifen than the AIs (which doesn't really make sense...). Also I sort of remember the longer you take it, the more it increases your chances of that happening. It's back to that contradictory stuff - I don't see why they would recommend taking Tamoxifen for 10 years if this is a possiblity, so I'm not sure I remembered correctly, but maybe ask your MO.
Another reason that I'm thinking about NOT continuing it beyond the 5 years is a study that came out not too long ago talking about the long-term protection you get from taking Tamoxifen for 5 years. It said women were still well-protected 10 years and even 15 years out. Here's BCO's article about that: http://www.breastcancer.org/research-news/20110728-3
So it's such an individual thing, for sure. I'll make my decision about all this in 3 years, but I sure do like the idea of going 5 years without anything and then maybe taking an AI.
Jo - I know Tamoxifen seems to love your uterus! I'm with you, I'm going to insist on a transvaginal ultrasound every year because you're only as good as your last test and these things can turn on a dime. Wouldn't it be a nice surprise if next year your uterus was fine?
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heartnsoul - It would be great if my gyn exam was negative. But, something tells me otherwise. I don't have a very good track record so far. Jo- 0, Uterine issues - 2. LOL
I know I am going to insist on a hysterectomy and hopefully that would take care of those problems.
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Yeah, I don't think the oddsmakers in Las Vegas would bet on it, either.
Plus, the hysterectomy would eliminate any worrying about the ovaries, too. Sounds like a win-win.
Paula, girl, where are you? Manday is coming up! I hope you are happy-busy.
Tink - I hope they have worked everything out for your Mom and things have settled down a little.
Sherry - glad to hear your doctor was on top of things and fixed the problem. Hope the pain has gone by now.
I'm getting my 1st colonoscopy Wednesday. I've been putting it off and putting it off and finally decided to bite the bullet and get 'er done! I've gotten past dreading the embarrassment and moved on to dreading the prep - ugh!
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heartnsoul - My gyn had me do a colonscopy when I was 52 and the prep is the worst part. I was totally out for the actual procedure. Not bad at all. The worst part for me was the IV. I have a real fear of them. You are going to do just fine.
Had my MO appt this morning. All is well. Have my mammo scheduled for Mar and next MO app is in June. I did ask about the 10 years of Tamox and he really did not have an opinion. This has come up before many years ago. I told him we could just take it one year at a time - he agreed. Got my script for another year. Can't believe on Jan 5th I will be starting my 3rd year. If every stays like it is, I doubt I will do more than the 5 years.
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Well, I talked to my onc just now concerning the 10 years of Tamox. I called this morning and the nurse told me that I was the second person that had called about this today!
My onc said he was at the meeting when this was presented and he still recommends the switch to Femara for me. He said the benefit of 5 years Tamox and 5 year AI still shows a bit better than 10 years Tamox. Plus his experiences are that the side effects are a bit less on Femara and the risks (uterine cancer) less. If I do not tolerate Femara we could still switch back to Tamox.
So, I trust my onc and will move over to the new med!
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Jo - I start the prep in the morning. I just want to get this over with! As far as the 10 year thing goes, I still like the idea of 5!
Connie - I've always heard good things about following Tamoxifen with an AI so if I have to, that's probably the route I would take. Although, if it was unbearable then it's good to know we can always go back to Tamoxifen. I've heard that Femara has the least SEs of the AIs. Good luck with it and please let us know how it goes for you!
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heartnsoul - I will be in our pocket holding your hand. You are going to do great.
Femara was a bigger nightmare that Arimidex and that one was bad enough. My stomach just didn't like either one of them. 5 years of Tamox is going to be my limit.
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HI...I'm new here. I am 43. I was dx with breast cancer in 2007 had a lumpectomy (clear margins..lymp neg 1 cm stage 1 grade 1 I believe)and rads on right breast...I opted out of Tamox...In August I was dx with the same thing left side.. I have lumpectomy in Sept 2012 1.5 cm..stage 1...grade 2...oncdx 22, I opted out of chemo...just finished rads and started tamox last week...terrified.
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Wendy, you have come to the right place. Here you will find women who share your experiences, your fears and your hopes. We are a group no one wants to join but that welcomes all who need us as we need each other. Feel free to share your concerns, ask your questions, rant if you need to. Tamaxifen affects us all differently but there is always someone that can respond to each. Welcome to our midst.
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Wendy, Welcome to the club no one wants to be a member of. Sorry you are having to do this again. Chabba said it well. We each respond to Tamox differently. I for one just took the plunge. Got my script and just decided to get on with it. If the SEs were too bad I could always stop it. Come here often and let us know your concerns and ask all the questions you want. We are all here for you.
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Thank you, Jo! I hope you don't mind having a kinder, gentler snack at first THEN we'll hit the chocolate and margaritas. My son happened to buy some milk with Probiotics and I have some beautiful fresh strawberries, so I think the first thing we'll eat will be a strawberry smoothie!
Wendy, sorry you have to be here but glad you found us! If you have any questions about Tamoxifen side effects, you're in the right place. Hope it is a smooth journey for you!
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Wendy, here's hoping you have few SEs ... most do very well. Remeber not to judge on first couple of months as it takes time for your body to adjust. Some level out.
So had my d&c,hysterscopy and endo ablation yesterday. Felt pretty crappy last night, but better today. Hoping I will be happy with the result. An improvement in QOL.
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Hi all, this may have been asked already, I did not go thru all of the posts. I have been on tammy since Nov 2011. I have some aches and pains that are common SE's of the tammy. In the past few days I have developed worse than usual lower back/tailbone pain. Over the last few months while sweeping the barn with a big broom, when I twist to sweep I feel a pretty bad pain around my ribcage on the uneffected side. I stop, let the pain go away and continue sweeping. This has happened 4 times in the past fwe months. Now I feel something near my ribs but when I poke the area, the actualy rib, there is no pain, it seems to be muscular. Has anyone experienced increased achiness with increased activity? I recently bought a new horse and began riding saddle seat and I have never ridden english before always western. For anyone who may not know the difference, western is seated riding and saddleseat/english is a posting up and down motion. My sister says if my back hurts I am posting wrong, that coudl very well be. But has anyone seen an increase in achiness with added activity? I am freaking out wanting to go see my onc but have an appt with him in January so I figure I might as well wait til then.
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Cheryl, I am having the exact same issue amoung others with Tamoxifen! I am experiencing pain in my ribs after working out last week. My stupid brain goes to the worst, maybe the cancer has spread to my bones now! But I am also having skin rash that was confirmed to be due to medication. It is all so frustrating and hard to figure out.
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Hi ladies, sorry I have been gone for such a long time. It has been really crazy here and I will try to catch up on this thread.
My mom is now in hospice and not doing well at all. I was down there with her for 3weeks again in nov. She was placed back on continous hospice care for now again, as she was extremely agitated delusional and experiencing paranoi. They think it may be in her brain now. Every day is so different, tonight she didn't really talk much or understand but I know they are trying to keep Herr calm and comfortable. She has given them quite the hard time.
I am going for my colonoscopy today and I am relieved to be getting it done especially after having BOTH My parents having it.
My ONC did tell me I was a perfect candidate for the 10 yr Tamoxifen program... Oh boy, I do have alot of the risk factors, but too much going on right now so I told her I will worry about that in 2 And half years, she said ok, just wanted to give you a little heads up and let you know.... Ok.... One day at a time.
Hope each and everyone of you is doing well and I am going to try and catch up on everything here
Hugs
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I am new to this board and haven't read through all the many posts. Having SE's from the tamoxifen--bad skin eruptions that have been biopsied and said to be medication reactions that seem to be compounded by taking my supplements. Any one out there that has some ideas about nathuropaths that know about natural ways to block out estrogen rather than be on these horrible meds???
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Tink, I am so sorry for what you are going through. I hope the hospice will keep her as comfortable as possilbe. My FIL passed from brain cancer and I know it is very hard when they are not always themselves or even know who you are. Many hugs and blessings your way. Good luck with colonoscopy.
Rib pain, did you have radiation therapy? I have this problem as a leftover from this, because ribs are in pairs the pain often appears on the other side. Had inflamation in muscles etc. after. Tightness pulls. Painted my kitchen a wall at a time. Too much kept reminding me that it wasn't all better yet, even though I don't notice it as much on a daily basis.
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Tink - I'm so sorry to hear about your mother. I hope hospice will keep her comfortable and you are able to grab some good moments with her. I hate cancer so much. My uncle died of a brain tumor.
I'm so glad you had your colonoscopy today. I had my 1st one yesterday, and I feel so happy about doing it. They did find one polyp - about 1.1 cm - so I have to go back in 3 years, but I don't really mind. I'm happy to keep a close eye on everything!
I'm sure you are beyond thrilled to have your doctor recommend 10 years of Tamoxifen therapy! Yeah, I like the "we'll see when I get there" approach.
Cheryl - my friend used to ride English in horse shows, and she would make me do it. I never cared for that style of riding (although it is pretty), but I can see how that would make your tailbone and lower back hurt. They say the rule of thumb is if you have constant pain for 2 weeks to go see your MO about it, but I believe all the AIs and Tamoxifen cause pain and achiniess. Even knowing that, it's hard not to worry I know.
Trisara5 - I haven't had any skin issues with Tamoxifen, so I don't have any advice. Hopefully someone here who has had problems will chime in soon. When I was first diagnosed, I did a lot of research on DIM and tried to talk my MO into it. She wasn't 100% sold on it, and I did end up taking the Tamoxifen, but you might look into that. Also, here is a thread where they are discussing natural alternatives to treat estrogen-positive breast cancer: http://community.breastcancer.org/forum/121/topic/791646?page=18#idx_511
There is also a thread called "Natural Girls" that offers a lot of good advice.
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oh boy i am behind here.
connie woohoo on finishing tamox.
In Feb I will start on my third year. I see my MO in Jan and will ask what he things regarding the 10 years. In the beginning he had talked about me doing 5 years tamox and 5 years AI so we will see.
For the newbies the first year on tamox was really hard on me, but my body finally adjust and the only lingering SE is hotflashes. I finally had to break down and take effexor and that has worked really well. I still get the occasional hot flashes but they are not near as intense as before. I had my uterus removed years ago so I don't have to worry about that.
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Sherry, From what all I have read on the recent study that is suggesting taking Tamoxifen for 10 years - the focus was primarily on premenopausal women. In fact, there was no mention of postmenopausal women doing the 10 years. I am pretyt sure at this point that I will do the 5 years and that is it. Too many uterine issues with me. In Jan, I start my 3rd year.
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Jo I wonder since I started BC pre-menopausal but seems as though I have gone through menopause now wonder how they will look at it. I see my MO in Jan and he will have an opinion.
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Sherry, He may or may not switch you at some point to an AI. With all the difficulties you had with Tamoxifen in the beginning I would try and stay on Tamox for the full 5 years. But of course, you can always go back to Tamox if the AIs are not working for you.
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ok, another question, I got my refill this month for tamoxifen and CVS changed brands on from Mylan to Waston, I have noticed a difference between the two. My eyes are not as blurry and the joint pain is more managable by night time. Anyony else experience differences????
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I picked up my refill of tamoxifen today at CVS and it was also the Waston brand instead of Mylan. I am a little worried about switching brands because I've had no side effects on the Mylan brand.
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My tamoxifen is by Teva but I would be interested in trying a different manufacturer. I believe the only difference is the fillers but they can cause different reactions if you're sensitive to something. I took a 6 week break from tamoxifen in November and was sleeping so well. I'm back on it and not sleeping at all (due to hot flashes). That and some ovarian polyps are my only real complaints. Am waiting for the day I can switch to an AI but I had a period when I took the 6 week break (I'm 54!!) so another year at least before that can be considered.
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Just passed my 1 year anniversary on tamoxifen. Can't believe in some ways that it has been a year on this journey with you all and in others so much has happened.
Still having spotting and stuff from Endo ablation 3 weeks ago. Wonder if tamox is affecting the healing.
Wishing you all health and happiness in 2013.
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