Tamoxifen
OK, Tuesday was my last radiation! (I had a total of 28). YEA! I'm a little burnt and working through that. I'm still on Herceptin and will be til July 2012.
On top of this I found out I have to take Tamoxifen... for 5 years. I began it Thursday because I wanted to be done with radiation before I began. I'm sure a number of you had this and/or may still be on it. Any tips, thoughts, concerns?? I started at the bottle for about an hour before cracking it open and popping the first one. It's the darn WARNING labels and information that caused the pause.. grrrr
Anyway, any feedback would be greatly appreciated!! Have a wonderful weekend all!
Lisa
Comments
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Been on 6 months
So far no big problems. Did do a pelvic ultrasound for baseline on possible uterine lining thickening...it was messed up so won't really have an answer there until I do the 3rd one in January. Had some nausea at first and have hot flashes. Changed to taking it in the evening to sleep thru the nausea but am thinking of going back to morning now that it is cold out and I get cold easily. A few day time hot flashes might be nice, LOL. No major joint pain or extremity swelling. Hope the next 4 1/2 years go as smoothly
Good luck to you,
Jennifer0 -
Jennifergrams2jc said:Been on 6 months
So far no big problems. Did do a pelvic ultrasound for baseline on possible uterine lining thickening...it was messed up so won't really have an answer there until I do the 3rd one in January. Had some nausea at first and have hot flashes. Changed to taking it in the evening to sleep thru the nausea but am thinking of going back to morning now that it is cold out and I get cold easily. A few day time hot flashes might be nice, LOL. No major joint pain or extremity swelling. Hope the next 4 1/2 years go as smoothly
Good luck to you,
Jennifer
Thank you for the feedback.. I have taken mine in the morning, so far... (wondering if rememberng daily will be a challenge at some point...lol). No nausea (thank God), but have had increased hot flashes. Like you, it's welcome now that it is colder. In the summer months when I would have hot flashes (prior to Tamoxifen) I would just drench... lol That's AZ for you...
I hope the years go smooth and quickly for you. Let me know how the results of the test come out. I had an annual check about 1 1/2 months ago, but we didn't do a pelvic ultra sound. Going to check with my GYNO on that Monday - so thanks for mentioning it.0 -
Is it worth it? That's different for everybody.ldpettit said:Jennifer
Thank you for the feedback.. I have taken mine in the morning, so far... (wondering if rememberng daily will be a challenge at some point...lol). No nausea (thank God), but have had increased hot flashes. Like you, it's welcome now that it is colder. In the summer months when I would have hot flashes (prior to Tamoxifen) I would just drench... lol That's AZ for you...
I hope the years go smooth and quickly for you. Let me know how the results of the test come out. I had an annual check about 1 1/2 months ago, but we didn't do a pelvic ultra sound. Going to check with my GYNO on that Monday - so thanks for mentioning it.
Hi. I took Tamoxifen for almost 2 years. I had a pelvic ultrasound early on, as a baseline. It was normal. A year later, it showed thickening which turned out to be several uterine polyps. I had them removed (ugh). Had another ultrasound in 6 months and THAT one also showed more thickening. More polyps. During the removal of those, the cutting gadget's movable "claw" broke off. The doc had a heck of a time getting it out of my uterus. After that, the oncologist agreed with my gynecologist that the Tamoxifen was not that important for me (DCIS, grade 3, although my cancer was 90% ER positive.
But, despite all the side effects of leg cramps, severe hot flashes, and uterine polyps, I wish I had something protecting me to lower the estrogen in my body. Guess I'll just have to break down and admit that I need to lose weight, lose the fat that produces estrogen, and feel safer from a recurrence!
Do you want to reduce the estrogen in YOUR body? Try it. You can always stop later.
~~Connie~~0 -
Hi Lisa i have been on
Hi Lisa i have been on Tamoxifen since Aug.2010 have know side affects except for some weight gain and hot flashes but they started just after May when i found the cancer and they took me off of HRT so don't know if it adds to them or not thank god for winter Hugs Frankie0 -
I have been on it for aFrankie Shannon said:Hi Lisa i have been on
Hi Lisa i have been on Tamoxifen since Aug.2010 have know side affects except for some weight gain and hot flashes but they started just after May when i found the cancer and they took me off of HRT so don't know if it adds to them or not thank god for winter Hugs Frankie
I have been on it for a year. I get nausea with it , so I take it at night. Hot flashes are bearable. will have an Us soon. I take a daily aspirin so I think it helps with the blood clotting issue. Plus other precautions on planes and sitting for long periods of time. I do have joint and muscle pain but try to deal withit the best I can. Exersize helps.
I believe the best way to lower estrogen is to lose weight and do some form of exersize per day.0 -
Hi Lisa! Yes, we haven't
Hi Lisa! Yes, we haven't seen you in a while. Hope you recover from radiation soon.
I started tamoxifen 3 months ago. I felt the same way you did. I was scared to start it because of the side effects they listed on the labels. The three that worried me the most were cataracts, endometrium c and blood clots. But hey, I am fighting a beast here! So I just had to do what I had to do, to do what I wanted to do (like Chen says).
I had depression from this med for a few weeks, but it slowly got better. And today I am not really feeling down as I used to. I also had strong hot flashes at night, and day - they kept me up, but now it's not as severe so that also got better. And finally, I developed some yellowish discharge, which coloring got better but I still get some. My radiation Dr. suggested I go see a GYN under oncology since they deal with these everyday due to tamoxifen (and cancer patients). So I went to see one. No sonogram yet, but planning to do one soon. My GYN Onco didn't want to do it just yet. I was told there are a lot of false alarms with them, and sometimes unnecessary biopsies (for example, some women get them 2-3 times a year when once a year is enough - and even the label states it under tamoxifen). I think you should follow your instincts. like mine tell me I must do a sono every 6 months although this advice came from Sloan Kettering, where I am getting treatment.
I think you will do great. If you start experiencing some things, let your Dr. know but don't panic as they usually go away after some time. They did for me.
Good luck with it all! And hope to see you back more often.
0 -
Claw brokecrselby said:Is it worth it? That's different for everybody.
Hi. I took Tamoxifen for almost 2 years. I had a pelvic ultrasound early on, as a baseline. It was normal. A year later, it showed thickening which turned out to be several uterine polyps. I had them removed (ugh). Had another ultrasound in 6 months and THAT one also showed more thickening. More polyps. During the removal of those, the cutting gadget's movable "claw" broke off. The doc had a heck of a time getting it out of my uterus. After that, the oncologist agreed with my gynecologist that the Tamoxifen was not that important for me (DCIS, grade 3, although my cancer was 90% ER positive.
But, despite all the side effects of leg cramps, severe hot flashes, and uterine polyps, I wish I had something protecting me to lower the estrogen in my body. Guess I'll just have to break down and admit that I need to lose weight, lose the fat that produces estrogen, and feel safer from a recurrence!
Do you want to reduce the estrogen in YOUR body? Try it. You can always stop later.
~~Connie~~
Ok... OMG the claw broke off. How crazy is that, but Thank God you are ok. Thank you SO much for your personal insite to this medication. I need to lose weight. Since I started this venture in January (chemo started in March) I was already overweight having not lost my lazy/baby weight after Emma was born 4 years ago. YES, having a child at 40 sure did a number to my body. lol Since starting this I gained another 15-20 lbs (depending on the day and the scale). UGH It's all a beast trying to kill the C in all of us... right?
Thanks for your info and support... and here's to a new year, new memories, and with any luck some weight loss and muscle gain. 0 -
HOT FLASHESFrankie Shannon said:Hi Lisa i have been on
Hi Lisa i have been on Tamoxifen since Aug.2010 have know side affects except for some weight gain and hot flashes but they started just after May when i found the cancer and they took me off of HRT so don't know if it adds to them or not thank god for winter Hugs Frankie
Yes, hot flashes... they have gotten stronger now that I am on the medication. I'm grateful it is no longer summer right now (YES, thank God for winter!!)... I can't wait to have the flashes just subside or go away.0 -
Endo CLoveBabyJesus said:Hi Lisa! Yes, we haven't
Hi Lisa! Yes, we haven't seen you in a while. Hope you recover from radiation soon.
I started tamoxifen 3 months ago. I felt the same way you did. I was scared to start it because of the side effects they listed on the labels. The three that worried me the most were cataracts, endometrium c and blood clots. But hey, I am fighting a beast here! So I just had to do what I had to do, to do what I wanted to do (like Chen says).
I had depression from this med for a few weeks, but it slowly got better. And today I am not really feeling down as I used to. I also had strong hot flashes at night, and day - they kept me up, but now it's not as severe so that also got better. And finally, I developed some yellowish discharge, which coloring got better but I still get some. My radiation Dr. suggested I go see a GYN under oncology since they deal with these everyday due to tamoxifen (and cancer patients). So I went to see one. No sonogram yet, but planning to do one soon. My GYN Onco didn't want to do it just yet. I was told there are a lot of false alarms with them, and sometimes unnecessary biopsies (for example, some women get them 2-3 times a year when once a year is enough - and even the label states it under tamoxifen). I think you should follow your instincts. like mine tell me I must do a sono every 6 months although this advice came from Sloan Kettering, where I am getting treatment.
I think you will do great. If you start experiencing some things, let your Dr. know but don't panic as they usually go away after some time. They did for me.
Good luck with it all! And hope to see you back more often.
YES, that was one of my concerns along with the blood clotting... Such a joy to rid of one thing to have another thing in your system with more warning labels on it. I hear the robot from that old show when I was a kid "DANGER WILL ROGERS DANGER" - Lost in Space.
I haven't had depression yet... If I do maybe I'm in denial... lol Could be.. ugh - or the fact that I have a 4 year old AND a 13 year old and there just isn't time for me to get depressed. Between tantrums and my daughters emotional hormones... lol ahhhh love my kids... they keep me going for sure. Thank GOD!
I will check with my MO or GYN to see whom will order the pelvic ultra sound. Hard to believe no one suggested it yet so THANK YOU!!
As far as radiation... me too. Under my right arm is still pretty burnt and now peeling... so trying to keep creams on it. If you have any suggestions, I will gladly take them.
Thank you again so much for your input. Have a wonderful day!!0 -
Congrats rad grad!grams2jc said:Been on 6 months
So far no big problems. Did do a pelvic ultrasound for baseline on possible uterine lining thickening...it was messed up so won't really have an answer there until I do the 3rd one in January. Had some nausea at first and have hot flashes. Changed to taking it in the evening to sleep thru the nausea but am thinking of going back to morning now that it is cold out and I get cold easily. A few day time hot flashes might be nice, LOL. No major joint pain or extremity swelling. Hope the next 4 1/2 years go as smoothly
Good luck to you,
Jennifer
Congrats rad grad!0 -
I've been on tamoxifenldpettit said:Endo C
YES, that was one of my concerns along with the blood clotting... Such a joy to rid of one thing to have another thing in your system with more warning labels on it. I hear the robot from that old show when I was a kid "DANGER WILL ROGERS DANGER" - Lost in Space.
I haven't had depression yet... If I do maybe I'm in denial... lol Could be.. ugh - or the fact that I have a 4 year old AND a 13 year old and there just isn't time for me to get depressed. Between tantrums and my daughters emotional hormones... lol ahhhh love my kids... they keep me going for sure. Thank GOD!
I will check with my MO or GYN to see whom will order the pelvic ultra sound. Hard to believe no one suggested it yet so THANK YOU!!
As far as radiation... me too. Under my right arm is still pretty burnt and now peeling... so trying to keep creams on it. If you have any suggestions, I will gladly take them.
Thank you again so much for your input. Have a wonderful day!!
I've been on tamoxifin for 2 years as of this week. I was more fearful than you.I looked at the bottle for 6 weeks and finally broke down.My breast surgeon encouraged me by saying you had a non invasive cancer but doesn't mean cancer won't strike another part of your body. I had my husband take me for a ride to calm me and took the pill.I was awaiting some serious side effect.So far nothing but a cataract and a floater.In the early stage.I have varicose veins and that worries me.I had them before I took tamox.No clots though but I do watch my legs and make sure no new leg problems develop.In fact making a appt tomorrow to see my dermatologist to do a treatment on my veins.He asked the insurance company to put it under medical but so far no response so I will be paying for my treatment.Tired of waiting for the insurance to be approved.
Everytime I see any of my doctors the first thing they ask"Are you still taking your tamoxifin"???? It must be important.My friend took that for 5 years and another pill for 5 years.She wanted something else but there was nothing.She doesn't even like taking pills but she felt it was a cancer blocker.She is a 16 year survivor.
Luckily for the uterus and other female organs I had a total hysteroctomy.I am thankful I had that years before taking the tamox.It would be a worry.
Lynn Smith0 -
LynnLynn Smith said:I've been on tamoxifen
I've been on tamoxifin for 2 years as of this week. I was more fearful than you.I looked at the bottle for 6 weeks and finally broke down.My breast surgeon encouraged me by saying you had a non invasive cancer but doesn't mean cancer won't strike another part of your body. I had my husband take me for a ride to calm me and took the pill.I was awaiting some serious side effect.So far nothing but a cataract and a floater.In the early stage.I have varicose veins and that worries me.I had them before I took tamox.No clots though but I do watch my legs and make sure no new leg problems develop.In fact making a appt tomorrow to see my dermatologist to do a treatment on my veins.He asked the insurance company to put it under medical but so far no response so I will be paying for my treatment.Tired of waiting for the insurance to be approved.
Everytime I see any of my doctors the first thing they ask"Are you still taking your tamoxifin"???? It must be important.My friend took that for 5 years and another pill for 5 years.She wanted something else but there was nothing.She doesn't even like taking pills but she felt it was a cancer blocker.She is a 16 year survivor.
Luckily for the uterus and other female organs I had a total hysteroctomy.I am thankful I had that years before taking the tamox.It would be a worry.
Lynn Smith
Hi there.. Thank you for your post. I have not had a hysterectomy and just left a message for my gyno yesterday as to whether I should consider it now. Prior to finding out I was going to have to be on Tamoxifen he said NO to surgery. Now thinking I should... ugh... nothing like being behind on that part of it. We shall see. I couldn't even get the MO that ordered the meds to do a baseline pelvic ultra sound. I have left a msg to my gyno about that as well.
It amazes me how much WE have to advicate for ourselves through this process. Between the doctors and insurance... YIKES!!0 -
Jan 08-it all started-I had
Jan 08-it all started-I had lumpectomy, 8 wks radiation and tamoxifen! I HAD NO side effects to speak of for 3 yrs..I was going regulary for internal ultrasound followed by D & C each 4-6 mths. I had thickening of uterus-then bleeding 4 yr post meno. SO MAY of this year I had total Hysterectomy. (big but since uterus too large)
All good now..back on tamoxifen..( was takne off for about 3 mths prior to surgery with no changes being off it so had surgery)
Denise0 -
Congrats on finishing radsldpettit said:HOT FLASHES
Yes, hot flashes... they have gotten stronger now that I am on the medication. I'm grateful it is no longer summer right now (YES, thank God for winter!!)... I can't wait to have the flashes just subside or go away.
Congrats on finishing rads and I hope the hot flashes get better for you. There is a prescription your onco can give you to help.
Hugs, Angie0 -
I just thought it wasdisneyfan2008 said:Jan 08-it all started-I had
Jan 08-it all started-I had lumpectomy, 8 wks radiation and tamoxifen! I HAD NO side effects to speak of for 3 yrs..I was going regulary for internal ultrasound followed by D & C each 4-6 mths. I had thickening of uterus-then bleeding 4 yr post meno. SO MAY of this year I had total Hysterectomy. (big but since uterus too large)
All good now..back on tamoxifen..( was takne off for about 3 mths prior to surgery with no changes being off it so had surgery)
Denise
I just thought it was a plus to have a hysteroctomy.looking back 16 years ago when I had it I was terrified.Even cancelled my first date for surgery.Worried about hot flashes and going through the change.It didn't hit me that bad and tamoxifin hasn't caused hot flashes after 2 years.I am lucky.
My friend is a 16 year survivor and in the last year a fibroid tumor was found on her ovaries.She still isn't getting a hystercomy.It is a fibroid.She took tamoxifin for 5 years and something after that for 5 years.
You should be able to make your own decision. IMO it would always be a worry.Another place to get cancer.
Lynn Smith0 -
Tamoxifen
I had breast cancer 4 years ago and took the meds for 3 in a half years. It unfortuantly did not work for me. Now i have breast cancer in my spine.Just got done with chemo starting rads Monday and I'm 44. It kinda sucks a little. While taking Tamoxifen i did well on it no real side effects except hot flashes once in a while. Good Luck to you i wish you well.
Holly0 -
I took tamoxifen for 7
I took tamoxifen for 7 years. I know most take it for 5, but we didn't know how long I should take it back in 1987.
Here is what I noticed: very few if any side effects at first; a little weight gain over the 7 years (came off after I stopped-yay); more tired toward the end; definitely a big decrease in libido which was upsetting at age 33; very mild vaginal discahrge from time to time; shorter periods (yay).
That's it, so, for me, the drug was definitely worth it. Especially since in February I will be celebrating my 25th Canniversary!0 -
How are you doing on tamoxldpettit said:Lynn
Hi there.. Thank you for your post. I have not had a hysterectomy and just left a message for my gyno yesterday as to whether I should consider it now. Prior to finding out I was going to have to be on Tamoxifen he said NO to surgery. Now thinking I should... ugh... nothing like being behind on that part of it. We shall see. I couldn't even get the MO that ordered the meds to do a baseline pelvic ultra sound. I have left a msg to my gyno about that as well.
It amazes me how much WE have to advicate for ourselves through this process. Between the doctors and insurance... YIKES!!
How are you doing on tamox now Lisa?0 -
tamoxifinhelen e said:Hi
I've been on it for 2 years and have had some bad side effects BUT I can deal with them I guess, just take more meds to help. I will say that even with everything, I still take it.
I've been on Tamoxifin since October 2011. I admit that I too looked a while at the bottle before I took it. I have had the hot flashes, which I was having before, and some leg cramps. My joints are a bit stiff, but once I get going I'm ok. I'm 51. I think my oncologist said he would keep me on it for 2 years and if I really was in menopause would then put me on another one of the medications due to the Uterine cancer risk. So far, so good I guess. Now on to trying to lose weight.0
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