Tamoxifen

TKMomma

Been on tomaxafen since
Been on tomaxafen since august 2011. I have had leg cramping and continuous hot flashes. I am 51 and the pill stopped my periods but I am not menopausal. Had d&c a month ago due to pelvic pain, thickning of lining and uterine polyps. Still having pelvic pain and further testing being done. Everyone handles differently. Good luck.

carrie61

Tamoxifen
I started taking this drug after my last chemo in May. It caused terrible hot flashes & I gained 14lbs in 2 months. Needless to say, I hated it. I complained to my onc, he gave me blood test to see if I was in menopause, & I'm very happy to say I was, thanks to the chemo. That allowed him to switch me to Femara. No more hot flashes & I've been able to start losing weight again, down 1l lbs in 6 weeks.

If you're peri-menopausal, taking the Tamxifen is probably better than not taking anything & you may not experience the side effects I encountered.

Frankie Shannon

ldpettit 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!!

I also have not had a
I also have not had a hysterectomy so far so good a year and a half on Tamoxifen.

jnl

CypressCynthia said:

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!

Is the time now for tamox 5
Is the time now for tamox 5 years or 7 Cynthia? And, do you know why they picked that number 5?


Leeza

disneyfan2008

CypressCynthia said:

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!

Canniversary::::: Do you use
Canniversary::::: Do you use start date or end of treatments etc?

Denise

disneyfan2008

Tkitty said:

tamoxifin
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.

Tkitty:
May 2011 I had total
Tkitty:

May 2011 I had total hysterectomy due to Thickening of uterus..

Denise

I am 52 now and have been post meno for about 5 yrs..

RozHopkins

Tamox
Been on Tamox since last Nov. E Pos, bilateral, Infiltrating Lobular, 4 chemos. I was told may have to be on it for 10 years, pre meno as far as we know. No periods though since just after starting chemo. My Oncol says even with two years of no periods he still thinks Tamox should be taken beyond that time. My mum took it for 5 years, then sadly got cancer back two more times. I have horrendous hot flashes sometimes, all day and night. Then other times always there but not as frequent. I also take Cymbalta and these two drugs do not like each other much.... I take them together on a morning with Greek Yogurt (not a breakfast person) but these two drugs on an empty stomach is asking for trouble. I also have put on 4/5 pounds weight which I'd certainly dont need. However, go to the gym and enjoy quite a few classes. Though not skinny I feel tons better. Did have many aches and pains, terribly tired for a long time, now all gone. Took a year to go. Best of luck to you all. Totally hate taking this but I think I must in the hope of killing off any hungry estrogen driven cancer cells.

Merry Xmas to everyone and Happy New Year

DianeBC

TKMomma said:

Been on tomaxafen since
Been on tomaxafen since august 2011. I have had leg cramping and continuous hot flashes. I am 51 and the pill stopped my periods but I am not menopausal. Had d&c a month ago due to pelvic pain, thickning of lining and uterine polyps. Still having pelvic pain and further testing being done. Everyone handles differently. Good luck.

I have heard that they will
I have heard that they will stop tamox sometimes if you are having really bad side effects and give you a break. Has anyone had that happen?

sdukowitz

just finished radiation, just starting Tamoxifin
Just finished my radiation treatments . . . the only pain for me was having to fly back and forth every day to Anchorage for a ten minute appt. and fly back home again. . . luckily I had a great supplemental cancer policy from years ago that will pay these expenses . . .

Anyway, I am just starting Tamoxifin . . . a little nervous with this, but just added it to my routine and hopefully won't experience too many of the controversal side effects . .

I am 55 . . .had to miss work a lot due to travel for the radiation, but Yay. . . .It's done . . it's Christmas break, and back to sub. teaching again in January . . .

I had DCIS in situ . .. with comedo neucrosis, and estrogen and progesterone positive, so I made the decison to take all precautions for recurrence with the radiation and Tamoxifin . . . and I live in Alaska so might welcome those hot flashes . . .

Shirleyzo

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.

hot flashes
Jennifer, ask your Ono to prescribe Prozac, it helps with the hot flashes. There are a few others that will not interfere with the tamox, Shirley

ldpettit

Kylez said:

How are you doing on tamox
How are you doing on tamox now Lisa?

Kylez
Sorry for the delay... It's been just hectic. I am doing really well on the Tamoxifen so far. I will be having a hysterectomy on 12/28 as the gyno feels given past surgeries and with BC that it's the best thing.

ldpettit

hllyhbby said:

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.
Holly

Holly
I'm so sorry your cancer spread to your spine. How are you doing now? I'm 45 myself.

ldpettit

CypressCynthia said:

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!

25th Canniversary!!
First off CONGRATS on almost 25 years... WOW!! You are such a testimony. Thank you!!

ldpettit

sdukowitz said:

just finished radiation, just starting Tamoxifin
Just finished my radiation treatments . . . the only pain for me was having to fly back and forth every day to Anchorage for a ten minute appt. and fly back home again. . . luckily I had a great supplemental cancer policy from years ago that will pay these expenses . . .

Anyway, I am just starting Tamoxifin . . . a little nervous with this, but just added it to my routine and hopefully won't experience too many of the controversal side effects . .

I am 55 . . .had to miss work a lot due to travel for the radiation, but Yay. . . .It's done . . it's Christmas break, and back to sub. teaching again in January . . .

I had DCIS in situ . .. with comedo neucrosis, and estrogen and progesterone positive, so I made the decison to take all precautions for recurrence with the radiation and Tamoxifin . . . and I live in Alaska so might welcome those hot flashes . . .

Messages
Thank you EVERYONE that has posted and shared their experience with Tamoxifen. I have been on it almost 4 weeks and so far it's been ok. It's cooler here now in AZ so the hot flashes aren't killing me like they did in the summer months.

After consulting with my gyno we have decided to go ahead with the hysterectomy. Because my deductible and Co-insurance has been satisfied for the year I was able to push and get it done before year end. (12/28/2011). I will say I am having slight panic about the pathology report already... I'm sure that's normal. It's just been a crappy year!!

Cancer diagnosis in January, double mastectomy in February, chemo began in March, radiation all November, Husband lost his job 12/2/2011 and now hysterectomy next week. I'm SO ready for 2012...

Have a VERY Merry Christmas everyone!!!

Sandylmt

ldpettit said:

Messages
Thank you EVERYONE that has posted and shared their experience with Tamoxifen. I have been on it almost 4 weeks and so far it's been ok. It's cooler here now in AZ so the hot flashes aren't killing me like they did in the summer months.

After consulting with my gyno we have decided to go ahead with the hysterectomy. Because my deductible and Co-insurance has been satisfied for the year I was able to push and get it done before year end. (12/28/2011). I will say I am having slight panic about the pathology report already... I'm sure that's normal. It's just been a crappy year!!

Cancer diagnosis in January, double mastectomy in February, chemo began in March, radiation all November, Husband lost his job 12/2/2011 and now hysterectomy next week. I'm SO ready for 2012...

Have a VERY Merry Christmas everyone!!!

Hello!
Hello everyone, my name is Sandy and I just joined. I am 45, was diagnosed with breast April 13th and finished with radiation July 27th. My Dr too prescribed Tamoxifen and I too was petrified to take it, mainly because the side effects of menopause. However, the reason why I am here is because I have been taking it for 3 1/2 months and have had not a single side effect. Not one hot flash, none of the side effects that were mentioned. If anything, I would say I feel better. I'm sleeping like a log, and I am still getting my period. So, when I went to my breast surgeon and told him of this, he said this was not good, that essentially it meant the Tamoifen was not working and that my oncologist would probably change my meds. So, when I went to the oncologist and told him the same thing he was stumped. I have stumped my oncologist which I somehow think this is not a good thing. He tells me that some people don't metabolize the drug. Has anyone heard of such a thing? I am at a loss for what to do now. My Dr. said my 2 options were to stop taking it, which he doesn't want me to do, or they would have to medically induce menopause, which he doesn't recommend. I'm frustrated because I do not like taking meds I don't need to take. I feel like it is not working and I don't know what to do. Luckily it is not expensive so I continue to take it as I don't know what else to do. The Dr wants to follow up in 6mos which makes me antsy. I feel like I shouldn't wait that long.

On another note, I was shocked to here about people getting pelvic ultrasounds, cataracts, blood clotting, etc...I have never heard of such a thing. My Dr never mentioned any of that. Is that something I should be doing or looking into?

Thank you for reading. Any thoughts or suggestions would be greatly appreciated. Sorry to bother everyone on Christmas. Merry Christmas everyone.