Bottle o Tamoxifen
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I have two questions for this lovely group:
(1) Is Tamoxifen the only drug that premenopausal ER+ women can take? I've been reading the bco site, and they list 2 other SERMS (Evista and Fareston) - but it looks like Evista is only for people who've never been diagnosed with bc (just doing it for prevention) and Fareston is only for metastatic cancer. It also says both of those are for postmenopausal women. Just wondering if I have any other options besides Tamoxifen. I'm in chemopause right now, but only 1 week PFC, so we haven't run any bloodwork yet to see exactly where I'm at.
(2) What specific bloodwork should be run to find out if I am pre or post menopausal? Is there more than one test? Is one more accurate than another?
Thanks all!!
And jo and schipmom - thinking about you!!!! Hugs!
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dancetrancer - I can only answer your first question. As far as I know, Tamoxifen is your only option as a pre-menopausal gal. I know others have had blood work done to determine what phase of meno they are in. I am 4 years post menopausal and can not tolerate any of the AIs. Ask your MO about this.
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Thanks Jo - I will - just trying to get up to speed before I meet with him about it!
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Jo,
I've been thinking the same thing about the hysterectomy. Or take me off the Tamoxifen. I'm 46 and pre-menopausal, but I haven't had a danged period since December, so who knows what I am anymore!!!! I don't want to have to go through this every year...or in my case, every 5 months?!?!? No, it never does seem to end. Hang in there :-)
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Schipmom - Dang! I don't want to do this every year either. Right now I have so many other things going on and I don't want to have to delay my revision in Aug. I think at this point, a hysterectomy will be the plan for next year. Going to discuss this with my GYN when I go back on Tues. You hang in as well - we will get through this.
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Charmaine - thank you for your very specific description of what happened to you. I am so sorry you had to go through that - what an extreme situation. Your story may save a life. Thank you.
Ladies - I just started reading this thread after going off Arimidex (was on 2 months after I finished rads) and my doc suggested Tamox as a sub for the Arimidex. I am ER-/PR+. I really, really dislike the way I feel on what I call "follow up drugs" but it seems this is standard protocol.
My sister was diagnosed at 35 and is a 33 year survivor. She had a mastectomy, 5 chemo treatments, no rads. Later in life she had a hysterectomy but they did NOT take her ovaries. Then later, she actually was on hormone replacement therapy! She has never had a recurrance. It astounds me they let her go on HRT. She never took any of the follow up drugs.
My survivor sister lost a daughter to BC 5 years ago, and now her oldest has ovarian cancer. The daughter that passed had a BRCA1 mutation. I am BRCA negative (had testing done for the familial mutation, plus the individual genetic testing and the BART test - all negative.)
I had my ovaries & tubes out 5/31, after my niece was diagnosed with OC. OC insurance. I am 54, post-menopausal prior to diagnosis, and my medical team felt that would not be a bad idea.
I hated Arimidex. I felt like a 75 year old woman. I went off 3 weeks (just quit taking it to see how I would feel), then onto Tamox. I had problems with my legs even thru chemo, and it became worse on Arimidex. The 3 weeks off were like heaven, I began to feel like my old self. Now after 2 weeks on Tamox I am feeling the joint pain in the legs worsen.
I know you are supposed to exercise, but when it hurts to walk, and your feet are numb from neuropathy to the point where you fall down (2nd fall required stitches) - it is a catch-22. I do work full time, and work has been a great distraction. My recovery has gone pretty well, I have a great support network ... I just want to be done and move on, and I am coming to grips with the fact that you just never get to do that. You are always looking over your shoulder.
I just want my life back. When I was diagnosed one of my cries was "when I get thru this I will be old" - and I feel old. I know I have no right to whine - so many are so far worse off than I - but still, this just blows. I am having a little pity party right now, I will get over it. Thanks for listening, and thanks again for all of your stories. You learn so much on BCO.
All the best - Debbie
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(((((Debbie)))))
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Debbie hang in there. ((((((((((((HUGS))))))))))))))
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Debbie sending you a great big hug!
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Debbie I can't blame you for thinking about a hysterectomy. I had one when I was 32 but kept my ovaries because I was so young. I have never regretted it. I was finished having children and I was miserable. Hope you can get to feeling better
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Debbie I can't blame you for thinking about a hysterectomy. I had one when I was 32 but kept my ovaries because I was so young. I have never regretted it. I was finished having children and I was miserable. Hope you can get to feeling better
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Debbie - Don't blame you one bit for wanting to go the hysterectomy route. I will have my second hysteroscopy/D&C - first one last summer. All because of Tamoxifen. I hate that stupid little white pill. I don't have a choice - I have to take this one. I am 4 years post menopausal and can't take any of the AIs. Hang in there - it does get better - HUGS!
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Jo... great big hugs sista. we are with you all the way!!! many prayers for good results.. love you sista!
Debbie.. we will be with you as well... praying for all good results!
Deb... hugs to you!!!
This Tam just doesnt stop giving does it. Thnking of you all!!!!
Mon is my 6 month check up my ONC... would love to have you all in my pocket with me
hugs to you all
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Dancetrancer - I asked my RO if there was something else I could take besides Tamoxifen when my side effects were really bad. He said no. My only other alternative was to go off of it for good. I have decided to stay on it so that I have peace of mind when it comes to my risk of recurrence. I am still working through my se's but they really are getting better over time. It is interesting that I forgot to take it the other day and the next day I felt really good and my back pain and headaches were non-existent. I still don't have the back pain and headaches. So, I am hoping all you ladies have less se's as time goes by.
Debbie - Sending you hugs!
I feel like I am mentally preparing myself somewhat for the possibility that I will have to have a hysterectomy. The day I was diagnosed with bc, my sister was having surgery for endometrial cancer. She had a hysterectomy and is now cancer free. Since tamoxifen raises the risk of ovarian, endometrial and cervical cancer, having a hysterctomy might eventually become a new reality for me. I am not jumping the gun though and would only go through with it if they found cancer down there. I am 42 and I don't want any more surgery!
Jo and Deb - I am hoping that is not the route you have to take. Sending you both lots of positive healing energy.
Tinkertude - I will be jumping into you pocket tomorrow
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Tink - I get dibs on your right shoulder - LOL! That way I can whisper calming things. You are going to do great. My 6 month MO checkup does not make me anxious or nervous anymore.
MissAngie - If I could this year I would go ahead with the hysterectomy. I am 57 and certainly don't need the plumbing or the worry. You will make the right decision for you.
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Tink - I would be honored to attend your pocket party...
MissAngie - I am in the same boat as I expect my onc will recommend a hysterectomy when I see him next month considering that my maternal aunt has been treating for uterine cancer recently. Due to the increased risk thanks to Tamoxifen, I too am looking at a hysterectomy at age 41.
Jo & Deb - Hate that you continue to have issues due to that stupid white pill and understand the frustration of going thru the D&C process regularly. (hugs)
Happy Friday to all my Tammi girls. So glad it is the end of the week as I am really tired this week.
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I'm in your pocket Tink...hugs!
Hugs to you too Deb!0 -
I'm in your pocket Tink...hugs!
Hugs to you too Deb!0 -
Well the doc office called and all testing was good, Whew!! The thing that I find strange is, that last year I was supposed to have my cervix scraped again because of the pap showing the prev 2 times she did stufff that it still was coming back that I needed to have it again. Well after spending a year at the doctors, I had enough of them I skipped out on the scrapping. Well long story short, my pap was clean. Hmmm I'm starting to wonder now how just 8 months ago it wasn't. Not that I'm looking for anything to be wrong, just find it strange.
Just a little something something to get the day started, enjoy!
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Paula - WOOHOO - Congrats on the clear results. That eye candy sure got my heart pounding this morning. You are the best!! Hugs & Kisses
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Paula: WHOAHHHHH,!! Now that's a good way to start the morning! :-)
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Paula congrats on the good test results. And love the Man Candy!!!
tink I' in your pocket on Monday.
I went today for my last fill and am looking at doing my exchange mid august. I look huge.
Please pray for my Aunt. some of you may remember that she has been battling pancreatic cancer stage IV. She is having surgery this afternoon and MO does not think she is strong enough to make it and if she does they will send her home with hospice. He then thinks she has about three weeks. She said she would rather have surgery and die on the table knowing she was trying.
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Sherry, my heart goes out to you and your Aunt. I am praying for comfort an peace for you both.
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Sherry, OH my! My heart goes out to you. I know how hard pancreatic cancer can be. It took my mother in 1995. Sending prayers to you and your family.
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Thinking of you and your Aunt, Sherry.
Tink, please count me in on the pocket get together!
Paula...glad you received good test results.
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Sherry so sorry about your aunt, I am dealing with the same thing with my BFF and her Mom and she went through chemo and radiation and so weak and they want to send her home which she lives with one of her daughters and it is so hard on their family. My heart aches for you and her Mom.
Went to a beautiful Gloucester beach today with family and had a fantastic time, much needed.
Paula love the eye candy, you really rock girlfriend and so glad you have good news. I know what you are talking about as they worry you months ago and now they say its fine. I would just take it one day at a time honey and we are with you all the way!
Love ya gals!
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Prayers for your Auntie Sherry! I love her spirit! She sounds like a real good gal. So sorry that this has happened to her. She is very blessed to have you as a niece!
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Dear all..thanks for the words of support and love...haven't been back on as I ended up flying back to Ottawa a couple of days after I wrote this....this has been an incredibly bizarre two weeks....the day after my aunt died, my best friend's mom died...Carol is the friend who was with my for my cancer surgery and after the heart attack...we grew up beside each other and I visit with her mom and dad every time I go to Ottawa...we had visited with her mom when I was there two weeks ago and then BAM..no warning...heart attack at 4pm after her afternoon tea and cookies...so I hopped back on a plane and returned to Ottawa...wake, funeral, burial and then back home and to school...dental work and mammogram this week to top it all off then got a cold/flu...
So went the smart route and took today off to breathe and breathe some more...and got the results back form the mammogram. NORMAL!!! so I am now officially a 2 year survivor.
bgirl- congrats on your daughter's convocation!!! things to celebrate are always good
Sherry - have you seen a naturopath for the hotflashes? Maybe they cold help instead of having to do more medication - I know how much you dislike having to take more...
June- menopause makes it harder to get the weight off...even if you eat the same way and exercise the same way...just sits differently.
Jo, June, Tink, Paula, Odie...WHACK!!! time for a pillow party ... I need to get some of these feelings out..either I have grown a lot inthe past two years or am stunned but the grief does not seem stuck in my chest...I am grateful to have had the memories and the time with those two wonderful women and will try to be as strong as I hit my 80's (well...I have a few decades before that but will be inspired inthe meantime)
Hugs to all! What a wonderful group of women you all are!
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Sandee - So glad you are back and big congrats on the clear mammo. Such good words to hear. Also a huge congrats on 2 years cancer free. You need to update your signature line to reflect this new milestone. Oh! BTW!! WHACKKKKKKKKKKKKK! Now doesn't that feel better? LOL
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Great news Paula!!!!!
Thanks ladies I feel better already knowing you all will be there... hugs!!!!!!!!0