Bottle o Tamoxifen
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Hey Jules - so sorry to hear of your hassles. Bugger. Do you eat before you take your tablet - get a big full belly - and the glass of milk is a good idea too. You won't stay sick for months - this should just be a crappy "settling in" - hope it settles soon Honey. Must be up to tablet 3 now.... we can do it.
Shan you made me laugh - not a laughing matter but your humour in the face of all this is great. As for "just in case" with the port - I think not - get rid of it now. Good luck with your first pill, its a bitter pill to swallow the first one. As for getting pregnant, yeah I'm sure you are feeling all sexed up after surgery, chemo and rads!!!! I am having my exchange surgery on Monday - yippeee - can't believe I'm excited about more surgery but I am. Can't wait to get rid of my rocks.
By the way everyone I am 2 weeks & 1 day into my next try on tamoxifen and things are fantastic. I feel so damn good I am beginning to think that the splitting of the tablet is not working! Yeah, nothing like being paranoid...
And welcome all you newbies onto the tamoxifen train - lots of carriages and a few bumps along the way - but such wonderful passengers to travel with.
soft hugs
Helena
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OMG!!!the nausea still here today...unable to eat yesterday and this morn. Called my Onc. since compazine did not work...now I get to use a lovely suppository..lol...hey, if it makes me feel better..I'll use them up!!! gotta eat today..somehow....jules
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my onc. just phoned and said that all this is normal in the beginning...my body is trying to get use to it. Encouraged me by saying that it should be temporary. Says se's can start the first day... I am staying possitive and will not get off it.
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OK, last night was bad! I was so hot, couldn't sleep and my ac is putting out the cool air. There was my dh all cuddled up in the covers, sleeping like a baby (I'm jealous). Just between us, I really wanted to wake him up, I want his sleep....why should he have it all??? It's just not fair!
I'm tired of hot flashes, night sweats and feeling like crap. I miss my sleep and I want it back... NOW!!!
Ok, I had my say, thanks for listening!
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Hi to all the new riders!
Julies, I had nausea as well. It started immediately and lasted for quite some time. It is now very intermittent (15 months on the train). I found keeping something in my stomach helped me - so I carried the mini saltines everywhere I went. It sounds like yours may be a bit more intense than mine. I hope you find relief soon!I also have what my onc calls "angry organs". I have pelvic congestion/pain that fluctuates throughout the month from mild discomfort to stabbing pain. My poor ovaries. This is all due to the tamoxifen. It hasn't been an easy ride for me, but I weigh my decision to continue every three months. In reality, we all make that decision every day that we take the little pill.
Munchy - What? Another surgery? What is going on? I don't like how your onc said she may have "missed" something. Let us know what is happening my dear.
2New - so sorry that the sleeping has been difficult. I got a prescription for Temazepam which is a sleeping pill. I take it about once a week to sleep through the night (and the sweats). This way, I'm assured of at least one night a week when I sleep well. Maybe worth a try?
Barbie
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Running out to get the Zofran for nausea...it's gotta help..i'm hungry!!! but qweezzy...jules
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Had my 1st mammo this morning (6 month follow-yp) ..... ALL IS OKAY !!!!! P A R T Y ... P A R T Y... P A R T Y !
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Congrats Marlenet!!!!! Haven' t had one so far...6 months out myself..so happy for you!!! jules
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Okay...guess I spoke too soon the other day about my SEs improving. Night before last I had the worst night sweats EVER! In addition to our ceiling fan and AC (we are in TX after all!), I now have a small fan on my bedside table. It seems to help a bit last night if anyone wants to try it.....
Helena - I'm so happy for your exchange on Monday! It seems like miy TEs have been in forever - and I didn't have chemo or rads. I was just really flat and didn't have much skin left, so PS is moving slowly. I have my 5th fill on Friday (am now at 175cc) and am hoping he'll give me some idea of date for exchange. These turtle shells have gotta go!
One more question......does the libido issue ever improve? My dh is a real trooper, but....well, you know.....!
Valerie
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congratulations Marlenet!
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ZOFRAN..the miracle drug!!!!!! Used for chemo pts. nausea....it is the bomb..feel sooo much better now. Actually able to eat one of my fave southern dishes....tomatoes and elbow noodles..yum yum..feel so good now that I have eaten!!! chat with you wonderful ladies tonight...jules
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Valerie, you should check out thread called "I want my mojo back", also look at all my posts by clicking on my name, as this issue has been one of my biggest problems, which I've complained to my Med Onc about a few times.
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Well done Marlenet - whoooohoooo.
Thank god you are getting some relief Jules
Valerie, yeah I'm pretty excited. You must be getting pretty close to getting an exchange date since your op was January but better to take it slowly and get it all sorted now than worry after the exchange. Good luck on Friday. And so sorry to hear about the night sweats
As for libido - well it hasn't got any worse!!! I can't help you there as things are pretty grim in our house - we are loving and hug and kiss and talk about it but that is about it. It is probably more my self esteem about my body than anything else. Would be great to turn off this brain sometimes. Like Rose mentioned - there is heaps on these forums about it. One of the biggest side effects I'm afraid.
soft hugs everyone
Helena
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YAAAAY Marlenet!!! The BEST news!
YAAAAAY Helena- feeling fantastic after a two week break, awesome.
YAAAAY Jules eating again!
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Congrats to Marlenet!! Yeah!!
Jules, I suggest crackers as well. Keep them on hand to settle your stomach. Hope you feel better.
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Already had 2 more meals...feeling so good...boy am I positive again now!!!
Well....except reading about the labido going bye bye.....uuuggh!!!...jules
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One thing at a time, Jules!
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Makraz,
Your right..I just dealt with one...but..but..but.I don't want to lose that...jules
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I have been sharing PM's with a couple of women on here:::
Now I feel like I don't deserve to be here with you ladies....I am whining about SE's while others sit in a hospital bed or home alone in a wheel chair...Yeh,,I did have IDC..but since I chose MX..I only have to take tamox now...So fortunate!!! And also, I had a breast aug. in 06' and the GS was able to leave my implant in place...so I have not expienced chemo...rads or the losses you ladies have...I feel toooo fortunate this time...that is why I must take the tamox......jules
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Jules, everyone has there own story. We are all lucky in our own way, even though we probably don't realize it. I'm glad you are feeling better. We need to help everyone of our sistahs smile everyday. Some have been through so much! They need us and we need them.
Of to bed, Ladies! Have a great night.
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yeh...off to bed myself since DH just went...gotta do what can before its all gone....lol...lol you know what i am talking about ladies!!!! Sleep deeply tonight...I sure am loving everyone on here!!!!
So glad I found YOU!!!!............jules
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Jules,
I also feel like you sometime..a bit of a breast cancer fraud.
I had IDC and have had Mascet. but was fortunate to skip rads and chemo and go straight to tamoxifen. Was lucky to have found it early.
Sleep tight
Viv
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I've been taking TX for 7months, now and my onc. finally suggested I get the CPY2D6 test, so went after work, and got the blood test. All day I couldn't get it out of my mind, it's just a blood test, I know, but kept hearing him say, "Tamoxifen is the only thing standing between you and a recurrence for the next three years"...nice. Now I'm afraid of not taking the d%^& pill. Maybe these awful hot flashes are to be embraced.
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I posted "tamoxifen fear" some time ago...It is finally rolling alone...try it out Leggy....decided I cannot sleep...DH sleeping now...too bad..no Sex!!! Hung up on this site b/c you ladies are supportive...I am still a little afraid of the tamox..but taking it at night right on time...didn't even put any thought to it tonight...no crying and fear tonight.....jules
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Ladies...Makraz told me a lot of you are on FaceBook...Forgot I started one!....It's under
JULES4EVR39
Look me up...would love all the friends!!.........jules
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Just got home from work - damn hate this time difference.
Just on feeling like a fraud - as I am one too - bilateral with immediate reconstruction - oncotype 6 - no chemo no rads. I was told by my stage IV support group friend that we can't compare each other - we can't be supportive that way. I was crying and whingeing and that is what she said to me. So humbling but so true.
Everyone wants a treatment plan like us - we are lucky - sort of, if you know what I mean. We are doubly lucky to be amongst each other.
see you on facebook jules...... soft hugs helena
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Hi Everyone,
I am beginning to explore the possibility of taking tamoxifen. It is a selective estrogen modulator which specifically targets breast cell estrogen. So does that mean it does nothing to downregulate estrogen produced by the ovaries? It's confusing as I begin to research this. Also does anyone know why tamoxifen can have negative effects on the uterus/ovaries? Are there any studies looking at this question? As I understand it aromatase inhibitors are not used in pre menopausal women (me) because they dont have an effect on ovarian estrogen. Why would this matter if tamoxifen actually has no effect on ovarian estrogen either?
Any thoughts to help get my head better around how tamoxifen works?
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Hi Cleomoon - tamoxifen doesn't stop the ovaries from producing eostrogen but works as a "pro-drug" (which means it has to be metabolised) to inhibit eostrogen from getting into our cells, not just in the breasts but throughout our bodies. As for why there are side effects for the our ovaries and uterus I am not sure but there is a heap of info on various threads here which can help, you can either look around or I am sure you will get heaps of posts here from ladies more informed than me.
It is an amazing drug, regardless of its side effects, and pretty much the only option for us pre-menopausal women as with regards to adjuvent treatment.
You can also just type "tamoxifen" into google or another search engine and you will find millions of responses.
good luck
Helena
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I don't think its the actual treatment you get for your cancer that determines "how bad" your cancer diagnosis is and being here and supporting each other. Yes, the SE's from each treatment suck and we support and help each other out, and some of those SE's are long lasting and we help each other out. But, it is the profound change this makes in your whole life that is the real issue. The vulnerability and fear of recurrence and permanent changes to your body. The knowledge of mortality that although we all knew was there because there are no guarantees in life, came up and smacked us in the face before we were ready. I think that is what brings us all here and not whether we needed chemo or rads or not.
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kmmd, very well put. I agree with you 100%!
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