Tamoxifen for gals who have not had chemo
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KEW, Thanks I have bad days on the discharge side too. Do you mind me asking who is your Oncol? I see DR John Smith there by Providence Hospital Portland. Dr Alabadi did my mastec and Dr Fortes is my PS. I really like them all and Dr Smith is trying not to have to take my ovaries even though I would gladly let him. I loose my balance and have to sit down alot too but I think that is left overs from the last two surgeries. Take car and keep smiling spring is almost here.
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Well, I hope that anyone new reading this will find some peace. I have been on tamoxifen for a month now and have had very little side effect. I am a small person and was very concerned about the dosage so I started with 10 for a week, went to 15 the second week, and I am now on 20. I did have dry eyes the first week but used drops and now my body seems to have adjusted.
I had a double mastectomy, I did not have chemo or radiation. My onco score was 19.
ps I don't miss my boobs, I am very grateful to be alive and well. In fact I feel great actually.
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Good for you Merilee - it's so nice to hear some good news. I wish you continued success! Thanks for sharing.
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Took my second dose today. Thank-you sunandsandgirl, I now know why I could not sleep last night. I got my period yesterday and today it was very heavy, not sure if that is from the tamox or having my mirena removed.
Merilee you have to keep a positive attitude. I feel attitude is a big part of the recovery. My uncle calls me all the time to check on me, he is a cancer survivor(esophagus and stomach).
Hoep evryone has a great weekend Mary.
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Forgive me if this posts twice, I wrote it already, but I guess I didn't hit submit...ok so add forgetful to my SE's.
Janet, My bs is Dr. Nathalie Johnson, onoc is Dr. Kasra Karamlou, ps is Dr. Yale Popowich, and ocno gyn is Dr. Jana Reddoch. They have all been amazing, the stars aligned for me with my docs, they've done a great job, made me feel safe, listened, and talked with me like I'm a human. Also, Dr. Johnson and Dr. Popowich were wonderful to my 15 and 20 year old sons after my surgery. I've referred Popowich to a friend ( whose child needed some ps after surgery) and would not hesitate to refer any of my other docs, but I don't want anyone I know to need them! I use Providence St. V's. I hope you are doing well. Spring is almost here, I just had a two day meeting in Newport and actually felt warm sun for the first time since October, and I watched a beautiful sunset. Love spring and summer in Oregon. PM me if you have other doctor questions.
Check out the supplements talk on March 19th given by Integrated Medicine at Providence Portland.
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Jherbes - I had hot flashes and insominia, too - in addition to tremors, palpitations, anxiety, etc.... I stopped three weeks ago and the last four days I'm beginning to feel "normal.
Sure would be nice if we didn't have to make these decisions......live with so many side effects? or live with wondering what will happen if we don't take the Tamox? Seems we're the only ones who can make that decision!! As my Rad Therapist said......whatever the decision, it's yours and make sure you can be at peace with it!!! Guess we never really know! I'm with "awb" - I know the One who holds my future!
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KEW, Thanks for the info on the supplements talk. I have had a very busy weekend (extra long one). I was chaperoning the Oregon State FFA Convention in La Grande Oregon. Sleep was something of a stranger but I think I maintained pretty well. Still taking the Tamox and things are going ok. I have started to notice more and more joint pain especially in my hips, shoulders, and sometimes my knees. I can't wait for the warmer weather to get here so I can work outside with out the threat of snow looming over me. Take care
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I started Tamox on 2/1/09 and have very little SE's. I actually saw my Onc. this morning and they drew the blood to test how I metabolize. I'm nervous and really hope I am getting some benefits from taking the Tamox. I have to wait 2 weeks for results.
I have not had hot flashes. Once, I thought I felt warm. I am having some nights when I can't sleep and wake up alot. I have had one regular period, the second one was lighter and shorter but still came in 28 days. The third came only 20 days later and was lighter too. I thought most didn't get one at all or they were more spread out. Anyone have them more frequently? This bothers me some. I have noticed that my breasts don't ache the way they did right before my period. They use to really HURT but now, nothing.
So, if my test comes back that it's working for me, I will be THRILLED! I was so scared to start and I have been pleasantly surprised. Keep me in your prayers!!!!!! PLEASE!
Oh...I had surgery and rads. DX at 39 years old - premeno.
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I had no side effects and was freaking out about not metabolizing...so I took the test. Turns out I am a fine metabolizer and some just don't get the side effects. Good luck on your test. It is a nice peace of mind.
GG
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Thank you hopefor30 and ngcm05 for your posts! It helps to know that someone is out there listening to me. I will post when I hear my results for sure! I'm encouraged by your post ngcm05. I hope I'm metabolizing and just not have the SE's just like you. That would be great! Tamox has been a breeze for me. Keeps those fingers crossed! I'll update as soon as I know.
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I just picked up my Tamoxifen today and will start it this evening. I am anxious to see if I have any of the bad SEs that are described here. I hope not!! I'll report back in a week or so.
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I got one period, it came the day I started tamoxifen. It was extremely heavy on day 2 and then normal for the rest of the time. Today is day 29 and I still have not had my monthly visitor, which is not a bad SE to get.
On April 10 day 30 I got my monthly visitor. It is late for me normal I would start betwwen day 21 and day 25. I will let you know if it lighter than last month. Not sure if change in cycle is from having Mirena IUD removed or from Tamaxifen.
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dazed - How did your blood test turn out? Are you metabolizing it okay?
My hot flashes and night sweats actually got a little worse after about 8 or 9 months on Tamoxifen. They're still tolerable, but I do have Lunesta just in case I need it on the nights I'm constantly waking up hot. I used to take Arimidex, but the se's were too bad for me.
JanMarch - How are you doing on the Tamox?
Hoping everyones having a good week!
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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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I have a question for anyone who can answer this one for me. I am on tamoxifen, I have been on it for 2 1/2 years now, but i am not consistent with it. I have never been good at taking pills, because I always forget that they are there.I was thinking about doing chemo and getting it over all at once, because of my lack of wanting to take tamoxifen. It probably sounds selfish, I don't mean for it to, but I am really bad at not taking my meds. Could someone suggest some ideas of what I should do? I haven't talked to my doctor yet because I am still contemplating this decision. Help would be greatly accepted.
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hi after a lumpectomy I had radiotherapy then on to tomoxifen. I had read about the side effects and really scared myself. I have been taking it for four months with a glass of water at bedtime. No side effects at all which is surprising as I am usually sensitive to prescription drugs .
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I have been on tamoxifen for three months. I had headaches and extreme fatigue initially. Now bad night sweats and missed period! I'm concerned about no period. I have always been very regular every 28 days on the dot. I do have a tubal ligation but am still scared! Is this normal for women on tamoxifen
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Nimm - my understanding is that it isn't unusual, but go ahead and call your Doctor if you are concerned. For me, I have not missed any periods, but my cycles went from 23-24 days prior to Tamoxifen (had been 31 most of my life but the past couple years were getting more and more frequent) to now after not quite 2 years on Tamoxifen they are 35 days in length, so while I am still getting them they have most definitely been affected.
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