Bottle o Tamoxifen
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I'm coming up on a year! And yes, I have had all the different side-effects, but they have mostly come and gone ! I think it takes time! Maybe I'll get some new ones, but they don't seem to hang around for very long! I take it in early morning, when it's quiet, & I have a couple chips with hummus AND my cup of coffee with the pill! Kind of like I look forward to it, because I know it's "watching over me".....
I think I've also figured out, to take my vitamins BEFORE dinner...like around breakfast & lunch.......that way I don't get that heart-burn in the middle of the night!
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Thanks Chevyboy and cs7777 for the positive feedback! I needed a boost! I agree with Chevyboy that it's a sign that the medication is doing what it needs to do, but I was surprised at how quickly I had SE's. I really thought it would take a while to build up in my system. So far things aren't too bad and if they go away in a few months I can live with it. Did either of you have emotional ups and downs with the tamoxofin? My onc just told me about physical side effects, but I have seen a lot of women here talk about emotional issues.
Is there any relationship between the SE's, the intensity of the SE's and being pre or post menopausal?
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I am hoping the side effects of T get better with time, that is interesting about radiation causing anxeity. I hadn't heard that before. Thanks for your reply.
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Hi all:
Just started T a few months ago and am learning so much great info here. I haven't read all of the hundreds of posts yet and wanted to ask what particular tests are necessary to take as a baseline to compare to later. What types of tests are you requesting? Do your doctors direct you to the tests or for the most part are you initating the tests? I have heard we should get a uterine ultrasound, an estrogen count, a full gyn exam when starting T. Have the veteran T-takers any opinions? I am trying to make sure I have everything covered now I'm on the big T. BTW, I got my doc to prescribe two 10mg vs. 1 20 mg. for the SEs of dizziness. Thank you.
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Whitedove:
I haven't had any testing done outside of a blood test. I am having a bone densitiy in June when I go back to my onco. but I was post menopause when I started T about 2 months ago. I was put on T because of osteoporosis in left hip.
I do have to say the SE's have been minimal and I am sure it is because I have been walking 1.5 to 2 miles every other day. That also helps with my osteoporosis..no pain there.
Good luck on T and I'm sure there will be others along with some advice.
Jan
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I'm going to be starting Tamox soon. I have scheduled for myself ( on my own recommendation!! lol ) an eye exam with pictures (I forget what these are called) and a transvaginal ultrasound. I have asked about a starting estrogen level at my Onc's office but was told not necessary. I will ask my Gyn about that when I see him though and maybe get it done there. I also had the blood clotting testing done as well as the metabolizing test done. I have found that I am an extensive metabolizer so guess that's a good thing in the world of Tamoxifen. I do have low percentage of protein C but they seem to think that is due to the IV induced 'trauma' on the top of my hand from the BMX surgery. I got clotting there. Superficial thrombosis. All three docs (BS, PS and Onc) think it is trauma related and not an indicator of clotting issues. My Onc thinks the levels are screwy because of that in my body at the moment. I'm still not 100% comfy with that take however. (I am 64% out of a range of 74-150 I think it was....so just a little low out of range) All of the other clotting tests (about 5 of them) came back normal.
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Thx everyone for responding to my question about halving my Tamox. I'll try first taking it in the am again, then if that doesn't help I'll try the half dose - am & pm.
Had my first mammogram (last week) since the dx and it was all clear, today I saw the BS and she removed the port. Soooo glad that's gone. Not that it bothered me - just was a constant reminder. The 17th will be my one year mark since surgery, wow it's nice to have the year behind me. Very grateful.
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ECT
Congratulations on 1 year!!! I was fortunate and didn't need a port or chemo so I'm very happy you got rid of yours.
I take the Tamox mid day and it seems to work ok for me. But my onc did say some take it 1/2 and 1/2 and that is how they originally prescribed it - I guess, when it first came out.
Congrats again!!
Jan
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ECT Congrats on your first clear mammo!!! You and I are close in diagnosis and surgery dates. Hitting a year from diagnosis was more emotional than I thought it would be but I am glad to have a year under my belt. My mx anniversary is 12/23 but I will be prepping for exchange revision on the 27th...third times a charm!
Di
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ECT - Congratulations!!! I got a clear mammo last mo - my first 6 mo follow up - such a relief. I had chemo but opted for IV instead of a port. Had 12 infusions in all - just finished and only 14 more rads for me...then Tammy in Jan.
DiDel - Best wishes for a smooth exchange!!
I so much appreciate all the words of wisdom here. I think I will do the same and start with full pill in the am and see how it goes. I'm thinking positively!
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All these clear mammos!!! How wonderful and congratulations!!
Jan
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Wow! You positive gals just get me smiling!
That's what we're all here for, to maybe help someone else with their questions! The only test I know of is the tumor marker blood test, from your oncologist...Also, Tamoxifen is better for your bones, than say the other types of hormone pills! Because you still can produce estrogen, even after menopause, even if you don't have all of your "girl parts" ......And that estrogen IS good for your bones....The tamoxifen blocks estrogen from feeding any cancer cells, anywhere! The only other test is the cyp2d6 test....that shows if you are a good metabolizer of tamoxifen. But a lot of Docs don't do the test, thinking it isn't necessary.
June, and DAhope....about your "fogginess" stuff...I've been taking this for a year, & I don't know if Tamoxifen has anything to do with it, but my mind seems to "process" thoughts better! I can re-call names that I'm looking for, even organize "stuff" better around the house. I told my Daughter about this, & she wants Tamoxifen now, ha! Maybe it's the vitamins? But I want to think it's the T pill!
EastCoast girl..... I just had a complete eye exam...I think you're supposed to do it more often than I, but my last one was 6 years ago! Good thing was, nothing has changed! My eyes are great, and I only use glasses for distance... Just always remember to wear sun-glasses to protect your peepers from that blazing sun!
It's so fun to read what you gals post....glad you are all doing well! xoxoxoxoxoo (mostly!)
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Congrats ECT on your clear mammo, what a sigh of relief and just in time for a better Holiday Season......
ChevyboyI wish I could say that it is the Tamox for sure, but no-one really knows....it could be that I am starting menopause and maybe I can blame that.......I suffered from my first migraine yesterday and had the aura that lasted over 20 minutes, still not feeling 100% today. Called my doc who referred me to my Oncologist and then called them and I am still waiting for a return call. I only had 2 migraines in the past and that was way back over 12 years ago. I so feel bad for the women who suffer from these on a regular basis, as this really knocked me on my tush yesterday!.
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chevyboy - wow!! you can remember things better and organize better since being on T how wonderful!! Since I started it in late Feb my memory has downgraded... haha! I have a harder time recalling names for things at times, find I lose my words or names for items usually during a conversation. Before T I was perfectly fine. Never had a problem at all. I did manage to go on a diet and lose "some weight" but reached a plateau and no more weight would ever come off which I contribute to T. I also had some problems with bone pain in my knees and I tried Glucosamine Chondritin but it didn't seem to help so I stopped taking it. Now that side effect seems to have resolved itself. Also, had a little prob with constipation but that too has resolved itself after a period of time. I guess the side effects of the medications are very subjective.
Renee
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I have been on Tamoxifen for about 13 months now and have suffred very little to almost no side effects except for the hot flashes which started before T. during chemo that put me into menopause. So far still no sign of getting my period back :-)) I guess that is good since my BC was 95% estogen. By the way if anyone nees help with their hot flashes acupuncture REALLY helped me !!
Anyway I have recently developped problems with bloating, I was wondering if any of you know if this can be caused by Tamoxifen ??
Thanks
Marie
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Marie,
THanks for the tip about acupuncture. When you went in to see the acupuncturist, how did you describe what you needed to have done?
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Whitedove: I just told them I was having hot flashes from chemically induced menopause and Tamoxifen. It took a while to work well but it does work. I was having maybe 10 to 15 MAJOR hot flashes a day and a couple at night. Now I have maybe 2 or 3 small ones during the day and one at night. At first I was going to the acupuncturist once a week for maybe 6 to 8 weeks and then gradually went less and less, now I go about every 6 weeks. Like I said it worked from the beginning but the progression has been slow. I really recommend it as it is a natural way to deal with this issue.
Good Luck to you,
Marie
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Marie:
I was looking at your history and can I ask why you got chemo with a oncotype of 16?
Jan
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Here's one for anybody, I get a couple of hot flashes a day, one around 5-6PM and one around 3AM and it doesn't seem to matter when I take the tmox. But I also get cold flashes occasionally, anybody else? If I can manage to have them during our hot summers, I will be a happy camper.
For anybody having anxiety or trouble sleeping. My Naturopathic Oncologist has me taking 3 - 500mg Glycine capsules every night before bedtime for help in getting rid of the toxins in me, but the SE are, and I'm not making this up: reduces anxiety and sleepiness. They worked the first night I tried them and have continued to do so for the 6 weeks I've been taking them.
Also for anybody with skin problems and NO problem with lymphedema or of developing lymphedema, she has me going to the sauna as many times per week as I can get over there. I have always had problem skin, except for the 8 months I was pregnant with my son, and my face is now almost entirely free of pimples of any sort now. Bumps that had been under my skin for years, made their way to the surface, and are gone. The whiteheads that had cropped up on my chin since starting the tamoxifen, are all gone entirely now. I can go out in public with no makeup for the first time in years and years.
My son is home from school and my daughter and future son-in-law will be home next week and I am so looking forward to having them all home this year, especially. My wish and hope for all of you and your families is a Merry and Blessed Christmas and a truly Happy and Healthy New Year. I keep all of you in my prayers every day.
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phxsunshine
I am also experiencing the cold flashes. I'm almost always warm, so was especially worried about what hot flashes would do to me. Since starting tamoxifen a few months ago, I've gotten the ocassional "warm" flash, but quite a few cold flashes. It feels different than just being cold. More like being cold on the inside. Like you, I'd love to get those in the summer...
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I've been having cold flashes for the past year, hhhmmmm, been on T for a year, but the Dr's tell me it's not on the list of SE's. Have lost about 1/2 the hair on my head, but Dr's say it's not from the T, hhhhmmmm, hair grew back in nice & thick after chemo, I figure by the time I've finished another year & half, I'll be completely bald... again.
The chills are the worst. I just started on 900mg of gabapentin, it helps tremendously with the chills, hot flashes, sleeping & headaches. Does nothing for the hair loss.
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mfrog, I'm only a bit over a month on tam so i can't vouch for this yet but several women have sait biotin helps curb the hair loss so I'm trying that. So far ok.
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Another query for you ~ Is anybody else feeling extra emotional around the Holidays? I find I tear up at sweet things so easily. Maybe that's good? I appreciate everything in life so much more now.
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Phx: I'm always emotional and tear up at all sorts of sweet things...and TV commercials. It is a good thing!!
Life is good and I, too appreciate things so much more.
I stay away from negativity, I have no room in my life for that. Not once, since my dx did I say "Why Me"? I wanted no pity party...just let's move on and get this fixed so I can move on with my life. Of course there is a 'new norm' but I'm learning to adjust to that too.
So, yes being emotional is a good thing.
Jan
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Thanks for the reminder Chabba, I had forgot about Biotin. I have an appt with onco next month & I'm also going to ask her.
Jan, I'm with you, never once have I said "why me", I never wanted that whole pity thing, I wore a wig while on chemo, no one even knew I was having it. Everyone commented on my new haircut, said how great it looked. We went motorcycling all the summer of chemo, if I didn't feel great we didn't go, if I felt good, off we went for the day. You're right, life is good.
Phxsunshine, I am more emotional too, I was way worse during chemo, but not as bad now, but I cry at those commercials, you know the ones!
Cheers! Dee
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Wow, this thread is so long, LOL. And I want to give hugs to every woman here. I am scared to come here. This summer was the surgery, and I am now on Tamoxifen. This place makes me cry now. And yes, holidays, end of the Year.
What hurts now is I feel a loss of libido. Dead. I have always been a very sexual person, and this is a blow on top of everything else. I figure this year has been through so much stress, fear, loss of my breast, etc. Part of this is from all of that, from my depression I already had. But for goodness sake, sounds so silly, but that was sort of the last way of feeling feminine.
I know others have been through so much. No chemo for me. VERY lucky all around. I'm just venting. But thankful that all of you are here. I hope that things will get better with the Tamox, though I've heard this. This seems to steal one small joy after another.
I should be thankful (but it may be because of the antidepressants I was already on) for what seem to be minimal SEs. Initial constipation for which I've really tried dealing with, with diet. Hot flashes, not terrible, mainly at night. It's loss of libido that hurts me so much.
Hugs to all of you. Have the best holidays ever, no matter what.
Love, Bella
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Hello little Bella.....Don't fret none about Libido! Go ask your Doc. and tell him the problem! If I start giving advice here, I might scare you gals half to death!
But I will anyway.....Just change things a little....like go rent a movie, or just work at it a little more. There ARE "things" out there that help with that....At MY age, I should be sittin' here knittin' instead of talking about Libido....ha, ha! And yes, this time of year especially, our feelings are just all over us! It's okay to feel weepy, just like it's alright to walk outside & watch it snow in the dark! It just lifts your spirits! I did that the other morning, & when I looked towards our porch light, the snow looked like little diamonds falling! So I figured that was like a gift to me!
We've come through the worst part....I mean now we are on Tamoxifen, & that will help take care of us...Some of you gals have lost a lot more than I....but you can still go on feeling blessed & so lucky....and you can encourage more women who are going through the same thing.
We're all together here, & I'll always be here for you.....xoxoxoxoxoxoxo
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well said chevyboy! Thanks
Jan
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I agree with Jan, well said Chevyboy!!
Bella I too had an incredible sex life and now no desire what so ever, DEAD is the perfect description as one woman said many threads ago.......My husband has to work alot harder these days, but it is all worth it in the end.....I too need to talk to my Gyno or Onc and ask what I can do to help and or take. I too had constipation and now I am off my Colace as I feel I don't need it anymore. I think the first few months on the Tamox were the worst for me and constipation. I tapered off at around month 6 and so far so good I haven't felt the need to pop one.
I hope everyone has a wonderful Holiday......I just wish there were snow here for my little ones.
June
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Phx: When I get the hot flashes I tend to get cold right afterwards. I think it is just my body adjusting to the temperature swings.
My flashes seem to be a lot better since it is winter now and cooler outside and therefore inside as well.
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