Bottle o Tamoxifen
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Hi all. Quick question... My periods on tamox have been anywhere from 28-45 days. This month it started again after 18 days. Do I need to worry???? The onc's nurse said see what happens next month, it may straighten itself out. What do you guys think?
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Louishenry, do you mean your periods last 28-45 days or that it cycles 28-45 days, I would talk to your onc and make sure that the onc nurse talked with your onc. my onc told me it could change cycles....but if you are constantly bleeding, that poses for to much blood lose and if you are cycling to often this poses for to much blood lose as well....are you tired and pale?
It could warrant some blood work/
God Bless!
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Oops, I forgot to mention that my swooshy discharge is not red blood. It's white, just like pre-mens, but a lot. It's slowed down a little, but I still wear pads just in case. I'm waiting to see if it will eventually stop. I kinda like it better than dryness because sex is not painful anymore, and my dh is happy
. Amber, I didn't know that Tamox stimulates ovulation? So does that mean we're supposed to have our periods? Arrgh, I'm so confused 
Thanks!
Aurora
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Aurora,
I think you are describing vag discharge, but not bleeding, right? I've had the same since Tamox. Twice, I was treated for yeast, but the discharge has gone away after 7 months on tamox. Take heart!
Basha
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Auora,
I think some women have periods and some are irregular, I guess it depends on the ovary...
tamoxifen was used as a birth control pill initially, but failed, and did not prevent ovulation, but on this website breast cancer.org on the tamoxifen data it states it stimulates ovulation...maybe that is one of the reasons premenopausal women can take it. and maybe that is why some women experience periods when they are considereed menopausal.
white sounds like yeast, but if it is mucous like when you ovulate, maybe it is just the tamox stimulating ovulation, hope it slows and stops.
Amber
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Hi Amber. Sorry I wasn't very clear. No, the cycles are only a couple of days. But, they are very irregular. Usually 28-45 days apart , but this month was 18 days apart. Nada
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Nada,
I believe that Irregularity is common...probably following the onc. nurses advice if just fine,
Hang in there!
Amber
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Hi All- Am new to the board. Have already had bilateral lumpectomies and node removal, chemo (adriamycin, cytoxin, taxotere, and radiation in the TOMO. Have been on Tamoxifen for a year now and just can't take the night sweats, leg/arm/pain and cramping, weight gain and depression any more. I stopped taking it a couple of days ago (my onc doesn't know yet). When can I expect some positive changes?? Thanks---MaryEllen007
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my oncologist explained that while on tamoxifen, 25% will continue to have normal periods, 50% will have irregular periods, and 25% will stop altogether. Mine becamevery irregular and very light, so I got in the habit of taking minipads with me everywhere, just in case. I did have large ovarian cysts develop (which ruptured, ending up in a total abdominal hysterectomy), but my gyn said tamox didn't cause it. I'm not sure about that, but if it did, it is a very rare SE. From my experience, I would recommend a yearly transvaginal ultrasound to monitor both the uterine lining and the ovaries.
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MaryEllen,
I would let your onc know what you are doing. Remember, they are there to support and help you but you have to let them know what's going on. My onc recommended Vitamin E to help with the hot flushes. Tell your onc that you're having problems -- there are other things that can help.
Aurora,
As for the discharge, I had some of that too. I found that a vinegar/water douche helped. It's very old school but totally natural with NO side effects. Fill the bag with warm water and one capful of white vinegar.
Amber,
My period has stopped all together -- since January. My onc is not surprised but is monitoring my blood work, including hormone level. But I agree with the U/S to monitor too.
Hope everyone had a great weekend. I was in the baking car -- AGAIN. Sour cream coffee cake this time. I think I need to do one more then I'll be ready for the dinner party next week.
Hugs to all,
Deb
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Deb, I think it is great that your onc. is monitoring your hormone levels, I would like to have mine monitored as well...when I asked my gyn...he said no...my onc said he only monitors cbc and cmp, I requested the tamox metab. bled work and he agreed...but I sometimes believe that insurance affects what the doctors are willing to keep a check on.
Well I just took a retry on the Tamoxifen this morning, I need to keep busy to not think about the complications.
awb, I'd be suspicious of the tam causing the cyst too, thanks for the advice on the trans U/S.
God bless all.
Amber
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Thanks, Deb. Will talk with him as soon as I can. My daughter just called and grandchild #3 is on his way and I need to pick up my other 2 darlings.
Mary Ellen
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No real SE's so far on the Tamox. Having a hard time though remembering to take it. Am supposed to take it twice a day, and so far (after almost two weeks), I have forgotten three or four times! How will I do this for five years?
Deb - is the Susan B Komen fundraiser the 3-day walk? I originally signed up to do the SF Bay Area walk here in Sept., but chickened out because of the fundraising commitment and the distance. Instead, I did the Avon 2-day walk, which I just finished yesterday. A little easier in both fundraising commitment and distance. We walked a marathon - 26.2 miles on Saturday and 13 miles on Sunday. It was an amazing experience - the comraderie you feel among everyone walking is like nothing else - and you feel so good afterward. I raised almost $3000!
Harley - I'm so sorry you're having to go through all this on top of what you've already been through. It just doesn't seem fair. I agree with you about the hysterectomy - it just makes sense to get rid of the defective body parts that you don't need anymore anyway.
I'm off to Las Vegas with my husband and kids on friday - can't wait!
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Hi All - I am now finishing up on my first bottle of Tamoxfin. I saw my medical oncologist last Monday. We talked about some of the effects, such as the hot flashes that I've experienced. They also seem more pronounced if I have had a beer or two. I am overdue for my period, only 5 days, but the doc said that may also be affected by the medication. We'll see what happens. My weight has been pretty steady, no increase or decrease. I continue to walk each day, but have not yet gotten back into lifting weights. I think it's too soon.
Tomorrorw I'm heading back to the medical oncologist's office to meet with the genetic counselor to start working on the breast/ovarian genetic testing. My insurance won't pay for it, but this counselor has had lots of success with insurance appeals, so I'm hopeful that will happen in my case! My sister, who is a physician assistant in CT, is going to UConn for her testing on 7/22.
Today was my first day back to work ... I've had 3 months off and was ready to get back. It was a good feeling!!!!
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My onc's P.A. appt went well. She said that she doesn't think it is anything to worry about, but IF it were HER, she would want to see this gyn onc that I will be seeing. She called his office and they have scheduled me to see him on July 22nd so I will still have to wait ONE more week! UGH! Also a woman I work with also saw this gyn onc, for her hysterectomy and she says he is very good.
Now if I can just get through this next week, without losing my mind, or having anything else happen! I can't take anything else. I am overwhelmed with all these dr. appts. and they all want me to have more tests, more tests, more tests!
Hugs
Harley
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Oh, man, Harley--
Hopefully the week will go quickly...the wait is the worst! Sending prayers and good karma your way for a positive experience w/ this new dr. You've been through more than your share of crummy/uncooperative drs.!
Murph, glad you had a good first day back at work. A milestone! Don't overdo...give yourself some time to get back into the swing, if possible.
I've had some clear discharge since being on the tamox...I usually wear a mini pad but it isn't too bad. Hopefully I had my last period in Sept. '07...when I go to my onc at the end of the month he'll check my blood levels and see where I am in the whole menopause thing. I'm banking on not having another period...enough already.
Speaking on seeing the onc, this will be the only time I see him probably until next summer (we'll be talking about that...should I come back at Christmas?), and I want to be sure to cover as much ground with him as possible. Besides tamox SEs, general health, etc., what should I be asking him or talking to him about? He's wonderful, and will spend as much time with me as needed...but I want to make the most of it. Just wondering how your appts. go and what topics are covered... This probably sounds stupid, but I haven't seen him since Nov. and only talked to him once on the phone in between, when he prescribed the effexor. I'd appreciate any help you can give me.
Computer access will be spotty for the next week...my sister and I are headed to Atlanta tomorrow to see relatives. As I think I said before, I'll be in the barbecue car! Take care--
Lynn
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Harley, the week will go by faster than you think...I have had a ? lump found 3 weeks ago, that all 3 of my doctors checked last week, I had to wait 2 weeks before any of the appointments, waiting was hard, and now they just want to keep an eye on it....so I don't feel in the clear. My goal is to try to keep busy and be encouraging to those around me. It seems to depress those around me when I share my concerns, especially my DH, sometimes others don't even seem to listen...the best thing is to share with you gals and pray to my Lord Jesus. so try not to worry (easier said than done), stay busy. keep us updated...I'll be praying for you.
Lynn, I am wondering about the followup visits as well, Maybe it is different for each diagnosis scenario. stage one stage 2 etc...I am new at this too...and have wondered the same ?.
Maybe you could post a new thread, follow up stage one...I am curious to know the follow up for tamoxifen. Have fun in Hot 'lanta.
Murph, did your sister have cancer too? My sister had BC 9-10 yrs ago...hope the genetic couns. goes well...keep us updated...I'm not ready to go back to work....but we need the $...the bills are piling up....but I work relief nursing in a local emergency room...stressful....I have told them I am able to pick up hours in the middle of JUly...but I haven't heard from my supervisor, even though I have emailed her to let me know of any needs...
Munchy, I'd like to have your problem trying to remember to take my Tamox...because I don't want to really take it...so I dread it...and when you dread something it is hard to forget it. so wonderful about the fundraiser, great job!
God Bless all,
Amber
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Lynn,
thanks! Do you only see your onc once a year now? WOW, that sounds great! I am still on the every 6 month plan, but the way they figure it out, I go every 5 months... I don't understand, but I guess it is better to see them more often at first, especially with this new development.
I just went to see a new opthalmologist, who told me that he thinks my optic nerve looks weird, it looks like someone who has GLAUCOMA! I am really close to having a breakdown, I think. I really can't take anymore bad news about health issues that I have or MAY have... I think I'll go hide under the bed with my cat, Spike.
Amber,
I have been boring my MIL whenever I mention how scared I am about all this and my dh is getting tired of it too, but more I think because I scare HIM, and he just doesn't want to think that there could be anything else wrong. I have reached the point where I just can't take another thing going wrong with my health, and then yesterday, I went to see a new opthalmologist who said that my optic nerve looks like someone who has glaucoma! I can't take anymore! I know I will have to go get this checked, but I just can't take anymore stuff going wrong with me! I also am not sure if they did a very good exam. From the minute he walked in the room, this dr. started in on me about my insurance, asking me WHY I had Tricare PRIME and not STANDARD? I told him that with PRIME, I pay only $460 a year for BOTH me and my dh, and then we only pay $12 copay, not like with the standard plan, where you don't pay the premium, BUT you pay deductibles, PLUS I think you also pay the difference between what my insurance calls 'ALLOWABLE CHARGES' and what my dr. charges... so standard works for my dr., but not me. I have never had a dr. ask me about my insurance, and it makes me wonder if he may just want to make more money by doing more tests.
Sorry for rambling!!
Thanks for the prayers! I will be praying for you, too. GOD never gets tired of hearing about our problems.God Bless,
Harley
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Harley, 'love the rambling, It makes me sick to think about the insurance/doctor thing.After all you have been through and he has the nerve...Something else is probably bothering the Opthamologist.
we loose because we pay so much for insurance, the docs loose because the insurance won't give them premium. I think the insurance people win...
is glaucoma a thing that Tam can cause? I thought cataracts were the poss SE.
Hang in there Harley...I love what you said about God never tiring of hearing us. Really increased my faith...Thanks
Amber
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Amber
I am glad if I could help you. Right about now, though, I am thinking that GOD overestimated my strength, because I just can't take ONE MORE THING! I had a breakdown today at the dentist, of all places! I know it may seem like a small thing, but EVERY time I go to the dentist, I have at least ONE cavity, and it really is getting me down. I didn't go for 3 years, and I have THREE cavities! I told my dentist that if I go back in six months, I will have ONE cavity, because EVERY time I go I have at least one cavity.
Oh here I go rambling again... sorry!
I read that Tamoxifen can cause cataracts, and that is the only reason I went to see this dr., because I wanted to make sure I didn't already have them, since I have three siblings who have cataracts. Then he came up with this glaucoma .... I don't even think they did the test right, anyway because I am very sensitive to people sticking things into my eyes, which is odd, since I don't mind putting contacts in my eyes, when I used to wear them. Now though I have very dry eyes so I don't wear them anymore.
I know that GOD never gets tired of hearing from us, and that is what I need to remember, since I can't share my fears with my MIL or my dh. I just hope that HE remembers that I am not as strong as HE thinks.
Thanks!! God Bless!
Harley
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Harley,
The Lord knows you aren't that strong, he will provide a way out.
I have a good story on the cavity issue....I went to the dentist a while back, and he was checking my teeth and told the hygenist to put a check on one of my molars....apparently he was going to check it in 6 months to see if it wouldn't develop into a big cavity....well I had used flaxoil supplements occasionally....and noticed that my gums and teeth looked better even though I didn't change my dental care....so a few weeks before going to the next dental visit I started supplementing with flaxoil...at the appointment the dentist and Hygienest told me how good I was taking care of my teeth and that the checked tooth was fine....
so it might be worth looking into...
I know flax is controversial with er+, but the studies I have been lately reading is that it helps Tamoxifen to work better and that it helps reduce BC tumor size. I believe it has helped my sister stay in remission of her ER+ bc for 9-10 years..and Diana Dyer used it in her ER+ BC and took tamoxifen too.
Oh after the second try of tamoxifen (yesterday), by night time I noticed how dry my eyes were. and you have dry eyes too....my sister tried tamoxifen and said it made a film over her eyes, and she had to keep wiping it away. she tried it 2 times and the same thing happened (also she had severe vaginal bleeding), she later decided not to take it.
Well, I'm still hanging in there with taking mine, though only day 2...I get kind of sweaty and weak and noticed extra heart beats and skipped beats when this happened, though my BP was fine...but the heart issue may be from the radiation because it was the Left breast....but I think it is the Tamoxifen. per my own intuition and my nurse intuition.
Harley sending you hugs....and saying prayers
Amber
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Amber,
Thanks! I will have to check into the flax oil. I also thought that flax was a nono for ER+ gals. Say, I didn't know that Tamoxifen caused dry eye also. My eyes were dry before I started it.
I have to tell you that even though I am not strong, I know that GOD carried me through this past year, the bc dx and tx, even chemo, and I got through it fairly easily, with not much pain after the surgeries and minimal se's from the tx. Earlier today, I was thinking about all this, and I guess that is when it dawned on me that if GOD got me through this past year, HE will not let me down now. It isn't that I don't trust HIM, because I do, I was just feeling that dejavu feeling, re living the bc dx.
Good Luck with the Tamoxifen... If/when I get the hysterectomy, I may be switched to an AI since there will no longer be an issue with me taking the AIs. The night flashes were gettting to the point of being unbearable when I got this break from Tamoxifen.
Thanks so much for the prayers!Hugs,
Harley
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Today I had my blood drawn for the BRCA1 and BRCA2 testing. The genetic counselor was terrific, and is confident that I will get the insurance appeal approved. The cost is approximately $3200, and I will know in a few days when the company, Myraid, calls me and lets me know the insurance company's decision. I then have the option to say no to the testing or give the approval. My odds are 18.5% that I will test positive, due to family history - primarily my mother having ovarian cancer at 58, passing away at 59, and my being 46 years old when diagnosed with DCIS. However, who knows .... the counselor says that most women do not test positive, in fact, in my doctor's practice over the past 2 years only 2 women have had a positive result. I almost want to just get the ovaries removed anyways since having BC just increases the odds. I am mostly concerned for my daughter, who is almost 20. My sister is also very concerned. She has never had BC or ovarian, but has two daughters and wants to know for their sake. Once I give the approval for the testing, it should take approximately 3 weeks, so I have another appt with the medical oncologist on 8/13.
Side effects still minimal with Tamaxofin, hot flashes, but nothing crazy. No period yet, so I just maybe lucky and have it stop with the medication!! One good thing, eh!?
It felt good to get back to work even though I did feel a little rusty.
Harley - is there some type of wellness center near you? My oncologist recommended one to me, but I have not yet gone. They have all sorts of support programs - tai chai (sp?), yoga, etc. Maybe that might help you with the level of stress. I did not know about the eye issues, and I do need my eyes checked. I just renewed my license and need my glasses to drive - I'm very near-sighted.
Hang in there everyone!
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Hello ladies,
Whew, thanks for the inputs on the vag discharge. I feel better knowing that it's a common side effect. I still wear mini pads, because it comes and goes. Oh well, what do you do...
My hot flashes are very mild - Thank You Jesus! Since it's so hot here in Texas, sometimes I can't tell if the sweating is just caused by the temps in the 100's! I guess I'm tolerating it well.
The muscle and joint pains are worst in the morning, but gets better throughout the day. Daily 30-min exercise definitely helps in gaining back my strength.
Every morning, I pray and lift up my health to God. And somehow, it gets easier. He's such a loving God -- all we need to do is call on Him.
Good night friends. Sleep well!!!
God bless,
Aurora
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Hey, Tamoxisisters.
Been suffering insomnia for about 2 weeks. This is also a symptom or stimulus for bipolar disorder, which I have, so the whole thing freaks me out. No insomnia for 7 months, then boom. Also, killer hot flashes. Any words of wisdom?
Basha
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((((Basha)))
Sorry you are having a bumpy ride on this train. We must be in the same car, because I am hitting a really bumpy patch lately. Between waiting for my gyn onc appt. to decide what to do about the endometrial lining thickening and now I'm bleeding, and the opthalmologist exam I had on Monday, showing GLAUCOMA, I am about to have a breakdown.
But enough about me. I have had terrible insomnia on Tamoxifen, and the hot flashes have been worse too since I stopped taking Effexor. In fact, things started to get bad when I stopped Effexor at the end of Feb. I get the night flashes mostly, and when I do, it is almost impossible to get back to sleep. Someone suggested that I get up and go to the bathroom. I tried that, but it didn't really help too much. I found that keeping the ceiling fan on all night works to help dissipate the warmth quickly, so I can get back to sleep sooner, and I get a drink of COLD ICE water. That also helps some.
Now I am getting a break from Tamoxifen, until I see this gyn onc, on July 22nd, to see if I can get a hyserectomy. I don't want to go through all that pain with a biopsy, and then have to get a hysterectomy anyway. I am now worried that (if it's cancer) I'll have to get chemo and radiation. I just can't go through chemo again, and radiation scares me too.
I'm thinking of you, and sending COOL thoughts your way, and lots of zzzzz's too!
Hugs
Harley
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Hi Girlies--- I haven't posted in ages, so I'm sorry if I don't address each of you...but know, big hugs to ALL!!
Murph- good luck with the BRCA testing!! I had it done b/c my mother passed away at the tender age of 53 of BC and her sister was diagnosed (but a survivor!!). I was diagnosed at 40 so I was POSITIVE that I had the BRCA gene...turns out I don't have BRCA1 or 2...but I could just have a gene they haven't discovered yet. Anyhow, I can userstand how you and your sister would want to know given you have daughters. My sister, who has FOUR daughters, was an ostrich... She totally DID NOT want to know... Turns out I'm negative so chances are she is as well.
Basha- sorry you aren't sleeping. I am a chronic insomniac and have been for years. It's brutal. I too sleep with a ceiling fan on all night and it helps loads... Can't imagine living without it...
Harley- good lord woman...stop going to the doctor... JUST KIDDING. BIG hugs to you. You are a VERY strong person... You are a SUVIVOR!! Sounds like you have a very definite and clear path that you want to follow...I am confident that all will be ok for you. Not big into praying, but sending TONS of good karma your way!!
Lynn- hope you are having a great time in Atlanta!
Layne- where are you???
Saw my onc last week and she said that I shouldn't be suffering any SE's from Tamox. ???? I was like, huh? Anyhow, I do have to say that I feel very lucky compared to some of you girls. I had some hot flushes in the beginning, but they've gone away. Maybe some periodic slight discharge, but nothing horrible. I've already indicate other SE's but for the most part I am tolerating Tamox really well...I just hope that my body is metabolizing it... Forgot to ask about that. Had my MRI of my c-spine last night. Danged nurse stuck me THREE times before she got a vein. GRRRRR. Anyhow, *hoping* that I have a pinched nerve or a slipped disc....that 's what the onc is thinking (not the dreaded bone cancer).
Sorry for rambling....hugs to all...
Virginia
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Basha,
I haven't posted in AGES, but have been following everyone's stories daily. Did you start a new bottle of Tamox? Maybe the pharmacy changed manufacturers. Just a thought. Harley, {{{{{{{{{HUGS GIRLFREIND}}}}}}}}}} Hope all goes well with eyes, uterus, and all the rest of your body parts! lol
Murph - glad you got the test started. My dx of bc made it an automatic for my ins. to cover it (by the way - negative)
Virginia - I'm like you, started out with warm flushes and now nothing except some weight gain and a small amount of vaginal discharge - but no joint pain
Best wishes to all and to those I missed.
Take care,
Trish
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I forgot to mention too that my insurance paid for the BRCA test... I checked before I had it and was lucky...
I've been on Tamox for 1 year now...so SE's in the beginning definitely diminished as time went on as my body (I'm assuming) acclimated to the drug. Anyhow, guess I am tricking myself into the benefits outweighing anything else, but I am not suffering like some of you gals...
Hugs again...
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Oh my gosh, I'm gone a couple of weeks and so much happens!
Harley - I'm sorry you are in the waiting game now, but good to hear that you've got an appointment next week with the Gyn Onc. I too get sick of all the tests and appointments, but I tend to fall on the side of "better check it now..." philosopy. I'll keep you in my thoughts, and we are all here to wait with you. You are strong, but remember, you do not need to be strong for everyone else, or on anyone else's timetable. If you are not up for feeling strong today, cut yourself some slack and be ok with it. You'll feel much better when you do not try to force your feelings.
Deb - I'm glad your scan came back with no changes and I hope that your next scans do as well.
Amber, Deb, Harley and others who are in the seemingly endless waiting game, I'm right there with you - but for me it is a spot on my liver. I had my 3 month Onc appoitment last week. Also had two MRI's of my liver. Results were good - the liver lesion is "stable" - they still aren't difinitively calling it one way or the other, even after 4 MRI's and a liver biopsy. The good news is that it is not growing, so I'm going with that thought until the next test. However, even with this good news, I've had no sense of releif.
Virginia - my image of you playing GH is with the guitar over your head - no wonder you have back and neck problems!
Seriously I hope the issues that you and Harley are having are totally unrelated to the BC. I do have these burning pains in my back & neck every once in a while (there are three specific places). If they progress to a steady pain, then I'll have them evaluated, but until then, they are ocassional take-your-breath-away zaps of burning pain. On the other hand, I have had consistent low back pain/ache (almost like the pms back pains) since April - that is a whole other issue that hasn't yet been figured out yet. My X-ray showed some very small bone spurs, but nothing that looks crazy - which leads me to believe this is really Tamox related. Layne - thanks for the reminder that chiropractors often can be the answer.MaryEllen - congratulations on becoming a grandma again!
Murph - Good luck with the BRCA testing. I have been told I have a 15-20% chance that I have a mutation, however I haven't decided whether or not to be tested. I have a clear familial link, but just as Virginia said, it isn't always a mutation that they have discovered. I have two sisters and a brother, and none of them have expressed a desire for me to be tested, and frankly, if they don't want to know, I'm not sure I could handle knowing without sharing. So for now, I'm not pursuing this.
I took a staycation last week and had my own little retreat. Complete with massages and meditation, long walks and even quality time on a swing set. It was amazing. I took the time off of work because I knew I had the MRIs and the Onc appointment scheduled, and I just wanted to focus on me for a week. I would recommend it to everyone.
I'm considering taking a one month hiatus from Tamox to determine exactly what issues are related to the drug, and what issues may be due to something completely different. I have a call into my onc. (I forgot to ask when I saw him last week). I also bought three more pair of shoes. Seriously, I'm out of control.
Barbie
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