Bottle o Tamoxifen
Comments
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Holy cow, that was a long post, and I didn't even cover everyone. Sorry!
Hope everyone is doing well.
Barbie
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Hi All - I start on tamoxifen next week. Been reading some of your posts to get a feel for what might be in store. Seeing my med onc on Friday so reading up on the potential side effects now so I have my questions ready for him. If anyone has suggestions for items to discuss with the med onc just before starting on Tamox, please let me know.
Deb - I am just like you when it comes to my feet and how I feel about warmth and cold.
Aurora - another gal in the support group I went to this past week commented that while vaginal dryness is a common side effect she has the exact opposite problem. She plans to talk to her onc about it but I can't recall when.
Munchy - congrats on your 2-day walk and fundraising.
Mary Ellen - congrats on grandchild #3.
Harley - hang in there. Remember that doctors and tests are actually our friends - they can often help alleviate concerns and if they do find anything, it is much better to find things early. Of course, we want the answer to be that this is something minor which can be readily addressed. Try to take one step at a time.
Barbie - Your staycation sounded terrific. Hope the feelings stay with you for awhile!
Joan
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Barbie- LOL you are funny. I think I've heard that the odds for BRCA1 or 2 was as low as 2 percent! Not sure if that's right or I made it up in my chemo fog (that I still feel like I have 1 year later).
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Welcome Joan, I was with you in the May Gals, I know you are glad rads are done...I am doing well just some breast tissue swelling from rads. Hope all is well from rads...
As far as ?, you might want to mention the "cyp2d6" bld work up...this test just helps to see if you metabolize Tamoxifen well. My onc told me that standard blood work was a CBC CMP and he would do the "CYP2D6 assay" if I wanted him to and that insurance would cover it. and if you are near menopause you may want him to check your hormone LH, estrogens etc.
I asked about supplements too.
Amber
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Hey to all!
Barbie,
You are a crack up! I love to get shoes too but my hubby would have my head examined if I got that many! But really, if you do go off the tamox, like I did for 4 weeks, I would suggest keeping track of the symptoms that you're wondering about. I made up a chart with the s/e's (hot flashes, vaginal discharge, etc.) across the top and the dates down the side. I kept it by the bed and filled it out every night on a scale of 1-10 for each. It really made it clear that it was the tamox causing this stuff. I did that in April and went back on it after I saw my med onc. At least now we knew that it was the tamox and not something else. It was easy to see the progression. It takes the guess work out of the picture. Really helpful.
Harley,
Hang in there! Go in there with your questions written down and don't let the doc out of the room until you're satisfied that you have your answers. (I have a mental picture of you jumping on the doc and holding him down till you get through your questions
) Just think of all of us being in the room with you -- flys on the wall ! Virginia,
I think you and I have had similar roads with the tamox. I too am not having the hot flushes that I did and my joints are not nearly as stiff as they were. I'm hoping that I can continue tolerating it.
So ladies, I just found out that the dinner party that my hubby wanted to have for some people from work has now been cancelled since he now has to be in Baton Rouge that day. So all that baking that I did -- don't need it now! Oh well, it's in the freezer and we'll use it eventually.
Hope everyone has a good day!
Deb
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Thanks Virginia, Barbie, Joan, and Deb,
All the GYNs I have ever seen have been jerks and I don't want to have to see yet another onc, because I don't get along too well with my regular onc either.
I am just very scared about this! I wanted to help myself deal with the stress, so I went for a slow run on Tuesday and now I'm bleeding, and even if it is just spotting, it has me REALLY SCARED!
Hugs
Harley
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Deb - great idea about the spreadsheet. This is how my brain is functioning these days... I didn't even think of a spreadsheet and I love them! When I started Tamox, I wrote my side effects in a little calendar I kept in my purse. I kept this up for about 2 months. When I realized I was writing the same thing over and over, I stopped. The spreadsheet will be so much easier!! Don't worry about the extra baked goods - I'll be over in an hour to help you "get rid" of some of the extras!
Can you freeze them for another time?I have to say I am very tired today. I think it is because I've worked full time after a whole week of rest and relaxation. I've got to believe that some of this fatigue is from the Tamox!
Have a great day ladies.
Barbie
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I wish that I could take the stuff that you did for your dinner party Deb!! :O I have my last Herceptin treament this Friday, so I decided to commemorate the special day with a BBQ at my house on Saturday. Needless to say, I haven't done a blessed thing to prepare! Well, I did dust and vacuum my family room. But, no cooking done yet. Yipes... Oh well, it's mostly family, so it will be ok...
Harley- I wish you could have my onc...she is the best most compassionate person ever... Even my original onc in NYC is great... I feel bad for you... Hang in there and know that we on this train are all pulling for you!!
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Thanks, Virginia and all the Tamoxi-train riders,
I know that I am going to ask for a hysterectomy, because I don't want to have another biopsy, the whole idea of going through all this cancer business, and chemo and/or radiation... I JUST CAN'T DO IT!!!
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Harley,
good for you, I'd do the same thing....a friend of mine had a hysterectomy before she started tamoxifen and it has made me wonder if that is what path I need to take too.
Barbie, I have been tracking my tamox adventure in a pocketbook calendar too. so Deb and Barbie, how do you track on a spread sheet? do you print one from microsoft works and put days down one side and problems at the top?
Hey I forgot to ask my onc. how often do you see your onc while taking Tamoxifen? I have a 6 week follow up for blood work because I am anemic...then a 3 month followup for the onc....do you see them every 3 months to monitor effectiveness for tamoxifen?
I am taking my tamoxifen 20mg when I eat my oatmeal in the morning...I am trying to incorporate ground flaxseed and CoQ10 and vitamin b, and I have to take ferrous sulfate for 5 more weeks. do the rest of you take "T" with food in the morning or the afternoon or night and do you notice a better time?
....I am having problems sleeping the night through..even benadryl didn't get me through the night last night. I have heard some take a dose of melatonin...but I haven't investigated this. Once I read that melatonin could cause brain tumors, that taking it at night was the best time to take it. What do you think?
Well hugs and thankfulness,
Amber
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(((Harley))) - I'm so sorry you have to deal with all this uncertainty and fear. This just stinks. I know you don't want to add another onc to the mix, but maybe this one will be much better than your current one! I'm hoping for that - and I'm hoping for a quick and benign answer to your bleeding.
Amber - I've been told by and Integrative MD that Melatonin is good for night sweats and that it should be taken at night. I currently see my med onc every 3 months. I think after two years it will go to every 6 months.
Viriginia - can I come to your Barbeque? I'll bring white cake with whipped cream frosting to celebrate your last Herceptin treatment today! Yipee!
I heard back from my onc yesterday and he said he would be OK with me going on a one month Tamox hiatus to sort out my side effects. But as soon as I heard that, fear struck me down and I'm not sure I want to fly without the net - at least not yet. I guess I can always think about it for another week.
Have a great weekend everyone.
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Harley - With the linkage of breast and ovarian cancer, I'd almost prefer to just have everything out especially if one is all done with having kiddos. Every patient deserves a doc that is compassionate and listens to their patients. I have been very lucky in having those qualities in all the doctors I've seen. I also go to all women doctors!
Amber - I take my pill every night right before bed. I had read that alot of women do that to minimize feeling the effects during the day. I also am tired at the end of the day, but I figure that's still due to the effects of radiation. My last treatment was on 6/9, so it's just been over a month. Not sure if I'm a little more tired because of the medication. I do not have any trouble sleeping, other than getting up sometimes to go pee, or if I have a hot flash. But I am able to get back to sleep. The hot flashes seem to be subsiding the longer I've taken Tamaxofin. My last one was on Friday, 7/11. So, I think my body is adjusting to the mediciation.
Still do not have my period for this month, so I'm figuring that I'm one of the 25% that will not get one. Not that I'm complaining!!!
Still waiting to hear from my insurance company as to whether they authorized the genetic testing. I should hear today or the latest Monday if they approved the appeal. I'm really hopeful that I get it approved.
Hang in there everyone.
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Thanks Barbie, I am definitely going to look into melatonin! thanks Murph..for the nighttime advice.
girls just wondering if this is a night hot flash:
last night I woke up around 2am and was sweaty, though not to hot, but when I turned over from side to side throughout the night the ceiling kept moving, (I thought I was sea sick) then when I got up at 5:30a everytime I bent over or made a sudden movement...everything started moving, I had to hold on to things for fear of falling or just go slow. this lasted til 8am. I do the math and that is 6 hours. My hips ached and later my left arm ached as well. I really thought that I was dehydrated and drank 3-4 glasses of gatorade and one glass of lemonade, skipped the coffee and the morning dose of tamoxifen and supplements.
I feel OK now but I am afraid to take the Tamoxifen and anything for that matter.
well I am going to lie down for a while. hopefully no more of that night stuff.God Bless all and have a restful and joyful weekend1
Amber
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Thanks Barbie, I am definitely going to look into melatonin!
girls just wondering if this is a night hot flash:
last night I woke up around 2am and was sweaty, though not to hot, but when I turned over from side to side throughout the night the ceiling kept moving, (I thought I was sea sick) then when I got up at 5:30a everytime I bent over or made a sudden movement...everything started moving, I had to hold on to things for fear of falling or just go slow. this lasted til 8am. I do the math and that is 6 hours. My hips ached and later my left arm ached as well. I really thought that I was dehydrated and drank 3-4 glasses of gatorade and one glass of lemonade, skipped the coffee and the morning dose of tamoxifen and supplements.
I feel OK now but I am afraid to take the Tamoxifen and anything for that matter.
well I am going to lie down for a while. hopefully no more of that night stuff.God Bless all and have a restful and joyful weekend1
Amber
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Thanks Barbie, I am definitely going to look into melatonin!
girls just wondering if this is a night hot flash:
last night I woke up around 2am and was sweaty, though not to hot, but when I turned over from side to side throughout the night the ceiling kept moving, (I thought I was sea sick) then when I got up at 5:30a everytime I bent over or made a sudden movement...everything started moving, I had to hold on to things for fear of falling or just go slow. this lasted til 8am. I do the math and that is 6 hours. My hips ached and later my left arm ached as well. I really thought that I was dehydrated and drank 3-4 glasses of gatorade and one glass of lemonade, skipped the coffee and the morning dose of tamoxifen and supplements.
I feel OK now but I am afraid to take the Tamoxifen and anything for that matter.
well I am going to lie down for a while. hopefully no more of that night stuff.God Bless all and have a restful and joyful weekend1
Amber
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Amber,
That has happened to me also. It only lasted for about 3 weeks. I just made sure that I took sudden movements REAL slow until then. I think it is a se of tamox but can't prove it.
hugs,
Trish
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Trish, thanks, it has been a hard day...yesterday after 3 days on tamoxifen, I thought I was not going to have many problems taking it...today everything hit, and I am an emotional nut to top it off.
does anyone have teenagers...I used to be able to handle their insensitivty...today both of mine haven't been that caring.....and I am over sensitive...crying...like pms, but maybe it is the tamoxifen too.
Well I have some free time and I think I will check out the vit E and melatonin....maybe there is relief there...and I must pray!
in His care,
Amber
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Amber - if you continue to feel this way I would give your oncologist a call and get seen. You shouldn't have to feel like this. Maybe take the pill tonight and see how it goes?
I also think it takes a while for the body to adjust to the medication. I had headaches, nothing serious, the first week. Who knows and sometimes I feel that I overthink EVERYTHING. But, I do seem to notice more spider veins by my ankes. I still do not have my period, but I'm okay with that, but I'm sure the PMS will still come!!!! I try not to be too anxious about all these little things I am experiencing, but sometimes you just can help it. Don't beat yourself up, Amber
I also have teenagers, at 19 and 15 they can be very selfish, but as I try and remember back to when I was their age, I figure I was like that also!!! I'm sure they love you very much and aren't even aware of how they sound!! They will "get it" when they are older.
Try and relax, kick back with a book or magazine, and something cold to drink.
Hang in there
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Murphmort, you made me laugh, I'll take the advice, I think I have a few hours to myself, I'll try to have some fun and kick back. I OVERTHINK too. so for now "me tries not to think".
Love you gals for the encouragement!!!!!!
Amber
ps: a beautiful and grand weekend to all
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Barbie!! I WOULD LOVE IT if you gals could ALL come to my BBQ!!! I had my infusion...nurse got me on the first go round... It's weird to finish up the treatments. I got a Purple Heart certificate stating that I finished my chemo (although...I finished the chemo 1 year ago...this was the Herceptin). Anyhow, I feel happy, but also anxious b/c I was going every 3 weeks for this med...and now nothing...
And now I don't know if it was Amber or Trish who asked about the PMS symptoms. I found that in the beginning my PMS symptoms were really heightened... I called it Tamoxi-rage. Now when I get pissed off at stoooooooooooopidity, I chalk it up to tamoxi-rage. I hope you all can get acclimated. I know that most of my symptoms went away after a couple of months...and for those of you suffering after only a couple of days, I'm sure a couple of months feels like forever. I really really hope that your SE's dissapate (sorry for the bad spelling).
My blood work from last week was good... Had my MRI Tuesday and it said
Disk ridge complex at C6-7, which partially effaces the ventral fluid column. No evidence of disc herniation.
Yay for the second part...huh? for the fist part. My nurse couldn't even tell me what that meant. But, the pain is going away.
Ok, better get some food in this house for tomorrow!!
Hugs hugs hugs to all!!
Virginia
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Virginia - Congratulations! I'm also bringing champaign and peach puree for belinnis. I know beer probably goes better with BBQ, but heck, this is a celebration! It sounds like your MRI is all good? Hard to know when they put their little secret codes in there. I hate that. Glad you are getting some relief too.
Amber - I've been having some wierd dizziness issues in the last few days too, however I've been on Tamox for 4.5 months. I'll ride this out for a few weeks and see how I feel.
I'm going to wear a cute pair of shoes to the party tonight.
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Amber,
I made the spreadsheet up myself on Excel. The days of the week (one column for dates, one for the day) down the left side. The various s/e's that you want to track across the top. I also had a column for my weight, which was an issue at the time, and an extra wide blank one just for notes, in case something unusual happened that day. This way I had everything on one page. I just kept a copy in my bedside table with a pen and filled it on each night when I got into bed. If you need it, let me know and I can email you my blank copy. It took me a few months for my body to acclimate to the tamox too. And I had all the s/e's you're talking about and they're almost totally gone now. This is your transition time.
Virginia,
I wish I could send you some of the stuff I baked for your party! But as someone suggested, it is all in the freezer. I'll use some this weekend since my hubby's nephew with his family (4 kids) are visiting this weekend. I'd send you potato salad too, if I could. I'm told I do a good job with that. Glad to hear that the MRI came back with good results. You deserve that.
Harley,
I know you are worried -- understandably! But you need to take a breath and calm down. There isn't anything that you can do over the weekend so take some time and relax. Pretend that you have a box by the front door and put all this stuff in the box. You know that it's still there but you aren't carrying it around with you. You can pick it all back up when you go out the door to the doc.
Murph,
It took me almost 3 months after rads to feel up to much but all my docs agree that I had an especially strong reaction to them (and not in a good way). So hang in there, it'll be better soon.
Ok, gang, have a great weekend! Think of me with 4 extra kids and two extra adults running around here!! I'll be wishing to be with you!
Deb
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Gals, You gotta hear this one. I went to my onco appt. and after she heard my symptoms(insomnia, constipation, tender breasts), she did a preg test! I am still 57 years old! I had to wait 2 hours for the results and began to go nuts. Of course I'm not pregnant. And I never found out why I have these symptoms. Ah the continuing saga of Tamoxifen.
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Basha, That is something else....really she did a pregnancy test!
I think the insomnia has to be SE of tamox and I wouldn't be surprised if the other symptoms can be the same. Hang in there girl!
Virginia, congrats on the blood work. Barbie thanks for relating...sometimes I am scared to drive, my head feels so odd and I get that sick feeling, usually I just hope that when I'm sitting my head isn't swimming as bad. Deb thanks for the info on the spread sheet....I think I can come up with one too...
Hugs to all!!!
Amber
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Basha,
That's a hoot! Take it as a compliment! Hope you get a good night's sleep. Sometimes I think as we get older, a good night's sleep is a luxury that we don't often get to partake of.
Amber,
I hope that it helps. One thing I forgot to tell you is that in each box, each night, I would rate that s/e on a scale of 1 to 10 (1 barely there to OMG 10). Using numbers really makes you think about the severity each day.
Have a good one gals.
Deb
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I had a TVA yesterday. Lining was fine but have something called functional ovarian cyst. She said it was small and to have another u/s in two months. Do you guys think it's from the tamox? I am 46 and I'm not sure if I have ever had one of those before. I didn't even know I had one!
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louishenry
I don't know if the cyst is from Tamoxifen, but it might be, as it makes things grow. I know a woman with whom I work, who had an ovarian cyst. Her dr. wasn't concerned, as they thought it was a functional cyst, and these are benign. Hers turned out to be 'complex', which is bad, so she had a hysterectomy. But, it wasn't ca.... and she is fine now.
Glad you just have the 'functional' kind.
Hugs
Harley
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Hi gals..just doing my weekly reading and boy...so many things we have in common. I have that dizzy feeling and had one episode after a mexican dinner where my shoulder started to ache real bad and then felt nauseous for a few days..my arm was kind of numb too. Kinda thought...mild stroke?? I rode it out and chalked it up to the ol gallbladder/fatty liver thing I had years ago and now thanks to tamox has reared its ugly head. I googled tamox+gallbladder and found that yes, this lovely drug can aggrevate the gallbladder..ugh.
Harley..have been reading about all you have been thru and the day before I started my chemo I had my pap..came back abnormal..not in the cervix but in the lining so we did a TVA and then endo biopsy and colposcopy during my chemo when my counts were good...all came back ok cept for the TVA which also showed a cyst that is "nothing to worry about". I am going for the hysterectomy in January when I have time to recoup from the surgery cause I want to have a decent summer even if I am dying from hot flashes!! My mom had endometrial cancer and between my horrible track record of heavy periods and the cyst and family history my onc and gyn agree its the best thing for me to do. I am just wondering when the hell I will get used to this tamox cause now the muscle aches have started. Hope I can hang in with it.
louishenry..my cyst had been there for years and had not grown and my gyn said that many women have these cysts and dont give them a second thought!!
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Susie
Welcome to the Tamoxi Train!
I don't have any family history of any ca... but that didn't stop the bc from happening. AND, Tamoxifen can CAUSE endometrial cancer, so I am puzzled as to why you are taking it, except you are probably young, and pre menopausal. I want to have a hysterectomy, but I don't want to have cancer again. I am really scared, but... I guess what is meant to happen will happen. I have to calm myself by reminding myself that I have been getting these tv us for the past 4 years and they have been all fine up til now. I am concerned because the drs. are in no hurry to get this taken care of, and I want it done YESTERDAY!
Good luck with Tamoxifen. I am glad to be getting a break from it.
Harley
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Sorry for all your woes, gals. I, too, had a functional cyst in my 20's. It burst and never grew back.I saw my breast surgeon today and he said something interesting. If we are already into menopause while starting Tamoxifen, we're less likely to have prolonged side effects. So I am hoping my insomnia and flashes go away REAL SOON.
xxoo Basha
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