Bottle o Tamoxifen
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Remember that muscle weighs more than fat...Ask yourself - Do things fit better? Do you have more energy? Rather than focus on the weight, ask someone who works at the gym to take your measurements (calf, waist, thigh, bicep, bust..whole nine yards) and then measure once a month instead of or as well as stepping on the scale. You will feel better, see the results you have been working towards and wil be able to measure your progress concretely. I have been working with a personal trainer (even though I have been going to the gym all this time) and while I only lost 1 pound in the first month, I lost 1/4 to 1/2 inch on all measurements....
You can do this...maybe think of it this way as well ...if Tamoxifen is suposed to make gals like us gain weight and you are only gaining 1lb (likely muscle) a a time, then BRAVO!! Success..imagine what might be happening if you were not exercising.
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OMG I haven't stepped on the scale and looked at the result in 10 years. The last time I went to the drs and realized in a year I gained 3 lbs (I know right) and I went into a tailspin about loosing it. Then I just decided it was about how I felt not what I weighed..so now I step on the scale backwards. Everyone is under strict instructions to not mention the number OR if I've gained or lost weight. I am not dumb I know when my clothes are tight I've gained weight. I told my onc if you want to monitor my weight for your own purpose great...just don't discuss it with me. For the record I am not a fatty just vain.
Jan stop stepping on the scale!! You're working out you're watching your diet you don't need to torment yourself with numbers!
Diane
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Okay, saw the gyn. specialist today. She immediately ordered an endometrial/uterine/cervical biopsy to rule out uterine or cervical cancer (I also had the HPV vaccine-the 3 boosters that yep, is usually for the young girls, but my previous primary doc--bless her soul--got my insurance to approve the boosters), and the pap to help rule out possible ovarian cancer, but we'll also do an internal ultrasound in 3 weeks, after these results come back. She felt the medication switch was NOT to blame, felt it would've maybe caused a 'breakthrough period' within a few weeks of the switch (Sept. 2010), not 3 1/2 months later. She was very concerned, but I don't 'go there', but I'm also EX-tremely bloated, WAYYYYY more than I've ever been, and mega weight gain since a few weeks ago. She hopes to have results before my oncology appt. Tuesday, but may not (takes a week)...and agrees to get back on an anti-hormone-cancer drug ASAP, but that's the oncologist's decision, not hers. She thanked me for bringing all my lab results, so she didn't need to order any more bloodwork, shows consistent menopause for too long. It's not normal, rarely happens (she's never seen it). Soooo, we shall see. I am awaiting going BACK ON an anti-hormonal, as it's not been long enough to be without it. Just an update for now...thx! ~juli
*If anyone recalls, onco switched me from tamoxifen (3 1/2 years) to Aromasin in Sept. 2010, was told go OFF the Aromasin as of 12/27/10, as period started 12/25/10 after no periods at all and hot flashes/night sweats since 10/2006--labs show definite menopause*
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Sisters, I just wanted to say how honoured I am to be on this journey with you all.
I read so much courage, love and compassion in your threads.
LOVE & HUGS XXXXXXXXXXXXXXXXXXXXX
Jules
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juli: heres hoping the gyn answer is helpful and ok i had a hysterectomy a few years ago. a few years earlier one of my ovaries exploded, but my endometrium grew out of control so i had the other ovary and uterus and cervix removed as well. endometrial cancer is considered a part of the uterus, so, hm a subdivision? i spent a few weeks in grief for a sense of amputation, but glad i did it. especially now given the tamox risk. so, i wish you luck
jan: is that scale gone yet? it'll make you nuts dont forgetyour wieght is not who you are, its just a what. expecially when we have a drug that f*cks with our weight, emotions, appetite, weight oh teah i already said that
~ ~ nancy-carol
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Juli.. hoping and praying all goes well for you, please do keep us posted hugs to you now girl!!!!!
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Hi everyone!
Is it my imagination or has practically everyone that has taken tamoxifen ended up getting their uterus and or ovaries removed? It seems like way more of us than 1% have thickening and other problems going on down under. Anyone out there past 2 years of T that was fine- no gyny problems? I hope to hear some news from everyone - one way or the other. Thanks for any info in advance!
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val---in the printouts/literature and from my onc, this almost a garauntee so, yeah, not your imagination. some of us had that procedure long ago or for another reason, but dot dot dot
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Guess I will be talking to my gyn in June about the plumbing removal. Heck, I don't need it anymore. Past the age of having kids - did not have any to begin with.
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thank you everyone, and tinkertude, I also love your name! (I noted somewhere someone else commented on it) Yes, we shall see what happens. I called to change the internal ultrasound appt. to 1/24 instead of having to wait til 2/2...saying my onco wants the gyn. stuff OUT of the way, so we can get back to the anti-hormonal drugs. Weird to read that others have had problems with their errrr-down-south area? VERY interesting indeed. Hoping no need for hysterectomy, but if estrogen is being produced again...arrrghhhhh...can only wait-n-see, not very patient about it am I???? THANK YOU everyone and to you all also, the very best....juli
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Hiya Gals, I went to another stress reduction class yesterday involving Tension Releasing Exercises. It was AWESOME and I also learned there was a reason I went cuckoo last summer when I did, involving our flight/fight/freeze mechanism in our brain. A cancer diagnosis does give us PTSD in a way. I'm normal- haha! The website to check is: www.traumaprevention.com
After we were done I felt instant relief even a headache, I'd had, was gone. Such a simple technique produced such a powerful and immediate response, amazing. The itchy, looking over my shoulder feeling I've been having with this cancer is not with me today. I went and tried on bras after I picked up my tmox Rx and didn't get upset as I'd been fearing. Thank you God.
Hope whatever comes your way today is good. Love and hugs to all.
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Thank you for the website Sunshine. It is good to know I am not losing my mind and it is very real!!!!!
So glad you have found relief! thats awesome....
Cant wait to get some new bras soon!!!.
Love and hugs to you all!
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OMG! I have been on Tamox for a week now and my toe joints are killing me. Hurt like heck and hard to walk. Worst at night when I am trying to sleep. Has this happened to anyone else? I hope this doesn't go on for the next 5 years. UGH!
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I have been on Tamox since September. Having muscle spasms that can start somewhere in my feet, calves, or thighs. Then it will switch from one leg to the other....the worst spasms hit when I am asleep. My leg muscles seem to be tight all the time now....hurts to go up and down stairs....not sure how I'm supposed to even think about exercising, when it seems the more I do, the worse the spasms get.
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Some more good news today from folks in AZ to help us all see if the tmox is working for us or not
Way to go ASU!!
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isnt it a good thing to know that we arent crazy? its as if we are all takinga different drug from one another, no? me? i get hot flashes, but so, no appetetie=no tast creations hungry but ew yuck it all sounds yucky otherwise not much eelase.....thinking this an as of yet kinda thing i am glad to have less then most of you and i ofer all my condolences
~ ~ nancy-carol
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Hi all.....went to my gyn appt today. I have my trans vaginal ultrasound scheduled for this Monday.
I also went to a psychologist on weds for the first time. That went well and was really helpful for me. ( I have other things going on, not health related, and with the BC adding to it was just more then I could handle really ) She along with my dr today all pretty much said I need to start the T and not wait til after surgery on Mar 4th. Soooo, I guess I will be on the train soon.
I want to start some yoga classes but with dr appts and my kids and work (change of careers, timing,not great?? lol) I just don't know when I'd fit it in???
Hope everyone is doing well and tolerating the big T very well!! Sorry about your achy toe joints jo...and juli I hope everything goes well with your US. I hope you can find out good news and get started back on something to ease your mind very soon!
And bra shopping.....YES!! I need something to look forward to (besides getting these hard as brick things out of my chest,lol. Bra shopping, can't wait.
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I'm going to ask my onc about Trazodone. I have a hard time sleeping, and often wake up with hot flashes, and then it takes me a while to fall back asleep. Did you get any weight gain from it? Thanks for the advice. I also get that forgetfullness. It makes me crazy. I think it makes my family even more crazy.
Margie
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I just had my TE taken out and a reduction and lift on the other side. I love the new smaller boobs. I was so glad to get rid of that TE. I had it for almost a year. Now I can just wear camis. I'm still healing from the surgery, and waiting for everything to "settle", but so glad to be moving foward, and to put 2010 behind me.
good luck to you,
Margie
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How long does it take for SEs to show up? I just started Jan. 1, and so far, so good. Do SEs have any correlation to how positive our tumors were? For example, would someone with a tumor 98% ER+ have more SEs than someone with 70% ER+? I'm only 8% positive for ER and negative for everything else, so I'm not entirely convinced how much good I'll get out of taking Tamoxifen, but as long as I'm not having bad SEs, I guess I'll keep taking it.
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riley: muy understanding is that E V E R Y B O D Y has diif and then same and some diff'er SE and that it is called estrogen therapy, beaucase the hormones progesterone and estrogen kinda nourish the garden of breast cancer. so, if a woman is POSITIVE then we wana take that outa the system, opportunity also why ert is a debateable issue. that puts extra estrogen into the body towards bone loss and stuff that gets lost when ovaries are taken out so then, round and round we go so tamox is offered to women who are at an increased risk of recurrance, by removing any estrogen production. even tho a woman might have had a total hysterectomy, pitutary, adrenal gland cont to provide the body with estrogen. so its like putting a giean magnet in our bodies. and when the useful stuff is taken out, our bodies retaliate with shock. the hot flashes ,wieght gain/loss, nausea, vomiting etc are examples of that wheh! sorry to be long winded
~ ~ nancy carol
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Hot flashes have almost stopped since starting Tamox. Yea! Hope it stays that way. Been sleeping much better. Having to deal with some joint pain but that is a trade off I will take.
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Morning Girls.....I was told, & read, that Tamoxifen is very useful in our bodies, especially for our bones, etc. Tamoxifen does not "block" us from producing estrogen, but it blocks any cancer cells from "feeding" our estrogen..... I found this article...
http://www.imaginis.com/breast-health/basic-information-on-tamoxifen-2
Also the other types like Femara, Arimidex, DO block any estrogen...that is why so many women have more complaints with their bones...joints, etc.
So in other words, estrogen IS good for us, along with Tamoxifen....We just don't want it to feed any more cancer cells that might be there....
Suzanne .... Same with me....I usually don't have problems, with cramps in my legs, like I did awhile ago, but the other night, SAME thing...that cramp just didn't know where to go next in my leg, that would make me jump onto the floor...which I finally did! I mean it felt like it was "twisting" up & down my whole darn leg!....So I got up, turned on the electric blanket, & SAT on it to relax my leg & watch some no-brainer on Tv!
Margie....good for you gal! You WILL have a better year, and forever!
You know, after my lumpectomy I ordered some front-closure bras from Amazon...That's all I wear now! They are perfect for me....Good support, & they also have adjustable shoulder straps.
I mean I love mine! I ordered a little larger, just to try it, & it worked!....
Riley...I can't answer that question....I just thought anyone that was PR & ER positive could take Tamoxifen, no matter what the numbers were...Maybe just ask your Doc?
Have a great Friday kids! xoxoxoxo
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Chevyboy~
If looks count...that bra looks SUPER DUPER COMFORTABLE.
It reminds me a lot of one that is a b/c bra I have. Only difference is the one I have has pretty lace on it....and it also cost a ton more too. LOL
Catbird
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Valgirl-I have not started mine but have had my uterous removed a long time ago. Still have the ovaries. I was talking to one of my friends who just finished her 5 years of tamox and she said she never had any SE from it. Sounded encouraging as she started on arimidex and had lots of problems.
Riley I am also low on the ER % positive but my PR % positive is much higher. I wondered the same thing about how much good Tamox would do me so I asked both my RO and MO and they both told me that it did not matter that as long as it was positive in some way that the tamoxifen would be beneficial. They said it is just that I also have mor ER- cells as well. My MO also went on to say that ER- and PR+ also benefit from tamox. No one know really why but that it works. so I guess bottom line is that Tamoxifen is really all they have to give us for protection.0 -
For those of you having toe and leg cramps. I have those too and they seem to come and go. A while back on this thread someone suggested putting an unwrapped bar of soap under the covers at the foot of the bed to help relieve the toe cramps. It doesn't make any sense but a lot of women got relief from it. It can be any kind of soap. Some also started drinking tonic water but that is probably hard on the kidneys if you drink too much. It may also help to eat a banana a day to make sure potassium levels are adequate.
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Yes, I tried the soap! In fact I placed two bars in between the sheets....(so they wouldn't be lonely).... Got leg cramps so bad one night, I accidentally kicked one right out of bed. Didn't work for me, but might for someone else....I eat bananas...and I have magnesium....But the leg cramps only bother me SOMEtimes....not all the time!
Catbird....yes, they really are comfortable! But it's like I have a ...what's it called when your eye-brows meet in the middle? I have one boob...I mean it starts on the left & goes all across the front! I think it is a "uni-boob" .....Well I mean I don't have much definition! Oh well...I should not complain....I didn't have to lose my boobs.....I thank God for this every day....xoxoxoxoxo
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I finished my radiation today and got my prescription for Taxoxifen. I will officially hop on the tammy train in a week, after I return from a business trip. Don't want SE's starting when I am out of town.
I appreciate hearing everyone's stories. It has helped me decide which drug to try and helps me know which SE's to watch out for. Hope everyone has a great weekend!
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Susantm Congrats on completing rads! I didn't have to do rads thankfully once I opted for the mx but I know what I was preparing for and a friend did rads and I know how hard it was for her so BRAVO for getting through it and hopping on the T train!!!!
Jo my warm flushes and night sweats diminished when I started T and then slowly the joint pain went away. I hope this happens for you and you have a smooth ride on the T Train!!!
Diane
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Well, after 2 weeks of tamoxifen, I have had very little - if anything - in the way of SEs. Knock on wood! The most important thing, I think, is to keep active. So then you start wondering, well am I a good metabolizer. My onc doesn't think the tests for that are very accurate but she says she can tell by my blood work if it is working for me. I see her again around the beginning of March, so I'll know for sure by then. Well, as far as anything can be certain with all of this BC stuff!
As far as leg cramps go, I have restless leg syndrome so I think that medicine would probably work. I only take it as needed, which is about once or twice per month. I remember I read an article about restless leg syndrome when I was in high school in the late 60's or early 70's, and even though I was a perfectly healthy child, I saw that and said, "I have that." I had already heard from sleepovers that I kicked everyone all night - good thing is I usually got the WHOLE bed to myself. I know some people doubt it exists, or think Big Pharma made it up to sell more drugs, but I can tell you it's real for me. And that medicine, whatever it's called.....anyway, it really works. Well, the point of this whole ramble was that I will let everyone know if I have any leg cramps at night and if this medicine worked!
I am so tired of taking supplements! They make me pee all the time, and I think the tamoxifen does, too - I'm boycotting supplements for a while. Gotta give my kidneys a break! And I want to see if I can sleep through the night without having to get up to pee! Just one night! I'm seriously going to conduct an experiment and see if there is some way to sleep all night without getting nature's call...
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