Bottle o Tamoxifen
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Morning gals! Thanks Susie09 !!!!!!! You said it before I did! I don't like my Oncologist either! So today I am calling my Primary Care, who has my records from 30 years ago, & tell her I don't want another Doctor that doesn't even know me....I hope I can just stay with her, doing all this cancer stuff! I'm still mad because he told me I should be on chemo, & hadn't even read my final pathological report! I'm also calling my insurance to see what other Oncologists are available to me....
I'm starting my first Tamoxifen as soon as I drink my coffee, ha! I'll drink it with a smoothie & a couple chips with hummus! No breakfast, because I'm going to Elway's for a delicious lunch!
And yes, MTG...I did look that test up, & I called the nurse & they will check to see if the insurance covers it...thanks!I llllooooooooooove the pic of the kitten! So sweet! Talk to you later! Jeannette
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Hi To All,
MTG - M~~ thanks for reminding us that "we are worth it" when it comes to anyone or anything pertaining to our treatment...as this is our LIFE. You struck a cord there.
Harley~~ so happy that you are doing fairly well on Femara. It had to be tough to start it not knowing.
Kelly~~ we warmed up from 20 to 21. LOL
Take Care All,
Bonnie
P. S. Lex~~ I never read the vitamin bottles either but I will now.
Jeannette~~ thinking of you as you prepare to pop your first Big T. Good Luck
Susie~ Here kitty kitty Here Kitty Kitty
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Susie and Jeannette: I agree with MTG--I know that it is a pain to find another oncologist and not ideal to have to deal with yet another doctor, but an oncologist will be better prepared and aware of current trends in cancer care. If you can find one in your area that specializes in breast cancer, that would be optimal. So, if you really don't like or trust you medical oncologist, check into switching to someone else that you can "connect" with. I really, really like and trust mine and I want both of you to have the same confidence/connection.
Harley: I am glad that you are tolerating your femara so far. Thanks for the heads up about the vitamins having soy in them. I went today to get my vit D3 and vit E today per my med onc's recommendation(had appt yesterday) and you can be sure that I read all of the ingredients and chose the brands that did not contain soy.
TCK
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Susie ~ Love the pic...knew you could do it! LOL! Bananas will definitely help with the leg cramps if it is due to low potassium.
Finding an onc that you like and trust is important. My onc moved out of town and I loved her!! bc was her thing too!
For now, I am seeing her Nurse Practioner in the practice. She is very thorough, writes down everything I say and last time I saw her, I had a red pimple on the top of my breast, she made me call her back in 10days to tell her it went away. I need to make an appt with the other oncs in the practice to see if I like them, but for now I am happy. BTW, this NP is a 15yr survivor herself and was on T for 5 years, so I feel like she can really empathize with me.Bonnie ~ Glad it warmed up!! LOL!!! I am a little ashamed of myself so I won't say anymore!
I am reading labels now for soy and estrogen. I went into Whole Foods and found a good lotion that is paraban, estrogen, and soy free. Also, Urban Decay has a line of vegan makeup that is paraban and soy free. So, if you feel like you want to go to those lengths check them out.
MTG ~ What is the D3 for? I take a good womens multivit & Min, and the Omega 3. From what I am reading I should probably add calcium and Vit D. Also, I liked how you explained the oncotype test.
Jeanette ~ The first few pills are the hardest to take.I remember those first few days holding the pill in my hand and looking at it for a few seconds before popping it in my mouth. Now I don't think about it.
Harley ~ Glad you are doing well!
Kelly
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Susie, Kelly, MTG, CatbirdC, Hannahbearsmom, Jeannette, and all,
Thanks for all the warm wishes... The Femara is doing ok, I guess.
Found out my thyroid is all out of whack again, just before Christmas, and I'm struggling with trying to get the dose right again. Seems I'm in between doses... at least, I hope that is all that is wrong.
Hope you are all doing well
Hugs
Harley
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Susie, Kelly, MTG, CatbirdC, Hannahbearsmom, Jeannette, and all,
Thanks for all the warm wishes... The Femara is doing ok, I guess.
Found out my thyroid is all out of whack again, just before Christmas, and I'm struggling with trying to get the dose right again. Seems I'm in between doses... at least, I hope that is all that is wrong.
Hope you are all doing well
Hugs
Harley
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Hello all, I'm not on the train yet but I will be after my oncologist's appointment 1/15. I had always read that Tamoxifen is good for bones- but it turns out that's in menopausal women. In pre-menopausal women it can cause bone problems. Do I have this right? My mom has severe osteoporosis and so did my grandmother. I'm wondering how much damage 5 years of Tamox can cause to my bones and if there's anything they can prescribe to reduce or prevent it.
Ugh, I hated rads and I just want this to be over!
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Leg Cramps - I have a sneaking suspicion it is lack of suffficient CALCIUM giving me the cramps. No harm upping the calcium (eaten with food and no more than 600mg at a time). What do you think?
Jeannette - check out Ranitidine with your pharmacist.I think it is one of the reflux drugs that DOES NOT mesh well with T - increases the T and therefore reduces the active endoxifen we need. I have been taking 30 mg Prevacid but this drug is increased in its effecacy by up to 150% by T. I have a new prescription for 15mg (a pediatric dose I think??) and after 2 days, I see no difference between it and the 30mg.
Saw a dietician today at our Women's Health Resource Centre. I think I need to write a book on Tamoxifen - What You Need to Know. From the testing through to drugs and foods and over the counters to side effects - it is enough to leave your head spinning. None of this info is in one place and it drives me crazy! The dietician was helpful in mostly confirming what I already knew. NO soy, flax, for sure and go easy on a whole pile more!!! Eat lots of berries, broccoli, spinach; and variey of fruits and veggies is the way to go - trying to have veggies at lunch and supper.
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Hi tamoxifriends!
I had an appt with my med onc yesterday. I'm not sure if this has been discussed before or not but I thought that I would bring it up---she suggested taking 800 iu of vitamin E everyday to help minimize hot flashes. She said that 10%(maybe 20%?-can't remember for sure) of people get relief with this. Mine aren't too bad but I figured if this might help, I'd give it a try-can't hurt. Just thought I'd pass on the info in case others weren't aware.
TCK
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Interesting TKC. The dietitician today told me I should never take more than 400IU/day. Go figure....
C
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bcamnb: Gosh it can get so confusing, can't it? The vitamin E bottle says to take 1 tab 1 or 2 times a day with food. They are 400iu each. My med onc said that I could take it all at once though so that is what I did.
It's really late here- I gotta go to bed!
TCK
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Caroline & TCK ~ Isn't it frustrating getting all this conflictin information and from people in the know?! Caroline, I read on the Mayo Clinic Q&A not to take more than 500mg of Calcium at a time! I think its best to go with what you are comfortable with. "sigh". Yes Caroline write a book where the information we need is all in one place!
Sparrow ~ I have read conflicting information about the bone density issue and so I will be taking calcium and vit D supplements...just have to get myself down to Whole Foods!
Did you share your concerns with your onc? Well ladies, I wish you all a wonderful day!
Kelly
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Hi All,
Kelly~~ I see what you mean. Like 500 mg of Calcium. Most doctors recommend 1200 a day
and Mayo says 500 ??? Caroline: WRITE THAT BOOK GIRL !!!!!!!!!!!!!!!!!!!!!!!!!!!
I've noticed lots of conflicting advice like that although I will say not usually from the valid sites like Mayo saying that. Makes you wonder.
I guess all we can do is triple check everything that we plan to take and ask our doctors about it too before we do it.
Susie: I'm ready for another picture.
) Hope your dear dear friend is back home by now.Bonnie
Oh how I wish it was shade time again. )0 -
Bonnie ~ Sorry let me clarify that...they say only take it in increments of 500mg because you body can only absorb that much at a time! So, for example, if you take 1,000mg take one in the am and one in the pm. Sorry for not explaining that properly!!
Have a good one!
Kelly
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Calcium - and take it with food
Vit - take with a small amout of fat
Have a great day everyone.
BTW - I am a brand new grandma. My son and wonderful DIL had a boy yesterday ;-))))) He is wonderful!!!
a WAY better focus for our lives.
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bcamnb: How exciting! Do you live near them?
TCK
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Caroline ~ CONGRATULATIONS!!!!! That is awesome!! If I may ask, what did he weigh? You must be over the moon!
Kelly
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Could you gals please help me with this? The Oncologist took a blood test, & they called back & said it was "real good" and the count was 27... Was this test done to see if I have any cancer cells in my body? I don't know the type of blood test it was, & I think you girls can help me understand this! I've taken 2 Tamoxifen pils, & the vitamins, & I feel great, Ha! Just waiting for a call back to see if I can get my Radiologist to take over for me here, & NOT that indifferent Oncologist! Thanks, Jeannette
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Yesterday I conveniently forgot it was Wednesday. So appointment is set for the 18th.
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Kelly ~~ O.K. Now I understand what you mean and it sort of rang a bell at the same time. I am pretty sure I've read that before about taking it twice a day for better absorption.Caroline ~~ Congratulations Grandma !!!!! What a thrill. You'll have to fill us in on all the details.
We're having a non-stop snow here right now. Could get 6 inches by tomorrow. DH just came back in from snowblowing the driveway. This is some winter for sure.
Jeannette ~~ sorry I don't know what that means...but I'm sure one of the girls will and will let you know here soon.
Think I'll go hit my recliner and hunker down under a blanket. LOL
Bonnie
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Thanks for your congratulations! Yes, we are all very thrilled. Our DIL has been followed by midwives and was preparing to have her baby at a birthing centre here. (and yes, we live close to each other
On Tuesday evening, she went to the hospital, complaining of a gastric upset. She had a bad gastritis a few months ago and was afraid it was recurring. Well, she was met by one of her midwives, examined and told she was 6 cm dilated - and in full labour!!! - so they headed immediately to the birthing centre. Our son called us to see if we could pick up the bags they'd packed, the baby car seat, etc, etc. from their apartment. We scrambled, let me tall you, arriving at the centre about 45 min later. Our son met us, joined soon by our DIL(!) and they gave us a tour. An amazing place: it is a reconverted house. each of the three bedrooms has a large Jacuzzi sort of tub; there is a sitting area and kitchen.... Anyway, our DIL excused herself - needed to go and focus!! From time to time, a midwife would up date us: her mom, sister; my husband and me. Nan 'lounged' (hahaha) in the tub most of the evening until the midwife realized she was avoiding pushing! so she moved to a birthing stool and within 20 min, just after 2 am our grandson was born. He was 7 lb 11 oz and 20 1/2 in long. He is perfect - a great head of black hair, chubby cheeks and the finest fingers! I can't say enough about the mid wives and the care DIL received. They visit her EVERY day for a week - better than any doc I know of.
All three are doing extremely well. I am taking over dinners, so see them (read him ;-) ) every day.
So, thanks for the interest. It is quite wonderful to have a positive focus for our lives - I HIGHLY recommend it.
Gammy Caroline
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Hi all, my name is Kelly (yep, another one!). I was diagnosed 10/1/09 and had a blm/te on 12/10. I'm recovering fine, although still uncomfortable (that's for another group!). I went to my oncologist this week and was told that I didn't need chemo but he wanted me on tamoxifen. It took me a few days to actually take the pill, but I did today.
I'm sure that you've all discussed this, but when do side effects generally start to kick in? I'm sure that it's different for everyone, but generally speaking.
I've been enjoying everyone's postings. I'm still pretty new to all of this.
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Welcome to the T train, Sully,
There are a great group of women here.
SE's seem to be very individual. Susie would tell you she had headaches almost immediately. I have been on for 3 months with v minimal SEs: the odd hot flash, the odd night sweat, cramps in my legs and feet (but I suspect low calcium in combination with T is more to blame for this); sort-of dry eyes and continuing vaginal dryness (but I am post meno, so this is not new - just have to treat it differently now.
My onc said SEs should peak in 3 - 4 months - so I'll have to wait to see if they get worse.
Best of luck
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Oh dear, I miss one day and I am lost again
You tamoxibeauties have so much to say! And, I am so happy that you do! You should all have medical degrees. I swear that we know more than the ones that do have them!I will try to eat more bananas Bonnie. I tried the soap trick and it hasn't worked, but, it hasn't been long enough probably. I probably should avoid taking potassium pills. I don't know if tamox would mix with them. Glad you liked the fireman pic with the kitty! lol I searched long and far just to get that for YOU!
MTG, good to see you! I will get a new oncologist, just not for sure how soon. I assumed that I might need to have one and not just rely on my rads oncologist. I just love him so much and trust him, but, he probably isn't up on everything. And, I really can't stand the oncologist I have now, so, I am done with him!
You doing ok on Femara then Harley? I have been thinking of you. Has the dizziness subsided? Is that one of the side effects? And, are you doing ok now with your meds for your thyroid?
Hey Jeanette! So, you are dumping your onco too? lol I never liked mine from the start, so, this is no surprise to me that I am firing him. lol Have you taken the tamox yet? It took me awhile to take mine too, so, you are normal. Or, as normal as I am.
Hi and Welcome Sparrow! Glad you are here with us. I am sure someone will post some data about tamox and bones. If not, I will get something on here for you. Ok?
TCK! So, vitamin E for hot flashes? Another tip that is invaluable!
Congrats Caroline on being a Grandma! How wonderful!
And, I missed you Kelly! Sweet dreams!
If I missed someone, I am sorry. Just send me a mean email. lol
Anyone get snow? We got lots! It is light and fluffy though. Hoping the winds don't pick up and blow it around.
Susie
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Hi Kelly/Sully ~ Welcome and good to see you! Just answered your pm. Caroline is right this is a great group of women!
Caroline ~ How wonderful for you all and your new grandson sounds like a beautiful bonny baby!
The whole experience sounds warm and very positive. Bought my calcium (with VitD) today so I will be starting that tomorrow and will take it with food as you suggest. Well have a good night All!
Kelly
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Talk about lazy! This takes the cake! I think I know the road crew that did this! lol
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Sully - Welcome to our little club. Not one any of us would have set out to join but, as it turns out, absolutely a welcome place to come, get info, vent and just hang out when we're in the mood. Caroline is right, the side effects can start early but the 3 or 4 month mark is basically the point at which we'll have a good feel for what our individual SE will be. For a heads up on possible SE, the experts/ doctors who are on the academic side of this site have given us a pretty good summary: http://www.breastcancer.org/treatment/hormonal/serms/tamoxifen.jsp
Kelly - D3, a vitamin that if we all lived at the beach we'd get from the sun, is apparently incredibly important for general health including helping preventing loss of bone density and, according to commonly accepted thinking, equally important re: cancer. Both my medonc and gyno independently told me to start taking supplements which was enough to get me researching it.For discussions about the anti cancer aspects, take a look at:
http://www.sciencedaily.com/releases/2009/07/090706171500.htm and http://www.eurekalert.org/pub_releases/2009-07/joci-uta070109.php
For a clear discussion about it's general health benefits, see http://www.vrp.com/articles.aspx?ProdID=2130 (please note, this is from a supplement manufacturer but it provides a good, clear explanation of the advantages) or watch a really interesting You Tube speech, http://www.youtube.com/watch?v=9FMlQeH8RFA
By the way, check with your medonc about the MultiVitamin,. I was suprised to learn that they are a little controversial re: BC women. See http://community.breastcancer.org/forum/7/topic/694483?page=1#post_727556 . Some doctors say take 'em; some say skip 'em so it makes sense to check it out with your own guy.
Caroline - Yours is the most important post I've read. Congratulations. Your grandson sounds amazing as does your family, the birthing facility and, while we're at it -YOU. Cooking duty is a really nice thing to do to help out. (And, you sneaky lady you, also a great way to get in daily visits. )
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Jeannettes9565 wrote:
Could you gals please help me with this? The Oncologist took a blood test, & they called back & said it was "real good" and the count was 27... Was this test done to see if I have any cancer cells in my body? I don't know the type of blood test it was, & I think you girls can help me understand this!
Jeannette - Why not call your doctor's office and ask ? It makes sense to find out for certain. In the meantime, my guess is that this may have been a CA- 125 test and, if so, you're pretty much on target - the test is for a protein which is a "tumor marker" that can indicate the presence of certain cancers. It seems to be used most of all to check for ovarian cancer. Take a look at: the http://www.medicinenet.com/ca_125/article.htm for a really good explanation. Under 35 is considered "normal"/ "good".
Kelly - Sorry I was so slow responding to your question. Unfortuately, Calcium with D is NOT the same thing as D3. Doctors make a definite distinction and I even asked about it since I'm accustomed to buying Citracal/ Calcium Citrate + D for my Mom.
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Sparrow wrote: I had always read that Tamoxifen is good for bones- but it turns out that's in menopausal women. In pre-menopausal women it can cause bone problems. Do I have this right? My mom has severe osteoporosis and so did my grandmother. I'm wondering how much damage 5 years of Tamox can cause to my bones and if there's anything they can prescribe to reduce or prevent it.
Sparrow -
The bad news is that yes, in pre-menopausal women, T can cause some loss of bone density (Here's one study with typical findings: http://jco.ascopubs.org/cgi/content/abstract/14/1/78 ) but it's the best of the bunch so we're stuck with it.
The good news is there are things you can do: (1) Vitamin D3 and Calcium will help (See Calcium and vitamin D3 supplementation prevents bone loss in the spine secondary to low-dose corticosteroids in patients with rheumatoid arthritis. A randomized, double-blind, placebo-controlled trial. (http://www.ncbi.nlm.nih.gov/pubmed/8967706 ; have your doctor check your levels. (2) Also, talk to him about Zometa - whether for now or down the road. There's a drip which Alaina here does twice yearly and also a pill; it also has the fringe benefit of helping stave off bone mets if theres any risk of that.
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Hi My Team!
It seems we are all night owls!
MTG ~ Thanks so much for the wealth of information on calcium and D3. Funny thing is I grew up in a coastal town! I listened to a Dr. on the radio a few months back who said that the Vit D we get from the sun is also very good for our hearts...not so much for the skin though. Like everything I guess it is a balance. I will head back to Whole Foods today for the D3. I have my 3 month checkup at the end of this month so I will definitely ask about the multi-vitamin. Sigh...there is just so much to keep straight isn't there. Thanks for also keeping us informed and on track with all our otc stuff!
Susie ~ Hahahaha! That picture is too funny!! I must say there is an odd day where I can relate to that sentiment! Thanks for always keeping us smiling!! Here's hoping for a wind free day so you don't get all that snow blowing around!
Bonnie ~ We're so spoiled in this part of Cali, no snow to blow! LOL! My sis lives on the east coast and actually likes the snow! I have a cousin in Chicago who dreads it when her kids cant go out and play due to the weather.
Caroline ~ How is that grandson of yours?
Very smart move cooking for your son and DIL. I would volunteer every meal!! LOL!! 
Harley ~ How are you doing? Like Susie I'm wondering if you are over the diziness?
Have a wonderful day everyone and keep warm...I caught the tail end of a weather report and still wonder if I heard it correctly...is Florida expecting to get some sleet over the weekend???? If so WOW!
Kelly
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