Bottle o Tamoxifen
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Hi, Chevyboy,I was on Femara,Insurance refused to pay for it anymore,sooo I read up on Tamoxifen and talked to druggist.I could afford to pay for it myself.I dreaded talking to my oncologist about it.She was so adamant about me taking the Femara! I had taken it 34 months.Fretted /worried for a month before seeing her...paid 500.00 more dollars for the Femara til I could talk to her.I already spent 2500.00 before that! lo and behold!The oncologist was agreeable,so nice to me.She even made me feel a lot better about taking the generic form of Tamoxifen! So,you might be surprised when you talk to oncologist. I hope so..It really made me feel soooo much better with my oncologist agreeing with me.I knew I had my mind made up before I talked to her tho...I wished I had known what I know now,I would have asked for Tamoxifen from the get go.I suffered a lot on Femara,develped osteoporosis and spent a lot of savings! I think any dr can prescribe it.But I just think you would feel better asking the oncologist.It is our choice to choose the meds.Go for it!
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Hi Gals....I thank you soooo much for your input! I called my Primary Care, set up an annual physical for September, & she said I have to follow up with the Radiologist & Oncologist! I then called my Oncologist & left a message (of course) that I would stay on Tamoxifen, because I have not had any problems with it, & that I was just too afraid to start Femara....I have to go see the Radiologist after my Mammogram in November....So THEN I will talk to her about not having to also see an Oncologist! The nurse, said one or the other would continue with my care & the Tamoxifen! Shasta....I know....I have heard of a lot of women that do have problems with the Femara, but I am just confident that the Tamoxifen is the one for me....even if "they" say the Femara is better. The "end" results are the same! Also, the cost is a LOT more, & it IS harder on your bones... I don't want to say much more, because I know a lot of women ARE taking Femara, & are doing great with it. But we should have a choice, as to what we want to take.
Maybe by November the Radiologist will tell me I only have to check in next year! Especially because her card says "Radiation/Oncologist".....I wouldn't know why I also need to see an "Oncologist"............. That is like an on-going appointment with a gynocologist long after you have a hysterectomy...A Primary Care doctor should be able to give us annual check-ups without sending us to a "specialist" for each part of us that has a problem...unless they can't "fix it" And it is she that always orders the mammograms.
I guess after reading your posts, it sounds like every one of us has a different way of getting taken care of! I know my Sister-in-law just plain QUIT after her surgery & MammoSite Radiation for the 5 days....No Oncologist, no follow-up, no more Mammograms! I think she is nuts, but that is her choice....I think that is really rolling the dice, but again, some women just "drop-out" of their treatments! As long as SOMEone gives me my prescription for Tamoxifen, I will be a happy camper!
Thanks gals! xoxoxoxoxoSo now it's a few hours later....The Oncologist nurse called, because I said I wanted to stay on the Tamoxifen...& I am going in on the 19th for the Cyp2d6 test, to see if I am metabolizing it. So I guess it would be good to know....man, I'm just crossing my fingers here.... Hopefully I AM mebabolizing it, & when I go to the Radiologist after my Mammogram in November, she will tell me that she will "take over" with the prescriptions, etc...& I won't need to see the Oncologist again! It seems like this is just a big production! Ha!
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"Hi Musical! Yes, we love Chevys....We bought a '57 black hard top in 1961...Then he converted it to a stick, & re-built the engine SEVERAL times...put 4 on the floor......even raced it one year, & it was so fast one time, that he had it "fish-tailing" down the highway one day, & I was screaming at him & wanted to kill him, if he didn't kill us first! But this was a long time ago! He chromed a lot of the engine...
& we just sold it to his Nephew a couple years ago....At least it is still in the family! "
Aaaawwwwww chevyboy HOW COULD YOU?!?!?!?!?!?!?!? but ummmm since its still in the family well Iguess thats not so bad. My Hubby bought our 1960 chevy in 1979, and its been "part of the furniture" since 
..... We are the 3rd owner. IT was featured in theLate Great Chevy magazine. It had only a smallblock 283 in it, so he put a 350 in it and I Li-i-i-i-i-i-i-i-i-i-KEEEEEE and I LOOOOVE that V8 sound when they roar LOL.. Heheh my Hubbys getting "old" and drives more "sedately" than he used to , but Im getting worse, and its me that likes to "plant the boot". Hahaha had to laugh about your fish tailing incident : )))))).
Anywayz back on topic, Im feeling pretty good (just a bit wiped out from the pain meds) and my BS was pretty adamant that I start back on Tamox on Monday. He doesnt think the few days will make much difference because of how it "stays in your system".
Musical
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HI ALL
Ive now been on tamox for about one month now so far all good ,a few hot flushes ,my sleep at night is pretty good ,no periods still BUT i just loose it sometimes and im a raving lunatic ready to rip of some skin , other than that im enjoying life lol ,and my poor family walk on egg shells
JOJO
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Morning Gals! Musical......am I going blind, or is that little "surprise face" actually blurry! Damn! I just had my eyes checked, & here I'm blinking & blinking to clear that face up! Ha! And yes....when my DH, (72) didn't want to keep re-building our '57, his Nephew asked about buying it.... It had been on blocks in one of our garages for probably 10 years, & even though he still does minor repairs on our car, he just lost all interest in it! He, like your husband, could re-build them from the ground up! I'll ask my Niece to send me a picture of that "fire-eatin, fish-tailin-bad a** Chevy"!
There just comes a time, when as you get older, "things" aren't as important to you as they used to be! And since we had 2 Daughters, & neither one of them know a carburator from a wheel-well, they didn't want the car...So the Nephew is going to give it to his first Son when he gets old enough! Little "Sonny James" is going to be the rockinest' kid in High School! Geez, I hope he doesn't actually DRIVE it there!
Maybe I don't want to know. And yes, those "steel-pack" mufflers were sooooo COOL! I love when he blocked the heat-risers to make them even louder! They just "cackled!" The neighbors must have gone nuts! Oh, yeah, & the police issued him "several" tickets for said noise! But doesn't it make you smile now? His Nephew also put a Blower on it once, but you can't drive it around the "hood"....Ha! Well, maybe for a minute, then hide the car!
So why are you "Musical' ....and where ARE you anyway? And are you doing Okay?
Love you gals! xoxoxoxo
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I am new to this discussion board.
I've been on T for one year. A week ago, I saw my onc and told him of my SEs - cognitive problems (since chemo), trouble with word-finding, spelling and reading comprehension, trouble organizing, and big-time fatigue. He told me to stop T for one month.
What i didn't mention to him are my other symptoms of joint pain (which isn't bad) and muscle cramping (which is severe and hurts like a b**ch). I didn't think these could be from the T. My question is - have any of you had muscle cramping attributable to T? My foot muscles hurt almost constantly and my toes spasm. That hurts alot and makes me jump up and hop around.
Any advise would be appreciated.
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Hi Kiddo,
I have occasional VERY severe muscle cramps in my calves and feet. Only when I was pregnant did I ever have such cramps. As I did not have chemo, I blame T totally. Who knows why it is sporadic; differs in intensity; hits the lower legs/feet.....
Best wishes
C
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Took my first one yesterday...five years sure seems like a long time from now.....
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Day 16...fatigue and constipation. GREAT.
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Kiddo1- I definitely have had muscle cramps especially in the feet as have a lot of others on this board. They come and go. The other side effects seem to come and go also.
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Me too girls! Cramps in my legs, mostly at night! Sometimes they start in my thigh, all the way down to my feet! But not always! Probably the T pill! I've been walking a lot more, which seems to help~ And yes, the SEs kind of come, drive you nuts, then go away for awhile! So just wait....something else will surely come along!
Kiddo....so do you take Glucosamine & Calcium? Also Fish oil with Omega 3....and a multi-vitamin? I also take a lo-dose aspirin with the T pill.....Oh, & Vit. D3! I have heard these are good for you, especially now!
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take all the stuff Chevy does - 2000 IU of Vit D
C
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Chevyboy, what about this?
....is that clearer? Soorrry Im just being facetious now.... . What a day, Ive been trying to get back on here to post and everythings taking twice as long to do....but really I have to say this is no where near as bad as a mast with LN's. Healing should be a doddle. Im feeling pretty good.
Hey yeah Id like to see the mean fish-tail'n chevy if you can swing it, and Im from waaaay across the other side of the pond in New Zealand. Heheheh better not get me started on Cop stories and V8s but sure theres many a laugh to be had about past escapades. One thing I know,even the kids of today, when they hear that characteristic V8 roar, they turn their heads and drool. Dunno what it is but it sure beats the screeching whine of a rotary or an Austin that sounds like it has fluff up its duff
. "So why are you "Musical' "
Cuz I love music
. Cheers
Musical
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Morning Gals! Musical.....that was funny!
But how did you make it so small? And isn't "Music" of all kinds, just the best? I was raised with music....My folks were always singing, & my Brother was, & still is a very popular drummer in Nashville! If you google Kenny Malone, a lot of pages come up about him! I don't care for a lot of Blue Grass, or Rap, but I LOVE the big bands, & the big "sounds".....Whitney Houston is the best....or was. I love my iTunes "Library," and I'm always adding songs into that! I can find ANYthing from the '50s, that I used to listen to, & it's only 99 cents! I mean like Rock Around the Clock...And Slow Walk, by Bill Dogget....Cry, by Johnnie Ray.....Wow! I'll bet most of you gals didn't know I could still "remember" things, ha! So beautiful out this morning! Only 62! Our poor Lacee just shook & panted all night....The fire-works weren't THAT bad, but it just scares her so much! DH put her on the bed, & I laid my hand on her, & tried to calm her down...then I turned on TV...thought maybe more "noise" would help.. But she never DID get any sleep I don't think! She is quieter this morning...
And yes, the "roar" of those mufflers! And I LOVE Harley's! The sound of them just makes me smile....and dream.....that's freedom! Those sounds just make your chest rumble, ha! Kind of like sitting too close to a live rock band in front of the speakers.....Ha, ha!
Will I EVER grow up & act like I'm supposed to? ......... Nah.....it's too much fun remembering & having the time of my life! Have fun girls....& keep those fireworks down! zzzzzzzzzzzzzz
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"But how did you make it so small? "
Haha
See the piks Ive done below
Since youve asked and wanna know
Large small short or tall
This is how you do it all ;-)
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1/Insert imag/emoticon
2/ One left clk over the image - a box with about 9 little spaced out squares will encircle the little image
3/ Move mouse to the side/corner and hover over one of the little squares - a double headed arrow will appear.
4/ Click hold the doubled H arrow (make sure the double HA stays as a DHA whilst you drag) and drag in the desired direction. You can have anything from a true square to a flattened doughnut affect to a tall skyscraper affect ;-)))))
OK yeah I know its a bit rough on the eyes hehe especially when you first get up of a morning LOL....gee a girl could even think there was something seriously wrong.....
Yes we love the sound of Harleys too : ). Dont know about the US and other places, but over here theres a very SILLY crowd of young people who have a huge attitude problem to match their STOOPID cars. We call em boyracers and the whole thing is nothing other than a passing fad that lies in the realm of yet another attention seeking ploy..... unlike the perennial V8s :-). Still, as I say, theres still people of all ages who know a good sound when they hear one...;-)
Music is a very personal choice for everyone, and throughout my life, and as a musician myself, I made some pretty decisive decisions about it right back when I was young. For me, music was also like one of those little life ring thingees someone throws overboard to save you, when the chips were REALLY down. I must confess the music type I REALLY love falls into quite a narrow genre and like you, that certainly doesnt include rap and bluegrass. (Yuuuuuukk) I have been quite "spoilt" throughout my life only feasting on what I like the best since music is one of those things I do like people watch movies. In other words I like music to either get ALL of my attention or not at all. I dont like background music. I cant drive (effectively) while music is on or Im likely to have an accident!!!!
What I cant stand is facades. I think if people genuinely like a style of music, then hey thats great and I respect that, but if they "like" that particular style to please a certain group of people or to "fit in" then it means squat all.....and theres a good percentage that falls into this catagory. I can also respect some really great talent, though its not necessarily my taste. Theres an old saying ....he who serves, also stands and waits (milton) ... and that principle, for me, is really born out in music choices. I like music to "breathe" where its not filled with everything in your face all the time, including embellishments and complication.
As a musician, and I do my own recording, studious attention to sound quality is an important factor thats just part of the territory. As such, I'm not keen on having a library full of Mp3's or anything less than 16bit 44.1Khz (CD quality) or better still DVD quality which is typically 24Bit. However that been said, if theres a great song thats well written, I can still REALLY appreciate it even if its scratchy and in mono!
My absolute favourite would have to be slow solid rock ballads with the BIGGEST BIGGEST sound possible and especially BIG drums. YEAH! Great music is like finding the solution to an infernal itch!
Hehehe Im still wondering if I'll ever outgrow the idea of doing some serious wheelies.
Probably not me thinks.Well back on track, I've just started Tamox again this a.m. and Im pretty happy about that. I was taking it at night, but I thought Id give the morning routine a bit of a go and see if I sleep better.
Have a nice day all!
Musical.
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OKAY!!!!!!!!! That was driving me crazy, but I finally GOT it! Ha! I like that terminology, about "Boy racers!" Yes, that sounds about right! But at least where we live, in Denver, there is a lot of law-enforcement around here that "frowns" on street racing! It's bad enough lately because of all the drinking & driving..... We have seen ALL of this...even in our own neighborhood!And the cell-phone talking & texting drives me nuts! Sure, if I need to talk while I'm on the road, I pull over....or just wait until I've got to where I'm gettin'..... We saw, or heard, this LOUD crash one night right outside our house! This young gal, somehow managed to pile into two parked cars, & "flip" her car upside down! Man, it looked so awful! Everyone called the police, but they were there in seconds! An ambulance came to drag her sorry a** out of her window, and take her away, & when the tow-truck started to turn her car over, you could hear the beer-bottles falling out the window! I never heard any more about it....but our neighbors got 2 wrecked cars out of the deal.....She smashed one into the other...so both were totaled! And then ANOTHER day, this car ran the stop-sign on the corner, & pile-drived this poor gal that was just driving along, & flipped HER car over onto the parking! Now THOSE neighbors helped her crawl out of her window, but the ambulance came & took her away also! When you actually see & hear things like that...it really makes you take it easy! I MEAN, sometimes it's like a demolition derby out there! So what was I saying? Oh yeah, starting Tamoxifen! I do take mine in the mornings...haven't tried it at night though! Take all the vitamins also! I started taking Melatonin for sleep problems, but THAT one caused me to take Imodium AD twice a day! So now, I'm not taking anything to help me sleep & not dream....it'll probably go away anyway, like all the other side effects...????
Okay girls.....your turn! xoxoxoxo
(footnote) When I hit "save" the little emoticon went right back to it's original self! Oh WELL!!!
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Hey Chevy, re your footnote, if you meant "save" as in submitting your post, (???) it looks like youve mastered it to me. Your little emoticons lips are definitely sealed : ) in a wider way than normal LOL..
Yeah right. NZ's law is a soft touch and a joke. Smack smack you naughty little children, dont do it again....or we'll ummm.....and thats about it. We have just recently bought it in as Law here that theres to be no HOLDING cellphones while driving. If you have a "handsfree" apparatus then you still can use them, but I think thats just a band-aid approach. Distraction is distraction, and its not just "holding" the cell phone thats all there is to this saga, but SPEAKING as well. When youre speaking to someone, you cant possibly give 100% attention (which is what you need) to negotiating all the aspects of driving safely. I was following a lady out on the highway once, and I couldnt figure out why she was continually speeding up and slowing down. When I fiiinally got to pass her, yeah, what did I see? she was yakk'n on a flippin cell phone. I better not say what I did as we drove by, but I sure got some satisfaction out of the look. Heeheee.
Im just looking into the vitamins and things, as part of, as they say, being our own best advocates. As a ER + lady, Im VERY interested in the VIT D thing and Iodine too. Ive also been thinking about melatonin but I know very little about all this. Is it a natural product? As I get time I want to go through all these threads as its great to get peoples own experiences.....and the more that happens, the more you can build up a more solid and accurate picture.
Cheers
Musical.
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Musical.....no WAIT!!!!!!!!! Yes, I have read that Melatonin does work with Tamoxifen, as far as "soft tissue" something or other....BUT I DID take it for about a month, to help with the sleep problems, and I finally had to take Imodium AD, (spelling?) to stop what the Melatonin started! I quit about 5 nights ago, & things have straightened out! MAN!!!! It's like you take something to help with one thing, then even IT causes problems! So try it at your own risk....
Yes, it does help you sleep, or not dream as much...but maybe a shot of whiskey at bedtime, like my Grandmother did would do the same thing?......Just KIDDING!!!! (I don't like whiskey) Or maybe she also drank "Port"....I remember that. She DID that so she wouldn't have to listen to Grampa snore....Ha! And I just KNOW how you "signaled" that driver!!!! Yes, good for you! We should all carry those "bull-horns" to scare the dickens out of those people with cell-phones growing out of their ears! What instrument did or do you play? Okay.....till later.0 -
Hi all, I'm back, after a lovely almost week in the mountains, hiking and camping and photographing. Aaaahhhhhhhhh!!! Love that fresh air, blue sky, and sunshine!
Musical, so glad your procedure went well. And that you're glad you're back on the tamox. You had exchange surg right? Are you happy with the result? Hope so!!
I realize this topic is several days old but I wanted to add 2-cents worth about which docs we need to keep seeing. I too feel like there's a zillion out there and like, what's the point? In our longer term care they do seem really redundant. But really, it started from the beginning, when my GP who had ordered the fateful mammo and biopsy, referred me to both a medical oncologist and breast surgeon. It was good to see both, but they both gave me the DCIS 101 lecture, and one ordered an MRI and after that they somehow went beaurocratic and results fell through cracks and it was clear there I had a team of docs (incl plastic surg) but no team leader. I asked them explicitly, who's the lead on this, who's going to be my primary point of contact and coordinate, and they said "we're a team, we all have all your records and will be looking out for you". But instead stuff fell through the cracks. So I said bye-bye and went in search of different docs. I found a private practice BS who said "yes, I will be your breast doc from now on and coordinate all your care, you'll see me every 3 mos after your MX for 2 years, then....blah blah, blah". So I used her for MX, with a PS she likes to work with, and afterwards she was like "Bye - go see the oncologist about hormone tx and chemo, see you in 3 mos." I asked her opinion of hormone tx and chemo and she said "I don't want to go into that since its not my expertise - you really need to see a medical oncologist and they can tell you all that's needed." And I'm thinking...well, so much for coordination of care - you just passed me off rather than coordinating, you $!^#&%#! So I went to see 2 oncs, chose one. I didn't have to do rads so never had a radiation oncologist on my team. I did see the BS for a 3 mo post-surg checkup because it seemed prudent, but after that when I next say my onc I asked if there was any reason I need to be seeing both him and the BS, and he said no. I had already decided I didn't want to see her because I didn't care for her that much and I was paying out of pocket for her (she's out-of-network) and it didn't make sense if I didn't need to. So now I have the onc, who will do my cancer (post-cancer) care, and I also have a new GYN & I'll use her for the lower half exams plus order mammos. Overall, I was really disheartened that I ended up having to be my own team leader instead of having a doc who really coordinated and made sure I was really getting everything I needed. Now that I'm post surg and just on tamox, I'm going to use my medical oncologist as that doc and drop the BS (if I had a rad onc I would also drop them). Regarding which doc(s) to keep...its the medical oncologist (or just oncologist) who's expertise is the chemical stuff, e.g., chemotherapies and hormonal tx, the radiation oncologist who's expertise is (surprise) the radiation, and the surgeon or breast surgeon who's expertise is the surgical part. So if I were to say we needed one doc over the 5 yrs of tamox my default would be the med onc, but some rad oncs and surgeons might be comfortable dealing with the tamox too, or even one's GP, so which to keep is pretty individual I think.
Did anyone else have a better time finding one doc to really be a coordinating doc for all your stuff, or did everyone just pass you off once they finished their bit and hopefully things happened for you? It seems like a really crappy system, and I learned quickly to be my own advocate and find docs, but I still worry that there might be something I just didn't know to ask about??? Hope not!
Well, as you can see I'm back with my long posts...whew! Hope everyone had a good 4th!!
CS
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My GP passed me off to a BS and he referred me on to a Med Onc. I also saw a RAD Onc.
BUT the BS I would say is my primary go-to dr.
The Med Onc is quick and abrupt but very thorough and the BS spends time with me going over what the Med Onc has said/done and discussing options.
I continue to see both of them and will for the next couple of years.
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Regarding which doctors to see. I did not have MX but just a lumpectomy times 2, no lymph nodes and radiation. My BS does not feel the need to see me anymore after he did the post surgical check. I see the rad onc and the onc every three months. Seems a little redundant but I am sticking with it for now. The rad onc ordered my mammo. I also see a gyn yearly and my primary doctor yearly.
Musical - I have had some luck with melatonin for sleep. I have not had any other problems with it. It is a natural product and does not seem to have any problems along with tamoxifen.
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Chevy, Ok I think Im going to have to find some sort of resource that "translates" different drug names for different countries....ie, In NZ we have Amitriptalene (spelling???) which is the same as Elavil in the US. This isnt always the case like Tamox is Tamox here and in the US, but for when it does occur it sure would be good to be able figure this all out. Soooo, Ill have to look ImodiumAD up as I dont know what it is.
Hehehe I cant imagine the drastic possiblilities involving a cell phone and an austin....
I tell you theres a kindof unwritten law here, ESPECIALLY among V8 people, that anyone who drives an austin is opening themselves right up to being the butt of many jokes. This is done many times without anything being said.... Haha, a pictures worth a 1000 words. . Now, as such, if I were to blow a horn at one, theres no telling what might happen, as theyd typically be likely to indicate to go right and then turn left.... or they suddenly start bunnyhopping right in front of you, ..... or worse, suddenly stall and/or stop!!!. At the very least youd wanna be a mile away .... thankfully, these days theyre either in the car wreckers or a collectors item, though I cant for the life of me think, who in their right mind would do the latter. I play a number of instruments...many years ago I used to play Drums in my fellowship I went to, but I injured a nerve in my right hand and too much jarring still sets it off to this day so I had to leave off. As I wanted to do my own recording I opted at the time for a compromise and got a drum Machine, which was MUCH MUCH easier to record, but still doesnt match the "real" drums in my view. However, these are the days where multitracking has become very affordable, and thus made all options much easier, whether external (eg analog drums) or internal (eg digital synthesizers). I write all my own stuff and play an electric guitar, an accoustic 12string guitar, keyboards, sing, and "pull everything together" with my Audio recording software called Logic Studio on a Mac. I just LOVE this software and soooo appreciate the possibilities that have of recent years opened up to people like me, who want have more control over all the aspects of making music.
CS hey glad you enjoyed your time out. I think you can safely add quite a number of 0's after your "2 cents worth"
. Your posts are NOT too long! Thankyou for your kind words. No I didnt have Exchg Surg. as I opted for no reconstruction when I had my Right Uni last year, and thought Id just go with the prosthesis option. Since recently suspecting another lump in my Left B, and a HORRID painful biopsy later, I thought blow this, take it off, and while Im at it, be done with more biopsies mammos etc! So, I had my prophy mast. Im as flat as a pancake dropped from 50 stories Haha. ...well not quite THAT flat on my Right side as theres a bit of oedema and a concave area where the tumor was, but I feel SO MUCH BETTER not being lopsided. I wasnt huge but I certainly wasnt small either. My decision was made that much easier as I was just starting to get a sore back on and off, which I strongly suspected was the lopsided thing happening. It turns out so far, though its early days and Im only 9 days out of out surgery, there hasnt been anymore dramas with my back. I strongly suspect that'll be the end of it. Hopefully.
Just commenting on your post without having read prior ones about this..........
Did anyone else have a better time finding one doc to really be a coordinating doc for all your stuff, or did everyone just pass you off once they finished their bit and hopefully things happened for you?
This is an interesting point. My experience is this. I have felt a little confused and "lost" about being "discharged" from the various departments once theyd "finished their bit" as you say. Also as you say, Ive felt there hasnt been any one person thats clearly stood out as been available as the overseer to it all, but rather just one of the team. I do have a great "Lead Clinical Nurse Specialist" who has been really wonderful in all shes done, and theres certainly been a fair amount of co-ordination and support from her. However, she is run off her feet, sometimes hard to get hold of, and has not always been available because of meetings/holidays/sickness etc etc. I tend to not want to prolong any dialog with her as she is constantly in"overdrive".
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- So, in this scenario of no clear leader, if something goes wrong, you are much more likely to get blameshifting and the classic "passing of the buck", since everyone is supposdedly equally "responsible". On the face of it, it might look like you have lots of support where there is the "team at work" but in reality, without a SINGLE top co-ordinater, its just a case of "too many chiefs and not enough Indians". Never an ideal situation, which at best, just creates more red tape, less efficancy and people ending up chasing their tails all day long, and at worst, a full blown communication mishap complete with misinformation.
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From what I can see, overall, there tends to be 2 main scenarios....1/whether youre insured or 2/ whether youre not. The US tends to be very much (from my understanding) from the 1st catagory. Which camp youre in makes treatment options vastly different. In NZ we have a free hospital system but your choices are limited in exactly who you get for what, unless you go "private" which is generally for the insured. Generally people who use the public system, which is, I would presume, most of us, dont get to call the shots on who we will and wont see, unless theres been a problem, but even that may vary depending on whether theyre shortstaffed. We do get to choose what GP Doc we want to use, but sometimes theyre full up and they close their books to new patients. In the hospital system, it sure would be nice to have more choice in the matter, especially initially, but they probably think of it as "beggars cant be choosers" even though we're all paying plenty of taxes
. - I still worry that there might be something I just didn't know to ask about???
And me thinks nowhere is this as pertinient than in things medical. This is the crux of the matter isnt it. Knowing how to ask the right questions, (as if the stress of diagnosis isnt enough to cope with as it is!!!) and how do you know what these questions are unless you 1st have a concept. How can you have that unless youve been through it 1st. Like a catch 22. When you have a system thats stretched for time, it just follows that that makes for an atmosphere where things are rushed.... and thats not a nice feeling. I was fortunate in that there was a lot of material given to me to get wised up, like pamphlets booklets and DVDs. However this was overwhelming at the time and I just couldnt take it in. My DH just systematically and quietly read it ALL to me. Much of it went in one ear and out the other. If it wasnt for him I dont know where Id be. I wonder how those who dont have a support person (hubby/family/friend) get on!!!Anyway, I was told Id be on Tamox for 2 years (started end of 09) and the last 3 on Arimidex. I kinda wonder if thats set in stone, who actually co-ordinates the "changeover " or what. That to me is like another little "loose end" that Id rather have tightened up. I think we people like to have things organized in as cut and dried a manner as possible and who can blame us??????Musical
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Hi peg119, thanks for your input
. I wonder, if its a natural product, what/where it actually comes from....like is it derived from a plant?Musical
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Okay gals...when I googled Melatonin, & read about it...I gather it is a natural supplement, called.... methoxytryptamine....And it is a natural hormone that we have in our bodies, but when we reach an older age, like 80 it says, that we have run out of Melatonin! The dakness, or night, is what triggers us to be tired, & fall asleep...working with the Melatonin in our systems...but when we are running low....sleep becomes a problem in older people....Not to MENTION any of us taking Tamoxifen! http://www.webmd.com/sleep-disorders/tc/melatonin-overview I just found that web-site.
And that's all well and good, but I took it for about a month, & it caused ME to becomes good friends with the porcelain throne! I mean, I had to run there all day long! So then I had to take the Imodium AD to fix THAT problem! When I finally figured out that Melatonin CAN cause diahrreah, I looked it up (again)....and yes....! So I quit taking it, and I don't need the Imodium AD any more either! I dream a lot....but that's better than the OTHER problem!
My Primary Care, gives me the impression that she doesn't want to be bothered with any continuing care with me....& maybe that is not their job....That's what the Specialists are for... But I think after my next appointments in November following my next mammogram, either the oncologist or Radiologist will be the only one I will have to see, like every 6 months or yearly. And yes, we DO have a choice! We don't have to see ANYone if we don't want to, but that's not advisable. My Sisterinlaw is doing just that....but that's her choice. So the Primary Care is the one I see for a yearly exam, & then SHE refers me to someone for anything she can't handle!
I'm going to the Oncologist in a couple weeks for that blood test for the CYp2d6 test, to see if I am EVEN metabolizing the T pill. It's just that I WANT to stay on Tamoxifen...I know the Femara is supposed to be better, & I MIGHT have to take it anyway, if I am not metabolizing Tamoxifen. So that's all that I have to worry about....Ha!
Musical! Yes, my Brother has been a Drummer all of his life...Look up Kenny Malone on Google, & there are articles about him. He is releasing a new instructional video called "Hand Drummin"....And music has been his life, & still is! He just performed with Crystal Gayle (again) & sent me a video of that session & the group. But he is mostly a back-up studio musician. He has been in & had a couple groups of his own, but he hates the traveling. He comes here sometimes, to play with Daryl Scott....& Tim O'Brien.... for the Telluride Blue-grass Music Festival....
And yes, CS....They DO pass us off! But I chose a different Oncologist from the first one I was sent to....because he was so "indifferent!" My new one is better, & she is a she...& that makes a difference I think...Ha! I read an article, about "Why CAN'T a primary care doctor, take over after the treatments have finished!"....We just get blood tests, & Mammograms now, right? And they can order that, or just do it! If we have a problem (again) then we have to go see a Specialist! The Insurance Companies don't make us do it....We go because we are sent there. Am I just being a rebel in this bunch? So many Docs, so little caring........
Okay, I'm done....till next time!
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Musical - Here is a little info on melatonin from wikipedia.
Melatonin (pronounced /ˌmɛləˈtoʊnɪn/ (
listen)), also known chemically as N-acetyl-5-methoxytryptamine,[1] is a naturally occurring compound found in animals, plants, and microbes.[2][3] In animals, circulating levels of the hormone melatonin vary in a daily cycle, thereby allowing the entrainment of the circadian rhythms of several biological functions.[4]Many biological effects of melatonin are produced through activation of melatonin receptors,[5] while others are due to its role as a pervasive and powerful antioxidant,[6] with a particular role in the protection of nuclear and mitochondrial DNA.[7]
In mammals, melatonin is secreted into the blood by the pineal gland in the brain. Known as the "hormone of darkness", it is secreted in darkness in both day-active (diurnal) and night-active (nocturnal) animals.[8]
It may also be produced by a variety of peripheral cells such as bone marrow cells,[9][10] lymphocytes and epithelial cells. Usually, the melatonin concentration in these cells is much higher than that found in the blood but it does not seem to be regulated by the photoperiod.
Melatonin-rich plant feed, such as rice, ingested by chicks has been shown to reach and bind to melatonin receptors in their brains.[11] No food has been found to elevate plasma melatonin levels in humans.[12]
Products containing melatonin have been available over-the-counter as a dietary supplement in the United States since before 1994.[13] In many other countries, sale of the hormone remains illegal or requires a prescription, and the U.S. Postal Service lists melatonin among items prohibited by Germany.[14]
The hormone melatonin is used to treat circadian rhythm sleep disorders and some types of insomnia.
Studies have found that the use of melatonin can help entrain the circadian clock to environmental cycles and have beneficial effects for the treatment of certain forms of insomnia.[81] Prolonged release melatonin has shown good results in treating insomnia in older adults.[82]
Other studies have found that for certain types of sleep disorders, melatonin is not effective. A 2006 review found that although it is safe for short term use (of three months or less), there is "no evidence that melatonin is effective in treating secondary sleep disorders or sleep disorders accompanying sleep restriction, such as jet lag and shiftwork disorder."[83] However, a 2004 review found that melatonin significantly increased total sleep time in people suffering from sleep restriction.[29]
In another study, researchers concluded that while "there is some evidence to suggest that melatonin is effective in treating delayed sleep phase syndrome", ... "There is evidence to suggest that melatonin is not effective in treating most primary sleep disorders with short-term use (4 weeks or less)."[84]
Melatonin appears to cause very few side effects in the short term, up to three months, when healthy people take it at low doses. A systematic review[90] in 2006 looked specifically at efficacy and safety in two categories of melatonin usage: first, for sleep disturbances which are secondary to other diagnoses and, second, for sleep disorders such as jet lag and shift work which accompany sleep restriction.
The study concluded that There is evidence that melatonin is safe with short term use.
A similar analysis[84] by the same team a year earlier on the efficacy and safety of exogenous melatonin in the management of primary sleep disorders found that: There is evidence to suggest that melatonin is safe with short-term use (3 months or less).
Some unwanted effects in some people, especially at high doses (~3 mg/day or more) may include: headaches, nausea, next-day grogginess or irritability, hormone fluctuations, vivid dreams or nightmares[91] and reduced blood flow.
While no large, long-term studies which might reveal side effects have been conducted, there do exist case reports about patients who have taken melatonin for years.[92]
Melatonin can cause somnolence (drowsiness), and therefore caution should be shown when driving, operating machinery, etc.
In individuals with auto-immune disorders, there is concern that melatonin supplementation may ameliorate or exacerbate symptoms due to immunomodulation.[93][94]
Individuals who experience orthostatic intolerance, a cardiovascular condition that results in reduced blood pressure and blood flow to the brain when a person stands, may experience a worsening of symptoms when taking melatonin supplements, a study at Penn State College of Medicine's Milton S. Hershey Medical Center suggests. Melatonin can exacerbate symptoms by reducing nerve activity in those who experience the condition, the study found.[95]
The use of melatonin derived from animal pineal tissue may carry the risk of contamination or the means of transmitting viral material. The synthetic form of this medication does not carry this risk.[4][96]
I got this info at the following website: http://en.wikipedia.org/wiki/Melatonin
Hope that helps. Not sure if you can get it or not.
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Thanks everyone for sharing perspectives on which docs have turned up in your followup. Its interesting to see how everyone is different; hopefully we're all getting the care we need!
Musical I'm glad your surg went well. I expect being even will affect your posture and back in a good way, as you say. I did tons of research about everything because I felt the "hand-off, no true coordination" right from the beginning and feel like I got some less-than-optimal care during my biopsy phase and I wasn't about to let it happen again. Bet even with all my research and questions there's a tiny part of me that always wonders if I'm missing some important bit. I really like the onc I have now and he seems to be one who looks at the whole picture, not just his chemo/hormone part, so I THINK I have an allaround guy now (e.g., my "team leader") but frankly I won't know for sure unless another thing crops up and I'd just as soon not have to test that!
Chevyboy, I may not be remembering your sequence right, but I think you're saying they put you on tamox, and now they want to switch you to femara, and you want to stay on tamox. It's interesting that now that they want to switch you and you don't want to switch that NOW they want to do the Cyp2D6 test when they didn't bother with it before. Seems like if they believe in it then it was just as important when they started you on tamox as it is now. Well, I'm probably being too cynical.
Have a good day all! Those of you on the east coast - stay cool!!
CS
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Man, I don't know what happened to my post!!!!! It was there, & now it isn't! Anyway, CS, I KNOW!!!! I asked for that c6p2d6 test from the beginning, but BOTH my Radiologist and the Oncologist said they didn't think it would make any difference! In other words, they didn't trust the test! But NOW that the Oncologist knows I want to stay on the Tamoxifen, she will do the blood test! So I'm going in in a couple weeks!
And Peg.....It's so interesting reading about Melatonin....I tried it....but after a month, I could sleep better, but I had diarrhea! So then I had to take ImmodiumAD! I mean lots! But after a month, and blaming all this problem on the Tamoxifen, I thought....I didn't have this before I started the Melatonin! So I quit THAT one....and after 3 days, I could also quit the ImmodiumAD! It's like if you take ONE thing for some stupid problem, you will probably wind up with some OTHER stupid problem! So now I dream a lot, but I don't care!!!!!!!!
Okay....if THIS one gets lost, I quit....Ha! Jeannette
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Chevy, Oh no dont quit! but isnt it INFURIATING when your posts go AWOL into cyberland. Especially if you arent the world greatest typer and youve just written up a long post. Grrrrrrr! Thankfully it hasnt happened to me on this website yet, but being on DOPEY DIAL-UP my connection resets now and then, but I can still re-dialup and keep my post active. Generally, I've learned the hard way ( too often) to type my post into wordpad or similar, and then when Im good to go I just paste it in the reply field. This website sure has a "unique" pasting thang you have to negotiate 1st though.
Yes I do recall years ago something about melatonin and a connection with the elderly having so many problems with sleeping because as you get older and older, it is produced less and less in our bodies. Sometimes it seems like things are F-act to B-ront ... of course EVERYONE needs their sleep, but for oldies, right when its needed more (for a variety of reasons), it becomes harder to get. Theres nothing worse than lying there hour after hour after hour AD INFINITUM not being able to sleep. Im sorry youve had probs with "porceline throne" (haha that made me laugh though : -DDDDD). I hope you can end up getting your sleep sorted coz its a SYNDROME to have lack of sleep, but you sound like youre on track again. Just have sweet dreams.... OK
. I know that here, it can be "costly" to be pro-active ... in other words I know already Ive had those typical "sideways glances" when Ive wanted to find out about something, or asked what my options are as far as testing goes. When I asked about the Tamox test for metabolism, the reply was a generalised "if you are getting SideFX then it must mean youre metabolizing it" I wonder if that is meant for ALL SE or just some??? I did get a few headaches but they werent bad ones. In actual fact with the hot flashes, which for me have started to get less and less, I wonder, as Im not altogether sure that Tamox was responsible for them in the 1st place as I'm "at that age" anyway. The BT I had wasnt conclusive either as to whether Im Pre or Post.
Peg Wow thankyou for that. All this info really helps and wiki is a great place to start researching stuff, even though Ive been told you have to watch it as there can be misinformation there. Still its helped me out many a time.
CS, IMO you can never be too cynical where youre dealing with something as serious as BC! Thanks for your kind thoughts
Im just about to get my drain out soon, maybe in the next day or so, and Im NOT looking forward to it. Last time OUCH!!! and they kept pulling and pulling AND pulling liike there was a mile of coil in me or something. AaaarrrrghBet even with all my research and questions there's a tiny part of me that always wonders if I'm missing some important bit.
I hear you, and I sure know that feeling. I think all of us who want to do the very best we can, which surely would be most of us, can relate to this. Imagine how I felt even though I heeded my DS's advice after she was dx'd, about Mammos and stuff, and then I turn around and get dx with a whopping 4.5cm lump. I go through times where Im angry at myself for not being strong enough to push harder earlier. It can be a fine line when you know you are a person who is like that anyway, to temper it with so-called common sense or whatever. Ive come to the decision that all is summed up like this, with the Medical People and dealing with them...... "It might be your job but this is MY LIFE!!! "
Ive used it before and Ill use it again. Cutting to the chase, Hey!!! CANCER IS A LIFE AND DEATH SITUATION!
All you lovely Ladies have a great day now!
Musical
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Chevyboy - that's interesting about the Melatonin. I have had the opposite problem and am dealing with constipation. I figure it is from the tamox but could be from something else. It isn't much fun though.
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Musical, Ooh, good luck with the drains. My first one (after MX) was absolutely no problem, didn't feel it a bit. The 2nd one (after exchange surg) I felt a bit but not bad. Regarding the comment that if you're having side effects you must be metabolizing...that's generally not been shown to be the case. SEs are the tamox and/or its metabolizes acting in other parts of the body and no one studies what's required for those to be stimulated. They have studied whether various SEs correlate with tamox benefit and the results are mixed - most studies show no correlation, a couple show correlation of HFs with effects. That's as deep into science as I can manage tonight.
Jeannette, definitely don't quit! Oh, I know one major way that posts disappear - if you're typing one, and then you switch to a different forum page to check someone's post (or for any other reason, even by accident), and then hit the back button, your post isn't saved. Its a flaw in BCO's text boxes. So just never, ever leave the page you're on and typing into unless you copy what you're typing first.
As for the cyp2d6, ok I guess I wasn't being that cynical...you thought of it too! Why do they want to switch you anyway? Are you postmenopausal? In which case I guess I'd ask why they started you on tamox to start with. Have we had this conversation before? I feel like I've had it with someone and I'm worried you've told me all this...sorry if so!!
Night night all!
CS
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