Bottle o Tamoxifen
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OK, I just emailed the GP, and just said that I don't want to go through the weekend, without knowing about the radiologist report, and that this seems to taking a long time. Now at least I did something, but I think I want a new doctor.
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GOOD FOR YOU LEGGY!!!! And another doctor can read you the report. You have a right to your medical information. Someone has to be covering for him tomorrow, maybe call the radiology department. At the very least a second opinion. Again, no need to be nasty, but get another doctor. Maybe your GP has a way to get someone who can get the report? Again, at the very least, get an appointment to see someone else and for instance, you probably will have to get your medical records sent to the new doctor. That should be interesting. It doesn't mean you are leaving your doctor, it just means you are getting a second opinion, which is the norm for cancer patients, not a slight. And then you follow normal procedure to get your records sent, and see if you can get your own name on the list. They may not send to you automatically, but the release will be in place for you to request copies. When they send the records, your xray results may pop up.
So... you feel any better standing up for yourself? It always feels better to me!
I will look for it but I remember reading (yeahh yeah yeah me and studies) that hospital patients who complained were generally more disliked by the medical staff, but they also got better care.
Go get 'em. Nicely, politely, but get 'em.
P.S. Oh yeah, maybe just get your medical records sent to you, then you can take them to any doctor you choose. And be ready to see more than one doctor. I saw 4 or 5 oncs depending how you count them.
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Yes I do feel better! I tend to hold things in to long, and then when I do express my feelings, people think I'm pissed anyway, so why not just be polite but firm, right.. The only doctor, I really liked was my surgeon, LOVED HIM, but can't have him fight all my battles, darn.
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CALL THE SURGEON!!!! Ask for test results!!! And/Or ask for referral to another ONC.
Although I loved my surgeon too, he sucked at recommending ONCs. Well, then again, not his fault really. He recommended this one ONC who made me crazy.. terrible experience but I just saw this same horror doc is the family physician of big time NYC celebrity. Diffren't Strokes...
You know that great ol motown song... you better shop around! shop, shop around do wahhhh
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OK, he at least always called me, never emails, unless I emailed him.
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Hey guys - Leggy hope you don't have to wait longer than next Monday!!!!! Rachel is great isn't she.
Ainm - I wasn't freaking out at all till I went to bed and couldn't sleep. My rational self lost out to the what if's - always worst at nite. Feel empowered today though and no stupid test that you guys haven't heard of is going to get the worst of me.
Rachel - boy you are a special lady ... it's not the information you hunted for me but the fact you did it for me that makes me feel better. Like Meg did. There is a phase of just total confusion and defeatism but I'm back feeling in control now. Stupid CA125 test. I called my Onc's office this morning and had them fax the request to the pathologists and I had the test redone today. I'm predicting a 29 score this time. Any other bids? I hope you can get your place sorted soon. What a horrendous thing to have to deal with on top of this, I hope you didn't lose to much irreplaceable stuff, things money can't replace - all the heartstring things which make a house a home. Thank you Rachel.
Sorry to be a downer over this guys... I even struggled with my running yesterday - I'm not little miss positive all the time I guess (what a surprise!!!). Doesn't matter how in control you think you are there is always a time you need the love and support of this great place. Believe me I am feeling better but just a little emotional. Stupid BC.
big hugs and have a great weekend
Helena - I'm off to have a glass of wine with my DH
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JanMarch.... I'm also in the heat of Texas and on tamoxifen and I agree with you the hotter it is the more hot flashes I have and the longer they last!!!! Not sure if it's the Texas heat or just the tamoxifen settling in. If hot flashes mean, your recurrence rate is even lower that's great news!! Cause I am one HOT Mamma, my husband says as I turn down the thermostat again!
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Helena, the CA 125 test can sometimes give false neg and false pos. That is why I chose to have my ovaries removed, there is no clear cut test for ovarian cancer. And yes even w/o your ovaries you can still get ovarian cancer. Each time we ovulate(well not me anymore) small amounts of ovarian tissue is released into the abdomen. You can get the ovarian cancer that Gilda Radner died from. Not to scare you, just to put the information out there.
Also, my uncle had cancer of the esophagus, they caught it early and he did not need chemo or rads, but he has to see onc annually for petscan and blood work, because he still has elevated cancer markers in his blood. And every year he is cancer free.
Oops, I did not mean to submit that yet.
Helena as long as you stay on top of things all should be fine. I think of cancer as the gift that keeps on giving. Our lives, like it or not are forever changed.
Rachel, what a wealth of information you are. You are so kind hearted and so helpful.
Each day I feel better. TMI ALERT!!!!! I have been passing gas(which is a good thing) and I had 2 Bm's which is also good, it helps alleviate the pressure on my belly.
I hope all have a great w/e I know I will.
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Rachel, you are awesome and very caring! I can't believe those photos and I can't believe you have been dealing with that for soooooo long. You are one strong cookie!
Helena, stupid BC is right girl!! Glad you retook the test and 29 sounds good to me too! Keep us posted and try not to fret. Stupid BC...AARRGGHH!! hugs my friend
sunshine - that Texas heat has been off the charts this summer! The heat really does trigger those flashes!
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I already got the pathology report on my ovaries, they are cancer free, I dodged that bullet!!!!
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Congrats Mary! Now let's get the same positive report back for Helena's CA125! 29 sounds good to me, too!
Have a good weekend.
hugs
Diane
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YAAAAAAAAAAAAY MARY... rock on rock on... dodgin bullets... f*cking stupid cancer, argh. On the TMI stuff, if you are farting all the time, you can be a member of MY family. I am an all time first class farter, as are all my family, fartamaniacs. My best gal pal, the one I in the old pic with me, when we were in high school instead of hiding when we farted, we would raise our hands over our heads in an arc to draw attention.. HELLO, I AM FARTING HERE
OK, she would, I am a chicken. Sometimes there just ain't nothing as grand as a nice bowel movement. I ain't ashamed to say it. Enjoy.Did you see the hubbub over Tiger Woods' fart?
Helena, how long has it been since you ran? Can't be easy to restart. Plus carrying the weight of the stupid pointless CA125 test.
Sunshine... Hot... Mama... I'll bet its hot! Well that's why I am waiting til end of Sep to start Tamox, the heat ignites the hot flashes so they say and I just despise being really hot. I think I will ask for Effexor Rx at same time. Like.. i will take Tamox, have just enough hot flashes to convince me and ONC that it's working, then pop the Effexor. That's my plan. A couple months later - January, anniversary of DX- I will start Zometa.
Thanks all, I learn from you. Knowledge is power.
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Morning ladies - its only 4am here but was going to the loo and thought I would just check in - big mistake!! Its the addiction you see!!
Sunshine - I have no hot flashes on tam but I started taking it in Autumn and it is winter now but the weather is heating up and I am feeling a few heat "surges" as I call them. Very bearable but it will be interesting (for want of a better word) to see what happens in summer.
Mary - clear ovaries - beautiful words, well done ((hugs)) .... And a new atavar - was that a mad men one - I did one but was disappointed there was no long hair - what??? Didn't they have long hair in the 50's!!! And as for farts (my daughters call them pop offs) - better out than in baby.
Meg - hugs - you know its funny everytime I see your posts it is so calming. Must be the internet vibes coming through.
Kari - my dear motivator - sooooo happy you have finished treatment (yes had a quick peek at motivation) I am just so relieved for you YEEAAAAAH! See you on the other thread soon - will try and get some more sleep first though LOL. love you.
Diane - hello (wave) - thank you.
Rachel - just on 6 weeks of no running but seriously thought I could slide back into it with no problems - managed to after my bilat mast - oh well, like I said I'm no superwoman not like beautiful wonder woman Diane!!!! And good thinking about starting tam when it is cooler, all I am reading now is all these poor women hot flashing all over the place in the heat. Fingers crossed you will be like me and tolerate tami really well. To be honest with all this stupid pointless CA125 (ha ha ha) test I haven't even been thinking about it.
Better get some more zzzzz's in so I can enjoy the weekend.
biiiiigggg hugs and thank you for being here for me guys
Helena
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Leeeeeeeeggggggggggyyyyyyyyyyyyyyyy.......
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Mary - YIPPEE!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Happy dance here in my chair at work for ya girl!!
Pop offs, poofs, toots...oh dear! LOL! aka farts heehee
Helenda, I'm the same way with my laptop at home, I walk by and go well maybe just a peak! its all the love here!!
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oh, not me, I am not addicted to the Internet or this board... noooooooo
and I have a bridge here that goes all the way to brooklyn for sale... cheap!
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too funny!
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RRRRRAAAAACCCCCHHHHHHEEEEELLLLLL!!!!! I have a degenerative arthritic hip!!! Yahoo! I just got home from work, and the doctor emailed me this morning. He said it's a preliminary report, but no sign of cancer. Never thought I'd be happy about arthritis. Thank you so much, I didn't worry nearly that much at work, cause I knew my dear consultant, was in my corner.
Hang in there Helena and Mary!
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Leggy I am so happy you have arthritis!!! Boy that IS weird. Well we are a weird group of gals to be sure, thanks to cancer. Or rather... NOT cancer. And most importantly- YOU were in your corner. :::singing::: I am woman hear me roar la la la la la la la laaaaaa
Meg, you totally have a calming effect that comes through on the Internet
LOVE your mad men avatar!!!! Did we all choose the same dress, just different colors?I'm just so delighted for Leggy. Natch I wanna know what the freakin 3 week hold up was. But OK, I will settle for the great news, that she got it before the weekend, that she stood up for herself, that her doc got in touch with her on a Friday she thought he wasn't available- and that her doc probably has got the message now that she's not going to be faffed off. Leggy, I hope you will still go get your records and make an appointment for a second opinion. It can't hurt. It's very intimidating but very very rewarding. You get to feel that feeling of power and self determination and you put yourself in a better position to control your health care going forward.
I have this saying about putting my face into the wind and moving forward.
Just so happy you got the test results and it's not cancer. Now, was it the Tamoxiblues or this crap hanging over your head makin you feel bad before? That's not rhetorical, please look back critically and what do you think?
I've got freakin pink eye in one eye. Gorgeous day, feelin blah, didn't even leave the house. I get a shooting pain up from the top of my foot every so often, as if I broke it. Got a weird period. None of this is Tamoxifen 'cause I haven't started yet. Had a PET/CT scan in March, all clear (except some possible arthritis, so I may be joining you there). Oh and on that score, what about the Zometa? I think you said your doc said it wasn't proven or some such. My ONC is satisfied it's proven enough, can't hurt- and its the same thing you'd take to help your bones with the arthritis. OK so I am sending you back into the Lion's Den. Go ask for Zometa. Ask your second opinion for it. Call the American Cancer Society and see if you qualify for a trial. See an arthritis doc, they might put you on Zometa anyway. Here's more about Zometa:
http://www.nytimes.com/2009/02/12/health/research/12bone.html?_r=1
I am not doing the ovary suppression, just the Zometa. Do check with your dentist first.
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Hey Rachel,
I think I was bummed out for three reasons #1 The man I used to work with that passed away#2 This hip thing hanging over my head #3 My therapist asked what I do for fun, and could only think of what I used to like to do before cancer, like camping and kayaking, one I don't have time for (work and I'm too tired from work) and the other I can't lift or paddle. My weekends are gone before I know it.
Zometa now sounds like something my Onc. will go for now that I HAVE ARTHRITIS!!! My Mom has had two hip replacements, and a knee operation from arthritis and my brother has it in his back, and I hurt all over, so I think I will also ask the Onc. for the bone scan...Now I'm going to read about Zometa, since you we're so helpful, again! What would we do without our Rachel?
Thank you
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Oh by the way, speaking of farting, did anyone hear that Cuba is currently having a terrible shortage of toilet paper!! And I think I have problems.
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too funny is right ...
Leggy - phew!! I know the results aren't ideal but good considering the alternative!!!! And now you won't have Rachel yelling at you LOL
Hey Meg that SOOOOO looks like you LOL
... ah great posts ... makes me feel happy.
... and yes what would we do without our Rachel ... good thing she is addicted too ........
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Yeah I do feel better now, not only for the nudge Rachel gave me to email my doc. and get a tad firm with him about wanting some info. before the weekend, but also for directing me to think about what's bumming me out.
Hey Rachel, sorry about the fire, and the pink eye! Let us know if we can help you! But your just so darn good at helping us.
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what would I do without youse guys... {{{{{{{}}}}}}}
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That's what I'm talkin' about!
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Well they can always use the sears catalog pages or corn husks, just like the old timers in the outhouses.
My son cracks up everytime he hears me fart. Because w/ all the air they pumped in mine are no longer silent and dealy, they are louder and proud. My MIL is the queen, she can clear an outdoor theater, NO LIE. she even admits to it. My motto was "women do not burp, fart or pass gas in any way, therefore we must BITCH or we will explode" Not that I need a reason to bitch. LOL.
Yes I am addicted to this and Facebook. I have a myspace acct, but that is so I can see pics of my cousin's daughter.
I really have to start "googling" more.
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Hey all!
I think I'm another inch out of the deep chemo hole. I made a post to my chemo group this morning and it only took an hour or so. Also, I was only three quarters dead when I came back from the grocery store/lugged the stuff up to my apartment (not a huge trip, but more than I've dared to do by myself for weeks), and I actually cared enough to wash the dishes even though I still had room in the sink to rinse out the coffee pot! Anyhoo....
Rachel...oh, Facebook. OK, thanks. I'm not on there, no plans to (all those social networking sites give me the creeps and there's no way I'd ever post real pictures of myself anywhere on the Internet). Oh, and about your father's mother whose name was Lena, you almost getting named that but getting named something else you didn't like: Please sit down, you're just going to die --that story is almost exactly the same one I could tell about myself (short of differences in spelling and middle names, and that it was my grandfather's mother's name instead of my father's mother's name)! I almost fainted myself when you told it! Well, since I don't use my real name on the Internet either (I'm one of those paranoid privacy freaks: no real name, no photos online, my policy since 1995), I decided to call myself Lena in here. I mean, I like it, and it was ALMOST going to be my real name! LOL
Mary22 and PattiB: I think I'll just put up with the hot flashes from the Tamoxifen (if I can even yet presume mine are actually FROM the Tamoxifen and not still from the chemo) -- no Effexor for me thank you. See, Effexor is a SNRI, a drug type which has side effects too similar to SSRIs. Recently I had tried Lexapro (a SSRI) and had a SE from that which I found so intolerable I went off it, even though otherwise it seemed to be helping my depression. Not going anywhere near anything like that ever again, because that side effect in particular is more depressing to me than being depressed, if that makes any sense! (Besides, if I'm coming "up" from the depths of chemo, the REASONS for my depression will be going away anyhow.) Seeing how my sleep is messed up, though, I did ask the doc for something to help me sleep through the night, and he prescribed Ambien CR for me. Trying it tonight. I'll bet getting enough sleep at night will also go a long way towards making me feel better. How are you girls doing now? (Oh, and Mary, glad to hear no cancer in the ovaries!)
Ainm: Hmmmm, OK, looks like my hot flashes must still be from the chemo, then. So I'll have to wait a few weeks to blame them on the Tamoxifen...but maybe I'll get lucky and they'll stop? Oh, and if you have the self discipline to exercise every day, you've got way more self discipline than I do!
Leggy: Yeah, congratulations on the arthritis! LOL I know how that sounds, but I also know exactly where this kind of perspective comes from -- so ivorymom and Rachel, don't worry about thinking you're strange for cheering Leggy's arthritis. In 1993 when I had my stroke, but before I knew it was a stroke, the neurologist thought my paralysis might be MS, so he tested me for MS (in addition to having me tested for everything else: at that time I was a healthy except for severe migraines 32-year-old). Well, when all test results finally came in and he said "You had a migraine induced stroke" -- my eyes bugged out, I got all excited and happy, and exclaimed, "Really?! Wow, COOL!" Now who in hell could possibly think it's "cool" to have had a stroke?! Anybody who was waiting around to be told they had multiple sclerosis, that's who!
So way before the time I got cancer I already had some "weird" perspectives.
Oooooh, farting huh? This is going to be one FUN bunch of gals to hang out with. :-)
Whooo-zeee! The Ambien seems to be taking effect, so I'll go to bed. Maybe tomorrow will be a Really Good Day. I'll go into the kitchen to pour my coffee (in my Good Mood cup) and see no dirty dishes in the sink after a full night's sleep, and maybe even do another "brain test" at Sims College! to see if the chemo brain is dissipating enough to allow me to resume my Projects any time soon...
Goodnight all, hope you're feeling good.
~Lena.
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Lena, privacy is a very good thing. I admire what you have done
But hey, you can madmenyourself.com!!!!
OK so here's how I spent my evening... organizing this...
lessee...
Mary and Me:
Mary and Me and Meg:
and me and meg
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Lena- Privacy is a very good thing, I admire what you have done. Meanwhile... you can still madmenyourself.com!
Here's how I spent my evening...
Mary and me:
and me and Meg:
Helena QOTD, don't they have an up-do for your hair on madmenyourself?
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Check this out... Julia Child and famous contemporaries talking about their breast cancer in 1974... 25 years...
http://www.time.com/time/magazine/article/0,9171,945077-6,00.html
and that was 25 years after mad men...
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