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Bottle o Tamoxifen

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  • kfinnigan
    kfinnigan Member Posts: 490
    edited August 2009

    kookiesmom - same thing happens to me with the hot/cold flashes.  My onc said it was our blood vessels expanding during the hot flash and then when that flash is over, they constrict...hence the cold flash.  She said yes its normal and that our internal thermostat is out of whack and can't regulate the temp just like you said!

    Mary, enjoy your mini break before all hell breaks loose when school starts! LOL

    Lisa, was next to a van with Ohio plates today and I thought of you!  4 inches doesn't sound too bad, the sonny and cher analogy was funny.  Looking forward to your 'soap' saga...hmmm we need a name for your saga!

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    Anyone talk to someone with BC who is making decisions that you believe are going to kill them?

    I am nauseous since this happened to me.  To them. Whatever.  I have to respect whatever decisions each person makes, but when it flies in the face of everything I know to be true, and every wonderful person I have "met" here, some of whom never had the chance that these people had to avoid their horrors, I can't manage.

    I am so proud of you gals, for everything you are doing to fight cancer and live your lives.  I love you.  This is where I am staying.   

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    Yeah Rach, what do you do.  Everyone must live there lives and to see all of us here so busy trying to stay healthy, putting up with all the BC crap just to stay alive does make me sad sometimes but like you said, also very proud.  I have never felt such warmth and love for a bunch of women I have never met!!!  And you can't go anywhere anyway - don't you start next week?  You're here for the duration baby.

    Lisa - my DH is only a bit taller than me (I'm 5'7" - he 5'9" getting good at this aren't I Rach!!) and when I wear heels it is a little odd but it makes my legs look sooo much better so who cares!!  And it is all the same lying down (whoops too naughty!!!).

    Kookiemom - I get chills sometimes but no hot flashes.. what the!!  Here's hoping the break might lessen the side FX.  Cats think we are crazy anyway I'm sure.

    Mary enjoy your last taste of freedom.

    Kari - sorry to hear about your traffic nightmare on the weekend, and your daughters are just beautiful.

    Home with little one today - still not 100% so not going to school. Good excuse not to do housework and feed my BCO addiction.

    big hugs

    Helena

  • PattiB
    PattiB Member Posts: 107
    edited August 2009

    Helena - hope your daughter feels better soon.

    Kookies - I have the hot then cold flashes also.

    Mary - I start on Thursday, but our "school" year begins 9/8.  Really late this year, we'll be going until mid June, with me begin done in the third week.

    To all going to work - have a great week.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    PattiB rockin the Solara!!! Be careful not to burn your scalp driving top down.  Gotta wear a hat and you know those little clip on things that keep your hat in the car if it blows off your head? 

    kari I have a dvd for starting ASL, and I'll keep at it.  Thank you for the reinforcement that this is a good idea. Oh so a Boxster in the family? Is it back?  Has it been showing up at Terri and my drives?  GOOD FOR YOU GUYS

    oh and better than avatars... for my son's bris (Jewish circumcision party, yes, I know, sounds weird... anyway)  I set up web cams- skype and ichat. If you have web cams we can see you too, its pretty close to being there!

    Oy Helena, love the vomit story!!!  :D

    Carolyn, that's what I am doing, the ice cubes in the ziploc bags.  I love my freezer full of food for him, makes me feel secure!!!!  Patti and Carolyn thanks for the canning answers.  Oh how I LOVE your garden!!! Oh love it!!!

    Lisa,I missed the part about the first time you were on Tamox, do you mind to say again or if you hadn't and dont want to that's OK too.  

    Kookiesmom- I am sorry to hear about the uncomfortable hot flashes but kinda happy to hear you throw the cat off the bed... because this video is an accurate representation of MY cat:

    http://www.youtube.com/watch?v=w0ffwDYo00Q

    :)

    Mary darlin, I have a tendency of showing up where I'm invited, and that sounds like FUN!  And I am moving ever closer to your town so... I hope we will be a canning :)

    Sorry for the freakout, and thanks for it.  I got on the trainer with the kid after I posted and cleared my head a bit.  I think the bottom line is that I couldn't live with myself later if something bad happened if I didn't say something, so I did, and then I let it go.

    It may be sort of what I was saying to Brenda about  that support group being for newly diagnosed.  I remember being just a thick, saying just as stupid things, seeing the look on the face of my docs when I would say these stupid things before I made the change from happy non cancer person to cancer person.  There's that whole waterfall/avalanche of cancer crap that falls on us out of the blue. So really it is uncomfortable for me, as someone who knows how stupid what she is saying is, like with smoke coming out of my ears, not to protect her, from this sort of support.  It may be that they were protecting you Brenda, not the other way 'round.  But of course doing it in a totally ignorant and obnoxious insensitive way... :::sigh:::

    And it's entirely possible that this woman's thinking would actually work for her, and that's my hope.  I support her decision regardless.  No one knows anything for sure anyway.

    As much as I support her, I'll be spending my time with you.

    Oh and I got an email from my ex who used to be in Rwanda and now is moving to DC , he's coming to the city in two weeks with his family...  So I finally read the email he sent explaining why he posted he was brokenhearted over an extramarital affair on his FB account with his kids as FB friends... he said he and his wife have openly discussed that their marriage is over, they are trying to be friends and staying together until their youngest is out of high school, 2-3 years., and that his kids know this.

    Well, that's going to be a fun visit.

    :::giggle::: 

  • kfinnigan
    kfinnigan Member Posts: 490
    edited August 2009

    Carollynn, forgot to ask where you live?  That garden is HUGE on a HUGE piece of land!!  Beautiful!

    Rachel, this is just the best bunch of ladies I have never met! LOL  I am with Helena in saying I feel so much love and friendship here and to be able to say whatever it is we need to say is refreshing.  We have a Carerra 4S, she's a beautie!!  When it was delivered our neighbors came running over and one of the guys said 'oh mid life crisis'...I said 'oh celebrating beating SFBC!" and just smiled big!  Keep us posted on the ex visiting town...

    Helena, my sweet friend, I hope your DD will feel 100% soon.  I bought some oranges that were stamped Australia on them and thought of you of course.  DH threatened to take my computer away yesterday while he was here.  heehee...He left for the work week very early this a.m. and I've been on this computer a lot today!  I need an intervention! LOL

    PattiB, enjoy your last days of freedom.

    Hugs to all, see ya tomorrow!

  • didle20Diane
    didle20Diane Member Posts: 86
    edited August 2009

    Rachel.....your ex is moving to DC?  Let me know where LOL, I live 10 minutes from Dulles Airport.

  • didle20Diane
    didle20Diane Member Posts: 86
    edited August 2009

    Terri,

    Yay for night 2 of tamox......stay on the train with us!  And yes we were DX one day apart.  UGH....can't believe it has been almost 8 months now.

    hugs

    Diane

  • Munchy
    Munchy Member Posts: 59
    edited August 2009

    Just checking in after almost 4 weeks, and WOW, this thread has really taken off again.  So many posts, I just couldn't read them all!  So many new names, but nice to see some of the "old" ones. I was on vacation - a Mediterranean cruise (woo hoo!) - so out of touch with everything.  Nice.

    As of today, I have been on Tamoxifen for 14 months and 17 days.  I just started taking it again after almost 4 weeks off.  My onc told me to stop taking it about a week before our long plane trip (14 hours!!!) because of the possibility of blood clots, and since we were in Europe for 2 weeks, I figured may as well just leave the bottle at home and just start again when I got back.  It is now pretty obvious that my weight gain is not because of the Tamoxifen - I did not lose anything while off it.  Of course, I WAS on vacation.  For me, vacation is all about the food.  At least I didn't gain anything.  I was also still having hot flashes like crazy, so can't blame Tamox for that now either.  It was SO hot everywhere we went, and I often looked like I had just climbed out of a pool - beads of sweat dripping off my nose and little rivers running down my face and body.  People would just stare at me, wondering what was wrong with me.  It was pretty gross.

    I found out just before we left that Kaiser won't do the BRCA testing for me.  I guess after taking an oral history of my family, it doesn't look likely that I have the gene.  I also talked to the plastic surgeon about reconstruction after rads and implants are not possible.  I don't want any flap surgery, because muscle has to be taken along with fat and you are left with permanent weakness.  Athletes or even just really active women like me would definitely suffer in the quality of life department.

    Soooo - I have decided to just have another excisional biopsy.  Argh.  I'm scheduled for Sept 24. I am trying to keep a positive attitude that it will not be cancer again and that this will be the last one.  (sigh) 

    This was supposed to be just a quick post.  Oops.  Anyway, welcome to all you new passengers on the train.  All aboard! 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    Quick post before dinner - Terri you were in Oz!! .... and you drink wine!! ... bummer I missed you.  Yes it is a beautiful country. 

    Munchy - great to see you.  So sorry about the reconstruction no go and another excisional biopsy???  Did you find another lump? Argh is right.  Pls pls let us know how you go.

    Patti - hugs and enjoy your days before going back to work.

    Kari - I read your posts and then when I'm finished I just miss you all over again  :( 

    Diane - yeah, doesn't time fly when you're having fun.

    Spent 2 hours at hospital with little one and she has inflamed tonsils .. Phew... better than swine flu ...must say though it is strange to be in a hospital again and it not being about SFBC.

    Keep on popping everyone.

    big hugs

    Helena

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    OMG Rachel - Simon's Cat videos are just hysterical - my DD's and I have been ROFL watching all of them...

  • Mary22
    Mary22 Member Posts: 428
    edited August 2009

    Hello ladies, Just a quick post before work. Everyone is still sleeping!!!!

    Patti, even though we start early we will go until mid to late June with snowdays!!!! I prefer 2 hour delays!!!

    Kari, where in Cali is Lincoln? My sister lives near Travis AFB, which is just off 80. She is an hour from San Fransico. She is dropping her son off at MSU and will come to PA(the otherside of 80) to see me.

    Munchie Welcome Back!! YOOHOO on the crusie, sounds like fun!

    Rachel anytime!!!

    Helena, hope your DD is better. I hate when my kids puke. When I was preggo w/ my 8 yr old DD, my son got sick he was only 2 and I remember yelling at him to "get it in the bucket" What a bad mom am I ?!!!! LOL

    Terri Two days and you did not explode! LOL

    Well off to get around, as Helena would say, I had to feed my addiction!!!!!

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    Muchy- so great to hear from you, it helps so much for me to see what goes on down the line.  Drat, over a year later and still big ol' hot flashes.  Well, at least you got to embarrass some Europeans!  GOOD GIRL! :D (and for my European Tamoxipals, excusez- moi s'il vous plaît).  You also don't know how else you have helped me... I just tried explaining to 2 recently diagnosed gals that if they do RADs their choices later are limited.  I don't know about you but despite my specifically asking, I was told the surgery later would only be more difficult for the SURGEON, not me.  I started to learn when I was yakking with some recon friends here. So I have an African American surgeon friend with LCIS and DCIS who is going to simulation today, she had lumpectomy, and last night I was trying to get through to her about this issue- because as you pointed out at least on recon, if she gets a recurrence after RADs, the surgery would probably stop her from continuing as a surgeon- the muscle weakness from the flap surgery.  She is probably not going to speak to me again because I told her this.  What you say lets me know I did the right thing by telling her.  We have the same surgeon, I know he didn't fill her in!

    Ja, what's the excisional biopsy about?  Found a lumpy thing?  Need any help on that?  I done two of those, well one excisional biopsy and one lumpectomy.

    Diane- he sent me an address and a picture of his house.  Very nice.  Just...ewwww. :D

    OK Mary, now I have witnesses!  I keep meaning to email you the disk on the house.  Will do.  

    Helena- wow, the hospital trip with the kiddie... I am terrified of that!  Tonsils eh?  I have been poring over some information a fellow mommy here compiled about vaccinations, derived mostly I think from Dr. Sears. My son's rash went away, I was hoping it was Chicken Pox, but no... oh well.  We'll go for the flu shot. Yeah, weird being in hospital for something non-BC.  Weird good.  :)

    My beloved washer dryer is broken!!!! AUGH!!!!  AAAAUGH!!!!!

  • carollynn79
    carollynn79 Member Posts: 331
    edited August 2009

    kfinnigan I live in Port Hope Michigan, it is in the tip of the thumb region of the state.  Our farm is very small by neighborhood standards but our garden is huge, the radiation department is enjoying lots of fresh goodies.  I love to spend time int he garden and my husband and I can everything we can, we enjoy it.!  Well have to go for my last week of rads only 3 left, I am so raw I can't wait so I can heal up and feel better again, hopefully SE's form Tamox will stay in check!  Hope all have a ggreat day.

  • kookiesmom
    kookiesmom Member Posts: 57
    edited August 2009

    Rachel - Thanks for the video of the cat & for the laugh!!!  I've got 2 cats & 1 dog and they have been stuck to me like glue since I've been home recovering this week.  I think I will probably be back to work tomorrow as I am seeing the PS this afternoon.  The cats will miss the human heating pad to lie on all the time.  I know they are just using me!

    Kfinnigan -So I guess the hot & freeze flashes are par for the course.  That sucks.  I was hoping it was something I could take a pill for and get rid of them. 

    Anybody know what does that Effexor does (I think that is what its called) ?  I know it is an anti-depressant but what are the side effects from that?  Is it worth taking?

    Helena -hope the tonsil problem is getting better & no one else gets it!  I hate it when my kids get sick.

    Carollyn - Love your garden pics!  It looks so nice nice there - I bet it smells good too!  Ahhh country air!

  • PattiB
    PattiB Member Posts: 107
    edited August 2009

    Helena - Thank god it's not swine.  Poor DD, vomiting with a sore throat has to be very uncomforable.  Give her lots of popsicles.

    Rachel - Luckily not hats or buffs blew off while driving topless.  The wind is not so bad in the front seats, the windshield is built to slope a bit over your head.  Let me know when you move to PA so we can meet up.

    Mary - I prefer 2 hour delays too.  Last year the students had to go 1 extra day at year end, so that gave me 1 day with no students to do year end clean-up and reports.  I'm pretty organized so I was able to get it done even though I was working 1/2 days the last 2 weeks of school to go to rads appt.

    Thanks for all the good luck sentiments for starting my workweek.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    kookies mom- of course your cats are using you, thats their JOB.  As much as I bitch about my cat, he was really wonderful during the whole surgery and rads thing.  He is quite insane.  

    Of course I made a video of him... it's 10 minutes long and the first 5 are just pics of him as a kitten, but the last five minutes should make you laugh and wonder what planet this cat is from!

    Here's a link to the video- it's windows media format:

    Click here for the 25 MG Windows Media movie 

    Carollyn, are they giving you bacitracin and petroluem bandages for the raw skin?  Its so simple and it was such a huge immediate relief- I still have mine just in case!!! They also have this sort of tube top you can cut armholes in, it's perfect for holding the gauzy type bandages in place.  Wearing that tube thing with the petroleum bandages and bacitracin was HEAVEN.  Radiation burns require the ointment and NOT letting air on them, unlike regular burns that need air. So it's bacitracin for the raw open skin, then a petroleum bandage to keep it moist and keep out the air, then a gauze bandage to protect your clothes from the petroleum goo, then the tube top to keep the bandages in place.  Amazing how incredibly comfortable that is.  And if you have pain, take ibuprophen- not for the pain itself but to reduce the inflammation that is causing the pain.

    Oh and STOCK UP.  When you're done RADs you will still need the supplies for some weeks.   

    PA gals, I am trying to get a place in Bucks County by the river or in Bethlehem.  It should be a big place, for all the stuff I have in storage since the fire, for my kid to run around, and for the nanny and maybe her family to stay over.  Essentially, I am trying to take advantage of all the empty McMansions due to the economy, and rent one.  If I get it, I hope you'll come and hang out!

    Natch, it has to have reliable high speed Internet access ... :D

  • kfinnigan
    kfinnigan Member Posts: 490
    edited August 2009

    Back at work, so trying to quickly post.  Need my BCO fix Helena and Mary! haha 

    Munchy - your cruise sounds wonderful.  I've never been on a cruise, but everyone who has been recommends it!  I haven't consulted with a PS yet about recon but both my onc and the rad onc told me that its very very difficult to do recon after rads, but its possible if I find an experienced PS.  I'm scared and nervous about it to be quite honest.

    Helena - how is your DD doing today?  She's had quite a time with that bug she has.  Hope your other DD doesn't get it or you and your DH!   

    Mary - Lincoln is outside of Sacramento.  I work in Roseville.  We are an hour from Travis AFB.  My dad lives in Benicia about 20 min. from Travis.  Maybe I can hitch a ride with your sister, haha!  I've never been to PA.  As far north for me was into Virginia when I lived in N.C.

    Carollynn - 3 more rads !!!!!!!!!!!!  WOOHOO!!!   Good advice from Rachel.

    Rachel -  that video made my morning!!!!!!!  Freddie the Terrible!!  What a character.  Thanks for the smiles over here!!  We use Skype all the time, but on my DH's laptop.  Hope when you have a party maybe some of us can peek in!  I do have a built in camera on my home laptop and use the video chat on instant messaging with my DH while he's out of town during the week.

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    Oh yeah Munchy (with the appropriate name) from what I hear it's impossible NOT to gain weight on a cruise...

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009
    kari- my BS said the same thing, that it IS possible and he was quite confident of his ability to do surgery after RADs.  It was just what Munchy said jived with what I read on the ACS site about reconstruction options.  I could have it wrong, What i got is that there are some easier forms of recon that are troublesome to do with radiated tissue, so they tend towards the more involved "flap" procedures.  Maybe if Munchy shopped around she'd get a different answer?  I don't know and certainly do not want to discourage anyone.  Just to be aware there are some issues to consider.
  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    About fucking time... last night I was going to post that yet another newly DX'd person got in touch with me, this time a mom of 22 month old twins DX'd at Stage II.  I had already posted enough downer news then so I didn't post.  Meanwhile, a friend of mine just texted me that she just got her clean mammo back!  YAAAAAAAY  Clean Mammos!!!!!

    So I needed some good news :) 

  • my560sel
    my560sel Member Posts: 399
    edited August 2009

    Lisa: Glad your date went well - here's hoping it's the start of a long relationship!

    Mary: The second pill was much easier to take than the first and the 3rd was a breeze! Now, I'm almost looking forward to bedtime so I can take my next one! I know, I know,  you're all going to remind me of what I just said once the HF's and whatever else hits ....lol

    Rachel: That black boxster in our club belongs to a lawyer friend - sorry, Lisa, he's short and not much personality to speak of ! Kind of the me, myself and I type.... Sucks doesn't it when you're trying to help someone and they're thick and don't get it. Guess they just have to come around by themselves. Sad though cuz you always hope they make the right decision based on knowledge and not on fear. BTW, your cat's a riot! Don't you just love 'em? I've got 2 myself and they are definitely part of the family and they KNOW IT !!

    Helena: Next time I'm in Aus - we can share a glass or 2 of wine. We didn't get to see anything of the interior last time and although I'm told all the action is along the coast, I'd still like to see it. Hope your little one is feeling better Smile

    Munchy: I've been on a Mediterranean cruise - 1 lb a day and we walked tons every day. Thank God I lost 10 before we left just so that I could eat whatever I wanted and not worry about it. Not sure I would do that now with the BC, I'm always trying to watch what I eat. But cruising is the way to go - I just love it! (((HUGS))) and best of luck on your biopsy....

    Kind of a funny day here. Started off sunny, then the sky got really dark and it looked like rain and now the sun is trying to peak through the clouds. It's been such a terrible summer here which is very unusual. The weather in the summer is usually very hot and humid. It's so hard trying to keep up a good attitude and stay positive when the weather is getting you down. And in about 2 months the SNOW will come AAAAGGGGGGGHHHHH !! Guess I should be grateful for each day though...

    Terri

  • my560sel
    my560sel Member Posts: 399
    edited August 2009
    Lisa: Glad your date went great - here's hoping it's the start of a long relationship!

    Mary: The second pill was much easier to take than the first and the 3rd was a breeze! Now, I'm almost looking forward to bedtime so I can take my next one! I know, I know,  you're all going to remind me of what I just said once the HF's and whatever else hits ....lol

    Rachel: That black boxster in our club belongs to a lawyer friend - sorry, Lisa, he's short and not much personality to speak of ! Kind of the me, myself and I type.... Sucks doesn't it when you're trying to help someone and they're thick and don't get it. Guess they just have to come around by themselves. Sad though cuz you always hope they make the right decision based on knowledge and not on fear. Great news about your friend's mammo ! BTW, your cat's a riot! Don't you just love 'em? I've got 2 myself and they are definitely part of the family and they KNOW IT !!

    Helena: Next time I'm in Aus - we can share a glass or 2 of wine. We didn't get to see anything of the interior last time and although I'm told all the action is along the coast, I'd still like to see it. Hope your little one is feeling better Smile

    Munchy: I've been on a Mediterranean cruise - 1 lb a day and we walked tons every day. Thank God I lost 10 before we left just so that I could eat whatever I wanted and not worry about it. Not sure I would do that now with the BC, I'm always trying to watch what I eat. But cruising is the way to go - I just love it! (((HUGS))) and best of luck on your biopsy....

    Kind of a funny day here. Started off sunny, then the sky got really dark and it looked like rain and now the sun is trying to peak through the clouds. It's been such a terrible summer here which is very unusual. The weather in the summer is usually very hot and humid. It's so hard trying to keep up a good attitude and stay positive when the weather is getting you down. And in about 2 months the SNOW will come AAAAGGGGGGGHHHHH !! Guess I should be grateful for each day though...

    Terri

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009

    Hi All!!

    Thanks for the info on TailorX. Helena, ha, yeah, do I want to pay nearly 4K to find out? :)

    Actually, the reason I was interseted has to do with Tamoxifen vs. AI. I have a friend who had a high Oncotype score, and her ONC said you may not go on Tamoxifen b/c there are studies that show it is not effective for those with a high Oncotype score. She was put on AI. THIS is what put the "bug" in my brain about, "why don't I have my oncotype score"?? I have the research here - Called the NSABP B-14 and B-20 studies. These two studies are old, (80's to 90's) but essentially show that those with low and mid Oncotypes get benefit from Tamox, whereas those with High oncotype do not. . I have been tested and know I am an "Extreme metabolizer" of Tamoxifen ( so that is good ) but I do not know my Oncotype! ahhhhck!

    This whole things just makes me batz!!! I hate having this little nagging doubt in my mind... So I have to weight,  the nagging doubt, the 4K, the nagging doubt, the 4k. LOL...

    Spring...

  • my3girls
    my3girls Member Posts: 1,291
    edited August 2009

    OMG...Ladies..you are a chatty group!! lol. I can't catch up, since I am at work.

    A name for my saga?? That shoudl be interesting. We both realize being 5 hours away, might be too much.  So I told him this...why not be friends...do things together, maybe travel together, friends with benefits if we want..and no expectations...at least for now...just have fun!! What do you all think??

    Rachel...my first time on tamox was a 2 yrs ago, I started it..and was on for a year, until my hysterectomy.  I really tolerated it pretty well. I think for me, there was some joint/bone ache..but it went away, and it was tolerable.  I also remember getting a little nauseaus with it..and I think I am experiencing that now. So, I am going to start taking it at night...which is what I did last time, that way...I will sleep through that part. Other than that...it was very tolerable for me.  Very much UNLIKE THE AI'S!!

    back to work...my chatty friends!!

    xoxo

    Lisa

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    Spring- no no no no... As I understand it its not that a high Oncotype score means that Tamox doesn't work, what the point of the Oncotype is comparative benefit of chemo / no chemo.  They always knew that a great portion of bc patients didn't actually benefit from chemo, but they didn't have any way to tell which ones would and which ones wouldn't, so everyone got chemo.  When you get your Oncotype score, it shows how much you would benefit on Tamoxifen alone, vs Tamoxifen AND Chemo.   When the benefit of Tamox + Chemo is only 1-2% more than Tamox alone, they figure it's not worth doing the Chemo because of it's other affects on the whole system.  It's not that the Tamox doesn't work for certain cancers, or cancer patients, it's that those (hormone positive) cancer patients can't rely upon Tamoxifen *alone*. 

    They have finally been able to break down the genetic code of cancers enough to figure out which ones actually are not affected by chemo.  In one way, its kind of scary knowing that chemo wouldn't help me or improve my chance of no recurrence.  It's chemo that doesn't work for the low scores, not Tamox that doesn't work for the high scores.  

    Another instance- Herceptin.  They found the HER2Neu gene, and it is effectively fought with Herceptin, but if the cancer sample doesn't have the HER2Neu gene then there is no point in taking the Herceptin.  Another double edged sword there.  One friend of mine who is a cancer researched was actually bummed out for me that I was Her2Neu- because she said it's such a great drug for fighting cancer.

    And there is research showing that even the Triple Negs might benefit from Tamoxifen.

    Better? :* 

    Here's a link to the OncotypeDX page explaining:

    http://www.oncotypedx.com/ManagedCareOrgs/OncotypeOverview.aspx?Sid=23 

    "Low Risk Recurrence Score result patients (Scores <18) are found in the NSABP B-20 study to have minimal benefit from chemotherapy, whereas those with Recurrence Score results ≥31 ("High Risk") have significant benefit (75% relative benefit, 28% absolute benefit)." 

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    Just a quick post about OncoDX - I am 100% ER&PR+ and have a 6 score (5% risk of recurrence over the next 5 years) - not scientifically based mind you but perhaps because of this tamoxifen has a better efficacy than chemo for me.  Just a thought.  Also Spring - I had Isolated Tumour Cells in two of my nodes and they keep coming up with differing research about whether you should get chemo or not - I didn't!!!!  Oh the nagging doubt!

  • Rachel_BC
    Rachel_BC Member Posts: 679
    edited August 2009

    And more (hey me and Helena are awake at the same time- what time is it for you Helena? It's 5pm in NYC)

    I do NOT get why you didn't get the OncotypeDX test Spring.  I hadn't checked the site until now but it clearly says its for Stage I AND II.  As far as paying for it, I remember the Oncotype people saying repeatedly that if you are having trouble getting it paid for they would help you, I think they'd even pay for it themselves if you really couldn't get it taken care of by insurance.  Here's their customer service contact info:

    Genomic Health Customer Service at customerservice@genomichealth.com or by calling 866-ONCOTYPE (866-662-6897)  

    I think you are right to listen to that nagging voice.  I think if you already did chemo (I forget) then its probably kind of pointless.  But why didn't they do the test?  And for your friend's ONC citing some new studies that say Tamoxifen doesn't work on the high scores, they should provide you with those studies. I would like to see them.  I am looking everywhere and I can't find them.

    It is SO important to trust yourself and to question your docs and to do the research yourself and to drive the car and not just be a passenger in your care.  Be a pain in the ass. :) 

  • Springtime
    Springtime Member Posts: 3,372
    edited August 2009

    Hey all you girlies,

    My ONC said I didin't need the oncotype test b/c my tumor was large (even though it was node negative) and she said I was getting chemo no matter what, so no point in doing it.

    I understand the main beneft is to decide if chemo is warranted or not. 

    But there is this other thing about the TAMOX vs. AI and a high oncotype score. I had not heard of this until recently, as I said above. Also, I am the type of person, I would like to know, does my cancer have a higher or lower likelihood of coming back? I may live my life differently, I really might. Also, I have 2 daughters, 17 and 20, and I'd like to know for them.

    ahhhck! 4k. Cripes. 

    Spring.

  • HelenaJ
    HelenaJ Member Posts: 304
    edited August 2009

    7.56am precisely Rach - from one pain in the ass to another he he he. 

    Spring I think if you have done chemo and taking tamoxifen you have blasted SFBC.  OncoDX is just another stat and VERY expensive BUT it is disappointing that they didn't get the test done for you b4!!!!  I have seen your posts on Motivation and you are an inspiration to every woman there (and me).  Big big hugs on your forthcoming surgery.