Anyone with ONCO DX over 30?

mgm42
mgm42 Member Posts: 48
edited June 2014 in IDC (Invasive Ductal Carcinoma)

I would love to know if there are other women who had a high oncotype score, like me.  I feel like the lone ranger.  I was diagnosed 2 years ago at age 65 and had an Oncotype Score of 36 or a 24% chance of distant recurrence.  After reading all of the posts which talk about Oncotype scores, I started wondering if anyone else had a high score.  I was Stage I, had chemo (Taxotere/Cytoxan 4 rounds), radiation (25 + 8 boosts), and am on Arimidex.  I was told that by having the chemo followed by the Arimidex, my recurrence percentage would decrease from 24% to about 14%.  I believe that 10% drop is significant. However, I worry quite a bit about recurrence.  Is there anyone in the same or similar boat?  Thanks.

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  • one-L
    one-L Member Posts: 1,110
    edited November 2009

    Marilynn, this game we plan with cancer is just a crap shoot anyway.  My Oncotype DX was 25 and now I am doing chemo.  My dx is about the same as yours, except my tumor was .8 cm.  I would have thought that anything that small and they got it with good clean margins, that chemo would not be needed.  Needless to say, I was surprised when my score came back at 25.  I will  follow  the same regiment as you. 

    I hope you are doing well, since you have finished your treatment.  There are lots of women with high Onotype DX scores and it will be interesting to hear from them.

    Best of luck to you,

    Juannelle

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited November 2009

    my recurrence score was 42/28%. I had 4 rounds of Taxatere/Cytoxan and have 9 more rads (total of 33).  I don't know yet what drug I'll be taking-have an appt with my onc on 11-12.

    Joni

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  • mgm42
    mgm42 Member Posts: 48
    edited November 2009

    Hey, Joni.  Good luck with the rest of your rads.  You're on the final leg of that part of the treatment journey.  You and I have had the same treatment plan.  I'll be curious to see what drug they put you on.  My PA assists two oncs, one prefers Arimidex, one prefers Femara.  Go figure.  Let me know what you end up with - and good luck. 

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  • mgm42
    mgm42 Member Posts: 48
    edited November 2009
    Juannelle:  I won't lie and say that chemo was a picnic - it wasn't.  But, it is doable, without a doubt.  I finished my chemo on 4/19/2008 and my rads 6/26/08.  I've been one AI's since 7/9/08.  It's been a rocky ride, but I prefer this to the alternative.  I went off my Arimidex for a few weeks and thought I was going to give up on the AI's all together because of joint/muscle pain.  But my emotions couldn't handle it.  I feel reassured when my bones and muscles ache from the Arimidex.  In a way, it's almost comforting because I know I'm giving myself every chance to beat this thing.  Hang in there, kiddo. 
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  • dcarpenter
    dcarpenter Member Posts: 36
    edited November 2009

    My score was 36-finished chemo Nov 2008-rads Jan 09-- it is scary with a high score-, but hoping the chemo/rads/tamox  did the trick--who knows, we have so many things to consider - High starts at 30 - so I am trying to tell myself 36 is not so bad-just came back a little high. 

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  • Eph3_12
    Eph3_12 Member Posts: 4,781
    edited November 2009

    Marilynn, I'll let you know as soon as I know.  Do you have an approximate price for Arimidex per month, or in whatever increments you get it?  I don't have Rx coverage on my insurance.

    Joni

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  • navygirl
    navygirl Member Posts: 886
    edited November 2009

    My cancer was +++, 1.9cm with no node involvement. I had decided on a bilateral (both breasts were affected although we didn't know that until afterwards). instead of the radiation because of the a) length of Rads b) the potential for nerve damage (I already have neuropathy). I was told no chemo just hormonals and herceptin. Then my OncoDX came back at 49. All of a sudden I was put into 4 rounds of dd a/c, 12 rounds of taxol/herceptin followed by 1 year of herceptin (which I had to drop early because of side effects). I'm having a hard time with the Arimidex but I'm hanging in anyway. 

    My RX is $300.00 (give or take $20.00) a month. If you don't have RX on your insurance...check now on ways you can get assistance. I know there have been several suggestions posted in the  past and I'm sorry I don't remember where, but if you start a thread asking -others will help you.  

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  • mgm42
    mgm42 Member Posts: 48
    edited November 2009
    navygirl -  Hang in there with the Arimidex.  I know how cruddy it can make you feel.  But, you've been through so much already, you must be made of very strong and sturdy stuff.  Stay strong.  P. S. I like your quote, "life is short, play hard."   Take care. 
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  • mawhinney
    mawhinney Member Posts: 1,377
    edited November 2009

    I took Arimidex for over a year and it was arount $350 a month!  Shop around the various pharmacies in your area. I save around $25 a month by doing so. Also try calling the company that makes Arimidex.  Some companies offer assistance or discounts based on your income.  While I am not certain, I believe I read that Arimidex may soon be available as a generic.  Ask your pharmacist.

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  • mgm42
    mgm42 Member Posts: 48
    edited November 2009

    I asked my onc to give me free samples of Arimidex because of the cost.  It would have been about $3,000 for the year if I had to pay out of pocket in the U.S..  I have Medicare part D, but that coverage wouldn't come close to covering the cost, plus the cost of my other maintenance drugs.  When I couldn't get more free samples, I asked about the anastrozole, the "generic" form of Arimidex.  (Actually, anastrozole is the ingredient that makes Arimidex (brand name) what it is.)  My PA wrote me a prescription.  I used http://www.pharmacychecker.com/ to find the best price for anastrozole.  It takes about 2 weeks for delivery and cost me about $1,000 a year.  The cost is much more doable, and my onc is okay with this.  I hope this information is helpful.  My meds come from New Zealand.

    The generic form of Arimidex in the U.S. was to become available this summer, but did not because Astra Zeneca, the manufacturer, wanted to do some additional testing.       

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  • Hattie
    Hattie Member Posts: 414
    edited November 2009

    I had the oncotype test done about 4 years ago, and based on what my medical team have said, it may not be as accurate a determiner of recurrance as hoped.  The researchers picked some likely factors  but maybe not the right ones.  ?  My info is kind of old, so take it or leave it--it was some consolation to me.

     Marilynn, you did a whole bunch of treatment.  You did the best you could.  I hope you can move on and not worry about what if's, since you did such a great job of knocking out the what was. 

     Two years out from dx is a tenuous spot--three and four feels a lot safer and really great.  I have learned to let go of the fear and live, more fully than before dx.  

     Take care,

    --Hattie 

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  • mgm42
    mgm42 Member Posts: 48
    edited November 2009

    Thanks, Hattie.  What a fantastic outlook you have.  Your words of encouragement mean a lot.  And, you are right - 2 years out from DX is a scary place to be.  This coming Monday, I have my full mammogram, which I know will be followed by an ultrasound because I have fluid build-up in the vacuum left by the excising of my tumor.  Then a few hours later, it will be on to see my breast surgeon for my sixth month check with her. It will be a very scary day.  But, deep inside, I'm confident that everything will be okay.  Let's hope my gut is right.  Thanks, again.

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