Oncotype DX Roll Call!

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  • thegoodfight
    thegoodfight Member Posts: 560
    edited March 2009

    Mamie,

    You need to make a decision that you are comfortable with and is right for you.   I will share my particulars so you can add it to your decision making.

    I was diagnosed in July 08 with a 3.5cm IDC.  My oncotype was 17 and I was not going to do chemo.  At first my onc was not comfortable but after consulting with an onc that I had seen at Moffitt CC in Tampa, FL, he agreed.  And then.......................after an MRI to check the "good" breast since nothing ever showed on my mammos, WHAM a second tumor in another quandrant of the "bad" breast.  It was DCIS and they felt that it did not change my recurrance score, and I could still skip chemo, BUT they would be more comfortable with a little more insurance against the monster.

    So now the big question that brought me to my decision to have the chemo.  I asked myself if I could look in the mirror, look at my husband and look at my children if I ever had a recurrance and I had not done all that was offered.  That was the turning point for me.   I needed to know I did all I could if I do face anything again in the future.

    The decision is very individual for each of us.   I am happy with mine.,  The most important thing is after you make a decision, never look back.   Know that you made the best decsion for you!!!

    Caren

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    janeinca I added you to the roll call.  I am so so sorry you have had so many dealings with cancer dx's!  That is amazing, but boy it sure shows you're one tough cookie that won't let a little thing like cancer get the best of you!!!!!  Surprised  Welcome to the thread!

    thegoodfight, I wasnt sure if you wanted added, but since you werent up there and you mentioned your score, I added you.  If you want removed, let me know.  If you want your tx regime added to your name, post it so I can do that for you.  Glad you are here!

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  • Seabee
    Seabee Member Posts: 557
    edited March 2009

    Mamie--Well, it's a tough call all right. At least with IDC you can be reasonably sure that chemo would work, and the chances of permanent side effects with TC are pretty slim, though it definitely isn't tolerated by everyone. If it were AC, now, you'd have to  weigh a 5% gain against a  4-5% chance of developing congestive heart failure, which for me would be a definite no-no, but fortunately you have other options.

    I agree with thegoodfight that it's a very personal, individual decision, especially when there's no clear logical answer, so you have to do what you feel most comfortable with and never look back.

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  • thegoodfight
    thegoodfight Member Posts: 560
    edited March 2009

    moodyk13,

    Please feel free to add my info:

    LMP,SNB,TC X2, TAXOL X 6, RAD, AI

    I  am happy to join such a great bunch of ladies, but of course I would be happier if none of us were here.

    Keep fightin'

    Caren

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    goodfight, me too.

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  • tea42
    tea42 Member Posts: 17
    edited March 2009

    moodyk13  This is a fasinating thread. I just found it and spent the last hour reading it.  I had an onco type score of 1!  My Onc at the time said she had never seen one before.  She even called the company  that runs the tests to make sure it wasn't a mistake. My surgeon said that I should do chemo because of the size of my tumor (3.3 cm), but my onc said  no way, that it would not benefit me at all.  She did want to be aggressive on all other fronts so I had LMP, RADx36 and I am now in a clinical trial called the SOFT trial which is ovarian supression with a drug call triptorelin and TMFX for 5 years.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    tea42, WOW is all I can say!  A score of "1" with a 3.3 cm tumor.....it just reiterates how the Oncotype test is merely one of many tools to determine treatments.

    Thanks for posting here, I have added you to the roll call (sorry it took so long, I kept forgetting to check the thread-------chemo brain is my standard excuse----)  And also thanks for sharing the info about the clinical trial SOFT, I had never heard of it.

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  • tea42
    tea42 Member Posts: 17
    edited March 2009

    Hi moodyk13..............I goofed (I blame mine on lack of sleep, which is very hard to come by these days)  The name of my trial is the TEXT trial.  Not the SOFT trial.  I had just recently done some reading on that one so I guess it was on my mind.  Sorry for the error!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    LOL- I am just glad to know I am not the only one who does things like that.  I fixed the roll call.  Thanks!

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  • Britt
    Britt Member Posts: 731
    edited March 2009

    Hello all -

    Well, it is apparent that I am now in the Oncotype DX system!  My onco decided to order the test on 3/2 - I called Gernome Labs today and they received it on 3/4 - so 10 to 14 calendar days to wait for the score!  I have been following this thread and I want to thank Moody for starting it . . . will post again when I get my score!

    Thanks again, Moody!

    Maria

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  • Seabee
    Seabee Member Posts: 557
    edited March 2009

    A 3.3 tumor sounds like a lot until you realize that 3.3 cm is only 1 3/8 inches. One of the things that still amazes me about BC is how something the size of a pea or a grape can completely disrupt the life of the person who has the misfortune to get it. Surely there must be better ways to deal with this disease than the ones we have now.

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  • Mamie2
    Mamie2 Member Posts: 108
    edited March 2009

    Hi beauties.

    Well. The agony of decision is over for me. I am going straight to rads and arimidex. Doc said either way for me I would be right. Wow. We have a "1" er. That is awesome! I treated myself today to a glass of wine, a bottle of melatonin and some red raspberries. Strength be with you all. 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    Thanks mamie for the update.  I updated your rollcall info.

    Britt, you are very welcome.  I will be happy to add you once you get your info, gotta say, I hope you are at the TOP of the list here!

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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited March 2009

    moodyk13

    I have decided on my treatment.  You may update my profile to include:  SNB, Tamoxifen, and Clodromate.

    Thank you for starting this sight.

    Sunandsandgirl 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    I will do it right now.  What is "Clodromate"?  First time I have heard of it.

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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited March 2009
    moodyk13,Clodromate is a biophosphate, and it is a drug used for osteoporosis.   There is new research that shows women who have had bc were less likely to have recurrence if they were taking a biophoshate.  A big draw back is that it can cause deterioration of the upper jaw. My oncologist encouraged me to participate in the biophosphate study.  Three biophosphates are being used.  I was randomly selected to use Clodromate.  Thankfully, they say it only has a minimal risk of mandibular necrosis. The down side is that I have to take it every day instead of the once a year, or the once a week option.  I guess we will see.  Just thought I would give it a try in hopes this research may bring more answers for a cure especially since I have two daughters.   I will keep researching the side effects.sunandsandgirl Sunandsandgirl 
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    Wow, very interesting!  Please keep us updated on your findings.  You are being a part of history and that is so very cool. 

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  • Mamie2
    Mamie2 Member Posts: 108
    edited March 2009

    sunandsand, my doc also wanted me to be a part of that trial but I'm not sure I can do it since I have to return to my home in the islands. I'm really starting to get scared about being away from the doctors.... It's a three year study and doc would want to see me every two months... I didn't know about the mandibular necrosis.... wonder why they would pursue using something like that?

    MoodyK - you still have me at 15%. My actual score was 14%; however, dr says with Arimidex* it is more accurately 12% (with no chemo). Thanks!!! 

    *Because Arimidex is a more effective drug than the study drug tamoxifen. 

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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited March 2009

    Mamie2

    I am not a wealth of information on this, but there is a thread from the breast cancer site called Roll Call: Anyone in Phase III Trial of Biophosphonates that has some links to other sites with information.  It is under the topic of tamoxifen and biophosphonates.  You may find this helpful.

    It has been a good site to lead me to other sites with information.  Sounds to me like the oral meds have less complications and more benefits.  I will keep reading.

    BTW-  We love the islands!  We have visited Anguilla and St. Bart.

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  • Seabee
    Seabee Member Posts: 557
    edited March 2009

    Mamie2--I think the reason they keep using medications with serious side effects is that the benefits far outweigh the risk, which is small. Still, if you get mandibular necrosis (I think that's the lower jaw, by the way.) or congestive heart failure as a result of doing an anthracycline-based chemo, that's too bad for you. There are many medicines that can have negative or even fatal effects on some people, just as some people can die from eating peanuts. There are others that would be fatal to anyone in sufficient quantity. It all depends on dose and susceptibility.

    In the case of these medicines, you have to make a personal risk-benefit decision. Even the remotest possibility of congestive heart failure is too much risk for me, but other people may reasonably come to a different conclusion. 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009
    oops!  Sorry mamie, I got you fixed now though.  Thanks for reminding me!
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  • Mamie2
    Mamie2 Member Posts: 108
    edited March 2009

    well, i went to St Kitts and Nevis in 1999, for a job, and ended up building a little artist's cottage on Nevis. I love it. My parents live in western Pa. where I came for the holidays - and surprise - I'm still here!!!

    I will look at the other thread thanks. I hear you Seabee... I'm really excited about this book my doc suggested by another Pittsburg Dr. (Anti Cancer A New Way of Life) I think I mentioned it here on another thread. It's finally answering lots of my questions...and probably alot of gals' questions here.. too. Have you heard of it? By Dr Servan Schreiber.

    Thank you Moodyk. I hope everyone is doing great... Gosh... this commitment to eating healthy without sugar is killing me on birthdays....i ate a big piece of cake today... Oh sunandsand - i want to get to both of those islands... they are a puddle jumper away!! 

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  • sunandsandgirl
    sunandsandgirl Member Posts: 165
    edited March 2009

    Seabee,

    You are right.  It is lower jaw.  Not sure why I typed upper.  Thanks for the correction.  My mind is in too many places right now.

    Sunandsandgirl 

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  • julesd
    julesd Member Posts: 17
    edited March 2009

    I am one of the "newbies". Please add me to your role call. I am still waiting for the Oncotype results.  Bless you for setting up this forum.  It is so comforting to see that others have been there before me and are willing to share their stories.  I was not prepared to hear that I might require chemotherapy.  Based on my small tumor and early stage, I assumed I would just need radiation and hormonal treatment.  I think my onc was concered because of my age--I am 45. I was thinking the worst was behind me.  Maybe not....

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  • tea42
    tea42 Member Posts: 17
    edited March 2009

    Hi Julesd, just wanted to say hang in there!  I remember all too well being right where you are. Actually today marks exactly three years since my surgery.  I was 46 when diagnosed and my onc was concerned with my age and tumor size as well. My Onco-type test was truly the deciding factor for me not to do chemo.  I will pray for a low score for you.  I really think the waiting game is one of the hardest things we have to do!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    julsed, Hi, I am so sorry you are here, battling this stupid disease also.  I will be glad to add you to the roll call.  As soon as you get your score post it here and I can add you.  If you know what tx you will do, post it also.

    Thanks!

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    Dear ladies:

    Due to my daughter's on going illness, and my work, it has become increasingly difficult to maintain this thread. 

    I would like to see if anyone would mind taking it over for me.  You can copy and paste the whole post, or just the compounded list and do your own write up.

    If anyone is interest, please either PM me, or post here and once you are ready, I will edited my post with the link to the new one.

    I hope that someone would like to do this for me, I hate when ladies post and it might take me two or three days to take care of them.

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  • Mamie2
    Mamie2 Member Posts: 108
    edited March 2009

    Dear Moodyk, my thoughts are with you. Thank you for starting this thread. It is amazing how much work you've done! I wish I could say I can take it on- alas I can't either. My advice though- Move on and know you've been a real angel for us. Do NOT worry - if someone can take it on great, otherwise, maybe someone will start a new roll call. As it is, it's a great Oncotype reference for gals coming in and reading our scores and what we've done. Kudos and blessings to you darlin!! And my thoughts are with your daughter as well.

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  • samiam40
    samiam40 Member Posts: 416
    edited March 2009

    Moody, I'd be happy to do it.  I have pm'd you.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited March 2009

    YEA!!!!!  Samiam!!!!  I responded and I am soooo glad!

    That Samiam, that Samiam, do you like green eggs and ham?

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