Oncotype DX Roll Call!

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

    Yeah, it does stink doesnt it.  But just remember, if it were easy, everyone would do it! 

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    whippetmom - The oncotype dx may help you decide on chemo.  It took 11 days from the time they got my samples to get the results.  Have your doctors talked about Fosomax or other drugs for osteoporosis?   My onc tell me there is good research that taking fosomax with the arimidex not only helps with bone loss, but decreases distance recurrance in the bone.   Also, perhaps a consult with a physical therapist can help you develop a bone strenghtening exercise plan. 

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  • whippetmom
    whippetmom Member Posts: 6,920
    edited January 2009

    kt57 - I discussed Fosamax today with the oncologist - I am just afraid of the elevated risk of osteonecrosis in cancer patients, as well as the increased risk of esophageal cancer. You see, I do have dental bone loss as well and so I fit into a higher risk category of osteonecrosis.  I was on bisphosphonates via infusion for two years [Aredia].  I stopped b/c of the dental issues which came out last year. But I DO need a bone strengthening exercise plan.  I also agree with you about the Oncotype DX test.  I need as much information as possible to make this decision.  Thank you for responding!

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  • webwriter
    webwriter Member Posts: 535
    edited January 2009

    What a fantastic thread this turned into! I am research HOUND and this was so wonderful to read!

    Got my score today, 28-- same as Harley44. Onco confirms that's 18%. We'll do 6xTC dose dense, then TLH and AI's. (Rads too in there somewhere.) Good info on AI's coming through on this thread. Think I'll hang out awhile and soak up expertise! ;)

    Thank you for starting it, keeping it going, and contributing so much to my data starved brain!

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

    Welcome webwriter, thanks for sharing your info here with us.  I got you added to the roll call.  This stuff is interesting isnt it!

    Here is another great website full of info, especially on the genetic side of cancerous tumors and what they look for and why:  http://www.breastcanswers.com so take a look.

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    webwriter: what is TLH?  when do you start your TC?  I will get my second treatment of TC this week - I'm on track for 6 too.  Others get 4 - did your onc tell you why 6 for you? 

    I've refrained from hopping on the radiation/AI threads -- I will when I get closer to those next steps.  These discussion boards are a Godsend. invaluable information and support.

    moodyk13 rocks! 

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

    Gosh golley kt57, you made me blush.  I didn't do nuttin special, but whatever I did, I'm glad I did it.  I usually make women mad (and buddy they let me know it too LOL).

    Anyway, we are all in this together and we gotta help each other out so we all don't go slap stick crazy.

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  • webwriter
    webwriter Member Posts: 535
    edited January 2009

    Moodyk13, yeah. I hear you on that. Loud and clear. Same problem over here, until it just wasn't when I got here! haha!

    Apparently breast cancer is the great leveler-- things just um, change. I gotta give Otter some major credit too. Her brain food has been of the exact food groups needed at the exact times I've needed it. And remind me NEVER to come unprepared to a debate with Seabee--  You so want her on your team when it comes to research! No stone left unturned--she SO knows what it means to build and fight at the same time. Then there is Rock, whom I fully intend to grow up to be like. One day. When I get around to the growing up part.

    So yeah. Kt57 has it right. There is a hero here for everyone, but this thread is a major stand out. Thank you, very much for ROCKING enough to pursue your curiosity for us all.

     KT57, we've actually met on the January Jewels (of 09) thread, but it's incredibly crowded and there's no way you'd have noticed me. I knew I was going to start late, if at all, and waited for the February group. Drop me a line anytime re: our TX. It's a long story, but a lot of it took place in this thread. Hope it helps, but seriously, you're just ahead of me, so let's stick together! (Please, Oh Please be my security blanket????) 

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  • kt57
    kt57 Member Posts: 425
    edited January 2009

    Webwriter: yup i remember you --- the lady with the great smile and the hair I envy.  Of course, I envy most everybody's hair and not just now that I have little.   it is soooooooooo funny that people love my new look - think I'm styling it differently -  tell them it is the hair I have always wanted.Laughing  Just gotta laugh!   And be grateful that my wig consultant did such a great job.

    It is crowded on the Jan Jewels board - hard to keep up.   I guess with one in eight women getting breast cancer, who can be surprized.

    Stay in touch.  

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    My oncotype dx was 17 with 11% recurrence.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    Hi every8thwoman (name is kinda scary isnt it)  got you added to the roll call.  Thanks for participating!!!!
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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Thanks.  The name was the first thing that popped into my head when I joined this group.  Someone else mentioned this thread earlier in the day and it took me a little while to find it.  Good information.  I had the original publication but didn't know how to put it on the discussion board.  I would love to see this roll call with the recurrence score AND whether or not the person chose to have chemo (also which type of chemo).  Thats why I was originally looking for this post. 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    Hmmmm, every8th, that would be interesting.  You can start a new thread from the index page of each topic.  If you would rather me start it, I will.
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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Since youre the original author of the thread and have so many good responses, maybe you should do it.  If you don't want to, I'll give it a try.  I'm still new to this site though.

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  • kamico3
    kamico3 Member Posts: 90
    edited January 2009

    That would be super interesting! 

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    My oncotype score is 9 with a 6% chance of recurrence.  Arimidex for me.

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

    How about I change the name of this thread to "Oncotype DX Roll Call - TX Roll Call" and add to the description what we are looking for and I will start by adding mine.  What was your tx protocol? 

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    arusa, how long on arimidex?
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    Okay, I added it to the above, so anyonw reading, especially if you are already on the roll call, will you please share your tx choice even if you chose none so I can add it?  That would be very interesting.  Great idea every8thwoman thanks for suggesting it!!! Laughing
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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009

    P.S. should we include sx too?  Like mine would be "bi-lat mast".  Or are you looking just for chemo, etc.? 

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  • webwriter
    webwriter Member Posts: 535
    edited January 2009

    You bet! I think this is a fascinating study!

    My Onco wanted 4x AC, 4x T dose dense. I have a family history of heart issues that would blow your mind. I used my score (being node positive, so outside the normal box) to determine my TX. 

    With 28 and 18% being outside high risk, I chose to "risk" alternative treatment. 

    I'm doing CT x 6 dose dense starting 1/29.

    MoodyK13, you've taken on a heller task! ROCK ON! I will LOVE watching the stats we build from this!

    (Depending on what you decide, I'm a lump/SNB who had to return for ALND a few days later.)

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    I started on arimidex 2 weeks ago today.....January 10th.  I am told I will be on it for at least 5 years. 

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Hello Moodyk13 this is gonna be interesting.  I'm doing tamoxifen only-no chemo.  I wrote earlier with an Oncotype dx of 17-can you add me to the list?

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  • every8thwoman
    every8thwoman Member Posts: 147
    edited January 2009

    Also forgot to add.  I had a right side mastectomy- no lumpectomy or radiation.

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  • moodyk13
    moodyk13 Member Posts: 1,180
    edited January 2009
    every8th- you are there along w/ your tx.  Laughing
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  • auriga
    auriga Member Posts: 315
    edited January 2009

    I agree this will very interesting to see the results. I had a mastectomy, and started chemo in January. 4 rounds of TC. My oncotype was 26 with a 17% recurrence.

    Thanks for all your work on this.

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  • darsura
    darsura Member Posts: 71
    edited January 2009

    You can add right mastectomy (RM) to my name.

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  • PattyS
    PattyS Member Posts: 534
    edited January 2009

    Hello all - This is my first post. Although I have been reading your posts for the last several months. I guess it helps a little to know that I am not the only one on this journey. What a wonderful group of supportive people you are.

    My onco score came back 14 and I decided not to do the chemo and will be doing Tamoxifen for the next 5 years. Currently on a break from the Tamoxifen after too many side effects.

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  • klp
    klp Member Posts: 1,770
    edited January 2009

    My Oncotype DX has been posted and I have 2 rads to go before I'm finished. I'll see my oncologist on Feb. 5 for the type of anti-hormonal treatment she'll prescribe.

    My tx was lumpectomy, SNB, 33 rads

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  • hopefullady
    hopefullady Member Posts: 210
    edited January 2009

    I'm not entirely sure what information you are gathering now.  I'm already on the roll call, but for more info I had a lumpectomy, mammosite radiation, 4 treatments of TC, and now on tamoxifen.

     Hope that's what you are looking for.

    Chris 

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