Oncotype DX Roll Call!

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  • Hood1980
    Hood1980 Member Posts: 537
    edited February 2009

    Karen,  I'm so sorry to hear about Olivia!  There are tons of us praying for her & we will continue to lift her up in prayer & for the Lord to guide her physicians!  It is so sweet of you to keep us updated!  You let Olivia know that her "aunts" in the Ta Ta Sisterhood are sending up prayers for her.  We love you both!

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  • darsura
    darsura Member Posts: 71
    edited February 2009

    Loved what you told those ER docs!  Praying for your little girl, and your family.  

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  • kt57
    kt57 Member Posts: 425
    edited February 2009

    moody: sounds like your dtr is in good hands.  add me to the list of those remembering Oliva and your fam in prayer.  

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  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2009

    Moody, just adding mine to the many prayers for your daughter and family.

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  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

    New to this post- will saya  prayer for your daughter - hope all is well.

    My oncotype is 18 - 11% recurrence. had lumpectomy - 2 rounds of TC (onc took me off after had a reaction). Now doing 20 rads (dose dense candian version) - will be done 3/3. Starting femara (AI) later this week.

     Onc said it was my choice to do chemo - he would be comfortable either way...

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

    marlenet, crusader1, fairy49, babyc, lories, mary5454, I got your info updated/added but PLEASE check to be sure I got it correct.

    Welcome lories and mary5454.  If anyone has posted their info and you dont see it in the roll call PLEASE post again and tell me that it is your second post.

    Olivia is still here at Scottish Rite, my hubby brought my laptop so I got internet now.  here is her update:

    Recap of today's adventure at Scottish Rite Hospital:

    OMGosh, today was one of the worst days ever.  They came for Olivia about 12:00ish for

    MRI.  The motion of the wheel chair made her sick, so we had to walk, sit, walk, sit.....took about 15 - 20 min to get there.   They took us into a room and made her switch into hospital gown-------Olivia is VERY sensitive about her body being "accessible" and they have allowed her up to this point to keep her own clothing on......so this upset her. Hysteria #1 

    THEN they made us watch a video about all the "possible adverse reactions"..... UUUGGGGHHHHH  Olivia was CONVINCED she would DEFINATELY have these all and die.  She was soooo wroked up and terrified it amplified her nausea....... speaking of which, they couldnt give her anti-nausea meds before her tests because of the stuff they have to inject into her veins........Hysteria #2

    We finallty make it to the MRI room, this is NOT an open MRI.........Olivia is claustaphobic.............hysteria round # 3. 

    They told her they would have to put her to sleep if she didnt do it today. Olivia is terrified of being put to sleep because she is convinced she will "go towards the light."............. hysteria round # 4 

    We leave MRI room w/o having it done.  Fortunately they were able to take us on to the HIDA scan.  Nice big OPEN machine....very flat table to lay on......Olivia cant lay flat as it makes her even more nauseaous........hysteria round #5. 

    We get her on the table, but the table has to MOVE under a HUGE machine......hysteria round #6.

    Finally got the table under the huge machine, then this huge machine begins lower itself right on top of her..................hysteria round #7 which continued on for 1 1/2 hours straight. 

    This child has the endurance of the energizer bunny.  I kept thinking she would HAVE to exhaust sooner or later......WRONG.  Then the radiologist decided he needed picks with radioactive material pumped into her veins.  The lab teech guy tells her that the radioactive stuff may make her feel wierd...............hysteria #8, 9, 10 & 11. 

    Then she decided it was all my fault and I was letting them torture her on purpose and I don't love her or I would make them stop.....And this is when I let out my "sigh of relief".  See whenever she gets to the point of "it's all mom's fault"  I know she is wearing dow!  I said "praise Jesus, it's all my fault!"    It was actually music to my ears.

    Finally, Finally, Finally about 5:00 we got back to her room.  Mark & I then realized that all

    we had had today was a cup of coffee about 8am, so we meandered the 5 floors down to the cafeteria...yippee

    So now we wait.  They are coming for her I think around 6:30am to try for the MRI............I am going to go ahead and assign this hysteria #'s 12 - 30 if they can hurry with getting her to sleep, if not.................I shudder to think.

    The End.

    P. S.  On a good note though, SHE PEE PEE'd !!!!!!!!!!!!!!!!!!!!!!!  And right now this second, she is SIPPING SPRITE!!!!!!!!!!!!!!!  This is the first thing that has crossed her lips since friday nite.  WOOOO HOOOOO..............but it has a laxative in it...............boo hoo

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  • Hood1980
    Hood1980 Member Posts: 537
    edited February 2009

    Karen,  We all will continue with our prayers for Olivia!  It is so sweet of you to give us an update.  You must be exhausted, so get yourself some rest for tomorrow.  One thing for sure, you got your yourself a fighter! 

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

    Here are some pics of my baby girl so you can put a face with her name:

    Christmas 2008:

    1st day of 7th grade Aug 2008:

    Dance recital May 2008:

    Age 5:

    Age 3:

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  • JustSaying
    JustSaying Member Posts: 73
    edited February 2009

    Moody, I hope things are getting resolved with your daughter - I know the pain of having a very sick child and have spent many days and nights at Children's Hospital in Boston, wishing it could be me being the one suffering and not my child.

    Something occurred to me last night about the Oncotype scoring and risk of recurrence. If you look at page 3 of your report, where it shows the ER/PR/HER2 scores, you will notice that under the Clinical Experience heading in the ER Score section it says that the % risk rate reported on page one:

    "...takes into account the magnitude of tamoxifen benefit indicated by the ER Score". 

    So what I think this means (and I will confirm with my onc) is that the % risk number, in my case 12% for a score of 18, could actually be different for another woman who also had a score of 18. This is because the ER responsiveness impacts the amount of risk reduction - in other words, Tamox will work better the higher your ER Score.  The reason I noticed this is because I saw others with the same score as me but a slightly lower risk of recurrence rate. I don't think it is correct to link the Oncotype score to the risk rate.

    If this has already been noted on this thread, excuse my excessive elaboration...but if not, everyone should be aware of this.

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  • kt57
    kt57 Member Posts: 425
    edited February 2009

    moody:  well I can see it's "all your fault" that your dtr is a beauty!  Hope today is going better with tests and progress for Olivia.  

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

    JustSayin, first, I am so glad you have put your pic up, you are so pretty!  I love being able to put faces with theses names!  Second, let me say, you may or may not be the first to point out scores vs recur %, but I dont rem and dont feel like going back to look.  BUT I agree with you.  It has to be just as you said because of the differences in % w/same scores.

    But I am a curious type person and like gathering this type of info, then I spend time "analyzing" what makes the differences.  LOL  I know- I need a life.

    Anyway, here is an update on Olivia's MRI... I have told so many people bad news comes fast, if you are told to wait for results, probably a good thing...........MRI results were back and doctors were in our room in less than 1 hour.

    Deep inside our brains is a cavity that contains the pituitary gland.  I know some things this gland does but guess I will be an expert very soon.  Anyway, the cavity in Olivia's brain has no gland........One thing we do know is that is does control one part of the brain that triggers nausea and dizziness.

    So, it seems that we at least know where to go next--specialists.  They are calling in a team of endocrinologists and neurologists to take over her case.  The GI doc of course does digestive system, not brains. 

    So we wait......GI doc did say that the next 24 hours are the most critical for her due to the no nutrition since last friday.  Yes she is getting sugar water, but obviously no nutritional value their.  There is a possibility of having to do a pic line.  If they have to do this, there is NO measurement on the "hysteria" scale to cover that amount of hysteria....I bet you would be able to judge by the screams you will no doubt here in Hall County all the way from Scottish Rite.

    I have no idea how much longer we will be here, but doesn't look like we will be coming home anytime soon.

    Anyway, as soon as the new "tag" team comes in and tells us anything I will update everyone.  Thank you for the prayers as we certainly feel them!

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  • Mom_of_boys
    Mom_of_boys Member Posts: 556
    edited February 2009

    OMG, Olivia....... your daughter is absolutely and completely beautiful!  What pretty blue eyes, smile, hair -- she definitely has the whole package!

    Still praying for her.

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  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

     MoodyK - Your daughter is beautiful. I hope everything goes well....How are  YOU doing??

     Lories- My onc told me that you had to do chemo within a certain time frame. I thought it was you had to start within 60 days after surgery. Check with your oncologist.

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

    Well as I said earlier, right now their biggest concern is the lack of nutrition, so this is going to be addressed tomorrow.

    They are going to have to put her to sleep and put in a feeding tube down her nose past her tummy and straight into her intestines.  It has to bypass the stomach because if they force anything into it, it will trigger the brain and make her vomit.................not good.

    Rem the hysteria scale of 1 - 30?  This doesnt even register.  In fact I dont know what you could call how she will handle this.  SO.........they are sending in a child psychologist and the doctor that she has bonded with to start preparing her now for what will happen tomorrow..........................................................going to be a long long long 24 hours.  Actually, until we are on our way home all healed, it is fixing to go down hill for her psychologically............................................................................................I would rather go through hard chemo and be bald again than to have to do this to her.

    I trust God, I have faith in God, I know He has this thing under control.  I am angry with Him (but He already knows this and has forgiven me for it), I dont understand it, I am terrified of it--more than cancer or anything else.  I have never felt so horrible in all my natural born life.  Thank goodnessGod is carrying me because I couldnt do this without His strength.  Im still mad, but I am thankful we are His children.

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  • slmdavidson
    slmdavidson Member Posts: 127
    edited February 2009

    Moody

    Lots of us are praying for health and strength for you, hubby and Olivia!  I have a 7th grade boy and I know he'd be just as hysterical about any of that stuff.  He doesn't handle pain well.  I certainly understand how you wish you could take this for her.  Be strong and hang in there.  God will provide, it's just not always what we picture it to be! 

    Thanks for all you've done with the roll call.  I'm waiting for my test results and will let you know my score as soon as I have it.  We all appreciate you!!!

    Laura

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  • Seabee
    Seabee Member Posts: 557
    edited February 2009

    Moody--wishing you and your family well.

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  • JustSaying
    JustSaying Member Posts: 73
    edited February 2009

    Moody thanks for your kinds words. I don't feel too lovely now with a hacked up chest and my roots all growing out since I'm scared the hair chemicals will cause more cancer!!! I'm really not complaining though, I'm happy to be alive.

    Let us know if there are any updates on Olivia. I am praying for her and for you and I know a lot of others are as well. She is strong, and it's been my experience that kids can pull through things that would knock us down. God will protect her, but you know that. I get mad at God too, especially about my kids, so I know how upsetting that is.

    I hope everyone keeps updating their treatments so we can see who goes for chemo vs who does not - for us borderline cases. I am seeing the onc tomorrow morning so I should have an update then.

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

    Moody.....hoping for some news regarding Olivia tomorrow.  There are so many prayers on her behalf....

    I got my Oncotype DX results today to add to the roll call:

    Score:  13 - 9% distant recurrence rate. 

    SNB - on Tamoxifen.

    Thanks again for doing this - for keeping track of all of this.  It is a great compilation of information. 

    Deborah

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  • crusader1
    crusader1 Member Posts: 1,222
    edited February 2009

    Hi Moody,

    Yes Olivia is such a beautiful girl.

    I do hope some progress is made with Olivia. I can imagine how upset you and your husband are. 

    We all say that this cancer is not fair but we will get over it. Our children should not get sick.

    I am sure in the near future this too will be in your past..

    Children are resiliant and will come back even stronger.

    Stay strong ...Moody.

     BTW.. I am commenting at the oncotype percentages being a little different for some. At first I was fixated on the actual percentages. But my husband and I now believe that if your score is on the high side over 25 lets say ,  the actual percentage is not that important. Getting some chemo is. We don't know what the future will bring but we must do all we can to prevent a recurrence.  

    Francine

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  • Seabee
    Seabee Member Posts: 557
    edited February 2009

    JustSaying--Oh, great catch. I think you must be right. It could easily be tested by comparing more scores with varyaing recurrence percentages to ER numbers.to see if the differences coincide.

    What a sophisticated instrument this test is!  I just hope it's as reliable as it is subtle.

    Moody--I'm amazed that you can maintain your sense of humor under such circumstances, but it's a good thing that you can. Keep us posted.

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  • JustSaying
    JustSaying Member Posts: 73
    edited February 2009

    I just got back from the onc. In a nutshell, chemo is definitely out, so that's a relief. Since my main tumor was grade 1 and 1.2 cm and no lymph node or lymphatic/vascular invasion, I'm under the cutoff for "traditional" clincal determinations of chemo's benefit, and since my Oncotype was 18, I'm very much in the area where there is little to no benefit shown there either. She did a very good job at explaining the Oncotype score. For anyone who doesn't feel good about whatever their onc recommends, I would definitely say go for a 2nd opinion.

    I will be starting Tamox soon, and then about a month later start with Lupron. Then normally I'd switch to an AI once the Lupron kicked in, but I was also given the option of a clinical trial where I'd do whatever hormone therapy I was already going to do, and then get randomized onto either Zometa by IV or one of 2 oral bisphosphonates. There is no placebo group in this trial. I'm leaning towards trying the trial. It's apparently the only way to get a bisphosphonate for early stage BC without paying for it yourself. Oh, and I was told I could also have an oopherectomy instead of the Lupron, or have an oopherectomy later if I don't like the Lupron for whatever reason.

    Moody, where did you go?

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  • crusader1
    crusader1 Member Posts: 1,222
    edited February 2009

    Hi Just saying.

    I will need chemo due to my score but I am interested in what you are talking about. What is Al. Lupron ,Zometa etc.

    I assume if I take chemo I will just be taking Arimidex. Why are you considering removing your ovaries.

    Can you explain these drugs to me ..

     I am trying to learn this stuff so I will be prepared when I go for my oncologist appt.

     Thanks

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  • JustSaying
    JustSaying Member Posts: 73
    edited February 2009

    Hi crusader,

    AI is Aromatase Inhibitor, an example is Arimidex. It seems that using Arimidex instead of Tamoxifen in post-menopausal women results in lower recurrence. However you can't take an AI until you have gone into menopause, and I have not. Therefore, they give you a Lupron shot every 3 months and that shoots you directly into menopause, or you can elect to have your ovaries removed (which you only do once!!!). And of course this is only for women not wanting kids. I had my tubes tied at age 29, so no issue there.

    Here is an excerpt from the following medscape article:

    http://www.medscape.com/viewarticle/547983

    "For postmenopausal women with hormone-sensitive early-stage breast cancer, there is a survival benefit in switching to the aromatase inhibitor anastrozole (Arimidex, AstraZeneca) after an initial period on tamoxifen (Novaldex, AstraZeneca), a new meta-analysis shows.

    Combining data from 3 studies revealed a significant improvement in survival with anastrozole, even though none of the studies individually showed this effect, researchers report in a paper published November 17 in Lancet Oncology."

    Also, it turns out that there are some early studies showing that a bisphosphonate such as Zometa may provide further reduction in recurrence in early stage breast cancer. It's odd, because they are normally for either BC that has mestastisized to the bone, or for osteoporosis. That's why they're doing this more in-depth trial, which I may take part in. You can't have any kind of serious dental problems though, if you want to try the bisphosphonate, as there is a risk of jaw bone necrosis. 

    I hope your onc will be as good at explaining as mine was. I found it very helpful to get an in-depth explanation of things, but it really helps if you spend a lot time before your appt learning as much as you can, so that it's not too much information overload once you have the appt. 

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

    I have just logged on and before I even begin to read all these posts, I wanted to post a wonderfully hopeful update!

    First let me say I am so sorry I havent been able to post and read posts since thursday a.m.  We have had so many specialists in here through out the day.  Then, I just wasn't in the mood to read, write, or talk to anyone.  I know that may not be fair, but I couldn't help it.

    Last night Olivia had lots of visitors and she LOVED it!  Really raised her spirits!  She rested so much better last night and was able to deal with her nausea, so I sing the HIGHEST praises to God ever!!!!  In addition to that, I convinced them to switch her nausea meds to Kytril, Zofran, and Reglan.  This seemed to take most of the dizziness away and she was able to get out of bed to go to the bathroom!  She even got up 3 times this morning, once by herself. 

    Pastor Robby and Laura came down this morning and Pastor Robby annointed her and prayed over her.  Besides the healing power of Jesus, the fact that Pastor Robby took the time to come do this blessed her beyond measure.  She was so thrilled!!!!

    Then came time for preparing her for the day's "events" and needless to say, it has been tough, tough, tough.  She has had to have the psychology team come in to explain to her the endo-scope procedure and that she would be asleep (which of course she fears) and explain that she would wake up with a feeding tube----------I can't remember what hysteria number she was up to, but I believe she used any up she had left! 

    Endoscope went very well.  Dr. said esophagus, stomach, etc looked great, so he has placed the feeding tube into her stomach rather than small intestine.  The goal now is to see if her tummy can tolerate anything at all in it. 

    When she got back to the room she was in a bad state of mind.  She wanted to die, she didn't want to live anymore.  She was begging me to kill her and wanted to know why didnt we just let her starve to death, etc.  This was soooo difficult.  The psych team decided to give her something to calm her down before she got so depressed that we had a whole other issue to deal with.  The drugs were liquid and went through her feeding tube.......SHE DIDN'T GET SICK!!!!!!!!!!!!!!!!!!!!!  PRAISE GOD!!!  The liquid hit her tummy and she didn't get nauseaous.  The meds made her sleep about 30 min.  When she woke up the psych dr was here and she is doing much better.

    So where do we go from here?  Couple of things will happen now.  First, what the GI doctor is hoping, is that the stomach was merely inflamed and irritated for what ever reason over the past 6 weeks.  The inflammation progressed to the level of which everything that touched her tummy upset it causing the nausea.  They have been giving her mega doses of Nexuim since we've been here and had added Reglan to the mix wednesday. 

    So it is possible that these too things, plus keeping her tummy empty for these 6 days gave the meds clear room to work with nothing coming in (liquid & food)to keep it irritated.  They started giving her amino acids that are suppose to be soothing and not cause cramping or other discomforts, according to doc, tonight about 6pm.  It is going in super, super slow.  Like 1 tsp every 30 mins.  If she can tolerate the amino acids she is getting tonight, then tomorrow they will begin to add baby formula, and build on that.

    If she cannot tolerate this "stuff"  they will have to push the tube on into her small intestine to bypass the stomach and start testing for "neuromuscular disorders of the stomach" a.k.a. "gastric dysrhythmias". 

    So, I am praying so hard that all goes well with the nutrients.  I am praying that we have actually DONE the treatment and are in the recovery process.  Last night I just wanted to start the treatment process.  I have to admit, when she went into surgery today, I was almost starting to feel hopeless and that they would never figure this out.  But seeing her getting some nutrition, no matter how has been the biggest relief I have ever felt in my life (I think, cuz I cant remember everything...LOL)

    Positive thing:  Drew (my 19 year old son)has been so worried about her, and has been getting people at his work to pray for her and he has been sending her texts with words of encouragement, love and telling her God will heal her!  That in itself has been HUGE for us.

    Anyway, she and the rest of us certainly covet your prayers, and visits, and love as you all have been my strength because I have had no strength!  I thank God everyday for each and every one of you and we cant wait to get our lives back real soon. 

    The nurse just came in and asked her how she was doing and she gave her the "thumbs up" sign!!!!!!!!!!!!!!!!!!!!!!!!!!!!!  WOOOO HOOOOOO

    Please continue to pray that this baby girl can get to eating real soon so we can start hitting all the places she wants to eat real soon!!!!!

    We love each and everyone here on this board!!!  I cant wait to start reading all these wonderful, strengthening words of love and encouragment to Olivia.  God Bless You All!!!!!

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  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

    MoodyK13 - thanks for the update. Things are sounding better! Will continue to pray for her complete recovery.

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  • ChrisBern
    ChrisBern Member Posts: 33
    edited February 2009

    Hi,

    I'm a man of 31 diagnosed November 13th.

    I received yesterday my Oncotype score: 33 (22%). My tx are AC X 4 + T X 4 DD. My last AC is next Monday.

     Christian

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  • crusader1
    crusader1 Member Posts: 1,222
    edited February 2009

    Moody,

    Glad things seem to be going better for your daughter. All of us on this board are rooting for her..

    Just saying..

    Thanks do much for your info . I do understand more now. I will continue investigating my options So I will be more informed when we meet with the oncologist..You are really so knowledgeable ..

    Thks again...

    Francine

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  • Nancyb7912
    Nancyb7912 Member Posts: 84
    edited February 2009

    My oncotype is 37 - 25%

     In my case, it was all about the HER2 - my original biopsy stated I was HER2 neg. Oncotype came back as HER2 pos. I went from RAD/ AMDX to the protocol below.

    LMP/ SNB/ AC X 4/ T/ HRPN X12 / HRPN X 16/ RAD/ AMDX

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

    ChrisBern wow you are the first male bc survivor I have met.  I am so sorry you have had a reason to join up here and you are soooooo young!  This site is the BEST for offering love, support, and valuable information.  I got you added to the roll call, please check to be sure I got your info right.  I added that you are male because I believe it is important for the roll call, but if you would prefer I leave that part off, let me know and I will remove that piece of info.

    If you need anything just ask as we are all here for you!

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  • mary5454
    mary5454 Member Posts: 89
    edited February 2009

    Just saying- regarding the % of recurrence as related to the benefits of tamoxifen - I wonder how that changes when you are using an AI instead of tamoxifen?

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