NEW Oncotype Dx Roll Call Thread
Comments
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Anniebell- My MO told me just yesterday that AL's are better than Tamoxifin. I have to choose which one to take after rads and as far as AL's he suggested 3 different ones and one has steroids and I know I don't want that one. I have been getting steriods with my chemo and they make me mean.
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Dianarose-I have also heard that they are better than Tam, but I hadn't heard of an actual percentage change in the recurrence score. It makes total sense. Steroids made me mean during chemo as well, and I roid rage on day 3 post chemo each time. Scared my family to death with my behavior. I have been on Arimidex for 8 months with no SE's to speak of, but I do take Claritin daily as well. It did wonders when I was getting Nuelasta induced bone pain, so I decided to try it with the AI.
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anniebell- AI's give you a 2% benefit over the assumed Tamoxifen per my MO. Your calcs are correct. Another poster said her MO said 3%. Mine said 2%.
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This is unexpected good news. Thank you ladies for clarifying.
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Anniebell- roid rage, that's it!!!! I do indeed have that. By day 3 I crash. That has been how I choose my day off, crash and burn day. They also make it so I can't sleep even with xanax.
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BUMP
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BUMP PLEASE
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16! First time I have ever been happy to get a low mark on a test! Starting Tamoxifen tonight and getting a simulation appointment this week so I can get going on the rads!
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I find out tomorrow what my number is. i am hoping all I will have is radiation. My lumpectomy was on 10/23, clean margins and lymph nodes negative. Found out I am a 17. No chemo. Prescription given for Tamoxifen.
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Now I'm wondering, why do I need: a port, 4 chemo treatments, neulesta, 30+ radiations; then 5 years of hormone blocker therapy!!! I am already post menopausal and have some bone loss, had a partial hysterectomy at age 32 and I'm 65 years old
ER+ >90 PR+>90 Ki67 >20% Doc added chemo based on ONCO score of 34%.
What the heck, does this sound right? Anyone ?
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Yes, it sounds like the appropriate and common treatment based on your diagnosis. An oncotype of 34 is in the high range warranting the chemo. I had 4 T/C with an oncotype of 27. However, alot of women, including myself did not have a port for 4 treatments. The Neulasta is to keep your RBC's up and the radiation is to kill any possible stray cells near the tumor site. Because your tumor was highly ER and PR positive, the estrogen blockers is probably the most important part of the "triple crown". I honestly can't give you the physiologic explanation for a post-menopausal woman but can tell you that I am post-menopausal and and starting out on Tamoxifen. My mother was 61 at dx, post-menopausal, had a hysterectomy 4 years before her diagnosis and took Tamox for 5 years. Good luck with your treatments. You will be done before you know it!
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Tricia it does. My score was 26 and chemo was recommended for me. Some docs will not order a port for 4 rounds and mine did not. However, I will tell you that taxotere can be very hard on your veins. After my second tx, a couple of veins in my good arm collapsed completely and became unusable. They managed to find enough to get me through the rest of the infusions without a picc line, but it wasn't easy and I was pretty much a pincushion. The large bruised area on my arm is just now fading after a year. It didn't hurt but it sure was ugly. If you have good veins it might not be a problem, but for me it was.
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Thanks rn4babies & auntienanc now I don't feel that chemo was unnecessary - Glad you mentioned the therapy because I was going to try to talk the Doc out of it!! Now I'll just go with it, after all he is one of the "TOP DOCS" and that's why I chose him - I'll stick to what I know best - cooking
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I had a problem with my veins becoming very irritated and unusable as well. I have pretty good veins and they never had any trouble starting the IV but I got a red streak from the IV site all the way up my arm each time which was pretty painful. This would occur about 4 days after the infusion. My second opinion doc recommended a port but my primary onc doesn't use them for 4 tx's.
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TricaM - sounds right or even on the light side. My score was 39 and I had much more chemo than what you will be getting. 4 DD AC plus 4 DD Taxol. I had 6 extra weeks of carboplatin as I was brca2. The Neulasta is necesary and probably indicates you are getting dose dense.
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Tricia - your treatment plan sounds exactly like mine. I am post-menopausal, 51 years old and my Oncotype was only a 5! However I had a lot of node involvement and multiple moderately aggressive tumors. My doc says 4 to 6 TC and it is definitely no fun. They installed my port when I had the bilateral mastectomy because, at that time, the doctor was planning on 4 AC + 12 Taxol. He changed the chemo plan because of my really bad family history of heart problems and Adriamycin can be harder on your heart. He also took into account the very low Oncotype score and decided on 6 rounds of TC . . . now he is considering only 4 rounds of TC. We'll see what he lands on.
I am not receiving the Neulasta because my blood counts were good to begin with and he felt that my body would be able to rebuild the blood counts with three weeks between treatments. Blood counts were excellent at 2nd chemo so he appears to have been correct. If they don't rebound properly then he'll add the Neulasta.
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Kam & Beth, thanks for your input..makes me feel better.
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GIRLS- I have changed my info, I am no longer TriciaM but 5LuvBugs - I decided to go incognito
Do you like my new hairdo? It's my 5th grandchild (hence the name 5luvbugs), wearing a puppy dog hat..
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ONCOTYPE 21: I had 1/3 sentinel nodes with micromets and grade 3 cancer cell. Based on the genomic graph on page 3 of my report (node positive) my recurrance is 12 % w/o tamoxifen or chemo. It is 6% w/ tamoxifen and the same with chemo, so basically no gain. I decided with grade 3 cells, which respond the best to chemo, I was going to go with 4 rounds of TC. I have had round 1 of 4 so far. I also decided to use the cold caps and so far so good as far as hair. I wanted to do all that I could to fight this. I am 59. After chemo I do 5-6 weeks of radiation and then hormone therapy...not sure which one yet.
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Luvbugs...I'm not sure what you are asking. By 34% do you mean your Onco score was 34?
My score was 35 and I had, TC X 4, 32 rads, will have 5 years of Femara this coming May.
I also had the Nulasta shot every time and I did NOT have a port for my chemo....I had a 'pic line' in my arm that was removed when I completed my last chemo...before I got out of the chair. That was awesome!!
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Hello girls, I'm just checking in to see how everyone is doing..
Yes Artsee, my score was 34 = 23% - my treatment plans is same as yours except I will take Arimidex
Schoolmom we are on the same treaments and schedule minus 2 days...Hope we are feeling good by Christmas
My hair is mostly gone but I have some left and I'm sick of wearing a wig!! Haven't had to shave my legs or underarms since 1st treatment - my port is working out ok but I can't lift heavy things or it feels like it's coming out of my skin...
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Hang in there 5Luv....I go in for #3 on Monday. I told my kids if I did not feel well on the 25th we were having Christmas on the 27th or 28th....no big deal. Not looking forward to the SEs again....mainly not being able to taste things....it lasts about a week for me from Friday to Friday.
Hope everyone is doing well.
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BUMP PLEASE
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Bumping for Regina...
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51 yrs old at diagnosis
score 11
never given a choice- told not to do chemo and not offered.
if i had been given a choice i would have taken it because i want to hit this with everything i can. especially, since i have grade 2 and over 1cm.
one thing that bothers me still is that my ER which on biopsy came back >90% on the Oncotype was a 7.5 with the positive cutoff starting at 6.5 out of 12. really still don't understand how there could be that much of a difference between the scores, but the oncologist still did not offer. Also don't understand how someone with a small amount of ER can really get the most benefit from hormonals and not from chemo because that negates everything i have heard.
not sure why scores really matter... its all about finding the women who had cells get away and i don't see how the scores do that.
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neugirl - This is just my take...cells can get away either by the lymph system or directly through the bloodstream. The sentinel lymph node biopsy gives info about the first, but with early stage CA the best they can do about the second scenario is to plug us into statistical models and check our blood antigen levels by doing the CA 27.29 test.
The Genomic/Oncotype DX company has lots of info online and are also very helpful to patients by phone. They might be able to provide some info to answer your questions, in particular what the ER ranges mean in comparison to pathology numbers.
My MO always likes to use AdjuventOnline, which is strictly a statistical database. It's a model that doesn't look at actual tumor cells, but uses the path info as well as health history, etc. It's not better or worse than Oncotype, it's just another tool. You could ask your MO if she/he could plug your info into that model. My MO used both Adjuvent and Oncotype for me.
Your MO should be able to answer your questions until you feel comfortable with the treatment plan you are on. If he/she can't do that for you perhaps it would be worthwhile to get a second opinion from another oncologist. If you are convinced that you want chemo you should be with an oncologist who can either make that happen for you or explain to your satisfaction why the risks would outweigh the benefits.
http://www.adjuvantonline.com/
Best wishes!
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Momof2doxies : Oncotype score19 (LMP, SNB, RAD x 16, AMDX) age 59
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Schoolmom, your DX is identical to mine. I'm one year ahead of you, dx 'ed October 2011. Had lumpectomy, 4 rounds T /C and 22 rads. The chemo was rough and like one of the other posters, my veins collapsed, so now even having an IV for an MRI or stick for blood draw is tough. I'm on Arimidex (post-menopausal), with joint stiffness and pain. BUT overall I'm doing great, hair is back ( although a totally new kind of hair'-- fine and curly). what a difference a year makes. The whole chemo scene seems like a bad nightmare. It 's great to have my life back, and I'm thankful for every day.
For all of you just starting out, you WILL get through the tough times. Just check off the days until your final treatment.
(I'm one of those strange ones with a very low Oncotype score -- 9 -- despite having grade 3 tumor and micromets. I chose not to participate in the study of women with low scores plus micromets because I didn't want to take a chance on no chemo. I wanted to throw everything at my BC. i'm glad I did,)0 -
Still hope that everyone is posting their Oncotype Dx and then post any recurrences.
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To neugirl,
Our diagnosis, age and oncotype score is same. I am continuing the AI for 10 years instead of just 5 due to the recent information from the conferences.
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