low oncotype score/still do chemo?

MPellot - would you maybe want to delete your comment or edit it to get rid of your e-mail address

Beer girl - could you maybe have a Positive & negative on your her2nue because at first did they maybe do the IHS type (I think that's the initials I didn't pull my sheet out) first and get a 2+ which means borderline for positive and than did they maybe do the fish version her2nue and that come back negative.  That's the way my test went.  So if you see a 2+ that does not mean positive.

Otter - I hope your second treatment went well yesterday : ) 

Karen,

Glad that your 1st tx went well.  Did you get Taxotere & Cytoxan?  I am guessing you also will only need to have 4 txs... I know, saying ONLY... but, some get more. 

One tip that my onc's office gave me for the Neulasta shot, and it worked for me, is to take a claritan every day for 3 days after getting the Neulasta shot...it will help with the se's.  I didn't get the Neulasta shot after my 1st tx., I guess my onc was trying to save himself some money.  I had to wait til 10 days after, and had b/w done, which showed my wbc had tanked!  So they had to give me a Rx for antibiotics, and 4 Neupogen shots!!  I had the 1st one in the office, and I had to give myself the other 3!  OMG!!  The bone pain was TERRIBLE!!  So, after that, I insisted on getting the Neulasta shot, and I didn't have any trouble after that...But, I DID take the claritan... Not Claritan D, just plain Claritan.

Hope all goes well with everyone's tx, if they are getting them!!

Hugs
Harley

Harley 44 - I am getting four rounds of TC. I guess i am glad my onc gave me the Neulasta instead of having to give myself shots of Neupogen! Thanks for the tip about Claritin. I will try it. I feel like a walking medicine cabinet right now. I am assuming you are through with your chemo. I can't wait to be in your place if you are.

Karen

Karen,

That is what I had...4 txs of Taxotere & Cytoxan, and Yes, I had my last tx on Oct. 9th!!  So glad that is over!  Oh, and your hair WILL GROW BACK!!! Mine is about 3 - 4 inches long now.  Everyone I see compliments me on my hair, even people who don't know I just had bc, and chemo!!

The Neupogen shots were no fun!!  But, if you get Neulasta shots, and if you take Claritin, your se's should be few, as far as the bone pain.   One day, I felt a little achey, like I was coming down with the flu, or something, but I could manage that. 

In fact, I just had my 1st annual follow up appt. with my breast surgeon, and he doesn't want to see me again til NEXT YEAR!!!

So you see, you WILL get through this!!  It is not fun, but it's definitely do-able!!  If I can get through tx, and I am a big chicken, then SO CAN YOU!!!

Thinking of you and prayers for your tx, that they will go smoothly, with minimal se's...

Hugs,

Harley 

Karen,

Oh, the hair will come back before you know it!  It would STILL be nice if it came back as fast as it falls out!! 

I know that the women here are SO NICE!  I feel honored to be part of this group of wonderful women!!  I got a lot of support from the women here while I went through tx and after.

I see that you live in Charlotte, NC?  I live near Calabash, NC, in a little town called Carolina Shores. Maybe one day we will meet... it's only a few hours away, I think.   

Hugs,

Harley

Otter..Ilike your new Onco too!!! I will feel much better when I'm having that glass of wine with dinner.

Evie

Karen,

Once you are through tx, it would be GREAT if we could meet for lunch or dinner, when you come to the area!  We live so close to Sunset, that we go there often, just to relax and sit on the beach, and read, or just listen to the ocean...

We also like to go to Ocean Isle beach, and have gone to The Giggling Mackerel, for lunch, after a morning of walking the beach, looking for seashells. 

We really love it here!   I can't wait to meet you!! 

Hugs

Harley

Hi to mpellot, harley and otter - Wow it is nice to hear from all of you. I am doing okay - guess better than I thought because I have not dealt with any nausau yet, just that yucky metal taste in my mouth so nothing tastes good. Drinking lots of water. Did develop a bladder infection ( that had probably started prior to treatment) but the cytoxan brought it out so am taking antibiotics also. Along with the steroids, I feel crazy. Just tired and VERY achy from the Neulasta - last night I felt like my bones were producing enough cells for the free world, but not complaining. Would rather have that for a couple of days than low counts so an glad I am geting it. My overall impression is that it is not as horrible as I thought it would be.

Otter - has your second treatment been different? They told me that they are cummultive with the third usually being the worst, but I try not to listen to that. Just one day at a time. Can anyone tell me if the metal taste lasts the whole three weeks or gets better?

Harley - lunch sounds great whent his is over!!! Anyone else near us? Thanks to all, Karen

Karen,

Yes, the fatigue from the tx was cumulative...it gets worse, and #3 was bad, but #4 was the worst!! 

I didn't get the 'metal' taste in my mouth, thank goodness.  I also didn't have any problem with nausea. 

Otter,

I didn't have am allergic reaction to my tx or Neulasta, but maybe they can run it slower next time, or maybe they can give you something to prevent you from having a reaction.  Just a thought. 

Good luck!!
Harley

reported aleesha

TheGoodLife,

Oncotype testing has caused what some people have called a paradigm shift in the management of ER+ BC.  Even so, nobody really  knows for sure how reliable Oncotype testing is, especially for scores in the intermediate range.  There just haven't been enough women tested yet, to see how well the test results correlate with survival.  Since it's such a new test, many oncologists don't want to base clinical decisions on results of Oncotype testing alone.

That's the main reason why there is a big clinical trial underway right now, called the TAILORx Trial.  It will test whether women whose Oncotype scores are between 11 and 25 can do without chemotherapy.  The follow-up time in that study will be many years--I think maybe 2 decades in total.  So, it will take quite awhile even for preliminary results of survival data to be available.

It sounds like "no chemo" is a reasonable decision for you, based on the low benefit of chemo.  What was your actual Oncotype score, just out of curiosity?

otter 

TheGoodLife:  I am also 42 yrs. old with stage 1 bc w/ clear nodes.  My oncotype score was 12 and I had a mastectomy.  My onco suggested that I still have chemo because of my age.  Apparently, most of the oncotype studies have been done on older women and the docs are just not sure.  I have had 2 out of 3 treatments of cytoxan and taxotere.   Still questioning whether this was the right choice.  On one hand, chemo sucks.  On the other hand, recurrence would be worse.  I'm assuming you are ER+ and HER2-?  Right now I'm am trying to decide whether to go on tamoxifen when this chemo is finished or to have my ovaries removed and take the other hormones.  Too many decisions!!!  Have you tried a second opinion?

Debbie

TheGoodLife,

I agree with debap.  My onc didn't care if I got chemo, but my surgeon INSISTED that I do it.  He said that it was because of my age.  I am NOW 45, but was 43 when dx'd, the month before my birthday. 

It has NOW been OVER a year since my dx on 3/15/2007 and I am here to tell you that even though chemo is no fun, it is DOABLE.  See, the way I look at it is this...  we only have ONE life, and since we are so young, we have more years for the bc to recur.  If we find it early, which is what this is all about, all of us who are eligible for the Oncotype test are early stage bc, well, then we need to hit it with the BIG guns, to give us the most protection.  I look at it as extra insurance.

GOOD LUCK to everyone who is considering chemo, or starting chemo.  I am the biggest chicken, and if I can do it, then YOU can, too!!  I had 4 tx of Taxotere & Cytoxan, and I'm here to tell you that it really IS doable!

Hugs to all,

Harley

hi to all who are getting chemo now, and Neulasta shots:

Don't forget to take Claritin for 3 or 4 days AFTER your Neulasta shot.  I took one one the day of my Neulasta, when I got home, and I didn't have any trouble with bone pain. 

After my 1st tx, my onc waited until my bloodwork on day 10 showed a dangerously low wbc, and THEN he ordered Neupogen.  The Neupogen shots were HORRIBLE!!  I got FOUR, and had the nurse show me with the first one, but after that, I had to give myself the rest...  Believe me, that Neupogen was FAR WORSE than the Neulasta!  But everyone is different, so maybe I was just lucky, or maybe the Claritin worked... it can't hurt, so try it!

Good luck!!
Harley

Kfalls,



I would really like to talk to you. I also live in the Charlotte area. TC just over the state line in SC. Is there a way to email each other. It seems our cancer is similar. I don't know my grade and my onoctype DX has not come through yet. Two weeks till it is back.



I was a Dx 3/9/2008, ILC and ILSC, 1.5 cm, Stage I, Grade?, 0/5nodes, ER=/PR+, HER2-



My Surgeon is at Blumenthal , CMC Hospital , Dr White , my Oncologist is Frenette(?)



Is there a way to email each other? I have great support but no one I know , is at my stage . I have so many friends that are stage 0, one friend who is Stage 4 and has been battling BC for 14 years , she is the only one that has been through chemo. Love to discuss and learn from each other.