Taylorx clinical trial.

Hi, Hugs
I was in Taylor X last year. Waiting was the worst. I had myself s0
worked up over it. Oncologist said he'd recommend chemo. Thought i
was helping others.I came in at top of scale and had the chemo.
The worry is if you are in middle group 12 - 25 i think it was they flip a coin as to whether you have it or not!
Good luck with it all.I was ideal cos i was oestrogen receptor positive.
Cant sleep. My husband is in hospital after a big op - life isnt fair, is it?
Take care

Gemgee xx

Thats the problem gemgee. I had myself worked up for the chemo, had even bought a couple of wigs off ebay, and bandanas. I had told my kids Id be losing my hair etc, so i was all set. But now I have myself convinced that Im not going to need it, I feel as if I have a new lease of life I know that could come crashing down on me. but its nice to be able to have some hope for a couple of weeks.

I suppose the worst case is if I come between 20-25, and they flip the coin and it comes up no chemo. that will be a worry But I know I can pull out and get chemo if I really dont feel that i could live with that decision.

I just hate the waiting around, it really freaks me out!

Oh I meant to ask how is your hubby doing? What is he in for?
I agree...life can be really cruel.
I was the healthy one in the family...not any more...lol. We are all fecked now

Hi hugs,

My sister has just recently joined the TailorX trial. The test they send tissue off to the US for is called the Oncotype DX test. The company who created this test look at your tumour tissue to check the levels of several genes in it. They use this info to give your tissue a score which indicates how likely your particular cancer would be to recur over a ten year period. As you know, a score of 25 and over means chemo and a score of 10 or under means no chemo. If you are in the middle (11-24), you are in the 'grey' area - they are not sure whether chemo is REALLY necessary or not. So they will put half this group on NO chemo and half on chemo and then compare how the two groups do over time.

We were praying for a 6 for my sister but she came in at 23! She didn't want to have chemo but she was put in the Yes to Chemo group and, after a LOT of thought, she decided to give it a try and is due to begin on Fri.

I hope you get a score of 10 or less so you don't need chemo and have the test result to give you a comfort feeling about not having it. But if you are in the middle test group and are randomised NOT to have chemo and are unhappy or worried about that, just talk to your Breast Care Nurse and/or consultant. If you really would prefer to have the chemo, I'm sure you can. It may mean you are not part of the trial but I don't think there would be any hassle about that. YOU and how you feel is what is most important.

Hugs,
Flo.

PS If you want a look, this is the Oncotype DX website
http://www.oncotypedx.com/BREAST/index.aspx

Hi,Hugs,
Had this all written today - my netbook went to hibernate!
Been a bad day today, back really paining. have had 3 ops in the past.
Hubby a bad diabetic, always minded himself - he had a leg bypass in James last Thurs. Never heard of one before.
Why were you picked for Taylorx? Like you i thought if i came in low i wouldnt need chemo. It really confirmed for me that i needed chemo.

Take care. Will be thinking of you.

Gemgee x

Hi Hugs
Dont have any advice on this . . . sorry. I just popped in to say hi

Ok so the results came back. Im n the 'grey area' (ie between 11 and 26), and the coin was flipped and no chemo was recomended.
I was delighted until I asked what number I came back in. Im a 25!!!!
I was in complete shock, i just kept saying 25 is beside 26 (the danger zone). It completly freaked me out, so i pulled out of the trial

Im starting chemo on monday. Dep breath in...here we go....

Hi Hugs,

Sorry you didn't get the '10' I was hoping for. I'm glad you did what YOU wanted and pulled out of the trial so you could have the chemo. The most important thing is your peace of mind.

Good luck for Monday. I had visions of myself wasting away and being like Debra Winger in Terms of Endearment but I got through it ok. The anti sickness, etc is so good these days that most people do. Some people even manage to work through it all! Maybe thats on a less toxic regime than AC and Taxol. I certainly wouldn't have been able to!

Anyway, let us know how you get on. My sister had her first session 8 days ago. She had slight nausea, acid indigestion and 1 bout of diarrhea over the first few days. What did surprise her was that, on day 4, when she stopped taking the steroid (for anti sickness) the fatigue hit her hard. But by day 6, she was starting to feel more 'normal'. Everyone is different though, so fingers crossed you fly through it.

Hugs,

Flo.

Hi flo, It was a huge shock that i came back in at 25. If i was a bit lower i would have been happy enough not to do chemo, but i just feel 25 was wayyyyyy too close to the danger zone. I felt bad having to pull out of the trial, but to be honest I dont think i would ever sleep properly without the chemo.

I had my first treatment yesterday, and i feel fine so far. We will see how i am in a couple of days....lol

Im taking all the anti sickness tablets, even if i dont feel sick, im not taking any chances

I hope your sister is keeping well xx