TailorX TRial

marie111

TailorX TRial

marie111

Has anyone participated in the TailorX trials ? My onclogist recommends I do this and feels my recurrence score should be low. If so I will not receive chemo. Has anyone had experience with this trial ?

Marie

calm

I will be participating in this trial. My case is very similar to yours and my oncologist believes my score will be low..

sling99

Marie/Last,

My surgeon briefly mentioned the trial to me. I have yet to meet with my oncologist. Did your oncologist say why your score might be low?

KEW

It is my understanding that getting chemo or not will have nothing to do with your Oncotype score.  If you are in the study gray area, which I think drops down to 11, you will be randomized, and either will or won't be given chemo--it is not based on what your score is, it has to be based on randomly assigning someone to treatment. I'm not sure if they take people below 11 because they are trying to determine if chemo benefits the women between 11 and twenty something.  Genomic health considers you low risk at 18 or below, the study considers you low risk below 11.  The study lowered to 11 to get more statistical power by including more women.

KEW 

ThereIsHope

I was just given my randomization selection related to my Oncotype Score of 18.  I had already chosen to do chemotherapy, but was hoping that I would be able to continue in the study. Had they randomized me for hormone therapy alone, I would have had to drop out.  I'm aggressive in my approach.  Now that the study has chosen chemo for me, I will be able to continue.  Just one more way to help research find answers related to this disease.  Is there anyone else involved in this test and going to receive chemotherapy and hormone therapy?  Would love to share the experience.  Karen

Anonymous

Hi

I am waiting for my results as I am enrolled in the TailorX clinical trial.  I should receive them by the end of the month.  I was told also that if it was between 11 and 25, I will be randomized for chemo.

cookiegal

thank you ladies!!!! It is so important that people do this trial.....I have a ton of respect for you!!!!!!

You are really helping women in the future in a very significant way!!!!!

calm

My oncologist thought my score would be low because my mitosis score (within grade score) isa 1 and he thinks there may be a connection. But he says there is a possibility my score could be in the intermediate area. I think this study is good for my situation since if I get a high recurrence score I will get chemo and chemo has been shown through research to be of value, if I get a low score I won't get chemo which research has shown to have little or no value and if I am in the middle I will be randomized. And,in any event I will get hormone therapy which will be the prime systemic treatment. I feel this test gives me a bit more information which I and my oncologist would not have had. I should find out in a week or so what my score is..

Raili

I just signed up for this yesterday, and did so mainly because I couldn't otherwise afford the Oncotype dx test - theTailorX Trial covers the cost of it.  My surgeon thinks I'll have a low score, but my oncologist doesn't seem as optimistic as my surgeon does. I'll drop out of the study if I'm randomized into the chemo category.

It bothers me that TailorX defines a score between 11 and 17 "intermediate risk," because that conflicts with what Genomic Health (the company that does the Oncotype dx test) says.  The Oncotype dx website clearly states: "Patients with tumors that have Recurrence Score results of less than 18 derive minimal, if any, benefit from chemotherapy."  http://www.oncotypedx.com/HealthcareProfessional/ClinicalSummary.aspx

In the TailorX Trial, half of the women with scores between 11 and 25 will be given chemo.  This means that many women who will not benefit much, or at all from chemo wil be given chemo anyway... and IMO, that's not right.  Chemo is so toxic that it's important to make sure the benefits outweigh the harms, and for someone with a score between 11 and 17, Genomic Health seems to be saying they don't.

calm

I think it is a good idea they adjusted the cut-off points. I ended up getting a score of 10 (as my oncologist predicted--he thought I'd be around 10 or 11). I would have been a bit nervous, personally,if I had got a score of say, 30 and had not been randomized to receive chemo. While their studies have shown people with low scores don't benefit from chemo and those with high scores do, I suspect they want to get more data relating to those at the margins of thoese scores. Anyway, I look forward to the day that other provinces follow suit (with ontario), because I found the information from this test to be reassuring relative to the treatment my oncologist was recommending (hormone treatment only).

KEW

The adjustment TailorX made allows them to capture more women in the study and obtain greater statistical significance with their findings.  It is not meant to imply that the Genomic Health cutoff at 18 is inappropriate.

KEW

Raili

I just received news that my Oncotype score is a 15!!  I'm thrilled with that score because Genomic Health says that women with a score below 18 do not need chemo!! 

So now I'm keeping my fingers and toes crossed that I will get randomized to the "no chemo" group of the TailorX trial and thus can continue with the study and have my information hopefully be of use to other women with BC someday.  But if I get randomized into the chemo group, I will drop out.  The creators of the test explicitly say that people with my score receive little to no benefit from chemo, so there's absolutely no reason for me to expose myself to the DANGERS of chemo, regardless of what the TailorX people say.  I trust the creators of the test more than the TailorX people.

Luah

I am not sure it's a matter of trusting one over the other (but if it were, I'd put my money with National Cancer Institute over a private corporation, but that's just me.)

The point of the scientific research is to confirm results, disprove results or extend insight into clinical decision-making... which leads into the point of the TailorX trial which, as I understand it, is to get a better picture of the grey area - there may in fact be only a little (or no) benefit from chemotherapy or the benefit could end up being more. I am not sure how the research will determine that unless patients in the grey zone stick with the trial.  Frankly, I wish I could have qualified, but unfortunately there isn't any test for triple negs.

I can only reiterate cookiegal's' comment above.   

calm

Luah. Well said and I agree. I would have been randomized and happy to do so had my score been in the intermediate zone. As it was 10, I was in the hormone only group. I was happy to have the opportunity of having the test. We have benefited tremendously from the thousands of women who have been in clinical trials before us (including those who have led to the conclusion that a low Oncotype score requires hormone therapy only and a high score chemo plus hormone therapy).

knudsmede

I am involved in the Tailor X study and had the highest score my oncologist had every seen......recurrence score of 55.  I had chemo started the very next day.  I had 2 types of cancer and a very large tumour.  Chemo was difficult but at least my chance of recurrence has been lowered to about 20% which is still very high.  As well with this study I will be followed for a number of years and therefore if there should be a recurrence it will be caught early.  It is a tough fight but every day here is a day stronger and longer life.....................try to support these studies as they help so many other women

Raili

knudsmede, I'm glad you're in the trial, and thus will be monitored closely.  Glad you got through chemo - sounds like it was quite effective!

I'm not sure how the recurrence statistics are decided upon or given meaning... Is a 20% recurrence risk considered "very high"?  My risk of recurrence (according to Oncotype) is 10%, which I have been thinking of as very low, but 20% isn't very far from 10%.  I mean, maybe it would make more sense to think of a 2% recurrence risk as "very low" and a 70% recurrence risk as "very high," and a 10-20% risk as "low/medium."  Or maybe we could take comfort in the fact that we are 80% and 90% likely to NOT have to deal with cancer again.  It is much more likely that we will live out the rest of our lives with NO cancer recurrence... I like that thought/way of framing it better.

[It's a few days later now and I'm trying to get out of the habit of merely deleting my posts that I later change my mind on, so instead i'm EDITING this post to basically take all of the above back and apologize for my ignorance!!  I really don't know much at all about the meaning of recurrance risks, what's high, what's low, what the range is, etc.  And I have no right speculating on anyone else's numbers or how they should feel about them or what they should do about them.]

hlya

I am in the trial, if any one wanna talk pls pm me.

nikola

Hi,

I am ER/PR positive and still waiting for FISH results for Her2. My surgery was May 4, so now is 9 weeks post surgery. Still have not seen my oncologist as they are waiting for that results. If I am Her2 neg. I guess I could ask oncologist for this trial. Right? I had double mastectomy and they found three cancers in my righr breast. No node involvements, no vascular involvement. Now I am glad I went that path. I had DIEP at the same time. My left breast was fine.