taxol and Herceptin only for her2/neu positive

Sorry you've needed to join the group.  I would speak about your concerns with you oncologist or get a second opinion.  These days treatment is becoming very individual so you can't just go by what others have had done.  Good luck to you.

I also did 12 weekly Taxol/Herceptin.  I had a invasive tumor only .4cm IDC along with DCIS.  They found the invasive piece after my bilateral mastectomy.  I finished about 8 weeks ago.  I had a pretty hard time on the Taxol.  The first 6 weeks went ok but then neuropathy set in.  So, I think some say Taxol is "easier" but it really depends on the person.  It effects everyone differently.  My Onc is highly recommended and I also was a litttle nervous about not doing AC too.  I started a similar thread before I started in Oct 08.  There is also a good one called "mushy middle" on the IDC board that discusses this.  Good luck!

Aris -

I went through a similar situation as yourself.   In fact, I was the one that started the "mushy middle" thread referenced by Cristl above.  

While I am not an oncologist either, I do not agree with the point of view proposed by orange1 above (so, I am afraid this might just add to the derision).

The question on Herceptin's effectiveness is around chemo vs. no chemo.  The studies to date have shown that herceptin has been demonstrated to be effective in a regimen that contains chemo and different chemo regimens.   There have not been definititive studies that show herceptin works on its "own" (i.e. without chemo), although those studies are in progress.

I can only give you my thought process when I was chosing a regimen of chemo to complement the herceptin.   Basically, as I am only 43 years old, I really wanted to take the full picture into account - I am hoping to be around for decades at this point.   Would the potential longer term side effects of some of the chemo regimens (particularly in the areas of bone and heart health) be worth the documented benefit I would be getting?   As I researched the different regimens, I also landed on the Taxol/Herceptin regimen as being the one that provided me the right balance.   It provided the documented chemo "complement" to the herceptin (i.e. it was the prerequisite chemo I would have to do to get the herceptin), while potentially minimizing longer term "quality of life" risks.  

That said, indeed the 12 week Taxol/Herceptin regimen is quickly becoming the "regimen of choice" for younger (less than 50), small (less than 1 cm), Her2+ tumors - largely for the "trade off" questions I mention above and also due to the MD Anderson data that Orange1 references in her note above that shows Her2+ is a definitive recurrence risk even in small tumors.    The recommendation out of that study, however, was not a specific chemo regimen.  It was a recommendation that any Her2+ tumor be "considered" for systemic treatment, particularly anti-Her2 agents, regardless of tumor size.   The study abstract is posted on the "mushy middle" thread referenced above.    I will send you the link in a PM. 

To this end, I am seeing the weekly Taxol/Herceptin being recommended more frequently, especially after that study came out, which was only in Dec. 2008.   

I hope this was helpful.  Best of luck with your decision.  Just remember, it is a very personal choice, but in the end, it is yours.

Jill  

Pameliza -

Hi again.  I am glad the information helped you.  To clarify something - if you look at the NCCN guidelines, you will see that weekly Taxol/Herceptin is a preferred first line treatment for metastatic breast cancer.  Its "efficacy" in early stage cancer is a little more open, but I have found some things.   However, that is not that unusual.  Usually efficacy is proven first in metastatic disease before it moves to early stage.   The theory being.. if it works for more advanced cancers it should work for less advanced cancers.   I even found one study on weekly Taxol/Herceptin that quoted a civil war general with "get there firstest with the mostest"... meaning that Taxol/Hercepin weekly would provide a "continual bath" of treatment to the cells and this is one of the few regimens that will allow weekly administration.   In other words, the benefit was in the weekly exposure as opposed to the efficacy of the specific drug itself.   

That said, Ms. Flash who chimed in first was exactly right.   These days treatment options are so individualized it is easy to get caught up in what someone else did and which is better.  The truth of the matter is that everyone's trade off equation is different.  For me, longer term risks played heavily into my decision (coupled with my highly positive Her2 status).   Others may be willing to take more risks for the comfort of knowing they took the strongest regimen possible.   Both are right and neither is wrong.   In the end, it is a matter of personal choice and a very difficult decision.

I hope this helped.  But... rest easy in your decision.   Second guessing does not help.   Your doctor recommended your regimen for very good reason that he/she felt was in tune with your individual needs.

Take care.

Jill

I started the weekly Taxol/Herceptin treatments this month.  It took a lot of reading and agonizing in making the decision.  I am 40 years old.  I am very interested in hearing from others on it - Jill thanks for your posts - very informative.  So far, after 3 treatments - I am feeling great. 

Delores,

My reply to Aris was in reference to taxol + Herceptin as the only treatement.  AC followed by taxol plus herceptin is a very standard treatment for early stage breast cancer.

Pam -

I am sorry you are feeling so anxious.   But, realize there is more that goes into this than  pathology.    For example, how old are you ?   Do you have any other pre-existing health conditions?   How positive were your ER/PR scores ?   Are you pre or post menopausal?  Did you do the oncotype test ?  If so, what was the number ?

All of these play into the regimen that is recommended.   Let's take one small example... If you are highly ER/PR positive, did you know that hormone therapy (either Tamoxifen and/or AIs) can buy you as much (and sometimes more) in terms of reducing recurrence risk than the strongest chemo regimen out there?   In other words, it is just as important as the chemo for women with high ER/PR scores.  

Just from the outside looking in here, it appears to me that your oncologist is playing it more on the aggressive side given that he/she leaned forward on herceptin for a nearly equivocal score (that stuff is expensive).   I take it you are still getting the infusions every three weeks until you complete your year?    Finally, have you asked your doctor why he/she recommened the treatment course they did?   It might really put your mind at ease if you did.... AND don't leave the room until you get and answer that addresses all your questions.   

Now hang in there.   This is one time partial information or information out of context on these boards will probably drive an oncologist crazy.   Information is powerful but can also be dangerous.   But, it is your body and your right to ask.

Let us know what you find out.

Jill

P.S. If you didn't do the oncotype test, was it ever discussed with you ?  

Good morning, Pam !

Thanks for the clarification.  It is becoming a lot clearer to me in that you are dealing with what is becoming known as "survivorship".   I just realized your Dx line was 2007 and not 2008.   I belong to a local support group and there are a number of ladies there also dealing with "survivorship" - which is how to move on and live as normally as possible when so much of your life over the last year and a half has been devoted to keeping cancer at bay.   It always seems like there should be something else we could be doing.   Do you have anything like that locally you can join to connect with other ladies going through the same ?  I find my group a great source of comfort and information - plus it gives me a chance to wallow in my own self doubts for a while and be accepted for it (because we ALL do it!).   There are also some great books you can read that come to mind.  One of them is called "After Breast Cancer". 

As for me... hmm... I will be an interesting data point for your Tamoxifen discussion and yet another example of why this is not so crystal clear person to person.    OK.. first the stats.. since you were kind enough to share yours.   I was 43 at diagnosis, pre-menopausal, with a little tiny, but mean tumor.  The size is a little hard to tell because the tumor was kind of ripped apart in the biopsy.  But, it was less than a cm none the less.  I also had an extensive DCIS component.   In my case, the defining characteristic was the Her2.  The IDC was WAY Her2 positive (10.0 as confirmed by FISH), which is why the herceptin was so important to me.   Now is where it gets tricky.. the tumor was 20% ER positive and PR negative.   Because of the weak ER score, the doc essentially treated me as if I ws ER negative in terms of chemo recommendation.  (To be honest, if I had been highly ER/PR positive, I may have tried to make a case to forego chemo entirely - luckily I did not because the MD Anderson study that came out after my diagnosis would have shown that not to be too smart).

Anyway, like I said above, I landed on Taxol/Herceptin - except that my doc and I decided to do the dense dose - which is load me up every three weeks at a time with a big old dose of Taxol (it literally took 5 hours to give just the Taxol).   The reason we did this was obstensibly to shut my ovaries down - to mitigate that 20% thing.    However, it did not work.  I appear to have the most resilient ovaries on earth.  I told the doc that all I think she accomplished was pissing the "girls" off because I menstruated right through chemo and beyond.    I have to admit, the big dose of Taxol kicked my butt pretty good when I got it.   But, now I am on the Herceptin alone.  I will be done around next January or so.

So, here is the current dilmemma that I am fussing with my doc on.   Given my low level of positive ER receptors, I am strongly resisting going on the Tamoxifen.  I am back to the same question as to whether the potential long term risks and the short term side effects are worth the benefit I will be getting due relatively low ER score.   Theoretically, anything over 5-10% ER positive shows a benefit, but that is in the absence of all the other stuff I have already done (chemo, radiation) and am doing (herceptin).    This question has no clinical guidance that I can see - something that even my doc acknowledges.   The best she could give me was that going on Tamoxifen should prevent a "different" tumor that may be ER/PR positive from arising.  I must have had a look on my face like "don't even go there" because she busted out laughing.    The bottom line is that I think even she is thinking I have a point on this one.  

That said, if I were highly ER/PR positive (which is why I asked about the scores), this would be  a no brainer.   The stats clearly show hormone therapy to be incredibly beneficial to those who are highly ER/PR positive.  I just don't happen to be one of them.  That is why I think I would ask my doc if I were you to understand what hormone therapy buys you in terms of recurrence risk and determine whether it is worth it to you.  3-5% reduction sounds a bit low to me vs. what I have seen modeled for women who were highly ER/PR positive.

Anyway.. I bet you are sorry you asked now.   But, that is the sordid tale.  Thanks for asking.

Jill   

P.S. If you are wondering why I did not do Oncotype, it was because we knew the answer already - it would be high - something Genomic Health (makers of the test) confirmed for me.  With a Her2 score that high (which drives the score up) and ER/PR scores so low (positive scores would have driven the Oncotype score down) - we had a strong likelihood of it being very high based on their algorithm.   No reason to run the test if you know the outcome. 

Hi CrisitiC

You might want to put this question out on the Hormonal Therapy forum and the Young Women with Breast Cancer forum.  Either of these may offer some insight.

Also, since your case isn't totally straight forward, you may want to consider a second opinion.

jackie