Herceptin WITHOUT Chemo?

Hello Brads Wife -

Your post brought a lot of memories back for me as I was in a similar stuation.  There are some other factors that also may be playing into this that were not obvious from your post.  For example, your age and your level of positivity for ER/PR receptors can also impact your decision.

Anyway... I will tell you my sordid story to see if it helps give you any additional perspective you can consider.   I had a relatively good size DCIS lump, but unfortunately a little tiny IDC portion that was 0.4 cm.    The biopsy of the 0.4 cm tumor was weakly ER positive (22%), PR negative and HIGHLY Her 2+ (10.0 as confirmed by FISH - the ICH test also said it was 3+, but it was sent out accidentally - long story).    Also, I am 43 years old and pre-menopausal.  Evidently, 43 is "young" by breast cancer standards - a rare positive I have found out of this experience.

I had two doctors that were on opposite sides of the fence on this.  One doc, because of my age and relatively low ER score and high Her 2 score wanted to throw the book at me in terms of chemo - really tough regimen.  The other one wanted to do no chemo, but interestingly did offer up Herceptin without chemo.    Of course, I latched onto that and took it back to my other doc (she was local) because I really did not want to do the chemo.    Well.. I knew that technically herceptin was not "indicated" without chemo, but since this one oncologist leaned forward on it, I thought I could go that route.    My local doc, however, hit a nerve with me when she told me "Why on earth do you want to put your heart at risk for something you don't know for sure works".   (Keeping in mind that herceptin CAN be a heart risk if not monitored closely).    Hmmmm...  That was a good point.   But, because of this other doc, I did manage to talk my local doc into a lighter chemo regimen than she originally wanted to give me.   So, basically, I did the "chemo light" in order to get herceptin.

Now... a couple of other things.   Why did I not do Oncotype DX ?    Well, with my very high Her2 score coupled with my low ER/PR score, we pretty much knew the answer already - the score would be high.   Genomic Health (the makers of the test) confirmed this for me as I wrote them on it.  The reason why is that the Oncotype test is based on a number of factors (about 22).   Her2 plays a big role in boosting up the score, and ER/PR positivity play a big role in bringing it back down.    I was on the wrong side of both those big prognistics.   So, no reason to run the test if we know the outcome.  

So.. fast forward...   I ended up doing a regimen of what I call "chemo light".   I am just finishing up my radiation course - got 8 more to go !    And have number 3 (of 18) herceptin treatments next week.   Will get those every three weeks for a year.  

In the meantime, there was a watershed study released by MD Anderson at the San Antonio Breast cancer conference in December that studied 1000 women from 1990 - 2002 with tumors of less than 1 cm.  This study had a very strong recommendation that any Her2 positive woman be "considered" for systemic treatment, specifically anti-her2 agents (i.e. herceptin) as the retroactive study showed recurrence rate to be about 3-4 times higher - regardless of tumor size.   Interestingly, there was not difference between tumors 0-.5 cm and -.5-1.0 cm in terms of recurrence risk.    This particular study broke some paradigms that exist.

The bottom line for me was in that looking at this study, I was on the wrong side of all the prognostics, which meant, for me, I had made the right choice in doing what I did - at least by the stats in this study.  You should have seen my doc thumping her chest about this when I showed her the study.  

Anyway, I will find the link for the study and post it here.  I don't want to lose this particular post by going to hunt for it now.

Take care, and I hope you find this helpful.   Please feel free to send me a Private message on this if you want additional information as well.

 Jill

Hello bradswife-

Since you and I look to have the same cancer stats I thought I'd chime in. I did not even have an Oncotype test as my Doc's (breast surgeon and Oncologist) said chemo was a given with Herceptin. Reading Jill's post was interesting to me as I was unaware of the role ER/PR played in the decision. I was 90% pos for both and had just "celebrated" a year without a period when diagnosed. I'm 53, still considered on the younger side and still considered peri menopausal even though I thought one year meant I was post menopause. So many little facts to learn!

Anyway, bottom line is that there was no discussion at all that I was going to have to do chemo with Herceptin until April and then Herceptin alone until Jan. 2010. I was devastated thinking that if I were Her neg, I could have avoided it. I've come to accept it (though chemo is no picnic) and just keep in mind that I am doing everything I can now while in the early stage to beat this. I don't know if I could do chemo with the thought that "maybe it's working." I figure it is...my Onc. gave me a 95% figure that with chemo and Herceptin, I will have a cancer free future. With those odds, I'll deal with this currently unpleasant life and pray that it will be a distant memory forever!

Best of luck to you.

Ellen

Bradswife and bwbly,

Sorry for the bad (or really good news in the long run), but chemo is recommended with this type of BC even if the tumor is small, nodes are negative and grade is low (1 out of 3).  I have been researching this extensively to verify the recommendations of the two oncos I consulted.  I have now been seeing numerous (ALL of them) studies consistently stating that the prognosis for HER2+ is basically almost as bad if you are Stage I as if you are Stage III.  The reason is that this cancer spreads EARLY.  By the time you have a tumor big enough to be detected and surgically removed, it has OFTEN spread.  If you don't have chemo plus the Herceptin, your odds are much worse.  With the two, your odds are really good.

I had only a single micrometastases to my sentinal node, which was just barely over the size (0.25 mm vs. threshold of > 0.2 mm) that qualifies for a positive node.  As a result I have looked at both the node negative and node positive studies.  Either way, this is a type of cancer that has HIGH risk for recurrence.

I don't want to scare you but rather tweak you to bite the bullet now.  This cancer CAN be killed quickly with these chemo/Herceptin combos and then it doesn't come back.  However, if the cat has gotten out of the bag and you aren't killing it now, you are talking very short lifespan.  So this is GOOD News / BAD News.  The treatments are VERY effective.  The prognosis without them is NOT GOOD.

Yours, E / Ipursuit

Hi again - just ran into another study supporting earlier point.  Here's a quote from the following presentation at SABCS this past December (2008):

• "HER 2 positivity alone confers high risk irrespective of pathological stage."

By pathological stage, they mean the standard staging of tumor size, node involvement, etc.  This study was actually trying to find out why so many of their patients (in Glasgow, Scotland) had NOT had Herceptin in addition to their chemo.  Turns out it was their age - average age was 79.  Here's the link: http://www.posters2view.com/sabcs08/viewp.php?nu=3159

Hoping this helps, But swimangel72 is right, don't trust me, see one or more additional GOOD oncologists.  You owe it to yourselves.

All the best, E / ipursuit

Dear Bradswife and bwbly,

Here's one more thing for you to ck out.  I am sorry I don't have time now to ck it for you.  It is a current trial called MINDACT that is studying this very question you pose.  In addition the report cited below talks about the use of the Mammaprint testing (like Oncotype DX only used mostly in Europe).  I think this was recently approved for use in the US.  Maybe you can ask your oncologists? 

Here is a quote from the SABCS poster (link: http://www.posters2view.com/sabcs08/viewp.php?nu=4171)

Dear Jill & ipursuit,

Thanks so much for the info/links. In doing my research, I had found about the same info .... it seems that chemo is "always" indicated with Herceptin. I too could find very little information about Herceptin alone.

In my head, I know that chemo+Herceptin is my best route, but in my heart, I sure don't want chemo. But then, who does??? I'm also very afraid because I live alone and will have to do the side effects/treatments with very minimal support.

And, I have additional very significant stressors .... my husband is dying with end-stage Huntington's Disease. He has been in a nursing home (200 miles away) for 3-1/2 years and in Hospice care for 4-1/2 years. And, no, moving him is not an option. It would kill him.

As for my job, they are very lenient, thank God. I could take disability, but I would rather not .... I'm afraid that staying home alone during chemo would be even more depressing/debilitating than trying to maintain a regular schedule/lifestyle.

I think that what I REALLY want is somebody to say you HAVE to do this. I'm tired of making such difficult decisions.

Again, thank you both ... for your responses and for letting me vent.

Bunny, League City, TX

bwbly-Other than my ER/PR status, our dx is the same. I did 4Taxotere/Cytoxan/H every 3. Now I am doing H alone for a yr. I am a Dental Hygienist. I worked thru treatments. I only took off 1 day per cycle (day 4). It isn't fun but it is doable. I would do it again if I had to. Good luck with your decision. You have so much going on in your life, I know this is very difficult. BTW, my DH was out of the country and I was also alone for a lot of this...you CAN do it!

Bunny -

I see you made your decision.  I wish you the very best.  Good luck and let us know how you are doing.  

Jill

What we do not want is to make the tough decision, and do the time (go through the ugliness of treatment), and then recur anyway. It is hard enough just doing the treatment, but please don't stop there. Two really important factors that help a lot to limit recurrence are 1) regular exercise, and 2) avoiding weight gain.

Pam,

I am extremely interested in how I'm going to feel! I start on Tuesday next week.

I have already taken vacation time for next week, since my mother will be here with me. After all, I'm only 56 and she still has to take care of me LOL.

My job wants me to take short-term disability, but I'm not really interested in doing that. I know myself .... I'll just sit at home and feel sorry for myself.

Any info you can give me will be greatly appreciated!

Hi Bunny,

I'm glad you took the week off and that your mother will there for some support.  Just the anxiety of beginning the chemo can be draining and it will help just having someone there for you I am sure. 

The first infusion you are usually given steroids in case of allergic reactions to the drugs.  I was also given Benedryl and an anti-nausea pill.  I know I became really hungry during the treatment which surprised me.  I then found out it was the meds. The pre-meds made me very sleepy and jittery at the same time.  The steroid/Benedryl combo does this I guess. I felt like I had to get up and move around which they let me do - it definately helped.  I didn't get sick or have a mentionable side efects that first week.  Like I said before, just the anxiety of it all and the reality of taking "chemo" was a tough transition for me.  

I slowly weaned off of the pre-meds after they knew there wouldn't be an allergic reaction and that helped alot! By the third and fourth week I was starting to feel the effects of the chemo.  I would get muscle aches 2-3 days after the treatment and just started tiring much easier.  

My hair started thinning about half way through and I finally just shaved my head because it looked so horrible.  What a step that was!  Reality really sunk in at that moment!  

I made sure to allow myself time to get good rest and always tried to walk each day no matter how bad I felt.  This treatment is usually well tolerated and I guess alot of gals keep working during it.  Listen to your body and don't expect too much from yourself during this time.  Keep me up to date on your progress. I'll be thinking of you!   

Had my 1st tx of Taxol/Herceptin on Tuesday. No reactions and very minor SE's ..... minor itching of head and upper torso Tuesday night and dry mouth for 2 days.

My mom was here with me (she worries, you know). She's decided I'm ok and she went home today.

I feel perfectly fine and ready to go back to work on Monday (vacation this week). 11 more tx of Taxol/Herceptin, then switch to Adriamycin and Cytoxan.

Good luck to everybody else and hope you all do as well. 

Bunny

Pam,

Thanks so much for the good thoughts! Every little bit helps, as we all know.

I don't know yet the schedule for the AC .... think I've been afraid to ask LOL. At any rate, it's still a few weeks away. I think I've decided to concentrate on what I'm getting now .... worry about the other later.

Bunny