< 5 mm HER2+ IDC...why NOT chemo???

Also, the dose dense herceptin side effects have bothered me more than anything. They started it at a 30 minute infusion and lengthened it to 90 minutes which helped. He also said I could come in once a week and get it since I tolerated that well during chemo, but I just couldn't start going there weekly for 9 more months, so I have just stuck it out. I have some queasiness off and onfor a couple days after infusion, some intestinal issues, and am really tired. Not sleepy, just worn out.



Dancetrancer, you will get an echo every three months to monitor your LVEF, as herceptin can case issues. Mine started at 60-65, dropped to 50-55 and has held. Still normal, but on the low end.



The only neuropathy I think I might have is that my hands get cold easily. While on chemo, my hands and feet were like ice and my husband would put two hot water bottles in bed at my feet at night...so that I wouldn't stick my freezing toes on him! I had, and still have some joint pain, but it is mild and probably tamoxifen related now.

susie...Yahoo!!!!!

Dancetrancer - I definitley had no "C" drugs.  Looks like Fluffqueen had the same treatment as me, so you can see it is being used out there.  As of Dec 2010 (things change so quickly in the BC treatment world) it was still a rather new idea to do Taxol and Herceptin only.  I was offered TCH also if I felt more comfortable going with something "tried and true." 

Fluffqueen01 - Yeah I was trying to get so much info in - taxol can be given every 3 weeks like you say.  Its just more even and a lower dose each time (hopefully leading to less bad reactions and less neuropathy) to do it once a week.  I know I was told that taxotere on the other hand, works differently on the cells so even though it is related to taxol, it is usually the one given with other chemo drugs in the three week cycles.  As for your hair, I hope it's herceptin because you'll be done soon.  It could, however, be the tamoxifen.  I don't know when you finished taxol, but I had very thick and curly hair (only a bit wavy before) 7 months after last taxol.  The last area to fill in was at the temples and my part (when I can find it in the curls) starts at least an inch further back than it used to.

And the curls -- I had wavy hair before so it would hold a curl if I rolled it damp.  Now, well, my MO calls me Shirley Temple.  Some people have told me the curls will grow out and I'll have my old hair back but it has been growing in for 10 months now and is as curly as ever.  It's easier to take care of.  

Send some of those curls my way please! I had natural curly hair pre-chemo and it came back very straight. It's hard knowing what to do with straight hair when you've always had curly and vice versa. I liked that I could wear my curly hair very short and it would go into something that looked like a "style" with a quick brushing. Other than that I have no complaints about the returned hair. It grows now at normal rate (Herceptin did seem to slow it down some or perhaps it just takes a while to get going at full speed after chemo) and if anything I seem to have less gray than before.

Back on topic, for <1cm or even all Stage I, a "kinder and gentler regimen" makes a lot of sense to me. It would be a better trade off of risk vs gain for tumors where recurrence risk was lower. Maybe Herceptin alone or with Taxol or maybe the 4 cycle Taxol or Taxotere with Cytoxan.

For someone like DanceTracer, if it was just Herceptin, it might not be necessary to wait to start rads since they do rads and Herceptin at the same time.

I can add one thing that my MO said that may make you feel better about no chemo.  With such a small tumor it is hard to do all of the testing necessary.  You run out of tumor (which is why most trials are done on larger tumors.)  Her 2 neu is on the outside of the cells.  DCIS is usually (I think he said usually) strongly Her2 positive.  Sometimes if the small tumor is next to the DCIS (my tumor was like a cherry on top of a DCIS) the tumor may test as being Her2 positive but its actually reading the DCIS Her2.  It is really hard to test small tumors accurately and you said you had 4 path reviews plus a FISH.   You probably have run out of tumor.  You probably will be far more responsive to hormone therapy than me, you have less breast tissue for a recurrence, and radiation really does a good job cleaning things up.  I believe the newest studies suggest radiation is even more effective than they thought.  Good luck.

Doctors are still very much caught in the middle on this question because the research hasn't been done. We want definite answers and there still are none either way. The information we have now to work with is not balanced, because most of it is about the results of trials using chemotherapy. One can read five, ten or more articles about the value of chemotherapy and psychologically since there are so few in comparison about no chemotherapy for it that the impression one has becomes overwhelmingly in favor of more therapy because certainty feels better than uncertainty.

The only new info we have is that the use of neoadjuvant trastuzumab, and neoadjuvant trastuzumab and lapatinib, are showing good results as single therapy for HER2 positive patients. The trial for use of trastuzumab alone for patients who are the most likely to be postmenopausal (over age 70) is in progress but it will be a while before we have info from it, and even then it would be about postmenopausal use.

In terms of insurance coverage for trastuzumab, there are others who have done trastuzumab alone in this situation and it would make sense to make inquiry about that rather than working on pure assumption. Doctors offer the standard of care, which is uncertain here, and some patients have had to refuse the chemotherapy in order to get authorization for the trastuzumab alone.

The advantage at this point in time for someone with early stage bc would be primarily one of time, in that a diagnosis of very early stage bc may allow more of a window of time for more definite information to develop and for newer treatment regimens to be offered. It also has to be said that doing the maximum treatment at this point has its minor disadvantages, as well as no absolute garantee that it will work. Perspective is very individual as to what choice makes real sense. At the time I was diagnosed, the alternative of trastuzumab was not available to me with or without chemotherapy because the trials had not been completed (although had I known about it, I probably could have received it "off-label").

I firmly believe that in this situation, patients should be encouraged to do what they feel comfortable with doing, in either direction. And I believe that is what doctors are trying to offer. They offer standard of care, usually chemotherapy plus trastuzumab. If it is refused, they recognize that trastuzumab at the very least has some activity, and can be combined with other medications.

A.A.

dancetrancer-not sure if this was brought up or not, but since it has been a few months since your surgery, is it too late for chemo? isn't there a window of opportunity?  I have been thinking a lot about your situation and just wondering if this was discussed.

Regarding hair....I had fairly thin, fine, straight hair before chemo. You can see it in the picture. I was hoping so badly for curls, but no.....the back and sides have some wave but are generally straight. The thickness doesn't feel too bad, but on the top scalp, it is very thin and stick straight. So bummed I didnt get curls.



Dancetrancer...the taxol/herceptin combo is fairly common in Europe, I believe. Taxol is also a recommended chemo for metastized BC. It is a little off label this way. I try to tell everyone with small turmors to ask about it as it was very manageable.

Dancetrancer...I am SO impressed with your leaving no stone unturned in your effort to find an answer!  Perhaps you would like to change your name to "VoraciousReader II."   

I also want to remind you once again, if it makes you feel any better, unfortunately, there are many women who, for one reason or another, fall into the abysmal "gray area" for treating their tumors.  Many women with ER+ tumors who have intermediate OncotypeDX scores are in the "gray area."  People who have rare tumors, like mine, where there is little research on treatment, fall into the "gray area."  It's really a tough call to make when there isn't crystal clear evidence guiding you....I wish you and all the other sisters who fall into THE.GRAY.AREA...well.  I really think what it all comes down to is how risk adverse you are, and how well your general health is.  I also think you need not only to trust yourself, but find an MO's whose judgement you trust and guides you. That will, IMHO, bring you out of the "gray area." 

Hi Dancer:
It's Lilli from FGP. I've been following your threads here. It's been a major learning experience. So appreciate the research you and the other members have done.

What I find puzzling is why the docs at Emory ran the HER2/neu in the first place when they knew in advance, in the event it came back positive, they wouldn't alter your treatment plan?

I think your observation about the NCI Centers strictly following NCCN guidelines is a good one. It was the first thought that occurred to me yesterday after hearing your onc at Emory sent you back to UAB telling you NO Herceptin/chemo.

The fact that other ladies with your Dx have received treatment should be encouraging though. Apparently, there are docs willing to Rx off-label. It may just be a matter of finding one.
Lilli

Dancetrancer, here is a previously posted summary of what my oncologist said at our initial consultation - maybe something here will be helpful.

1.  HER2+ is dispositive.  You have it, you get adjuvant therapy.  She didn't out and out say that (see below) but that was my takeaway.  I raised the 1-5, 5-10 mm treatment issue, throwing around numbers on the distinction, secretly hoping to trick her later by pointing out the 6mm couldn't possibly be 6mm of HER+, and, therefore, I was on the lower end such that chemo is unwarrented. "Yes," she said, "that was our study." Well shit -- that was my the centerpiece of my argument.  Unlikely that I can use it to successfully undermine her recommendation. 

2.  My tumor is scattershot -- the ER/PR+/HER2- bits are laid back, pot smoking, sunset loving, Bruce fans who might get around to checking out the surrounding territory someday, while the ER-PR-HER2+ bits are weaponizing to take over hostile contiguous countries.  We didn't talk about the DCIS.  

3.  Breast cancers are like that -- a bit of this, a bit of that.  The pathology reports reflect the distinct characteristics that amount to action items. My pathologist communicated that he didn't like the weaponizing bits AT ALL by phrasing things a certain way -- I'm a student of words and I had to agree as the word choice and level of detail struck me as odd (seeing as how I have SO MUCH experience with pathology reports.)  "Why are there so many 'negative, unfavorable, suboptimal, FISH Panel prognosis: unfavorable" comments?  She knows the pathologist and said he was making it clear he doesn't like the look of it.  

4. My invasive component is 6 mm, some of which is the laid back bit and some of which is that weaponizing kind.  Both kinds were added together to reach the 6 mm number, although I don't think it is nearly that simple.  There is no way to break that down to what percentage is what, and if there was she wouldn't trust it and would recommend adjuvant therapy because of the HER2+.  (You will start to see a theme here.)

5.  With my profile, my risk of recurrence is 15-20%.  In general, the risk of recurrence is 10-15%.  I'm not sure why mine was pegged higher.  

6.   Adjuvant treatment reduces my risk of recurrence to zero (seriuosly, she said that). The chemo dials down the reactivity such that the Herceptin can kill the cells.   

7.  She recommends TC (Carboplatin), 4 infusions every three weeks, and Herceptin 1x/week for six weeks then monthly to complete one year. Because Herceptin is an antibody protein, she likes to get the blood level up quickly hence the 1x/week for 6 weeks regimen -- don't you just love the way I said that like I know what it means?  I hadn't seen the 1x/week for six weeks protocol before.  

8.  Neulasta is given the day after each TCH infusion.  Bone pain is generally felt only after the first one and can be handled with Advil. No mention of Claritin and I forgot to ask. Overweight women are more likely to experience bone pain. 

9.  Side effects:  

a.  Nausea is licked.  If drug A doesn't work, drug B will.  Drugs are taken on a preventative basis. 

b.  The short treatment period puts my risk of neuropathy, eye problems, and finger/toe problems at zero.  

c.  Fatigue:  week one, 75%, week two 85%, week three 90%/normal, then back down with the next treatment.  The best antidote is to exercise -- I think exercise cures pretty much everything so no need to sell me.  

d.  Cold caps work.  Like for real.  They have a cold cap "Angel" who spreads the word and and helps women use them properly.  

10.  I need not be concerned about cardiac issues.  The statistics are international so the level of care is uneven, and overweight women are more likely to experience a decrease in function which rights itself when treatment is over.  

11.  The ER+ bits, she placed at 3-4 mm (do the math -- I'm down to 2-3 mm of HER+, added to together), but size didn't really matter as her recommendations would be the same:  Tamoxifin for two years then the one that starts with an A for three, reducing my 5% risk of recurrence to zero.  That treatment will also reduce the risk of a new cancer on my right breast.

12.  I asked whether the TCH would wipe out any cancer that is my right breast.  She did answer me, but I have no idea what she said.  

13.  Oncotype scores are for ER+ borderline cases where chemo is a question mark, but HER2+ calls for adjuvant therapy (remember that theme?) so scoring isn't relevant.

14.  Cytoxan is not FDA approved for TCH and there isn't much SE difference between it and carboplatin.  I'm skeptical about that, but I think that adherence to protocol in the absence of a compelling reason to deviate is one of the prices paid for being treated by a national name.  

15.  It is acceptable to wait 84 days after surgery to begin treatment.  I have no idea why they came up with that totally random number.  

16.  Lymphovascular invasion didn't matter to her as the tumor is HER2+ so adjuvant therapy is appropriate in any event (that theme again....)

17.  The weaponizing HER+ part of the cancer is ER/PR- so hormonal therapy is not helpful.   

18.  There have not been any trials for Herceptin only.  She said that after Herceptin was approved, the researchers at MD Anderson went back to study the outcome in small HER2+ tumors that did not receive adjuvant therapy and were shocked at the high rate of recurrence.  It had already been established that treating women with HER2+ tumors greater than 1 cm with chemo plus Herceptin resulted in markedly lower rates of recurrence, so that protocol was adopted for smaller tumors where adjuvant therapy is recommended. WIth chemo + Herceptin, the risk of recurrence with small HER2+ tumors dropped from 10-15% to near zero. 

Don't know how to fix the text so it is all plain -- I'm not trying to emphasize or deemphasize the last few items!