I,m still curious about "AC"?

[Chelee]

I know I just posted a few days ago or so wondering WHY my oncologist decided NOT to give me at least 4 tx or AC with my highly aggresive cancer? ( I do know the high risk for heart toxcity..so I do take that into consideration.) I am Stage IIIA, Her2/Neu 3+++, Er & Pr positive, 5 of 16 positive nodes, 9 of 9 on Bloom Richardson score 9 of 9, high nuclear grade. I had a modified racical mastectomy of right breast & got clean margins.


My orignal DX was Dec. 20th, 05. By the time I got shuffled off to the "newest" oncologist in that cancer center...it was a nightmare. He had only two years under his belt at treating patients. Sorry...but with my highly aggressive cancer...I want someone that has seen it all & knows what works and what doesn't. (of course there are never any guarantees)

But the post I wrote the other day was asking why did this new oncologist i get start me on Herceptin, Taxotere & carbpotin...with weekly herceptin. (I don't have a problem with those at all...I just wonder WHY I did NOT have at least the four AC tx FIRST like what seems EVERY else did..and many of them had stage I or II with no node involvment. (thank goodness.) Some of the other women even got dense dose.

One women on here Jen was nice enough to direct me to a link showing me a study on herceptin, taxotere & Carbpotin. It did ease my mine a bit. But I still can't help bit notice everyone with close to m DX or less...all had AC FIRST.

In fact I just read the NEW TOPIC that was kind of fun to od. Where we all state the date we found out lump, DX, treatment, chemo, etc. I just read ALL 54 replies...and out of those 54 anwsers...39 of them ALL had AC...regardless of what stage they were. I am removing myself from the count since I didn't get any AC and posted this topic. The other 14 MIGHT OF had AC.... but some just forgot to mention what exact chemo they had.

So now that thread makes me wonder why again I was NOT treated with if "first since it does seem to work better then others. Again...my biggest concern is heart issues..especially since tx plan is to continue leaving me on herceptin barring no un-forseen problems that may pop up. I just was told from day one they wanted to treat me aggressively and have NO inturruptions. But its been anyyhing but that!

I just asked my NEW oncologist WHEN will we check my tumor makers that I hear so much about? She said "The standard of care is to check once your DONE with your chem".

HELLO PEOPLE...does that even sound right to any of you? I hear everyone hear and on other boards talk about what their tumor makers are....like itsa a regular thing??? (Maybe I a WRONG) She flat out told me they really DON't like to go by those...they don't mean much and don't read right most of the time.

(Well...I WANT TO KNOW WHEN and IF my chemo is working for me...is that too much to ask?) It must be...because I am not getting very far with aswsers like that. I would THINK they would WANT to check the tumor makers and SEE if they are working...that way if they WEREN'T....they could change the meds arouned some until something does.

(Sorry people...don't mind me....I am still so new to all this and have had to learn everything pretty much on my own from the helps of people lilke you women) Thank God for this board and other wonfderful people so willing to give up their vauable time to help us out. I know I for one.... REALLY APPRECIATE it more then anyone would know. (I apologize for such a long drawn out post....some may of NOT BOTHERED TO READ IT...I don't blame them.) LOL


Thanks to those that did make it through this.

[Lauriemn]

Hi Chelee, tumor markers can be very unreliable. You can have mets and have normal numbers and your markers can be high even if you don't have mets. there are alot of oncs who don't even use them or will only use them for stage 4. When I asked my onc how we were going to know if the chemo is working, he said we wouldn't. He said if the cancer came back, we know it didn't work.

In regard to AC, I think I remember seeing somewhere that er/pr+ cancers don't respond as well to chemo. I am sure someone with more knowledge on this will respond and let us know if that is true. Your onc may have felt that getting you on herceptin and letting you stay on herceptin indefinitely, and not risk heart problems associated with ac, especially with your family history and if you told him you were worried about heart problems, would be your best solution.

think about if you would have done ac, had heart problems and could not have done herceptin. I think your chance of recurrance would be much higher than what it is now with the current treatment you are on now.

Good Luck! Laurie

[juanita]

Is it possible for you to get a second opinion? Or to switch oncs? You have the right to get answers to all of your questions, in a language that you understand. I had problems with that with the first onc I had. So I switched.

[saleboat]

Chelee,

Oh no, the worries have you, don't they? We've all been there.

There is ONE very simple reason for why you did not have A/C. Your Onc, based on the NEW evidence that was presented (I sent you the link) believed that Carbo/Taxol/Herceptin would be the BEST treatment for you-- ie-- that this regimen would give results similar to the one with A/C WITHOUT any of the risks of heart damage. I predict that in the future, the chemo that you received will be the standard of care for many women. I know you don't like the fact that your Onc was a little wet behind the ears, but this probably led him to be more comfortable with the cutting-edge treatment that you received.

In other words, the reason that you see so many women on these boards who received A/C is that they, for the most part, were diagnosed before you. A/C is the chemo that most Oncs are familiar with (for early stage disease), and the first Herceptin studies for early-stage disease used this chemo. The second big Herceptin study (the link that I sent you) put the A/C chemo vs. your regimen head to head-- and found NO statistical differences between the outcomes.

ALL of these results need more time in order for the researchers to have a great deal of confidence in them, but so far, things look encouraging.

We all have our worries, and as I mentioned before, I was OBSESSED with why I did not receive Carbo as part of my treatment. Absolutely obsessed.

I hope you can find some peace.

As for tumor markers, I will not have these done until I'm finished with Herceptin-- that is the 'standard of care' at my treatment center for early-stage bc. What your new Onc said sounds exactly like what my Onc would say.

This disease can drive a person crazy and we all have to learn to live with a lot of unknowns. It isn't easy.

Deep breath,
Jen

[kat in the delta]

I read that Carpotin is less toxic to the heart than Adriamycin. Maybe that is why. Look on Medlineplus.gov and check it out.
kat in the delta

[Christine MH-UK]

Hi Chelee,

As Saleboat has pointed out, at study at San Antonio in December found that the AC->taxol+herceptin-> rest of year of herceptin was not significantly better than HCT->rest of year of herceptin. Dr Slamon, herceptin's discover and the person who conducted the HCT study stated that he felt that herceptin should not be used close to anthracyclines unless patients had tested positive for topo II, which makes cancers sensitive to anthracyclines, since only 1/3 of her2+++ patients on his trial had this trait. One of the things he pointed out is that although the patients on the AC combination who developed congestive heart failure improved after herceptin was stopped, their hearts did not recover fully and many showed some serious, possibly permanent damage as much as 18 months later. Slamon made clear that he thought that people had generally underestimated the risks of anthracyclines before herceptin, assuming that the heart damage fully reversed itself if herceptin was stopped. Other oncologists, however, have been much more reluctant to drop anthracyclines for her2 patients, because AC tends to work so well in general.

It might be a good idea to check out your TOPOII status before asking for anthracyclines. Also, if you really want to get AC, it might be better leaving it to the end of your treatment, since the one trial, Finher, where no heart damage was found used an anthracycline (epirubicin, which tends to be a bit more heart-friendly anyway) only after herceptin. An accompanying article in the New England Journal of Medicine explained that anthracyclines can cause the heart to give out signals that make herceptin more damaging to the heart, which is why giving herceptin-based chemo before anthracyclines may be less problematic.

It will be interesting to see what is said about herceptin and the heart at ASCO this year, which should be coming up in the next few weeks.

Best wishes,

Christine

[Becky]

An anthracyline like adriamycin or epirubicin had always been used for all Her2+ women in the past because studies had shown there was better survival in Her2+ women if one was used. What they didn't know was that 50% of Her2+ women are also Top 2A positive as well. Top 2A overexpressed responds extremely well to an anthracyline chemo agent. So well in fact that Dr. Slahom has stated that a Her2+ woman should be tested for Top 2A and if positive, would only need AC or EC treatment and no Herceptin (regardless of node status). Otherwise, it would be best to use Carboplatin/Taxol (or Taxotere)/Herceptin. Either of these would be easier on the heart than what they do now.


The Top 2A finding and an easier to find lab test is a very relatively new finding. Secondly, until 10 months ago, an early stage Her2+ woman could not secure Herceptin. Because of that, it was prudent to have adriamycin or epirubicin because it is effective for Her2+ disease.

However, the trial results show that carbo/taxol/herceptin does reduce recurrence rate by 39% over AC followed by T without added Herceptin. None of this is dense dose. With AC followed by TH, the reduction is 52% - really not much of a difference but is probably explained by the Top 2A factor.

If you are concerned, you can take Christine's excellent suggestion and get Top 2A tested. If you are overexpressed. You can finish your current rounds and stop Herceptin and take adriamycin instead.

Otherwise, the treatment you are on is totally appropriate and Herceptin is a life saving drug.

Kindest regards

Becky

[G. Ann]

Hi Chelee,

A second opinion might ease your concern and can be helpful. Sometimes when you go outside of your medical group you need to pay out of pocket though. There are so many variables so it's hard to compare. I also read the recent study about ER+/PR+ and the new thought that AC is not needed or as effective as once believed. You did have radiation and that's a plus. Medical strategies change so quickly and it seems oncologists differ in their treatment programs. Maybe you're on the cutting edge of what is appropriate care in 2006 compared to others who were diagnosed several years ago. I think most of us are never 100% positive our treatments are effective. Keep asking questions.
G.Ann

[Cathya]

Hi;

I have 4 AC and 4 Taxol. I know there is the question of whether AC is effective with ER+ tumors. I had an inoperable tumor in my clavicular node which you could feel and it disappeared with the AC.....so I am confident that the chemo was effective. Just fyi.

Cathy