TRIPLE POSITIVE GROUP
Comments
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Jenn,
The good news about the axilla is they left it...and the literature supports leaving it in the ABSENCE of gross disease. That means when they got in there, your other lymphs, closest to the tumor didn't lite up. (Of course there are no guarantees, but it's still only good news!) So that's a good thing
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lago asked "BTW did you guys check out this article. Why does it sound in this article that they infer the Anthracyclines are way better than the Taxanes. linky"
Did you see this article? Choosing the Best Trastuzumab-Based Adjuvant Chemotherapy Regimen: Should We Abandon Anthracyclines?
"Until more data are available, however, we encourage patients and clinicians to consider the most highly studied, highly effective adjuvant trastuzumab regimens—those that also incorporate anthracycline treatments—as the mainstay of therapy for women with higher-risk HER2-positive tumors. To date, such regimens offer the greatest chance of preventing breast cancer recurrence. Certainly, among patients at moderate to high risk of recurrence who do not have specific cardiac risk factors, the tradeoffs of efficacy and cardiotoxicity seem likely to justify the anthracycline-based treatment. For women with lower-risk HER2-positive tumors, in whom marginal differences in treatment outcome are possibly less critical, or women with clinical reasons for preferring to avoid anthracyclines, TCH is an effective and important alternative option"
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TonLee - actually I told my BS she wasn't allowed to take anymore than the sentinal nodes (and there only turned out to be one). Then she wanted to go back in and do the ANLD the next week and I still said no.
My one node was quite large (5mm) with LVI and extra-capsular extension so I still figured no point in searching for more just for the sake of searching...
Had scans the next week that looked closely at the area aand found no evidence of more disease and my other nodes have no "clinical evidence" of disease.
As I said - I am trusting the chemo, Herceptin and Tamoxifen. My doctors weren't overly happy but they've all gotten over themselves now and are happy to monitor me closely (esp BS).
Jenn0 -
Lago's link on anthracyclines just made me feel better. For months now, i kept asking myself why i wasnt offered TCH, or why a woman i know with the same dx just got 4 cycles and i got 8. I guess my onc is one of the proactive ones around. Something for my peace of mind. Now, i just hope my heart would behave.
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jackboo it was 2 months by the time all tests were done and they could schedule the surgery for me. I was told my tumor was very fast growing but it appeared it hadn't gone to the nodes (although my BS thought micromets). I too was going nuts. But most fast growing cancers don't grow that fast. I was told I had my (6-6.5cm) cancer for 4 years. Typically it's 10 years.
You most likely would have been fine waiting the month. I could have found another team but my BS has an outstanding reputation… and that's why there's a long line outside his door. If he was a little less well known that line would have been shorter.
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bcbarbie, I brought the topic of TCH vs AC/TH up to my oncologist before starting chemo in May, since my research led me to believe I'd be getting TCH. His response that he thought TCH was a reasonable option and he'd support my decision if I wanted to go in that direction, but he believes the evidence and quantity of research done still favors AC/TH. The studies supporting TCH were not large enough in his opinion. So...I had to decide...do I trust my MO or do I go get a second opinion? What if the 2nd came up with TCH? What then? I decided to trust my MO.
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It's interesting - the article that lago posted the link to comments on the increase in taxane therapy and decrease in anthracycline therapy and basically attributes that change for HER2+ to the BCIRG006 trial results that were presented in 2005 as an oral presentation at a meeting. Those results weren't published in a peer reviewed journal until last year, 2011. The authors of the linked article point out that both TCH and ACTH were statistically better than ACT for HER2+ treatment but that the study wasn't set up to compare TCH and ACTH per se. Statistically there was no significant difference in the efficacy for TCH and ACTH. ACTH showed a numerical advantage against recurrence compared to TCH but the cardiac complications were higher with ACTH.0
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I feel that the support for ACTH over TCH is because "Until more data are available" issue. That is not to say that those of us that did TCH got screwed. We just need a larger study… and it appears we all might be unwilling participants in that study.
But I still feel bc.org article says " …haven't been shown to be as good as anthracyclines for treating HER2-positive early-stage breast cancer." did not add that the Taxanes haven't really been shown to be inferior either. They just state it's an "acceptable option." To me the article is biase.
But we always knew ACTH was a little better than TCH. So IMO really nothing new here.
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I agree and that is the way my onc presented it. I think the thing that was surprising from the article was the big change in prescribing practices - the graphs are remarkable.
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The use of ACTH vs tch was a big debate between my MO and myself. I wanted ACTH and he pretty much insisted on TCH, he has never even used acth for a triple poitive! I was nervous. He was fine with me getting a second opinion ...and since I did not know where else to turn to (small town, not many MO) I decided to email Dr. Slamon with the question. I know...kind of extreme. His nurse emailed me back within an hour or so and assured me that tch is the right treatment. Nothing wrong with ACTH, but, that Dr. Slamon did not feel that it was necessary to use the anthracyclines anymore and that UCLA was not using ACTH any longer. He felt the outcome was pretty much the same, so why risk the heart.
It made me feel better...but, still wish I had been given a choice.0 -
My onc asked me what my concerns were before recommending anything. I said heart & bones. I knew I wanted TCH. All the women I know that also had my onc (including 2 stage III and one stage I) all got Taxotere. My onc also worked with Dr. Slamon and Herceptin when they were doing the trials on Stage IV. There are a couple of chapters in the book "Making of Herceptin" where they talk about her. Actually reading the book was how I found out!
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hmmmm interesting discussion on ACTH vs TCH. I had FEC-DH which is similar to the ACTH regime (the A and E are anthracyclines). I asked my MO about this and she said they do not treat without an anthracycline at her insitution. Now Im in Canada so i don't know if that factors into anything at all. I did get a second opionion at DF in Boston and they also only use ACTH but said TCH is a reasonable option -and its use is more a geographical preference
jenn only 40% made it to five years before Herceptin???? i did not know this stat yikes
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This topic is so difficult, because we all want to have confidence in our MOs and also feel that we are getting the absolute best treatment for NEVER having a recurrence. I think we should all feel comfortable right now that at least from what we know today, both regimes are good ones. Those with concerns over the cardiotoxicity can opt for TCH. The truth is...no one can say for sure which will work for us. For those of us who have already been through chemo, it's important to know that we made the best decision we could at the time, with the info presented and available to us, and make peace within.
Hugs to all. I certainly do not want a "my treatment is better than your treatment" debate to ensue.
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Lago- when I first came to this site I contacted you about my treatment and it made me feel so much better knowing all the info you shared with me:) you are so knowledgable about this topic.
I feel pretty confident in my tx most of the time until these articles start surfacing...Then I worry.
There seems to be such a division amongst MO on this topic...with no hard facts either way:(
Like you said...we might be the guinea pigs.0 -
Rozem I think that 40% statistic may is dependent on your diagnosis/stage/nodal status/# of nodes. It sounds scary but I do think Herceptin has helped at least 50% more woman survive.
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Got my path report back today from my ALND from last week. No more positive nodes! I am elated over that! But I am rather disappointed in how may nodes were taken. I just saw my primary today, will see my BS on Wenesday. But I believe primary said- including my 2 sentinel nodes removed in first surgery, he took 1st and 2nd level nodes only and it was 23 nodes total. Was told before surgery it would be no more than 15 max. Moving forward now..
Thanks for the info on the ACTH and TCH. Hopefully I'm offered a choice.0 -
I needed TCH. I started this whole thing with a pacemaker. So heart toxicity definetly came into play for me. As it is, Herceptin got me anyway. Still hoping I recover more funtion.
BTW, my onc checked my labs weekly. And actually still does, since this last heart thing he is always checking my magnesium level.
Much love.0 -
I'm very interested to read the discussion about the various chemo cocktails.
I am taking chemo pre-operatively to shrink my ginormous tumor. I am on weekly infusions of Herceptin and Taxol, and daily Tykerb. I haven't read much about Tykerb on these boards at all. Am I the only one taking this targeted therapy for my HER2 positive tumor?!?0 -
OMG I tried readin this but u all know my level of knowledge of cancer and what to do is like 0. Yes even after all this time. I have no idea what I got--except Herceptin and the red stuff, but really nothin else oh and 38 nodes with a bunch infected that's it They always tried to talk to me about everything, but I neer listened and told them they were the Drs. with reat reps. so who was I some who read Joe's hear in the Readers Diegest. So u ladies are unbelievable and have all my respect for taking charge of u'r own future. All I said was do whatever--I believe now I was the practice one and never knew it. no wonder I had yrs of chemo LOL Don't worry from now on I'll just read this post won't comment.
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Camill,
If that's what you needed to do to get through it, who are we to say different?
I meet more women with your perspective than I do with mine.
If this board has taught me anything, it is even women who research and get the benefit of others' experiences...don't always make the decision I think best for them...lol.
Seriously, no one wants to die of breast cancer. Keeping that in mind, how we each choose to go about the not-dying part has as much to do with personality as anything else.
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nickythebean Tykerb was in trials when I was being treated. I think it was recently approved for early stage. The combination you are getting is even better than what most of us got. Tykerb does have some SE (I think diarrhea is one of them) but I don't think there are any long terms to my knowledge. There is a thread about it here that I used to follow. I tried to get into the trial but they changed the requirements. Even though I was stage IIB I had no nodes so they wouldn't except me.
Camillegal the "red stuff" is the A… the one that is slightly more effective. Herceptin was approved for early stage I believe in 2006, earlier for stage IV/mets. I'm an information junkie anyway so it makes sense that I learned so much… but there is so much to learn and it's alway changing. Could drive you nuts just trying to keep up.
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mstori they never know how many nodes you have until they get in there, not sure why they told you 15. Everyone has a different number of nodes. I had only 2 sentinals and i see some ppl have 1, 3, 4. Great news that it was not in any more nodes!
nicky that is amazing that you got Tykerb with your chemo cocktail. Apparently tykerb crosses the blood-brain barrier where Herceptin does not. That is why unlike other BC, her2 positives have a higher incidence of brain mets (H does such a good job proctecting our bodies) That is exciting!
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mstori- Congrats on the clear nodes - whoo hooo!! Take your time healing, don't do too much too quickly.
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mstori - congrats on the clear nodes! So sorry they took more than you had expected, though.
Like you said, gotta just move forward! 0 -
Congrats MissTori. Clear is always good!
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Miss Tori I missed the clear nodes. Excellent! They never know how many nodes. My sentinel side my BS took 4. He wasn't happy about it but they all lit up. My level I nodes were a total of 10. The important part though was no more nodes!0
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Rozem, omaz, dance, Arlene, and Lago- Thanks All! I am soooo happy no more positive nodes. I did my happy dance when I got home! Neighbors think I'm nuts! Haha! I am elated.
I should have educated myself more- I thought he could actually count how many he was to take out. Haha! Now I understand, but my BS should never have given me a number. I think that's why I was surprised by the number.
Now to started reading about treatments. You ladies have been a blessing. I am reading all these tx threads, and learning.0 -
mstori - yay for clear nodes, that is so great! Since they remove the fatty (sorry for that word, lol!) tissue in each level, how many nodes are contained within is a mystery until they count them. Your BS may have been giving you an estimate based on the average number they usually find. I was told they were taking all levels and I only had an additional 11 nodes. We are all different.
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I know that we recently discussed the new study out by Bowles et al that showed greater than expected heart failure with Herceptin. I wasn't sure that anyone shared the editorial written about it. Not to be an alarmist, but I think one of the key points we should all pay attention to is that we should be followed closely regarding our heart health - ie. periodic echo's, even well after we are finished with Herceptin:
What does the study by Bowles at al. (6) then add to our understanding
of the association of trastuzumab with congestive heart
failure? First, the median follow-up time of 4.4 years exceeds by
1 year the median follow-up time of 3.3 years of trials reported to
date (3). The incidence of congestive heart failure appears to continue
increasing over this additional year of follow-up, and there is
no indication of a plateau. These results provide additional evidence
that heightened risk of heart failure is a long-term effect of previous trastuzumab use rather than a short-term increase associated with
current or recent use. This justifies long-term surveillance for congestive
heart failure in women who have received trastuzumab, as
well as extended follow-up of women enrolled in trials.Source: Trastuzumab and Congestive Heart Failure: What Can We Learn
BTW, just had my 3rd echo, and my EF has dropped to 52 (from 65 at baseline).
Will be discussing with onc this week. My onc actually brought up this study to me at our last visit. I asked him if he thinks I should consider stopping Herceptin early, especially since my IDC was so small. He said we'd wait until my echo came back. I have a feeling I'll be stopping. 0 -
Can I have the link to the Bowles study again. Might be something I need to discuss with onc in April when I see her again… or my NP when she calls next week. I only had the intial MUGA and that's it. Granted I don't seem to be having any issues.
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