TRIPLE POSITIVE GROUP
Comments
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bryona my onc worked with Dr. Slamon to bring Herceptin to market so she too seems to recommend TCH. There are plenty of women that do the AC-TH though. There are risks with both. I wouldn't be shy about asking an onc why the recommend one over the other. My onc asked me right up front what my concerns were. I said my heart and my bones.
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Bryona-I interviewed three oncologists. One wanted six cycles of adriamycin with all the rest of the stuff. Two (one doc a major university onc who only does breast cancer and the other connected to a hospital here and follows international protocols closely) said taxol, twelve rounds weekly and herceptin. They felt adriamycin was overkill. So, I figured two out of three was good enough for me. I chose the one connected to the hospital as it was a smaller office, very personal, and very close to my house. I never got the suggestion of the other option, but from what I have read, taxol alone is used more in Europe as the chemo agent. Fingers crossed.
Please, please do not let my periods come back. There should be at least one thing I don't have to deal with again. I was having regular periods at 55 when diagnosed. Chemo threw me into menopause. So far, still there. Hot flashes awful.
Rozem, I have large fibroids. My first day when having periods were awful. A pad an hour easily and huge clots. So gross. Hope things are going better. Gyn mentioned hysto several years ago, but I thought that since it wasnt bothering me too much, no need to stir the pot. Now he is doing a vaginal ultrasound every six months to monitor. Doesn't want to do surgery unless necessary. Says I have been through enough surgeries for awhile.
Regarding follow-ups, I still see my onc every three months. I suspect that may change at my next appointment. Haven't seen BS since last march. I am going to call to make sure I don't need to see her. I see the ps again in January and I suspect he will cut me loose to a year unless I have him touch up my tattoos. I was going to have vinnie Myers finish them, but they look pretty decent and I am kind of over it all.0 -
Mine didn't give me a choice either - TCH all the way - but because of my stage he wanted me on the herceptin ASAP, I don't think that my MO uses AC-TH very often if at all. He was in research before going into practice, and is always up on the latest and greatest. My onc also mentioned that he didn't like to use adriamycin because of the cardiotoxicity with herceptin, and felt any benefit wasn't enough to justify the risk.
I do know a couple of women that have gotten AC-TH (not at my center) but they were younger, not sure if that makes a difference or not. I was 54 and in good health at the time of diagnosis (except for the cancer of course
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welcome bryona - the ladies have all given you great advice/info on the ACT-H vs TCH. I think in studies there is a 2% efficacy difference btw the 2 regimes (ACT-H being slightly higher) - very small. I would certainly discuss this with your onc and ask why he/she is recommending this for you. Like SK said there is a regional difference, Im in canada and they favor FEC-DH (similar to ACT-H) i found out about the TCH regime from here - no one mentioned to me when diagnosed. Like shore1 i found the FEC (anthracycline) portion pretty bad
update: my bleeding has tapered off today, still heavy but not the gush (sorry TMI) of yesterday...tried calling my onc but of course NOONE is around this week. I have no idea why they didn't do an ultrasound but i am not going back to emerg, public healthcare means a minimum 8 hr wait
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Thanks for the information, everyone. I think my problem is that I really don't want AC-TH, and not just because of the risks of Adriamycin. The MO who recommended AC-TH was an unmitigated horror, and I want to say no to that just to spite him! It makes me worry that I'll make the wrong decision for the wrong reasons.
I do love my new onc. I just wish I could see her sooner so that I'd stop tormenting myself about this. It's a terrible habit. Feel free to tell me to stop obsessing and to do something productive. That's what I tell other people, but I never listen to me...
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bryona - this is our lives so yes we will obsess!!!!! have a good discussion with your onc, I am no doctor but if you feel strongly about TCH i think this would be absolutely fine especially in your case - early stage, node negative. Tons of women have TCH
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Hi Ladies,
Lumpectomy, sentinel node dissection, and port placement tomorrow at noon. I have nose drainage causing me a sore throat and I'm scared they won't do the surgery. I think I just have allergies but I have been around sick people thru the holidays so I'm nursing myself with warm tea and lemon.
Glad to hear that your ok Rozem.
I'm ready to fight this cancer in 2013 and keep praying for a cure ( I know everyone else is too).0 -
rhonda - good luck tomorrow - the lumpectomy was the easiest part of this entire deal for me - you will breeze through it.
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Bryona - have you considered finding a different MO? I think it was very helpful to have a MO that I felt comfortable with, had good rapport, was knowledgeable but listened - I never felt like any question was too stupid, he'd listen, think about my concerns and if he didn't have an answer right then would research and get back to me - I can't imagine going throught this with a doctor that I didn't have this kind of relationship with.
And I still believe that TCH was the right protocol for me.
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Rhonda, good luck tomorrow. I hope it's just allergies, and that everything goes according to plan.
Linda, the MO I'm meeting with in Jan. is wonderful. She's really smart, always up on the research, and actually respects her patients enough to listen. She also faced bc herself 5 years ago (oh, irony), which I find weirdly comforting.
Believe me, I'm never going back to the first guy again, and I've complained about him in great detail to my PCP. She spoke to him and put it down to a misunderstanding; my position is there's only ever going to be misunderstanding when a doctor doesn't listen to anything a patient says. Anyway, I'm not sure that him trying to force me to begin 6x DD AC + 4x DD TH one week after my initial dx, and with NO tests other than initial mammo/US/biopsy, can be labeled "a misunderstanding." He was just a bully, and he was wrong.
And now I'm going to stop venting about him. Onward and upward!
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Thanks for letting me know you have a new onc Bryona - Yippeee for good doctors that listen and are willing to learn from their patients.
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Bryona, I'm officially diagnosed as obsessive compulsive so, unfortunately, me telling you to stop obsessing would be like me telling you to stop breathing
. That said, I agree with Rozem: "this is our lives so, yes, we obsess!" Re: TCH vs. AC-TH, my MO (who is also Relda's MO - another triple positive who posts here) said that it's an East Coast/West Coast rivalry thing kind of like the USC/UCLA football rivalry here in Southern California. Apparently, AC-TH was firmly established at Memorial Sloan-Kettering and the TCH protocol was established here at UCLA. His recommendation for me, thus far, is TCH (taxotere, carboplatin, Herceptin). From what I understand, I've had one loading dose of Herceptin thus far (I know I've had one dose of it and I'm pretty sure it was a loading dose).
Re: it being a "misunderstanding" with this other oncologist you met with - I found during my husband's illness that there appears to be this "thing" between doctors and part of this thing is that they get very uncomfortable when you complain about one of their own. I had to more or less fire (for lack of a better word) my husband's gastroenterologist midstream during his illness. It had been the gastroenterologist who actually finally diagnosed what was wrong with my husband and I will forever be grateful for that but he turned out to be a very rude and uncaring physician and he treated my husband's father so rudely that my father-in-law refused to be in the same room with him. We let that go until one day when DH was so ill that it was clear his condition was rapidly declining and the nurses at the nurses' station were too afraid to call the gastroenterologist. Mind you, this was in the middle of a weekday afternoon - it was not on a weekend or during the middle of the night. My husband, who was and is a real trooper, was doubled over in pain and the nurses were paralyzed with fear over calling this guy. That did it. I started asking around about other gastroenterologists and arranged for him to be seen by one who ended up being an excellent choice.
Well, the lead doctor on his case (a rheumatologist who had been recommended by this gastroenterologist) was very freaked out by my (our) decision to bring on this other doctor, as was my husband's brand new general practitioner. I think the word "misunderstanding" was bandied about during all that as well but I stood firm and said "he is no longer my husband's physician, sorry. Either you can tell him your way or I will tell him my way." Ultimately, they decided to tell him.
If it hadn't been for our experience with this gastroenterologist I probably wouldn't have been as picky as I was about the physicians I've chosen during my own illness. I learned some very valuable lessons during that time and researching physicians was one of those lessons. It's not easy to do because oftentimes we get stuck in this referral trap or sometimes these choices are dictated by our insurance coverage. I ran into a bit of a problem midstream with my breast surgeon (who I love dearly) and his initial choice/referral of plastic surgeons. Fortunately, it all ended up okay but it was definitely one of the little bumps along the road in this journey. Heh. I should probably add a version of this part of my post to TonLee's "things I wish I had known" thread (I might do just that tomorrow but right now it's 1:46 a.m. and I can't sleep because I'm obsessing about a scan tomorrow...).
So, all that said - (imo) it is okay to obsess when it comes to getting this doctor thing right. I view the medical oncologist as one of the most important pieces of this cancer puzzle and the story on how I got into mine (his practice has been closed for years) is yet another tale of being obsessive and once again, relates back to that undesirable experience my husband had (in that I didn't want anything like that to happen during my cancer experience).
Sorry to write a book but just wanted to stress how important I think the doctor/patient relationship is in all this. This is not a bunion or a dislocated elbow. It is cancer and it's something we all will be dealing with in one way or the other for many years to come. Even when it's kept at bay, there are follow-ups - in fact, during my initial visit with my MO I had the pleasure of meeting a Her2+ survivor who was there for her five-year follow-up visit.
Rhonda, good luck tomorrow. I think it's great you're having your port placement during your initial surgery. My port placement was this past Friday and I've had some kind of annoying nose drainage/throat thing since then (I think it's because they had to place a tube in my right nostril after surgery due to a breathing issue). OTOH, I'm in California, too, so maybe there's something going around and I picked it up in the hospital. Anyway, excellent news that you're getting everything done at once tomorrow so you can recover from it all at once. My thoracic surgeon said these ports are good for 10,000 sticks! Pretty amazing little doodads (have you seen one? He had one laying on his desk when I went in for the consult last week).
rozem, I'm so happy to hear the bleeding has abated somewhat! I only had a short period of time with those heavy fibroid induced periods but I recall it being pretty stressful because I had never had heavy periods up until that point in my early forties.
fluffqueen, regular periods at 55? I bet you were glad to see them finally go away! Now I'm wondering if I'll end up with hot flashes again when it's time to start the AIs. I never thought the hot flashes were all that bad during menopause but perhaps I didn't go through menopause "completely" enough (considering the level of estrogen receptors present on my tumor). I think my last hormone test showed zero estrogen but estradiol present. Hmmm. I just googled estradiol and breast cancer and saw this:
Estradiol may exacerbate tumor growth in breast cancer
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ashla, I read that you're leaving NY for three months. I hope you'll still be checking in. I always like reading your posts. Moreover, I hope you're headed somewhere warmer. My in-laws live in Dutchess County and I know how cold it gets there in the winter. Brrrrrrrr (but then again, I was freezing when we went to the beach the other day and it was 63 degrees and there were kids in the ocean - I couldn't believe it - and without wetsuits!). Anyway, safe travels! Also, ditto to you and everyone else on the New Year's wishes! I don't think I've ever been one to say I'll be happy to see a year go by but I'm ready to see 2012 turn over into 2013!
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Here is a link to an artical on AC-TH vs TCH. My onc (Kevin Fox) is actually quoted as saying he is convinced that most patients can be treated without the anthrocyclines and 100% of his patients receiving chemo five years ago received anthrocyclines vs. 20% now. And the artical is from 2009. I guess I fell into that small percentage. Like some others said, I was anxious to get started and didn't know to question anything. Given the choice in hind sight, I would still choose the AC-TH because I had neoadjuvant chemo and they could no longer feel the lump after two txs of AC. And it was over 4 cms according to the MRI. Although I will obviously never know if it would have been the same if I started with TCH. Also, I had the chemo set up before the fish test was back, and now wonder if they would have known I was going to get herceptin, would they have changed the recommendation. I don't think so in my case, but I would definitely question it if I had the information I have now. So in a way Bryona, you're lucky that you have some time to gather information to discuss with your onc.
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Hello,
Just wanted to put in another treatment option, one I was given here in Canada. I was put on neo-adjuvant chemo and targeted therapy. Being triple positive, I was pretty adamant that I wanted herceptin right away. I had it in my mind that this drug would be my ticket. I met with two oncologists. They both agreed that tumour size plus lymph node affected that they wanted to do neo-adjuvant therapy. However, one wanted to start with 4 x FEC (very similar to AC) and then 12 xTaxol and Herceptin. The other oncologist said that he preferred to start with the Taxol and Herceptin (12 x) and then 4 x FEC WITH Herceptin as well. For more than one reason (such as just general better care all around) I chose the oncologist who proposed Taxol/Herceptin followed by FEC/Herceptin. And I know I downplay it there in the last sentence but really, all-around with everyone I am going to deal with (bs, plastic surgeon, radiation oncologist...they're all better at the place I chose...very important decision!). I am currently at the halfway mark with the FEC and Herceptin and not regretting my decision.
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bryona sent you a PM. I'm not sure but I think I reads something recently that said Dense Dose was better for us early stage from the San Antonia conference. Anyone else remember that? Yes you must stay away from the bully doctors. You will have a long relationship with your onc. Pick one you like. Also I had another friend that couldn't do Taxotere due to severe nueropathy and they had to switch her to
Adrimycin. She wasn't HER2+ but my point is none of this is written in stone and very specific to you.Rhonda2 good luck today!
Lee I had to fire my first gastroentinologist years back too. BTW having late periods (well into your 50's) is a risk for breast cancer.
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By way of demonstrating how entrenched some NY drs are about the AC-TH regimen, after diagnosis, I went to see a MO at Cornell, who wanted me on that regimen even though my Mom had had bc twice, and was treated with AC the first time, got bc again, and then later developed MDS and passed away from leukemia. (Her initial bc predated herceptin, and her 2nd bc was treated with radiation only.)
Now I am not saying that all, or even most patients on AC develop MDS/leukemia. The overwhelming majority never do...(thank God). However, there is somewhat of a correlation and given my family history, and that I had a relatively small tumor, and no node involvement, you would think she would have shied away from that treatment regimen, especially since there is another almost equally effective TCH regimen that doesn't have that association. When I specifically mentioned my family history concerns, she felt that the additional percent or two of potential benefit (which she even conceeded could have been because AC has been around a lot longer) warranted the AC-TH treatment plan.
Needless to say, I did not follow her advice, and am being treated with TCH at another hospital.
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Bryonna, I have little to add from what others have said here. I also saw Dr. Slamon and two oncs at Kaiser and all recommended TCH. An onc at the City of Hope recommended Adriamycin but I couldn’t see risking all that additional toxicity and the cardiac concerns specifically for such a small potential difference. Also, I don’t really understand this, but there is a distinction between statistical difference and absolute difference. Something like that. Maybe someone else can chime in here. One thing I think is great is that you are taking a very active mindset with this whole thing. This is a scary-as-hell diagnosis to have, all the pieces of the treatment arsenal have downsides, and it is really important to feel comfortable with your team.
Rhonda – good luck today— here’s wishing you clean margins and negative nodes.
Cgesq – great example of what egomaniacs some drs can be….
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You all are amazing. Thank you so much for the information, especially your own experiences.
ForeverChanged, I hadn't thought about the difference between starting Herceptin right away and having to wait until after the AC rounds; thanks for bringing that up. I'm with you: I'd like to get some of that into me sooner rather than later.
lago, I also read about the improved outcomes with DD, although as always, they weren't nearly as certain and conclusive as I'd like them to be! I have a really strong negative feeling about DD, too, in spite of -- or maybe because of -- the Neulasta part of it. It's another one of things that I can't explain and I'm worried will lead me to make the wrong choice. I'm usually a pretty logical person. I'm not so great at trusting my gut.
LeeA, I can't imagine having a doctor that the nurses were afraid to call. Wow. And I loved your comment about this not being a bunion or dislocated elbow. The funny thing is that I wouldn't put up with poor treatment for either of those things, but I do have trouble with ending a relationship once I've invested in it. I'm in this for the long haul, so I'd better be happy with these people!
I don't know what I'll end up doing -- I trust my new MO enough to wait for her to weigh in -- but I do know a few important things:
- I made the right choice in kicking the first MO to the curb. (Ooo, I kinda wish I had ACTUALLY kicked him...)
- There are enough arguments for both regimens that I could second-guess this forever, so I'm going to have to choose to be happy with whichever one I go with.
- I'm incredibly blessed to have stumbled across such an amazing, supportive, knowledgable group of women.
Thanks again, everyone.
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Rhonda 2... good luck today.....
Bryona...
It was TCH..with the T for Taxol.....for me with no discussion of any other option. I had neo adjuvant chemo and I was in chemo within 3 1/2 weeks of DX so I had no idea there were any other options until I was well into treatment. Many of us had neo chemo so we have a bunch of us who had great responses to all the treatment protocols. My readings indicate response rates are very close for all these regimens. Mostly a matter of lowering the risk of both short and longterm SE's.0 -
Also Bryona.... And all the newbies , if you haven't already done so, read TonLee's link at the top of the forum .
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I had neo chemo to though I was in a clinical trial which included carbo/Abraxane/Herceptin than after surgery more chemo (AC x4) was not happy but I guess each Onco is different with their tx plans...
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I also wanted to say that I was given Taxol+Herceptin for 12 weeks, then 4 x FEC+Herceptin. I am in Texas and this is the MD Anderson protocol. I was actually at my oncologist today and was discussing this with her. She said that she knows that not everyone would offer it up, but that the data they collected speaks for itself and she's glad I chose it...and I had PCR from this chemo when I had my BMX.
I am now 9 months out from chemo and just got the clear to not come back to see her for 6 months.
YAY.0 -
I had a PCR to my tx also...
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Hi everyone.
I just searched the acronym PCR but what came up was prostate related.
What does PCR stand for?
Thanks in advance!
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LeeA - Pathologic complete response
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Sherry67'
Wow! I tell everyone I got the super duper deluxe queen size treatment for breast cancer treatment because it took so long. You must have gotten the king size treatment!, chemo before and after surgery! Even with pCR!0 -
KayB--
Yes I remember that...and it is awesome. Is there data anywhere that says what PCR rates are for other regimes? I honestly had no idea about any of that going into this. My MO just listed three options. (1) being TCH, (2) being AC+T and (3) being T+H followed by FEC +H. I asked her which one she would do, and she said 3. So that's why I did it. She felt the a/c was too cardiotoxic but the FEC still would give me the "pow" without quite as much heart taxing. I'm glad I listened.
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LeeA,
I'm heading to Florida for3 months. As usual and typical since DX, leaving my medical team behind brings about the ever looming anxiety reaction..separation anxiety this time.
I saw a new mo today...a lovely very young women ....because my MO took a much needed vacation and my appt with him yesterday was cancelled because of weather but I spoke to him a few times about finally making plans for the future and of going to Florida. I think he was pleased that I was taking these steps.
For those who follow...this was my first 3 mo checkup after my final herceptin. They did the regular bloodwork , weight, bp etc and finally my blood counts including my WBC were back to
normal 10 months pfc. Both my wbcs and rbcs and also platelets had been low since chemo. My mds were not
concerned all along. My oxygen saturation was 99%.
She also did a short physical. Heart, Lungs and a general feel around nodes and breasts.
I was kinda suprised since my MO's had only touched me on my very first visit. All the clinical physical part was done by my BS previously.0 -
Omaz, thank you!!
ashla, have a wonderful trip and soak in lots of good Vitamin D! It sounds like this new oncologist gave you a very thorough examination. Great news about the blood counts all being back to normal. Enjoy yourself! You deserve it! You've been through a long year (plus).
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