TRIPLE POSITIVE GROUP
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bucky my onc said no to zometa after the study before this last one. I haven't spoken with her since the newer study came out. Appointment this April.
Lori (((waves))) I too had a ton of pain meds I never used after my BMX or surgeries. I only took one pill when I got shingles (now that is painful). But if you need them use them. Some of us have a ridiculous tolerance to pain. I found that I was one of them.
Yaya I'm about a triple positive as you are. My PR is only 5%
I don't even think my BS considers that positive but my onc does. 0 -
Welcome Lori! Best wishes!!!
Fluff...grrrrrrrrrrrrrrrr!!!! Definitely between a rock and hard place. Good grief.
SpecialK, LOL, you are on a roll!
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Has TonLee posted and I missed it? Wasn't today her onc appt?
I've been thinking about her.
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Hi Everyone - I have my exchange Wednesday. Kind of nervous, but about dumb things like what I will wear on my head during surgery (it all keeps coming back to the friggin hair for me). Will be glad to get this part done.
Did TonLee post? I saw a "good news" but must have missed her post. Hoping it's all good for you TonLee!
NWArtlady - love your Dory quote, it always makes me smile
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I think the congrats to tonlee posts are because her path from her ooph showed no issues, but it was part of a larger post. I went back to cehck because I thought I had missed something too.
shore - When I had my TE put back in and was bald they let me wear a clean bandana from home. I wore one to the hospital and had the freshly laundered one with me - I changed into it when I put on the hospital gown and little socks. They just put the shower cap thing on top of my bandana.
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Thank you SpecialK - good idea! I have way more adjada than I should over the hair - doesn't help that my PS is extremely hot. haha.
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Thanks for starting this thread!
Can I get some feedback on the chemo regimen your oncologists recommended? I have gone to two different doctors and got two different opinions. First doctor recommended AC-TH (4 cycles of AC every three weeks and then 4 cycles of TH every three weeks, followed by herceptin every 3 weeks for the remainder of the year). The second doctor recommended TCH (6 cycles every 3 weeks, followed by herceptin every week for the remainder of the year). I hear 50% of doctors choose one regimen and the other 50% of doctors choose the other regimen. I worry about the cardiac toxcity with the AC and the herceptin combined, as I will also need radiation which can affect the heart too. I've heard mixed stories that AC-TH is more aggressive and then I've heard they are the same. What chemo regimen did you take and what did your medical oncologist recommend and why? Thanks in advance!
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Debbie, I had AC x 4 every 2 weeks followed by taxol & herceptin x 12 weekly. Herceptin will continue now every 3 weeks until 1 year from when I started it in november. This tx was recommended as an aggressive tx for grade 3 her2+ bc in view of my age (41), LVI present (but node negative), and otherwise healthy and strong. I have read mixed things about AC-TH v TCH also but my MO said from the beginning that tx would be aggressive and I liked that. Im not too concerned about cardio toxicity. I think im so terrified of bc that nothing else scares me any more. Good question you're asking and im curious what others say too.
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debbie - hi! One of the first things that should happen is an echocardiogram regardless of which chemo regimen is chosen to make sure your heart is healthy enough for Herceptin. That information may inform the choice. I had 6 TCH, my onc does not like to combine Adriamycin with Herceptin. He does use it for non Her2+ ladies, so I know it isn't a bias.
shore - I know what you mean about the hot PS - the nurses at the hospital thanked me for having him as my PS because they said they liked to look at him, lol! I said hey, I like to be a team player!
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hi debbie
AC-TH like others have said is more cardio toxic but if you have no cardiac issues lots of ppl have had this combo
when i asked for a second opinion at Dana Farber the onc there (who specializes in her2) said they do not offer TCH to their patients. My onc here (in canada) would also not treat without a anthracycline. I had fecx3 and taxx3 which is similar to ACT (with herceptin) except the E replaces the A - the E is less cardio toxic from my understanding but still part of the anthracycline family
Get your second and even third opinions but with positive nodes i think the ACT is considered more aggressive
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rozem - I had TCH with positive nodes.
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Hey guys,
Haven't been on much lately. My teenager is getting his license, just got a new car, and a new job...and you wouldn't BELIEVE all the stuff I've had to do, go to..etc. Whew. I'm wiped out
My Onc appt was pushed back until the second week in April. So I wil have the lump evaluated then...however, the lumps under my jaw have resolved..so woo hoo! heh.
Welcome Lori!
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Thanks for starting this forum, really appreciate all the information. I originally thought I just had 5cm of DCIS, but without clear margins, the SNB showed that my nodes were clear. I had to undergo a UMX (3 months later) that found another 7.5cm of DCIS and hiding amongst it a small lump of IDC (less than a cm). Initially they had thought I had IDC but it took three procedures to find the sneaky blighter. I am scheduled to see the Oncology team after Easter with the possibility of chemo + Herceptin + Tamoxifen. I am ER+ > 90%; PR+ >90% and HER2+ 3+
Is there anyone out there with a similar diagnosis to me and what type of regimen were you given and how is it going. Concerned that I may not be able to work while I am having chemo etc and that will be hard for us financially.
Cheers
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special k - sorry, didn't want to make it seem like TCH is not the way to go. As with all things BC, there are tons of opinions, doctor/hospitals preferences. Both my doctors said the same thing so i was just passing this info along...
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Debbie, I had the exact same regimen as Shore1. I was 42 (I'm now 43) when diagnosed stage 1, triple positive, grade 3, sentinel node negative. When I asked my Onc why this treatment, he replied that my "cancer is aggressive, so we're treating it aggressively."
SpecialK is right, you'll need a baseline echo and will probably be tested again after chemo. My baseline was good and I recently had a 2nd echo (chemo ended Dec. 30, 2011) and it was also good.
Hope this helps!
Shore1, I'm glad Dory makes you smile!
Dang, TonLee, you ARE busy!!
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Hills-My chemo plan included AC x4 DD and Taxol/herceptin x 4 (except herceptin for one year-you know). I have 2 Taxol treatments left and I can't wait to be done. My oncologist chose this treatment because of my oncotypeDX score of 35 and all the triple positive aspects that go with it. I hope this has helped. Good luck with your research and decision.
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I go to Dana Farber- Had ACX4 and am finishing up 12 weeks of taxol and herceptin. Will continue with herceptin every 3 weeks for 1 year. Will have echo every 3 months. I did have a positive sentinel node and LVI so wanted to treat it aggressively. Good Luck!!
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Debbie - I went to Mayo for my second opinion...they recommended AC+TH. But the onc that I choose (local) said TCH. I questioned him about it and he said that chemo regimens are somewhat regional (AC+TH is common at Mayo) and if I wanted AC+TH, it was a perfectly reasonable regimen. He recommended TCH due to reduced cardiotoxicity and a reduced risk of chemo-induced leukemia because "if you get the leukemia, you'll die from it. We are not effective at treating it." (I believe the risk of developing chemo-induced leukemia was around 15%.
AC+TH is 2-3% more effective in studies but so many things could account for such a slim margin of effectiveness...lifestyle, personal physiology, etc.
My diagnosis is in my siggy. I did the TCH. Good Luck! BC is a steep learning curve!0 -
Shore.....i decided that I was not going bald into surgery. I wear makeup and everything, under yhe assumption that if they think I look nice they will treat me better. Lol.
Anyhow, i wore my wig when I checked in, never said a word to anyone about it and rolled on in to surgery with the regular surgery cap on. I figured how much worse could it be from Real hair? When I woke up, it was still on my head, so I am assuming it didnt come off. I wore through three different surgeries. Tye one this friday will be my regular hair. That should throw them for a loop.0 -
Fluff, with my luck, the wig would slip off or id wake up with it crooked on my head so ill probably do bandana like SpecialK. But I agree - full face of make up for me in surgery. Im just glad my eye brows and lashes are back better than ever.
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TCH has been prescribed for me. Doc did not prescribe an anthracycline b/c I've already had radiation, and there is a greater risk of radiation recall with an anthracycline.
TonLee, that is GREAT news about the lumps under the jaw resolving!
Hils - I had a delayed diagnosis - thought it was all DCIS but later on found out there was a tiny amount of IDC HER2+ in it. I am scheduled to start TCH soon so I don't have feedback for you but the many wonderful women on here will be on shortly to give lots of input.
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dance - A friend of mine was just diagnosed with DCIS - did they find the IDC after surgery?0
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Shore...lol, that was the first thing I checked. Told my husband to straighten it when I came into the room, if it looked funny
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rozem - no problem, I just wanted to point out that I had positive nodes in case the reader was not looking at my signature line! Not to worry!
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Omaz, no. It was missed by several path reviews. I had 2nd opinions on need for radiation, and they required looking at my path each time. You can imagine my shock to find out 4 months after BMX that I was not DCIS only...and then 2 weeks later to find out that that my tiny IDC was HER2+. This is why I am just now 6 months post BMX getting ready to start TCH.
I think the fact that I had such extensive DCIS made for finding my "needle in the haystack" IDC extra difficult.
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I have TCHX 6 and Herceptin for a year. Next week is my third TCH .I also have Herceptin every week till the 6 are over then Herceptin every 3weeks. Dr said aggressive bc, treat agressive.
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HI Dance - thanks for the welcome, just read your bio and wow you certainly have had a bit of a journey to get here. Positive energies winging its way to you.
Look forward to hearing fron the other women - you guys have so much knowledge and any handy hints or tips are most welcome.
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Hi Hils - Welcome! I had TCH. I was recommended AC->TH by my second opinion onc but liked the onc and setting of the TCH recommendation better. In response to your earlier post - I worked during chemo as best as I could but from home, my job allowed me to do that. Many women here have worked during chemo, maybe taking a few days off with each cycle. As you know each person handles it a little different so you may be among those who do just fine and you can continue working.0
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Hi Omaz - thanks for that. How long did the TCH take? Many women here in NZ seem to opt for 9 weeks Herceptin + Chemo followed by a possible additional 9 weeks of chemo. The NZ govertment funds the treatment and although it does treat women with 12 months Herceptin, they state quite categorically that there is no proven research that shows 12 months is beneficial and kind of imply that only Roche (the pharmaceutical company) are pushing for the longer treatments. Does anyone know anything different or have any research that shows 12 months is better.
Sorry for all of the questions
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Hills - In Australia, UK and Canada the standard still seems to be FEC x 3 and then Taxol or Taxotere with Herceptin. My understanding was that the Epirubicin (E) is less cardiotoxic than Adriamysin. I'm 46 yrs with no prior heart issues and I finished the FEC with no change in my left ventricular ejection fraction (LVEF - a test for heart function).
I have now started Taxol/Herceptin weekly and will have another heart function test when I finish the 12 weeks of Taxol before I carry on with Herceptin 3 weekly for the rest of the year.
I refused Taxotere which is the usual one my onc uses. I refused it as I was unwilling to take a chance at the permanent loss of hair that it can cause. I felt there was no reason to risk that when studies actually show that Taxol has less SEs and a slightly better progression free/survival stat.
Jenn0
