TRIPLE POSITIVE GROUP
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Hi everyone. I am hoping someone will be able to help me with this. In rereading my pathology report, my HER2 status is listed on the IHC eval as: positive 3+ 100 unfavorable. The ER/PR status was listed as 2+ and 3+, favorable. I can not remember anyone saying what that meant. Thanks in advance.0
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moni - this is from about.com, explaining the 0-3 for hormional receptors. It seems somewhat inexact, but essentially might roughly work like a percentage of 100 divided by 3, 1=33%, 2=66%, 3=100%
On your pathology report, you may see the scores for Hormone Status. This is expressed as a number between 0 and 3. Here's how to understand the numbers:
- 0 is no receptors found,
- 1+ is a small number,
- 2+ is a medium number, and
- 3+ is a large number of receptors.
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moni as far as "favorable" or "unfavorable" it's all shit. I mean we have breast cancer… that's unfavorable in my book. What's this crap about "favorable" when it comes to cancer? Does it mean we got the "good" kind?
Seriously what they mean is some things have more treatment options making them easier to treat. Being hormone positive… they got drugs for that. As far as HER2+, I still think it's better not to have it but not as bad as before because they now have new drugs for that. (notice the plural when I say "drugs".)
Right now they say triple negative is one of the least favorable type to get. Thing is once a triple negative makes 3 years NED it then becomes more favorable because their changes of recurrence goes way down.
Bottom line is the glass is both half empty AND half full when to comes to cancer.
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I couldn't have said it better Lago!
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Thanks everyone. Yep, gotta agree Lago, it's all shit. I understand the 1,2,3 status. it's the favorable and unfavorable I don't get. The 100 was listed as the percentage, as was the ER/PR, but they were listed as favorable. I'll ask the Mo when I see her in August. For me, HER2 status is key, as I cannot take Herceptin.Waiting to see if another drug will come along.
Funny, when my surgeon got my path report, he said "you got the best kind!" as if there is one. But that was before I found out I was allergic to chemo drugs, Herceptin, and had cardiac changes! After this year, I wonder what the 'worst' kind would have been like!
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Great way to put it Lago....
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moni, your last comment made me laugh; when I was originally diagnosed in Feb with DCIS, I joked that I had "cancer-lite" only to find out I had 3 tumors, DCIS in the ENTIRE breast, and triple positive. You are so right:
"what would the worst kind be like"??
Seriously, it just sucks to bad!!!!
Best to youMoni.
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Kayb- yep tried Abraxane adjuvantly with the same results. At that point my MO said no more. My immune system was so depleted, the rounds of septicemia began.
Funny, just spoke to the allergist/immunologist that treated during chemo trials, who had called about some blood tests. Wanted to know if I was up to living in a bubble as I was allergic to everything he tested, haha! Funny that the thing that is most threatening my life at this time is from within. Go figure....
So sad to hear about Robin Givens.
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Moni....Robin is a perfect example of "you never know".She was triple negative....makes it the three years and then gets hit with some weird thing resulting from chemo. I am trying to move forward without thinking about the "what if" every day. It actually makes it a little easier when I read something like that, which I know is crazy.
I think I will adopt Lago's answer to people asking how we are. "same as you...we will all die someday."
Vicki....your post made me laugh. My first biopsy found LCIS. I was so relieved. Then my nurse practitioner said in her mind, that is just lazy cancer and made me pursue it further, and they found the IDC.0 -
Moni do you mean Robin Roberts? I think Robin Givens is fine.0
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Ok ladies, I have posted here a couple of times but I am really going to join in now
I feel more official since I started my Herceptin yesterday. I am really active in the MArch 2012 chemo group but realized that many of them are HER2- so they won't be having the same experience as I will when they are done with chemo. Halfway through with neoadjuvant chemo - A/C x4 done and started Taxotere x 4 plus Herceptin yesterday. Surgery sometime this fall (BMX by choice - have my presurgical appt next month so still no details) - have yet to meet with a PS regarding reconstruction. Guess that's it for now, I am bookmarking this group in my favorite topics
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kltb - Welcome! This is a great group!
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Welcome kltb04! I am also getting chemo/Herceptin right now - TCH. I am on the March/April chemo thread.0
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Welcome kltb04!
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Thanks for the welcome
Just gonna jump right in with a question - has anyone been told no caffeine with Herceptin? I ran across a study that indicated it could interfere with efficacy of the drug but upon doing further research didn't find anything else about it. The paperwork I got from the drs office yesterday said no alcohol but I didn't see caffeine mentioned. Thanks!
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I was never told that....I'd probably die without my coffee! In fact, my MO said an alcoholic drink here and there was fine also even though I am not a drinker.
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Hi kltb04!
I wasn't told anything about what not to eat but I did read over and over again no grapefruit. Since grapefruit interacts with lots of meds I stayed away from it. Best to double check with your onc. Bring in the studies/articles you have found so s/he can take a look.
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Oops! Yes Robin Roberts! Don't know where the 'Givens' came from! Aaahh, gotta love the swiss cheese brain.....
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No alcohol with Herceptin? I'm not drinking with my chemo...but was looking forward to having a blow out night now and again after chemo. Has anyone else heard no alcohol with Herceptin only?
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DT - my MO said it was okay
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My MO said no restrictions while taking Herceptin other than grapefruit. Which I don't eat anyway since I take a statin. I couldnt have coffee during chemo but couldn't drink anything ... Everything made me sick. Talk about dehydration! When thru got right back to coffee, glass of wine or whatever I wanted to drink. I can't move in the am less think without coffee.
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Cool - thanks for all the input...I never want to ask my MO about alcohol because my mom is always with me and she doesn't approve, lol. Yes, I am nearly 39 years old and I still don't drink in front of my tee totaler parents.
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Ok, I have a question about Herceptin now. Once you got to Herceptin only, were you able to get it without premeds of Benadryl? I am getting Benadryl prior to my Herceptin only (in between chemos), and it wipes me out. I am going to ask my doc about decreasing it or eliminating it, if possible, but only if some of you have had success doing it without premeds.
Oh, and also, on one of the other forums someone said you aren't supposed to take Benadryl with Tamoxifen...thoughts on that???
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My chemo nurse mentioned yesterday that when you get to Herceptin only, yes, most do take it without the "premeds" - just Herceptin so they are in and out quickly. From my understanding the Benadryl I got yesterday was for the Taxotere. But I am a newbie so that is just what I heard
I HATE the way the Benadryl makes me feel when I have it in an infusion - it just hits so quick and it almost makes me sick to my stomach.0 -
Hi, I have a question on follow-ups. Are any of you that have completed active treatment doing 'tumor marker' tests? My onc said she does follow them, and I will start them in Aug. I've heard a lot of false positive talk with them. Any of you have any experience with these? Thanks
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DT....I no longer take pre-meds with herceptin. Herceptin alone tires me out. I'm not having problems without the pre-meds. No gratefruit juice? How does grapefruit juice interfer with herceptin?
I had herceptin yesterday. I noticed when they have you check out your name and birthday on the Herceptin bag that it said 128 mg. I thought I was only getting 2 mg per week. I'm not noticing much of a difference in a weekly dosage than a 3 wk dosage.
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DT - I am on Herceptin only now and no pre-meds...YAY!!!!! I have also heard that Benadryl interferes with Tamoxifen.
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Moni, for my year of Herceptin I didn't have any pre meds of any kind, only 30 min infusions of Herceptin every 3 wks for a year. I didn't have any se from it but once in awhile I felt tired the day I had the infusion but I think I probably didn't sleep so well the night before. I was also told to hydrate the day before and the day after.
My MO took tumor markers but now that I'm finished with my year of Herceptin she said those tests will be discontinued.0 -
Thanks all for the replies! Very helpful!
Evebarry - the 2 mg is 2 mg/kg.
Here is the FDA dose calculator, in case you are interested:
Oncology Tools: Dose Calculator
My dose is 110 mg each time (I go weekly as well.)
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No Benadryl or premeds when I was Herceptin only. I'm on ESD not Tamox.
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