TRIPLE POSITIVE GROUP
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That study about 4 vs. 6 chemo? Yeah, it makes me nervous. I thought about asking my onc about it, but decided against it. Only 20% of those in the study were HER2+. I'm just not comfortable with that. Sure, I'd love to be done with chemo. But I'd hate to regret that decision down the road.
My tumor was super small - 0.5cm on official pathology. But I had 3.0mm in one node already. Bummer.
I believe my second cousin's cancer is the reason they found my tiny tumor. She died after her cancer went metastatic and after her death, I insisted on a baseline mammo. I was 30 at the time. The only reason my malignancy was pursued so aggressively was because that had that baseline mammo. to compare to. Thank the Lord! And my cousin.
(BTW, she was 33 and refused treatment. She wanted to try natural options first. They wanted BMX, chemo and rads. By the time she came around to accept what they were telling her, the cancer was too far advanced.
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Arlene it might be the chemo but now that there is an issue I would think they would be extremely cautious. Having a small tumor, no nodes and even a mid grade does put you in a better position to beat this with or without Herceptin.
BTW you are not eligible for the neratinib trail. I'm not either. First of all I think it's stage II & stage III early breast cancer. You also have to be node positive (changed that a year ago). Although I'm a stage IIB I am inelageable because I have no nodes as well.The main side effect seems to be the Big D.
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Lago and Arlene - is neratinib like lapatinib (tykerb)? I wonder if you could get lapatinib Arlene.0
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Hi ladies thank you for the support. It's is just scary to watch your old healthy self deteriate into something you don't recognize and I am scared for Long Term SE. I am trying to stick with it and I even feel guilty for feeling this way when so many don't have options. I am sorry Arlene to hear about the H, but your heart is priority. I am thinking of you. Pejkug3, I will
Keep reading your story over and over and maybe that will get me to TX 4, then 50 -
NMOSS - I just finished TCH #4 last week. So far, #4 has been my easiest round. #3 was a bad one for me. I'm determined to finish but I did consider stopping after #4. But I don't want to have any regrets. And if I have a recurrence, I will always wonder if the additional chemo would have prevented it.
My onc even discussed stopping early with me. #3 was that hard on my counts and resolve. I told him at my appt before #4 that we needed to come to an agreement - I am finishing. Unless labs say I cannot, I am finishing. No looking back.
You can do this. It sucks. It's hard. But we GOT this.
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Omaz Tykerb (a pill) is a different drug than Heceptin. There are trials going on where they are giving both. I believe they now give Tykerb once Herceptin is no longer working for stage IV. Tykerb might also break the blood brain barrier (Herceptin does not).
Here is the thread on the neratinib trial. Some refer to it as oral herceptin. Yes it's a pill. They believe this might also break the brain blood barrier.
Link to trial (phase III for early breast cancer): http://clinicaltrials.gov/ct2/show/NCT00878709
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Lago, did you mean to say 2 posts above that it's recruiting node positive...not negative, correct?
I am trying to figure out why they tell me I am not eligible for the neratinib, sure seem to fit the criteria.0 -
Typed wrong, fixed. Must be node positive.
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Thanks for explaining Lago.0
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Thanks for all the suggestions of something to take the place of Herceptin. Guess I'll see what my oncologist says next week, but when this cropped up it didn't sound like she planned anything to replace it. But, I can pretty much guarantee she won't drop my Chemo from 6 TX's to 4 in light of all of this!
Arlene
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windlass sorry I missed your post. First of all cancermath does not work for anyone with a tumor over 5cm or a certain number of nodes. There is a disclaimer on the bottom right when I put my stats in so be warned.
The reason Heceptin stats aren't in there is because it hasn't been standard care for early breast cancer for that long. I think standard care started in 2006. No 10-15 year stats available.
Be sure you are reading the numbers correctly too. The other day I sent a gal there. She's 35 with stage 1. She read the stats thinking it stated her probability of living till only 43 when in fact it was stating her probability of living 43 more years. Big difference!
Arlene my mom is doing Tomography screening. Is that what you mean?
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pejkug and arlene, #3 was hell on me as well ended up in the hosp with bld transfusions, lost 8 # in one week and could barely stand from the weakness. i say its kinda like having a baby..you always swear that you will never do that again!, but then you forget and do it all over because the outcome is so worth it. At the end of #3 I told the onc I wasnt coming back for any more, but of course I did and finished the 6 txs, Hang in there and try to remain positive that the next will be better.
Happy Mothers day to all
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carberry - Are you starting rads soon?0
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CARBERRY - Your childbirth analogy is *so* true. I actually used that one at my onc appt before #4. That's when I told him that I didn't want to discuss quitting again unless my body simply could not stand up under any more chemo.
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Lago: Nope, not Tomography as I believe it has radiation. The treatment they were using on Dr. Oz had NO radiation and is infrared.
Oh, joy for TX#3 coming up next week. Hoping I do ok. I've already had my share of the ER.
Have a great day all!
Arlene
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Pejkug, you are so right. By the week before chemo I had forgotten how crappy I felt and was ready to roll. You have finished 4, you are in the home stretch! The next one 5 is the last time you will have to anticipate the roller coaster. After 6 it is uphill all the way. I did not keep a journal and have forgotten most of how bad I felt. first time I went back for herceptin the chemo room was like a flashback but that has gone away. I will not eat cheezits anymore because I ate them due in chemo one time and foe some reason they "taste" like saline. Crazy....you bet. Libraylil
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Hi Pejkug - I totally understand you about the wondering what if it comes back, its hard when you see yourself dying in the physical and emotional sense to keep subjecting yourself to it. I often wonder if I go all 6 then it reoccurs, how do you handle that? I am exhausted and feel horrible and it looks like no end in sight. I understand that it only gets worse with 4-5 & 6 is the monster. Other than the shell of yourself what is left? I hate to be a downer but this is the only place anyone understands what i may be going through. y husband and family have been wonderfully supportive but at the same time they have no real idea what its like like goodness. I used to be the most positive, bright side person there was, now all I feel is fear, anger and pain. I went to a therapist and she was not to much help, only because she could only give her 2 cents about what she thought I was going through and how I need to be positive despite the fact that I can't stop vomiting and my body hurts from head to toe.
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nmoss What kind of therapist was that? I always get pissed when people tell me how I should/shouldn't feel.
I know even I was "can I do this again" with tx 6 but I did it. Granted I don't have the issues you're having.
I still want to quit shingles.
Yes I'm back to barely being able to wear soft yoga pants again. 
nmoss I think you need to do some more
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nmoss - I am concerned that you are vomiting. Can't your onc find something that works against your nausea?0
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Hi Lago she was a family therapist. Totally useless. I wish you didn't have the shingles to deal with as if you have not been through enough. I love the emoticons! I am accepting I have to do the 6 but I am seriously wondering about it's necessity it seems to me 6 is an arbitrary number that came about to get through some trial. I already am loosing feeling in
my index fingers. I'm sure by # 6 I won't feel any fingers at this rate. I just wish I could get an onc who didn't act like a robot. Only doing what the computer tells him.. It took 3 visits just about bone pain for him to even suggest ultram as am option .but yet I went through weeks of horrible bone pain. I may ask to lower dosage but at his rate I will be on TX 9 before he gets around to it0 -
Hi Omaz
Day number 5 , no food and no water. And still vomiting. I have taken Ativan, Compazine and Zofran. Nothing. I have tried bread, ginger, juice , yogurt and it all comes back up within a few hours.0 -
nmoss - I have read about emend? What about that? I am sorry you are throwing up - that's awful!0
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nmoss - I know there is a therapist here in this area that specializes only in breast cancer patients. Can you check with some of the BC organizations in your area - or the ACS - to see if you can find some resources that are more specific to cancer patients?
I too am still worried about your nausea and pain - there must be other meds that will handle this better for you. I'm sorry your onc is a poo.
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I will check with them about a therapist. I asked for Emmend from the beginning and never got it. Ironically he was voted best in the state. Although they failed to
Mention best in billing was the award. He says I am a challenge because I question him?? Doesnt everyone.?0 -
nmoss - holy crap - he doesn't like questions? Good thing he doesn't bill extra for those! He would HATE me!
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Oh, NMoss. So sorry about all your problems but I'm agreeing with everyone else, you've gone too long suffering from the vomiting. I'm thinking your doctor is unreachable on the weekends so perhaps you need to go to the ER....trust me, NOT my favorite thing to do but maybe they can help. It is at the point where you need to push for the Emend. What are your premeds?
Goodness NMoss, I hope you get relief soon and if not, it might be time to change oncologists.
Arlene
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Thanks all. I am on decadron, Zofran and benedryl pre meds. Although after day 3 I stop taking the decadron. I have Herceptin on Monday, so I will see the onc then.
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nmoss - I was vomiting after tx 2. My insurance did not cover Emend, so the nurse found me some samples of Emend for tx 3 and tx 4. I love that nurse because I had no nausea with Emend. Beg for Emend!
Juli
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Hi Juli I think mine will ocver emmend, what it does not cover is my doctor giving it to me, hence no co pay...
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lago and arlene a - I was just looking at Dr. Oz and ran the little clip on BC and they were discussing Whole Breast Automated US and Breast Specific Gamma Imaging (or aka Molecular Breast Imaging) were those what you were looking for?
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