TRIPLE POSITIVE GROUP
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I want bangs!
My hair isn't getting longer, it's getting taller! I've always had pretty curly hair. This is a bit more curly, I think, but it's never been this short.
I've had my hair cleaned up around the neck/ears but I'm very close to getting a "haircut".0 -
Alaska Angel--10 years!!! you made my day!! that is such wonderful news!!!
Gals I had an Oncotype dx test done. (see profile) I am triple positive, and my test result was a (28). My MO informed me that a result under 15 (no chemo) 15 -25 ( up for discussion) and over 25 chemo.
My initial biopsy was neg for Her2 (done with fish). Thank God I had the oncotype dx test done, because it came back as equivocable. (hence the high score) and because of this it had to be tested again for Her2. Came back +++ the third time. So chemo was a definite because of the Her2 ++ and the Oncotype Dx result didn't matter as much. Although I would of received 6 txs instead of 4 if my score had been over 40. Makes you wonder how many Her2 + are missed. I am so thankful that I had the test done, otherwise I never would have been given the Herceptin.
special k, tonlee, lago -- love all the humor. Laughter is the best medicine!!!
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ok ... had my last chemo tx today and asked my onco why he ordered the oncotype since i was her2 positive and would have to have chemo anyway to start with the herceptin. he said that score on the oncotype would tell him how MUCH chemo i would need, that the oncotype basically told him how aggressive my cancer was, and that it gives an overall view of my cancer. made sense to me!
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tomorrow first appt with oncologist ,,this will be the final, yes, you do have c..any suggestions anyone? i have the typical question list, any that I need to add?
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mtnbiker, be sure to take a notebook to write notes, or better yet, another person who can listen and take notes. i thought i heard everything, but i didn't. my sister was good about reminding me what the onco said. i was always surprised at how much i didn't remember.0
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mtnbiker - if you can record on your phone or with a little tape recorder you can refer back to it later, some people have done that and find it useful. Be sure to ask for a copy of all reports, both pathlogy and imaging. A lot of people later ask how they will be followed in regard to scans, you might ask that up front.
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Congrats Yaya!!!!0
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thanks, for the input will do!:)
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Hooray YaYa and congrats! The more I read about the onco the more I wish they had done it on me. I finally got all my records and reading through them is difficult...I see at least one doctor has things wrong, like presciption medicines that I am on that I've NEVER heard of let alone on. How does that happen and that was my surgeon.
I noticed the KI-67 # on my lab reports. Still trying to completely understand that lab...why would they do it and not the Onco.
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I recorded everything and it was amazing what my husband and I forgot. It was vry helpful.
I have a question and don't know where to post it. I have a great relationshipwith my oncologist and plastic surgeon and am thinking of getting them something for Christmas. I found a great gift for my onc, who is very spirtual, but for the PS, something funny or office oriented would probably be better. He is a lot of fun, as is his office. I know I can do the basket and cookie kinds of things, but was trying to think of something creative.
He has had his own practice for three years, so the office is reasonably bare.
Any ideas?
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ArleneA - KI-67 gives info on how quickly the cells are multiplying, but oncotype gives more info on recurrence rate. I am pretty sure Ki-67 is pretty routinely done with your pathology report.
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Hi everyone. I kind of consider this thread my "home base" on BCO, so thought I'd start here with a question. I had my routine 3 month check yesterday with blood work. Apparently my platelets were a little low (over 150,000 is normal, under 20,000 is really bad, mine were 115,000 - so not horrible). So I had to go back today to give them 3 more vials of blood so they can test to see if I have any antibodies causing this problem. I will say that I have been bruising really easily, and that is a symptom of low platelets. Have any of you had this? Or heard of it? Just need someone to tell me that it's prob nothing, and not leukemia or liver failure/mets (yep, I've done my internet "research"). My doc didn't seem concerned, but I'll be in my weird anxiety place until I get the results.
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Hi Saralmom - I don't know but someone else will. I just wanted to say that you look beautiful in your avatar.0
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Ugh. I am soooo sick.
My youngest brought home a cold last week, now I have it...my chest is KILLING ME and I've totally lost my voice. (Yes, there are people celebrating that fact around me..buwhahahah) Hope it comes and goes. Last December this exact same type bug put me in the hospital for 5 days....but I was on hard chemo....my soldiers should be back up to fighting condition by now...
Famous last words...heh.
Dang.....I never used to get sick...I wonder if chemo is gonna change that never-get-sick thing for me.....
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Hi Everybody. Bumping for a newbie.
Sheila
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Hi all, I am also triple positive. I had a bi-lateral mastectomy last tuesday and am miserable. I feel like a science experiment right now with the drains and expanders. I am having a lot of pain, nausea, and am very tired from lack of sleep. I go to the oncologist next monday to see what my next step will be but am not sure how all this effects the reconstructive process. Any advice?
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Welcome rebeccalynn ! Sorry you are feeling poorly.Have you tried taking anything for sleep?0
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Rebecca-Call your breast surgeon or plastic surgeon. The drains are miserable, no getting around that, but you shouldn't be nauseous unless it is from the pain meds, and maybe they can change you to something else. I am assuming you see your surgeon for follow-up this week?
Saralmom-they always give me my blood work when I get an infusion. I had herceptin today so just pulled out my report. I am not much help. My platelet count is 218,000 in the normal range. My RDW is high, which I guess could mean I am a little anemic. He told me to take an iron pill and see if that does the trick. I hope it is nothing serious for you.
Tonlee-I hope you feel better soon. I am going to get a flu shot on Thursday and hopefully avoid some of that.
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rebeccalyn narcotics make me nauseous. I never took any after my BMX but if you are in that much pain I don't recommend that. Once you get those drains out though you will start to feel better. I found that my sleep was sporadic but I was so tired that I did sleep just not continuously.0
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Hi all,
I am also tripple positive and would like to join your group. Was diagnosed in May, had lumpectomy in June and then again in November. End of June till Oct 6th had 8 sessions of chemo (4AC and 4 Taxol). I am on Herceptin for a year, started Tamoxifen a few weeks ago.
Tomorrow I am seeing my RO and also get the tatoos. Hope to start the radiations next week.
Hope you are all doing well.
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HI Ladies.
Went to oncologist today. PET-Scan showed something on my liver, onc doesnt seem concerned just need to rule out. bones are clear that was a concern. They want to put me in a study for metaplasic ca? chem for 12 wks to shrink tumor, then surgery, then chemo for 6wks. lots to think about..Whats your thoughts on studys? anybody in one? ...Going to university of irvine, in calif...WOW seems like I wont be sleeping like a baby ANYTIME SOON!!!!!.. Thank you all for being here..you really helped me with my knowledge at onco she was impressed:)
Welcome Anita333
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Hi Saralmom, I was looking at your diagnosis date to see how far out from treatment you are and realized we were diagnosed on the exact same day! cancerversary sisters
I wanted to let you know that my platelets have continued to skim along low/normal ever since treatment, as well as my white and red blood count. My onc isn't too concerned because the other counts are ok- neutrophils, etc. If those were out of whack we might be a little concerned, but even then it can just be a virus. I bruise severely- to the point that we did clotting/timing tests a few months ago, but found nothing wrong. Hope this gives you some reassurance!!0 -
saralmom - chemo can injure the marrow which can decrease the platelet production. How far out are you from the end of chemo? Sorry, I can't remember.
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mtnbiker-I am getting ready to participate in a study using a diabetic drug called metformin. It is a blind study where half will get the drug and half won't. Supposedly looking to see if it helps to stop recurrence in early stage bc, after treatment. I guess diabetics with breast cancer on this drug versus those not on the drug had a really low incidence of recurrence. I like feeling like I might make a difference and this is one that most likely wont hurt me.
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Hi rebeccalynn, sorry for all you're going thru. No need to be miserable- don't wait a week, call your doc and get your meds under control. You may just need a different pain med that doesn't make you nauseous or a separate nausea med. The right med will also allow you to sleep. Just let them know what you have now isn't working!! Hope you feel better soon.
Welcome Anita!
Glad things look good on your PET, mtnbiker. It's great that you went in with so much info. What phase is the study? Who is conducting it?0 -
TonLee: I have a cold too and I NEVER get them....I don't feel bad but have no voice and coughing pretty bad but no fever or anything and hope it clears soon or guess I'll have to break down and see the doctor but everyone in our office seems to have it too!
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I had a cold in August (still on Herceptin then and my white counts still a little low) Had another one 2 weeks ago. Thats' more colds then I get in 2 years!
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Lady_Madonna - Did you give your speech and have the dinner with Dr. Slamon yet?0
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Hi again -
omaz - thanks for the compliment re the pic!
lady madonna - that is so crazy that we have the same diagnosis date - and low platelets too. And now that you mention it, I think that's part of what they were doing today as well - along with looking at antibiodies, they were doing the clotting test. All of my other counts were good as well, so I hope like you they find nothing wrong. I did start eating a plant based diet a few months ago, and that can result in a B12 deficiency, and that in turn can cause low platelets. I'll find out my B12 numbers tomorrow. So now I hope it's low!! And that its the answer.
SpecialK - I finished chemo in August 2010, and finished Herceptin in May 2011. Good point about chemo, but I wonder if it can have effects this late?
This all just bugs me - first I have chronic elevated bilirubin with no apparent cause, and now possibly low platelets with no apparent cause. Too many questions for someone like me who struggles with anxiety.
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I did! It was Wednesday night and it was fantastic!! Dr Slamon is kind, warm, charming, funny, and a total gentleman. We spent some time chatting before the event. The event itself covered the latest research in breast cancer / chemotherapy ... AC/TH vs TCH, etc. and was very fast paced. I wish I could have had a printout of the presentation. I forced myself to keep personal questions to a minimum, although I did slip in the one I desperately wanted to know- his opinion on ooph for premenopausal women with er+ bc. He doesn't feel it's necessary unless there's a strong family history of bc or BRCA+. My speech went great and Dr Slamon mentioned the possibility of having me come out to UCLA to speak! I don't know how to post photos in-line but I'll add our photo to my profile.
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