TRIPLE POSITIVE GROUP
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ok ... met with my onc today. here's what i learned. my her2 was positive (i already knew that) and my FISH report was 6.6 from one lab and higher than that from the other lab. both labs showed her2 positive. he's going to send my tissue for the oncotype test. he said there's a chance that i could be in the low grade on the test and not have to do chemo. anyone else have this happen ... that you have high FISH numbers, but low grade OCHO? the onc said it was unlikely that i would be in the low grade, but there's always a chance. anyone have any thoughts on this? again, thank you for your help!! (oh, and i will definitely have radiation and the anti-estrogen drug.)
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yaya- I think it's probably a little unusual to send HER2+ for oncotype but it should be interesting. Sounds like an onc who is thorough and wants as much information as possible. I *think* that HER2 is figured in to the oncotype DX score.0
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Yaya I agree with Omaz that it's unusual to do the oncotype for HER2+-My onc didn't even consider doing an oncotype because the FISH was conclusive. She told me that the oncotype would automatically be high for a HER2+ tumor. The more info you have the better-let us know how it turns out.0
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thank you, dragonfly and omaz! i loved my onc. he was referred by my surgeon (whose wife used him for breast cancer, too.) so are the FISH numbers for me considered high? is there any hope for not having to take chemo? does the oncotype ever come back with better results than the other HER2 and FISH reports? i'm so curious about this.
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yaya - I asked if the FISH was quantitative - in other words is it worse or better depending on the actual value. My onc said that positive is positive. Would be curious to know what others may know. FISH is 'fluorescent in situ hybridization' or something like that. It is a very accurate way to determine if you are HER2+.0
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YaYa be sure you insurance will pay for the test. My onc didn't send mine for an oncotype either.
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I asked my onc about the oncotype testing and she said since I was her2 pos, There was no reason.
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Hi gals!
Just wanted to chime in about the oncotype testing. When my oncologist talked to me about this test... she told me that it is a expensive test ($3000) and the outcome of the test would not effect her treatment recommendations for me. With the HER2+ status she would recommend chemo regardless of the oncotype result. My understanding is that the oncotype is a great tool for patients who are not HER2+.
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I found a link regarding the oncotype and HER2+.
http://her2support.org/vbulletin/showthread.php?t=35658
Maybe this will help make sense of it.
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Wow. The last few days have been tough. On Friday afternoon, I had to take my husband to the ER and they wanted him moved to a bigger hospital in Vegas. He didn't want to go via ambulance so at midnight, I headed out and got him to the hospital around 1:30 am. Got him settled in and then I turned and came home. He had his gallbladder out on Sunday and still in the hospital.
Today was my first Herceptin only treatment and that was nicely weird. Saw the oncologist first and then off to Infusion. They gave me fluids while I waited for the Herceptin to arrive from the Pharmacy. Half hour treatment and total of about an hour infusion. What a difference and no cold caps either. Finished that and went to the hospital to spend time with hubby who is anxious to come home. Hoping tomorrow they release him - all depends on whether his fever is gone.
Rads to begin 11 July!
Arlene
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lago, vmarie, christean, and omaz, THANKS again for your helpful comments. i'm still confused why my onc wanted to do the test and i certainly hope that insurance approves it! i'll know for sure when i go back for the report two weeks from today. still lots of questions.
arleneA, so sorry about your hubby and especially sorry about the driving you had to do. i hope he improves quickly and can come home tomorrow. and congrats to be at the stage where you are taking herceptin only. YAY!
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Hey Arlene I am sorry to hear about your husband and you have to go though his but thank goodness he is ok! Glad to hear about your H TX no palpitations! Oddly enough my Hubby found a lump in the exact same spot my was and we are awaiting the results of his biopsy now. The know it was not a cyst and he had a mammogram last Thursday. What coul be the odds? I will be floored if he has it.. Here's to praying.
Lago in so happy your exchange went well. You are almost done with the chapter !!0 -
Thanks YaYa and NMoss. Welcome, YaYa....we hate welcoming new ladies but you are in a good place where you will get lots of great information and support.
NMoss: OMG, I can't believe your hubby has a lump and I'm praying it is nothing. I think the odds are slim (that's my prayer). BTW, I still have the palps but they say they have nothing to do with chemo and Herceptin; however, my onc will do more than the normal MUGAs to make sure my heart isn't impacted. Hope I can make it through all 18 H TXs.
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Lago: Congratulations. I know how happy you must be!
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Ton Lee - I had stints put in, they were plastic tubes. The problem is that if your tear ducts are swollen and there is irritation they can actually grow closed during the healing process. My opth left the stents in for 4 months after I finished chemo - the stents work like a place holder and keep your tear ducts open during the healing process. Occasionally this doesn't work and the permanent stents (glass tubes) need to be put in. I'm really happy that I had the stents. They knocked me out for the placement, and it was kind of sore for a couple of days, after that I didn't even notice them and the tearing stopped. They tried the eye drops before I made this decision and they didn't help at all. At the end of the 4 months the opth removed the stents in his office, it was fast and easy, I was in and out in about 10 minutes. Good luck!! I hope the tearing gets better soon for you.
Linda
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Arlene: My palpitations usually start within about 15 minutes of Herceptin infusion and if I get it really slow during that time, it's not too bad. Then they can speed it up and I've done fine after that. But if they start it out like everybody else, boy my ticker gets to thumpin'. Does yours do that?
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TonLee - I am planning to get fitted for a sleeve regardless before I fly.
dragonfly - I have the same soreness/stiffness (like I worked out too hard) but mine is lower body after my first H only infusion. Still have it but not as bad How weird is it to go in and not have chemo? I sat on the other side of the room from my usual chair.
ArleneA - you poor thing! I am glad it was the gallbladder, not something more serious. Symptoms for that sometimes feel like a heart attack. Sounds like a lot of skirmishing around in the late hours though!
nmoss - you have got to be kidding me! I so hope it is a lipoma or cyst. Sending good thoughts to both of you.
YaYa - I know you don't want chemo but I wouldn't risk not having it if you are Her2+, I think it is pretty much a given unless you're a serious gambler. Also make sure they don't do the oncotype test without insurance permission. I had that happen during my US guided biopsy - my BS wanted the Agendia Mammaprint test - didn't get an insurance referral and I got a $5,000 bill! My insurance does not pay for it because they consider it experimental even with FDA approval. After 2 insurance denials, my BS office had to contact Agendia and have the billing adjusted off. This took several months. Just sayin...
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Lago- so glad all went well last week! Man u bounce back:)
I am getting ready to hit the chair for #6!!! I am so excited!!!!0 -
Dragonfly: I'm going for my 4th Herceptin alone treatment tomorrow. I have had the worst joint pain in my hips starting within a week after the treatment to the point I can hardly get myself up off the sofa. It goes away though and last treatment it wasn't as bad. Hopefully it will get better each time. Same for you I hope.
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kriskat - Congrats on number 6!!!0
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yay kriskat!
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YaYa, I'm with the others. I was told no Oncotest because I'm Her2+. Positive is positive is what I was told.
Thanks Linda...my tear ducts have resolved....I appreciate the feedback.
So you all think I should get fitted for a sleeve? When I went in for evaluation she said I didn't have LE, commented on my great range of motion, and that I didn't need a sleeve or to come back.
Now I'm confused. I had to cajole my Onc to give me the referral to the LE specialist even when I had the cording issues!
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TonLee it is a recommendation to prevent LE. My PS recommended but did say I must wear them when flying. You really need to think about this. You can always get it and not wear it but if you don't have one you can't wear it.
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I agree with lago. Get it, then you have the choice.
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You now what's funny? My surgical onc dismissed my cording, which was quite pronounced after surgery for months. I went to him with printouts of research discussing cording, and predisposition thereafter to lymphadema. He blew it off, but did give me a referral to a lymphadema specialist. It felt like he was sort of patting me on the head, just to appease me. It all resolved with stretching and time. Well, this week I am getting the once-over for a clinical trial and my surgeon has that I had lymphadema in my chart!!!!
And Lago is right, my specialist presented quite a few sides to the coin with a sleeve and flying. For me the risk just wasnt there, but if you at least get it, you will always have the choice.0 -
geewhiz - I guess you made an impression on him!0
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Geewhiz I wonder if that's the only way he could get your insurance to cover the cost of the sleeve or PT?0
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You have to have a DX of lymphadema on the RX for insurance to cover any type of compression sleeve, stockings etc.
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Thanks Sewingnut...that's what I was told by the LE specialist...she wouldn't order me a sleeve because I don't have LE....or, I should say she wouldn't order it and bill my insurance...
My Onc did the pat on the head thing about cording as well (which is why I had to basically cajole him into just getting a referral for an "evaluation." I expected it to turn into LE, but I just continued stretching and doing my normal workout routine and it went away. Doesn't mean it won't come back.....
Gah. I'm going to ask around. I would like to have it just in case.....Otherwise if something happens in the air, my husband will be tying clothes around my arms!
Oh wouldn't the TSA love that!
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