TRIPLE POSITIVE GROUP
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Hi ladies! I have been following you all on here today, but,was completely out of it all day because...today...my doctor gave me a lot of extra steroids and antinuasea meds...because...Today...was my LAST chemo tx! That's right! Number 6! Echo tomorrow! Nuestula shot...however you spell it and then bmx on nov 6. I am goona have to vote early. I will post how things go with the echo tomorrow. I am interested in how it goes. Now I am waiting for the violent throwing up spells to begin...:( maybe they won't this time. But what happens this week...it is the last chemo.:)
Ashla-I am super excited for you. Congrats! I am right behind you in tx!
As for my MO...three weeks ago I told him I was due for an echo (thanks to reading about all of your schedules) and he did not order one. He kind of dismisses my suggestions sometimes. I figured he just has a lot on his mind. But, today I saw him and we discussed surgery and he said I was pushing the limits on the day for surgery since I would only be three weeks out from my last chemo tx, my bs picked the date, not me. Ihe also said "i see that you are doing a bmx ...we tell you the hou have a choice right?" I told hom yes, it eas my decision. he did not reply. he also said that I was over due by two weeks for an echo. ( reminded him three weeks ago) So I need one stat. Not feeling good about this. I then asked him what we would do if there was any cancer left after chemo? And he said "surgery, that's it. Then we hope it works. More chemo will not help. Only 25% of patients have no cancer left after chemo. That's why we hope the surgery gets it. You have been given the standard care" and the he smiled and patted me on the back and left the room.
Hmmmmmm. I did not feel great about this conversation. I don't want to overreact. I double check all of his decisions. I know it is standard care. Maybe the truth hurts. I am going to do a trial... For sure...I am working on getting the AE37. Maybe it will be in phase 3 by the time I am done with herceptin.
Hope you are all having a great evening:)0 -
Jennifer, I am in the AE37 trial. So is specialK. I just finished the biggest chunk of visits and now am on the six month visit. It is a pretty decent commitment given that I went to Wake Forest in Winston Salem, nc, every three weeks for 8 visits. It is a 9 hour drive. SpecialK goes to Washington, D.C. The nue manager of the program says she expects them to release an update at the San Antonio symposium this year. She also said they have been talking about phase 3 for a while ow, but she doesn't know when it will start.
You don't note if it was in your lymph nodes, but I would feel confident that with the chemo and herceptin, and whatever hormone therapy you take, and the bmx, you are doing everything possible. Does his 25% comment include people at all stages? For example, my whole tumors was removed during my biopsy with close, but clean margins. At bmx a month later, there was no change. I am hopeful that since it was not in my lymph nodes, I have a better than average chance that everything I did after killed any potential remaining cells.
Start aging a lot of protein. LOTS. And take lots of vitamin c to get your immune system built up so you can be strong for surgery.0 -
Jennifer - Congrats on finishing chemo - Yes!!0
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And Nicky - that is great news! I wonder if they are doing more neoadjuvant chemo now.0
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Congrats to nicky and Jen! Yay!
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Fluff- thanks for the tip. Good advice. I need to eat more meat. I keep forgetting that your diet during chemo is different than your diet after.
I spoke to the trial coordinator and we are hoping that AE37 goes to phase three when I come off chemo. I am excited! We might even be able to get it here unless it is voted down.
As for lymph nodes...my BS said things looked good, has told me that all along. No promises til surgery of course. But a positive attitude about everything.
Then...dun dun dun...(that's me singing lower each "dun" ) dr eeyore told me a couple of weeks ago that he thinks there is one lymph node in question. Who knows for sure til surgery????:/
So I wait.
As for my MO...I am not sure what stage he meant. He is a bit of an eeyore if ya know what I mean:(
He is very smart but lacking in bedside manner or positive thinking. Tough fit for me:/
Thank you moon and Omaz! I am gonna be glad when I make it through this week:)
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Nickythebean: wow! Fantastic news! I am wondering now if we have similar tumours after reading that you said it was like spiderwebs. Mine is called multi-focal or multi-centric and is growing in three distinct places they can see but all connected in a spiderweb. I am one treatment behind you having just had my 6th. I see my oncologist this week. I can no longer feel the lump in my lymph node and I can't feel the largest lump in the breast anymore either. The other two lumps I never felt, just saw them in the ultrasound. My protocol though like yours did not include tykerb. In December I move on to FEC and Herceptin. Scared about the next protocol because it may have effects on the heart but I've been trying to keep working out (walks outside and lifting light weights inside...and my one year old!) . Also, I have not lost my hair with this protocol but I think I may with the next round.
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Forever, mine is also multiocal and intertwined like spiderwebs. Nobody could ever feel any of mine even after mine was diagnosed. The tumor cannot be seen on mammo or ultrasound, even though it is giant (hundreds of calcifications could be seen on mammo, which is how it was caught, but no dimensional tumor looking thing). Just MRI. Thankful for MRIs!!
Sounds like we are on very similar paths. It will be nice to compare notes with you!! I am having a lot of side effects on the Herceptin, Taxol, and Tykerb. Mostly due to the Tykerb I think, though. Wondering if Tykerb was mentioned as an option for you?
Ok, this is gonna show my ignorance, but I haven't thought much about my next cocktail yet. I thought I was going to get AC (which includes the "red devil" right?) but now there's talk of FEC plus Herceptin. What is FEC?0 -
Pbrain....
I had tomotherapy rads and it was face down. The rad exposure to the lungs and for me because the bc was in the left breast to the heart was much less.0 -
I have to play catch up, but wanted to tell everybody I'm off to the hospital. Wish me luck. I hope they let me come home! I got a dog to walk. ;-)
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Best wishes Pbrain......another big step toward a life free of bc.....xoxo
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Good luck Pbrain. You'll do great
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jennifer - Congrats on being done with chemo! The trial that fluff and I are in is two armed - AE37 and GP2. You are sorted into either arm depending on your tissue typing. You would not know if you would be sorted into the AE37 arm unless you know your histological type. Fluff went into the AE37 arm and I went into the GP2 arm. They are both vaccines but different from each other - you also have no guarantee about getting the vaccine as you may be sorted further to the placebo arm, so this requires some careful consideration.
nicky - I think the difference in the drug regimens is geographic location.
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I need you guys! So far, I haven't posted much but have been reading a lot! Starting to get jittery - bilateral mx scheduled for Thursday afternoon (October 18). Up till now it seemed surreal, now it feels "tooreal." Got a borrowed recliner with a power lift -- think that will be very helpful. Lots of PJ's, etc., etc. Been shopping to keep from thinking too much about the real reason for all this. A fellow BC survivor and I were saying that there is so much concern about getting ready for surgery and reconstruction, sometimes we forget that the actual cancer. I feel pretty "special" because I am triple positive with ILC. Not really sure how/if the lobular factor affects things.
Appreciate all of you and ask for your support.
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powermom - sounds like you have all the shopping done, lol! It also sounds like you are prepared well. My DH got a genious thing from Home Depot - it is a lamp remote - costs about $10, totally worth it. It keeps you from having to reach to turn off the light. It was great after surgery. I also recommend getting a basket so you can keep everything close - meds, pad and paper, phone, glasses, tissues, lotion, etc. I used a clean shoelace to string my drains on to shower - wore it like a necklace, worked great! Good luck and we are here for you!
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nickythebean - fantastic news - yay!!!
jennifer - yay for being PFC!!! Wishing you minimal SE's after this last round. Your onc does not sound like he has the best bedside encouraging manner...
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pbrain - best wishes on your surgery today!
powermom - sending you hugs and support!
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Good luck pbrain. Hope you are home to walk that puppy ASAP!
Lago we missed you!:)
SpeacialK-I am hoping that the trial is in phase three before I am done with herceptin. My trial nurse seems to think they will not even have a placebo in the mix for phase three. Gotta get closer to the end if herceptin to review all of the info again.0 -
Thanks for the explanation, kayb!! Does anybody know the reasons to choose FEC instead of AC, or vice versa? Just wondering why initially he was thinking AC and now he's talking FEC.
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I'll bet a thousand dollars that's it. I am doing Herceptin and Taxol now (and Tykerb), and he mentioned for the next cocktail doing FEC and continuing the Herceptin. He is very clinical trial focused so I'm sure that's what he has in mind. Thanks!
I don't know anybody on the Herceptin/Taxol/Tykerb combo except me, but I'm sure I'll have plenty of company with the next cocktail. Not looking forward to those SEs!!
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Yeah JEN!! That's AWESOME!! YOU MADE IT!
Solt, glad your heart function didn't decrease! Woot.
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Home, done, long (!) day because they did the dye and wire in the morning and during the surgery I got the port.
I am so dang dingy right now.!
http://www.youtube.com/watch?v=txqiwrbYGrsThanks for everyone's well wishes! ;-)
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Oh Pbrain--yay it's done--u got alot done today. Rest now.
Jen,Nicky.Good news for u 2.
I'm getting confused now--what's happening to whom or who. Awhole lot has been happening.
Powermom--sorry u'r here but these ladies willl be able to tell u anything u need to know so come here for answers or just to talk. (well I don't know anything, but everyone else does.)
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Yay pbrain for being home and done with today's procedures!
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Thanks everyone! I have to go crash. Anyone hear from Rozem yet?
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We're waiting for Rozem---
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Waiting for rozem too...
Jenn0 -
She'sprobably pretty much out tonite don't u think?
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powermom...my husband came home with those glow necklaces that you can connect to hang my drains on. they were great, and plastic.
Jennifer, you might be right on no placebo for phase III. I think our paperwork noted someplace that if you were getting the placebo, you could have the option to participate in phase three again. According to the nurse manager at Wake Forest, there are roughly 200 peeople currently in the trial. (not sure if that includes the Greece site), and about 19 of those were at wake Forest. Of the 19, only three were remotely local. The rest came from all over. Since expenses are not covered, you can really rack up a bill....especially when you are in the furniture capital of the world...and you need some new bedroom furniture, lol.0
