TRIPLE POSITIVE GROUP
Comments
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Steiner, yes, thank goodness it's outpatient. The plastic surgeon has privileges at a hospital that's closer to our home and unlike the hospital where the BMX was done - this one has outpatient surgery services.
I'm now up to four hospitals.
The first one (ultrasound/biopsy/mammogram/diagnosis), the second one (MRI/BMX), the third one (echocardiogram - would-be PICC line - plus, the mothership to the cancer center where my oncologist practices) and the fourth one tomorrow. I'm spreadin' this thing around!
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Congrats to everyone who has been in a clinical trial or is still in one. I work with trialists all the time in my job and you are the ones that shape the face of medicine, even in aggregate. I keep looking for a trial to join, but so far, I guess I'm just too common ;-) I'm but a mere commoner.
Lee, so sorry about all of this! The fun never does end. I go back for more chemo tomorrow and I have stomach cramps tonight and am weak all over. I feel your pain.
Steiner, super cute hair. I did the same thing you did, and got it cut really short, then my hairdresser dyed it blue black just for the fun of it. Might as well have fun with it!
Lago, thanks for the info on the taxol treatments being expensive for the oncologists. I am in that chair easily for 5 hours every week, so I guess I'm costing them some dollars and troubles...but as long as I can tolerate it...I'll keep going.
Ms Tori, how are you doing? Did your vertigo go away yet?
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MsTori, I read about your experience earlier today
from the waiting room but didn't have time reply. I hope you're feeling better by this evening!!
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Pbrain. Ugh. You're barely through one before you're back at it again! Also, I've been meaning to comment on the Bon Viva. Thanks for relaying that insider story! And so much for my lame take on Bone Eve A. I'm chuckling at my lameness/doh-ness right now.
BTW, how are the frenemies? I hope they've straightened their @sses out by now!
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Lee,
Sorry about your TEs. Hope you recover soon!
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Thanks, cgesq.
I was supposed to start Herceptin yesterday but that was delayed due to the infection/Vancomycin.
Now, I'm supposed to start Hercepting this coming Wednesday but who knows how this will impact everything.
Admittedly, I'm getting kind of nervous but trying to keep myself from going too crazy...
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Well, the king pin frenemie is in the EU for a couple of weeks with not so good intentions towards her male coworkers, so I hear. Her husband is a saint or clueless...So for now I don't have to deal with her. I'm heading home to Philly around the time she returns. I do need to get my garage door opener back from her though...I need it for my Christmas cat sitter. I hear you can buy garage door openers and program them from your own system. Anyone know about that? I don't think I'll see frenemie number 1 before I leave for the holidays.
The other frenemie and I have made up, but it is still strained. I feel bad, but I think these ladies just spiraled out of control and fed off of each other in a very mean way. I don't think it was called for. Like I said, yeah, the house was a mess (especially the master bath which was disgusting), but I had a potassium of 2, a hemoglobin of 9, a hematocrit of 26, a temperature of 102 and no white cells to speak of. I just didn't care if my house wasn't clean.
Anyway, I'll stop babbling. Thank you for checking. All you guys on this site are so wonderful. I need to meet up with Fluff in Greenfield :-) We could take our bald selves out to lunch and gossip about how rough people are with cancer patients. It's an eye opener.
BTW, I got two buffs in the mail today. I ordered them about a week ago. They are so comfy on my hairless, sensitive scalp. I'd recommend them to everybody!
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Oh, and Lee, wait on the herceptin if you need to. Do your best not to worry. It is a magic bullet (I love Genentech!) and will work when you need it. Lay low, get better and sleep, sleep, sleep!
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Pbrain - I'm glad you gave us an update! Admittedly, I'm curious about this EU thing...it sounds kind of cloak and dagger (with an emphasis on the dagger, and that might be a euphemism). Is KPF (King Pin Frenemy) the ringleader/former pet walker? You don't have to say - if you don't want to incriminate her.
These buffs - I saw you and MsTori talking about them. Did you have to order from New Zealand?
Re: Herceptin - I'm just nervous that we're getting too far out from my surgery...hey, if you work for the Boniva people then you also work for the H people! Wow!
Re: sleep - I've been taking a lot of weird little cat naps lately.
Re: garage door openers - my mom has one that you can key in a code to open. We used to have one like that at our other house and they're quite easy to use! And IIRC, not all that expensive. I don't think you have to reinstall the opener - just get the keypad but I'm not certain about that.
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Does anyone have insomnia while on tamoxifen? I've been done with chemo since february & started tamoxifen 2/12/12. My sleep is worse than ever - I fall asleep but can't stay asleep and am up for hours at a time in the muddle of the night. Nothing works - I've tried melatonin, ambien, ativan, magnesium. I even took a percocet the other night because i was desperate for sleep! Im wondering if this is causes by tamoxifen? Anxiety? Could it be a sign of BC? Thanks for any ideas.
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Shore, I haven't started on the tamoxifen/AI inhibitors yet, but I suspect they could be altering your sleep. I know that menopause in and of itself can make sleep tough. Are you dealing with hot flashes or night sweats that are waking you up, or are you just having issues actually falling asleep? My heart goes out to you because sleep is a many splendid thing. I am not myself without it.
Lee, KPF who is the perfect 1959 housewife to her and her husband had to take a large project through the FDA. It took over a year to get clearance and she became very close to her Austrian colleagues. She has told us time and again how she has a carnal lust for these poor men. So she has taken her vacation time to go visit them in Austria without a business reason, and without her husband.
Somehow it doesn't make my dirty master bathroom look so bad. Tee hee....
Ok, I'm being snarky.
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shore1 - I finally went to the dr yesterday about my insomnia, which started after my diagnosis last December and which has gotten worse since starting Tamoxifen.
He prescribed a drug called Normison (Temazapam) to take for a couple of weeks to get me back in the "habit" of sleeping. I took one last night and fell asleep just fine (which has never been a problem) but still was wide awake at 3am for 2 hours :-(
Will give it over the weekend but then will likely be back at the doctors early next week...
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specialK - how interesting about the scanner at the airport picking it up. I've flown at least 3 or 4 times now with my port - nothing ever picked it up. I was ready to show them my card, but not needed! I wonder if it is the special scanner you mentioned.
LeeA - I'm so sorry you have to get your TE replaced!
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Pbrain, yes, the hot flashes at night fi wake me up. No problem falling asleep, just wake up in middle of night for hours at a time.
Jennt28, too bad the temazapam didn't help you stay asleep. Please let me know if you find something that works. I see my pcp after christmas & will see if she has any ideas for me.0 -
shore - I too have difficulty sleeping - wake up 5 to 6 times a night due to hot flashes with night sweats. After several nights of that I end up feeling pretty exhausted. My doc also prescribed Temazapam. I take it usually twice a week just to keep myself feeling more rested. On the off nights I take melatonin. When I was off Tamoxifen (took a break) I slept significantly better b/c the hot flashes were just "warm" and didn't wake me up as much.
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pbrain - your post about Genentech reminded me that when I was in northern California in the spring my friend and I drove past the Genentech location between Sacramento and San Francisco - as we drove past I yelled THANK YOU! out the window at the building. You would be eligible for the same trial I did when you are done with Herceptin. Here is the link:
http://clinicaltrials.gov/show/NCT00524277
shore - what time of day are you taking your Tamoxifen? I am on an AI and had been taking it at night and having trouble sleeping - I have always been a problem sleeper, even prior to BC. I switched to taking it in the morning and things seem to have improved.
Here is the buffs site link:
http://www.buffusa.com/sports/collections/original-buff-reg/styles?gclid=CNqE3NK8h7QCFQiqnQodlywA9A
They are awesome because they have no seams and you can wear them a bunch of ways. My DD wears them for fishing pulled up on her face like she is robbing a bank. Combined with sunglasses and a visor she looks like some kind of fishing gangster.
For those who have trouble posting pictures, I am fairly technologically challenged but I upload to www.shutterfly.com and then copy and paste. It seems to work decently and I think you can use Photobucket or Snapfish, or any of those kind of sites. On my October vaccine trial visit we drove and took my in-laws to the WWII Memorial, I made an awesome hardcover photobook for them with all the pictures we took - it was easy and inexpensive.
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LeeA, I am surprised they are putting one back in. Interesting. Let us know how it goes.
Shore, I wake up in the nite for hours sometimes. At least its not every nite so I will make it.
Pbrain, I hope the treatments go better. I heard a lot of people like the buffs. There two longs. One is polar fleece and one is a thinner knit. I know Duluth trading Co.
has them and I suppose Cabelas or other sporting stores will have them too. BTW, I am so happy Duluth Trading opened a store here in Port Washington, that is awesome. They make sturdy clothing. My daughters SO works in a foundry and the pants last, amazing. Ok, sorry, last commercial.LOL!
My MIL wake is tomorrow and the funeral is Saturday. Gonna be busy. so I am about to get behind on this thread. Apologies ahead of time! Much love to all.0 -
moon - will be thinking of you during this difficult time. We will be here when you get back!
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SpecialK-I don't think our vaccine trial and the Neuvax one are exactly the same, are they? They locations seemed to be different, but I didn't read much about vaccine injection components. Congrats on finishing. I was really tired of the every three week thing at the end. I ran out of things to do. My nurse said go to the beach. I to.d her I just drove 9 hours down here (or flew depending on the week), and now you want me to get in a car and drive 4 hours one way to the closest beach. Ummm....no thanks, lol. Hotel pool is fine.
Pbrains-I'm in Greenwood on the south side, not Greenfield so would be much easier to meet up.
Moonflower-don't get too stressed out over this weekend. Take a little time to step away. Funerals are exhausting both physically and emotionally. May you find some peace.0 -
fluff - I agree, the Neuvax seems to be for lower expressing peeps, but may provide great benefit because the majority of BC patients are not Her2+++. I was talking with the nurse coordinator and she was saying that they may be broadening our trial to include some patients who have lower expressing Her2 positivity (like 1+, or 2+) because the AE37 vaccine specifically may be helpful to them in preventing recurrence. Neuvax is a different drug manufacturer also. I feel like we should take a picture together in caps and gowns, lol!
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Fluff, Sk, forgot to say I am glad you are done with the trial. And thanks, its a lot of effort, but we will hope there is a good result! .BTW, if you can't do a trial, make surevto sign the paper work to allow them to use your tissue and sometimes results for testing and research. An easy way to contribute, after all, you sure don't need it anymore! They remove all identifiers before using the stuff, so you don't have to worry about it. Ok, speech done LOL. Much love.
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Moonflwr - wishing you and your family peace and comfort in the coming days as well as safe travels!
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SpecialK - Thanks for the Buffs link.
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moon - keeping you and your family in my thoughts.
specialk and fluff - thanks so much for participating the trial. I can't imagine how tiring and expensive that travel would be. You've helped many women in the future - sure do hope this vaccine turns out to be effective!
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thinking of you and your family Moon
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Here is the breaking news from San Antonio that I was referring to. Dr. Bose is my oncologist. He is really excited about this and hopes that Herceptin and Tykerb can help even more people that were formerly thought of as HER2 negative.
Breast Cancer Genome Sequencing Identified HER2 Mutations as Targets for Drug Treatment
http://www.sabcs.org/PressReleases/Documents/2012/b4f7bddc1335372c.pdf0 -
My sincerest condolences to you Moonflwer and to your family....
Rickythebean..
Very exciting indeed. I so admire people like your mo who devote their lives to scientific research the vast majority of whom never get public accolades and rarely receive financial reward.
My nephew is a post doc researching MS.
Sounds like you're in very good hands.....0 -
It is even more expensive when you go to the furniture capital of the world and buy a new bedroom set and some home accessories!
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Tonle - Yes I'm done with reconstruction! Yeah! Very pleased with my results. Now on to finishing Herceptin this month and getting my port out! The light's getting brighter every day!
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So glad Dechi
It's the end of this journey that I like best so far...the clean up process....ha!0
