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Old 05-19-2005, 10:55 AM   #1
Cindy H.
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New scans showed growth in the lungs while on Xeloda so here I go losing my hair for the 4th time. I swear I'm going to walk around bald this time! I still feel great and my bloodwork was normal. My onc says I'm the healthiest stage IV patient he has. Thank goodness for Abraxane, otherwise my choices would have been slim to none. I also get a brain MRI next week. I'm glad...it's important to know what's going on in my noggin.
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Old 05-19-2005, 11:35 AM   #2
StephN
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Hey Cindy -
Those pesky lung mets! Well the info coming out on Abraxane is pretty good, so I am glad you can have it. Being otherwise healthy will give you an edge as you get in to this drug.
There are very few on this board who have been getting Abraxane, so your input and followup with us will be important. You have some tough mets, and you just have to be tougher!
You must have a couple of cute wigs and a drawer full of great hats, so the hair is just a side issue by now ...

Thanks for letting us in on your latest.
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Old 05-20-2005, 06:17 AM   #3
dberg
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Cindy,
I was dx last summer, Stage 3 nasty stuff, am 8 weeks out of chemo (no Herceptin though), and have just a couple of rads to go. At my last appt my onc told me the rad onc had found a few tiny nodules on my lung during the preliminary CT scan for rads. Neither of them seem to be very concerned and said they'd keep an eye on them. The rad onc told me these things could be from a past infection and usually turn out to be nothing. I am having difficulty being calm about these "nothings" and wonder how you found out about your lung mets.
I wish you the best on your next tx!
Diane
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Old 05-20-2005, 07:41 AM   #4
jessica
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I just finished Abraxane...I did 3cycles of Abraxane/Herceptin every 3 weeks. It was so great not to have to do the benadryl pre-meds!!And it's fast-30mins for Abraxane, 30mins for Herceptin & you're out of there!
Unfortunately for me, the regimen wasn't terribly effective-I have a single pesky lesion in my liver & it appears to be a little less active per PET, but now I have a questionable lung nodule...HOWEVER, on my last cycle the nurse noticed that they weren't dosing me correctly!!They were giving me triple dose Abraxane & only 1/3 dose Herceptin...OOPS! I think the disproportionate dosing significantly compromised the synergy between the two drugs...I think we got a little smoke but we needed FIRE! (I'm filing a formal complaint for their negligence w/the hospital). Now I've returned to a long, loving relationship w/Taxol+Herceptin & this time we're adding Carbo. This'll do the trick, I know it.
One thing you might want to look into...They've just completed a trial dosing weekly Abraxane/Herceptin with good preliminary data AND MINIMAL HAIR LOSS @Memorial Sloan Kettering in NYC! When I was doing my Abraxane research I made contact with a woman in the study...she'd been in 8 mos & only minimal hair loss. Maybe your onc would be willing to explore this with you. On one hand, it's only hair BUT it's a significant loss AGAIN! I'm bald again too & was willing to explore any reasonable treatment option to preserve my hair.
I've maintained my quality of life, teaching Pilates, training clients, everything.When I have my "drag" on (wig,eyelashes, etc), you'd never know...but the bald head, even bandanna, is a dead give-away. I just want to endure this with as little disruption, attention, etc as possible.I have to admit, there is some strange 'comfort' in atleast being familiar with being bald again. And this time around, I do fell less conspicuous when I drive around bald, or decide to slip my wig/bandana off for a moment to give my poor cranium a break.
Wishing you the most luck. Hope this info is helpful. Please feel free to contact me @jmalucas@aol.com if I can pass on any add'l info.
Until then, take good care!
Prayers, Faith & Courage!
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Old 05-20-2005, 12:38 PM   #5
StephN
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Jessica -
I don'tunderstand this goof-up with your Herceptin dose!!!

The way it goes for me: my med onc writes the orders, this goes to the pharmacy and it is the PHARMACY who mixes the drugs based on the doc's orders. The nurses only lets the pharmacy know when the patient is there and to get the drugs ready, then administers them. They also have ANOTHER nurse come in and verify the label on the drug against the orders in my chart AND that I am the right person as verified by my wristband.

So, I am confused as to WHERE in the chain on command the weekly dose of Herceptin vs. the tri-weekly dose got ordered.

What a mess that you just do not need!
Well, we know that Taxol is good and has worked well for many of us, but that is something that you had not planned to have to go back to, right?
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Old 05-20-2005, 03:08 PM   #6
*_sally_*
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I never realized that everyone had to deal with pharmacies and hospitals every time they got treatment. My Dr.'s office does it all 10 feet away from your treatment chair. Many times it is the Dr. who is checking the drugs and doseage. There is always alot of verification between several people. No room for mistakes. Sally
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Old 05-20-2005, 08:03 PM   #7
jessica
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Don't kid yourself...there's ALWAYS room for mistakes~human error. Happens ALL the time, despite the innumerable checks, re-check, "what's your name" "what's your b-day" confirmation. We are all fallible, including our oncs, including our nurses...How many times a day does your own mind wander, even just a little bit, while you're working?
It can happen in a private practice pharmacy (yep, happened there too-my bag of drug came out & they were getting ready to hang it, but the 500cc bag was only 1/2 full-the pharmasist forgot to mix the saline w/the drug before sealing the combo & sending it out. Atleast that time, the mistake was caught BEFORE the first drip dropped), and it can happen in a big Cancer center.The reality is, your onc nor YOU should not have to double check the pharmacist's work or the nurses work IF THEY ARE DOING THEIR JOBS PROPERLY!
Believe me, I was pi**ed!!! This mistake was due to a too hasty interpretation of my treatment order & flow sheet when I switched from weekly Herceptin to the new combo of q3weekly Abraxane+q3weekly Herceptin.Ultimately it was the PA who came forward & admitted fault-she made a mistake transcribing the order from my chart to the order/flowsheet...simple human error, with major potential ramifications.
There were many occassions for many different clinicians to assess the dosages & notice that they were disproportionate. Thank God for Jill, the nurse that finally looked & questioned the regimen.
Even though the clinical managers have been very apologetic, readily acknowleged their oversite & have been very orthcoming with assisting me straighten this out, I'm still pursuing reparations. I don't believe that I should have to pay for a treatment regimen & service that I did agree to, that was ineffective,has potentially jeopardized my health & now requires addtional chemo.
I wish I didn't have to, but I command my treatment, rather than sitting & making happy polite conversation or watching Oprah.I confirm which labs are being drawn & ask that they start my Herceptin while we wait for lab results. Every time a bag of drug comes out, they confirm my name & dob, & I confirm the order & check the volume of each bag.Now I'm waiting for someone to pay ME for doing their job too...
When you get to our level of complex care, there's bound to be mistakes. Most times, you are none the wiser...
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Old 05-23-2005, 08:57 AM   #8
Cindy H.
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most mets in the lungs...have a 2cmx4cm upper right lung and a smattering of smaller tumors which showed on ct scan. I think all of the meds I've been on have kept the cancer from taking over but have not gotten me near remission.
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