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Old 10-06-2004, 08:14 PM   #1
Kristen
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Good Morning Shannon,
I went out to cyber space to see if I could find out anyting about Taxol and Mugas. Nothing on Taxol, alot about A. One site is heartdisease.about.com.
This is my opinion and from my experience with Taxotere, it stays in your body for along time, I don't know if A does the same thing. I would want to know first what is causing my points to go down and not worry about Herceptin now. If A. did do permanent damage to my heart, I would then see a cardiologist to do a risk assessment (if mugas come up) and you need herceptin, then I would weigh the pros and cons of each.
All these wonderful drugs to extend our lives or put a stop on the whole thing does come with a price, some have neuropathy, I have some hearing loss from Carbo. Osteopenia from Chemo etc. I wish you the best tomorrow at your appt. and hope they find out why the points keep dropping. take care k
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Old 10-06-2004, 08:27 PM   #2
Lolly
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Shannon, I found this bit of information, not sure if it applies to you, but agree with Kristen that any possible reason for the drop in heart function needs to be explored. Hope you can get to the bottom of this.


"...Remember that with this test, images that are taken during irregular beats are rejected. That's why patients with multiple odd ventricular beats like PVCs require longer scan times to gather enough "good data." MUGA is not suited for patients with a really irregular heart rhythm. Echo has the same problem but not as badly."
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Old 10-06-2004, 10:07 PM   #3
Cathy W
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I am currently doing herceptin. I get an echo every 3 monthes which shows the ejection fraction. The mugas are typically done if you are on AC. My first muga scan showed a rate of 77%, my last echo showed 52%. My onc said he wouldn't worry till it got below 40%. I have done AC, and taxotere, carbo, and herceptin, with zomeda as well.
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Old 10-07-2004, 01:26 AM   #4
Rozebud
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The drop to 42% is still probably from the A/C.
Normally, I'd say push for the herceptin, but not if your MUGA stays at 42%, as if you reacted like that to the A/C I think there's a good chance it could happen with herceptin as well. Can you get another one in a few weeks or months and hopefully take some coq10 or something to boost it up and then beg your onc for herceptin? If you get it, just make sure they are testing you with MUGAs every 3 months. I'm on the study I've been in the very low 50s for a while, and my onc said she'd let me go to mid to high 40s, so I know there is some flexibility.
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Old 10-07-2004, 04:36 AM   #5
Shannon
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Hello again ladies,

I find myself once again, coming to the message boards for help. I am thankful that Debbie asked about the muga scan and herceptin. I have a two part question:

1. Although I am in a clinical study for herceptin, I am in the "watch and see" study to do the regular treatment without the additional herceptin that is 4 cycles of AC then 12 cycles of Taxol which I have three more to go through now. Question: Being a stage 3b her2neu + should I push to get herceptin?

2. Which this may effect the answer in question one. I had a muga scan when I began this crazy adventure and I was at a 58%. Good, not great. Twenty days after I completed the 4 cycles of AC I was tested again with a MUGA and went down to a 48% (even if I was in the arm of the study to recieve herceptin I would have been dropped as they want you above a 50%) .... 7 cycles into 12 of Taxol they did another MUGA (because it had dropped so much) and now I am at a 42%. Seems it has dropped another 6 points since I have been on Taxol!

At what point do I freak out? I go in on this Friday for hopefully my 10th treatment of Taxol. Reoccurance is always in the back of my mind and now I think, what drugs will they give me? Can I afford to loose another 16 points? Can you do anything to raise your points?

As always, I admire, respect and value your opinions... you are beautiful people I turn to in the middle of the night, when I am alone at this little machine that has way too much informaiton that is not reliable or given by a person who hasnt gone through it. Any thought would be greatly appreciated!

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Old 10-07-2004, 03:27 PM   #6
Shannon
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THank you again ladies... I must admit, I have not slept much since the results came in. I hate waiting a few days to see the doctor, my fault for demanding the results. I have about 20 questions so far now even more since your postings to ask. I will keep you posted.

Any thought on the port being used rather then a direct shot in the arm for the MUGA test??? Or that this is the third test and each test gets shorter times when the photos are taken. First appointment was about 20 minutes each asngle, the latest was from 8 minutes to 12 minutes.
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Old 10-07-2004, 11:41 PM   #7
Rozebud
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No, but I had the same two experiences. Last MUGA was at a new place - they accessed my port instead of vein since it was already in from treatment next door at the cancer center. Also the pictures were MUCH less than the 20 minutes each the 1st 3 times. Maybe just different methodologies and technicians?? (I only know because I didn't get my full 3 20 minute naps in!)
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