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Old 08-05-2006, 01:47 PM   #1
sassy
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muga trends

My onc has agreed to keep me on herceptin into the second year (completed first year June 10) until new data is released or my muga drops. I had been having echos staying at 60 until May 06 when my onc switched to muga. My muga was 55 and I am now due for another muga. I assumed the difference between the 60 on echo and 55 on muga could have been a variance of the tests. I am hoping my next muga is at least 55.

Has anyone experience a drop in muga after one year on herceptin? I was under the impression that a drop was more likely to occur during the first few months of treatment.

Thanks for any info.
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Old 08-05-2006, 04:31 PM   #2
KathyA
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Sassy,
I've had several MUGA's and they fluctuate in a 7 point range. I've been on herceptin since May 2005.

I've ranged between 58, 65. My onc is fine with this.

God bless
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Old 08-05-2006, 06:09 PM   #3
Becky
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A drop in heart function can happen at any time in the process. However, you need to take into consideration that you used 2 different tests and the only way to compare is to compare Echo to Echo or Muga to Muga. So... there probably is absolutely no different between the 2 readings.


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Old 08-05-2006, 06:11 PM   #4
Bev
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Hi Sassy,

Started Herceptin last November and my scores have been creeping up. I did switch from MUGA to Echo recently, and had a 70! Higher than the baseline of 65 on MUGA. So I think there may be some subjectivity in how these tests are read. I didn't ask so I can't say for sure. I prefer the Echo because you don't need to do the nuclear IV. I would be interested in anything members have to say regarding these tests. Will stick with Echo if they let me. Bev
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Old 08-05-2006, 07:46 PM   #5
Maggie
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Hi Sassy, I started Herceptin in November for 1 year. My Muga scans have been going down gradually, and this last one showed it has dropped 11% since I started. My onco feels I should stop. I am stage 1. ER/PR neg/Her2 3+strong..
I have been very sad these last two weeks and haven't been on the board since last night. Feeling a bit better now!
I would be interested as to why your doctor switched to a Muga scan.
I hope you continue to do well on Herceptin..
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Old 08-05-2006, 08:03 PM   #6
sassy
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Maggie,


I have not asked my onc why he switched to muga from echo. I assumed it was because I was getting close to end of one year of treatment and he wanted accuracy of muga. I will ask him for sure next time.

I give this board credit for my being able to continue treatment into my second year. I have learned so much from everyone here. My onc respects the knowledge that I have gained and discusses everything with me to great lengths. I feel he is willing to continue because of my high risk and my understanding of my treatment and prognosis. This week we talked about the tykerb compassionate use and use of zometa for early stage women on AI's. He has told me for several months that approval for the Zometa is in the offing and I should be able to get it soon. My insurance has declined to pay since I do not have bone mets, but we both want me to get on it as soon as possible, both for bone loss (I am on Lupron and Arimidex) and the possibility of prevention of bone mets.

I am thankful to be NED and plan to stay that way thru faith, prayer and the miracle of medicine!

Sassy
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Old 08-06-2006, 07:56 AM   #7
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Have you had a bone scan for osteoporosis? I had evidence of osteoporosis so I have been on Zometa every four months (they run it the same time as my Herceptin). Insurance pays for it.
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Old 08-06-2006, 07:57 AM   #8
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Sorry--that last "unregistered" was from me. Every time I post and then go back to the list of topics, I become unregistered and have to log in again. Didn't notice that I had become unregistered again until after I hit "send."
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Old 08-06-2006, 10:54 AM   #9
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I have had a bone scan, but not a bone density test. I think one is scheduled for one year after starting Arimidex. I took fosamax for a while, but had problems with it. Taking lots of calcium and hoping to get Zometa soon.

Good to "see you" Val.
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Old 08-06-2006, 08:21 PM   #10
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I got a bone density 2 days after getting my ovaries removed (so I could take Arimidex). I was just on the edge of beginning osteopenia in the lumbar region. Since I was getting Herceptin, my gyne and onco conferred and decided to give me Zometa every 4-6 months. In May, I got my 3rd one. Since I will finish Herceptin after 16 months in September, I will not get anymore. I will say that I told my onc I wouldn't take anymore as only a bone hardener (but I would take it if I ever got mets to the bones). I got nauseous with the dry heaves and 101 degree temperature - basically very flu like. It was worse with the first dose. We will be switching to Boniva and try that in November (as it will be 6 months since the last Zometa by then). Zometa is no walk in the park (and you do have to watch out for the osteonecrosis of the jaw - a rare but very serious side effect).

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Old 08-19-2006, 02:58 PM   #11
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You look gorgeous without your wig! Wish I looked that good
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Old 08-19-2006, 04:53 PM   #12
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Have you all read the latest report on the increase in %'s of heart problems with patients taking herceptin? First reports had it at 4-5% but new reports have it at 28% of the patients getting heart complications.
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Old 08-19-2006, 08:05 PM   #13
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Wow - that is very scary - 28%. Thank you for the information.


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Old 08-20-2006, 04:12 AM   #14
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It seems to me one is more likely to experience heart complications from Herceptin if you prevciously had AC chemo as the Adriamycin is very hard on the heart....anyne else told this?
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Diagnosed at age 49.99999 2/21/2002 via Mammography (Calcifications)
Core Biopsy 2/22/02
L. Mastectomy 2/25/2002
Stage 1, 0.7cm IDC, Node Neg from 19 nodes Her2+++ ER PR Neg
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9/2003 Stage IV with Mets to Supraclavicular nodes
9/2003 Began Herceptin every 3 weeks
3/2006 Xeloda 2500mg/Herceptin for recurrence to neck nodes
3/2007 Added back the Xeloda with Herceptin for continued mets to nodes
5/2007 Taken Off Xeloda, no longer working
6/14/07 Taxol/Herceptin/Avastin
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5/29 2008 Back on Taxol w Herceptin q 2 weeks
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7/2010 Back to walking a mile a day...YEAH!!!!
9/2010 Nodes are back with a vengence in neck
Qualified for TDM-1 EAP
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Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
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2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
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2/8/2012 Gemzar stopped, Continue Herceptin
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Old 08-20-2006, 05:19 AM   #15
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I just saw my onc and I will be starting back on herceptin after 4 months off at the end of the month. I have had muga's and recently an echo. It seems my heart is no longer enlarged but my score is 48. He is sending me to the heart institute to get my next muga and is putting me back on weekly herceptin to try to lower the heart risk. I'm happy to be back on it. I also have bone loss and the beginning of osteoarthritis so am on actonel. Along with arimidex I take CoQ10, calcium and Vit D, daily vitamins, magnesium, omego 3.....am I missing something? I am on herceptin indefinitely....depending on my heart.

Cathy
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Diagnosed Oct. 2004 3 cm ductal, lumpectomy Nov. 2004
Diagnosed Jan. 2005 tumor in supraclavicular node
Stage 3c, Grade 3, ER/PR+, Her2++
4 AC, 4 Taxol, Radiation, Arimidex, Actonel
Herceptin for 9 months until Muga dropped and heart enlarged
Restarting herceptin weekly after 4 months off
Stopped herceptin after four weekly treatments....score dropped to 41
Finished 6 years Arimidex
May 2015 diagnosed with ovarian cancer
Stage 1C
started 6 treatments of carboplatin/taxol
Genetic testing show BRCA1 VUS
Nice! My hair came back really curly. Hope it lasts lol. Well it didn't but I liked it so I'm now a perm lady
29 March 2018 Lung biopsy following chest CT showing tumours in pleura of left lung, waiting for results to the question bc or ovarian
April 20, 2018 BC mets confirmed, ER/PR+ now Her2-
Questions about the possibility of ovarian spread and mets to bones so will be tested and monitored for these.
To begin new drug Palbociclib (Ibrance) along with Letrozole May, 2018.
Genetic testing of ovarian tumour and this new lung met will take months.
To see geneticist to be retested for BRCA this week....still BRCA VUS
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Old 08-20-2006, 06:37 AM   #16
tousled1
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Sheila,

You are correct that Adriamycin can cause heart problems and that is why it is not administered with Herceptin. Sort of a double bullet. I was on AC then Taxatore and now receiving weekly Herceptin. My oncologist sends me for an electrocardiogram every 3 months.
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Neoadjunct chemo: 4 A/C; 4 Taxatore
Bilateral mastectomy June 8, 2006
14 of 26 nodes positive
Herceptin June 22, 2006 - April 20, 2007
Radiation (X35) July 24-September 11, 2006
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Stage IV lung mets July 13, 2007 - TCH
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