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Old 08-05-2006, 08:03 PM   #1
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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Last edited by sassy; 08-22-2011 at 08:51 AM..
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Old 08-06-2006, 07:56 AM   #2
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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   #3
Val Pfeiffer
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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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Dx 11/04, Age 42, ER-/PR-, HER2+++
3 months weekly Herceptin, Taxol. Carboplatin
Significant tumor shrinkage
Mastectomy 3/05; Stage 3b, 9 cm tumor, 5/8+ nodes
3 more months weekly Herceptin, Taxol. Carboplatin
7/05 30 radiation treatments, IMRT planning approach
Started 1 year of Herceptin 9/05
9/06 Began quarterly triple doses Herceptin. Brain & breast MRIs semi annually.
* * * * * * * * * * * * * * * * * * * * * * * * * * *

6/08 Right breast, intraductal carcinoma, high nuclear grade associated with comedo necrosis; extensive diffusely involved the entire biopy specimen. ER+, PR-, Her2 unknown at this point, 07/08 mastectomy.
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Old 08-06-2006, 10:54 AM   #4
sassy
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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   #5
Becky
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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).

Kind regards

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Old 08-19-2006, 02:58 PM   #6
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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   #7
rinaina
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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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Dx:3/06 had a lumpectomy April 19, 2006
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Old 08-19-2006, 08:05 PM   #8
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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   #9
Sheila
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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
6/2003 Reconstruction W/ Tissue Expander, Silicone Implant
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
3/26 - 5/28/08 Taxol Holiday Whopeeeeeeeee
5/29 2008 Back on Taxol w Herceptin q 2 weeks
4/2009 Progression on Taxol & Paralyzed L Vocal Cord from Nodes Pressing on Nerve
5/2009 Begin Rx with Navelbine/Herceptin
11/09 Progression on Navelbine
Fought for and started Tykerb/Herceptin...nodes are melting!!!!!
2/2010 Back to Avastin/Herceptin
5/2010 Switched to Metronomic Chemo with Herceptin...Cytoxan and Methotrexate
Pericardial Window Surgery to Drain Pericardial Effusion
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
10/6/10 Begin my miracle drug, TDM-1
Mixed response, shrinking internal nodes, progression skin mets after 3 treatments
12/6/10 Started Halaven (Eribulen) /Herceptin excellent results in 2 treatments
2/2011 I CELEBRATE my 9 YEAR MARK!!!!!!!!!!!!!
7/5/11 begin Gemzar /Herceptin for node progression
2/8/2012 Gemzar stopped, Continue Herceptin
2/20/2012 Begin Tomo Radiation to Neck Nodes
2/21/2012 I CELEBRATE 10 YEARS
5/12/2012 BeganTaxotere/ Herceptin is my next miracle for new node progression
6/28/12 Stopped Taxotere due to pregression, Started Perjeta/Herceptin
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