Thread: Calling Patty Z
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Old 09-13-2008, 07:08 AM   #8
pattyz
Senior Member
 
Join Date: Mar 2006
Posts: 306


Brenda,

I've been 'able' to do this, in part, because I've remained NED in the bod since the Navelbine/Herceptin worked so well the last few months of '02.

And no, no hair loss from the Temodar. The one time I forgot the Zofran, I was indeed up in the night barfing.... My dose was 8mg of the Z. But, I've been able to use 4mg with the same success for most of these three yrs. Would the barfing still happen??? I don't know and don't want to take the chance!!

The only noticable S/E has been pechecia (sp?) on legs late in the week on the Tem. But, my counts always rebound just fine and quickly.

I don't 'know' anyone else taking it, so have no other comparisons.

You know, maybe what I had in the way of rads with the CK was 'fractionated'. I had the 6 mets tx'd with two sessions, two days apart. The CK Center had just opened, so they were short on 'experienced' help... but no one used the term "fractionated" at any time. huh. Leaves me wondering now!


Anyway.... It sounds like you have a great team. In all ways. I believe you'll do and be just fine with your decisions and tx's.

hugs to you xoxoxo
patty

p.s. I'm pasting one of Emmay's posts simply for more info:

Full history on Emmay's sister's brain mets tx's
Marie,

My sister has had WBR and then multiple CyberKnife treatments (a brand of Gamma Knife, I believe) at Beth Israel Deaconess Medical Center in Boston. The CyberKnife was very effective, then a new 2-3 tiny mets would show up in new location after 2-3 months. Lesson: definitely follow-up MRI should be scheduled every 2-3 months, until there is a consistently long period when no new mets show up -- then perhaps a longer stretch between MRIs.

When she maxxed out on CyberKnife, she shifted to Tykerb+Xeloda. That didn't work for her, so she was started on Temodar+Sorafenib. That worked well for about 9 months, but she lost too much weight from medication side effects. She is now on CPT-11 (a.k.a Irinotecan)+Avastin (along with Herceptin) -- that combo has been very effective for a number of months now, and her doctors are monitoring closely with MRIs.

Emmay - My sister's history:
6/03 Diagnosed Her2+,ER-PR-Breast Cancer, IIb
7/03 Lumpectomy
9/03 Begin chemo: AC+T
2/04 Mastectomy for local recurrence
3/04 Begin Herceptin
5/04 Radiation to mastectomy site
9/04 Recurring Headaches – brain mets diagnosed
10/04 Craniotomy #1 - remove 3 brain mets
11/04 Whole Brain Radiation
2/05 Begin Lapatinib(aka Tykerb) Clinical Trial
5/05 Craniotomy #2 - remove largest brain mets
7/05 Stereotactic Radiation to 2-3 sm brain mets
10/05 - 3/07 CyberKnife Radiation Treatments for small brain mets as they arose.
5/07 Begin Temodar+Sorafenib for brain mets
2/08 Begin Tykerb(Lapatinib)+Xeloda for br. mets
5/08 Biopsy shows new disease and necrosis
5/08 Begin CPT-11(Irinotecan)+Avastin for br.mets
6/08 MRI shows dramatic improvement
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