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Posts Made By:
mkrny
Forum:
her2group
11-27-2006, 09:17 AM
Replies:
16
progression on lapatinib for us
Views:
2,914
Posted By
mkrny
Here's his contact info: Dr Alexis...
Here's his contact info:
Dr Alexis Demopoulos
Director, Neuro-Oncology
North Shore/LIJ - North Shore University Hospital
300 Community Dr
Manhasset, NY 11030
516.562.3065
Our prayers are...
Forum:
her2group
11-27-2006, 07:39 AM
Replies:
16
progression on lapatinib for us
Views:
2,914
Posted By
mkrny
From what I see any work w/ IT herceptin is...
From what I see any work w/ IT herceptin is pre-trial. Very experimental at this point w/ unknown end results from a statistical perspective (4 patients isn't enough for oncs to hang their hat on...
Forum:
her2group
11-22-2006, 08:47 AM
Replies:
16
progression on lapatinib for us
Views:
2,914
Posted By
mkrny
IT=intrathecal
All,
Thanks for the words of support.
Lolly,
Yes herceptin injected into the cerebral spinal fluid (CSF) either via lumbar puncture (ouch) or Ommaya reservior (port through skull). Genetech's...
Forum:
her2group
11-21-2006, 08:07 AM
Replies:
16
progression on lapatinib for us
Views:
2,914
Posted By
mkrny
progression on lapatinib for us
Trial appears to have failed for my Maryann. She is completing second cycle while we start planning to have IT herceptin. Local neuro-onc will administer this. Only 4 patients known worldwide to...
Forum:
her2group
10-24-2006, 12:12 PM
Replies:
4
brain mets what treatments?
Views:
1,294
Posted By
mkrny
We were confronted with this in March. Here's my...
We were confronted with this in March. Here's my opinion based on our experience:
1. first explore surgical removal,
2. also talk to rad onc to see if radio surgery is viable, they will likely...
Forum:
her2group
10-15-2006, 05:54 PM
Replies:
7
Jerking or twitching legs?
Views:
1,308
Posted By
mkrny
I'll offer two perspectives on this. Based...
I'll offer two perspectives on this.
Based on your history I would be surprised if you had any spinal invovlement at this point but I would recommend you aire on the side of caution. I don't...
Forum:
her2group
10-14-2006, 11:20 PM
Replies:
6
Lapatinib/Xeloda dosing
Views:
1,397
Posted By
mkrny
eat your spinach (& swiss chard)
Thanks for the input. I'll keep a close eye on Maryann's tolerance for the xeloda. I'll have make sure we get potasium rich foods for her:
http://whfoods.org/genpage.php?tname=nutrient&dbid=90
Forum:
her2group
10-14-2006, 11:00 PM
Replies:
6
Questions
Views:
1,464
Posted By
mkrny
don't accept this oncs response!
Jannie, Sounds like it is time for a new onc. Definitely get scans periodically, typical is 6 month intervals at first then stretch it out if things look good. Include head especially since it was...
Forum:
her2group
10-14-2006, 11:34 AM
Replies:
6
Lapatinib/Xeloda dosing
Views:
1,397
Posted By
mkrny
Lapatinib/Xeloda dosing
My wife finally got started in the trial today. We are both very hopeful that this trial is the cocktail that succeeds in beating Maryann's cancer.
Cycle is 21 days, Her dose is:
*Lapatinib 1250...
Forum:
Clinical Trials
10-12-2006, 10:29 AM
Replies:
1
Lapatinib/Xeloda dosing
Views:
1,750
Posted By
mkrny
Lapatinib/Xeloda dosing
My wife finally got started in the trial today. We are both very hopeful that this trial is the cocktail that succeeds in beating Maryann's cancer.
Cycle is 21 days, Her dose is:
*Lapatinib...
Forum:
her2group
10-09-2006, 06:49 PM
Replies:
3
Heceptin interval 1 wk vs 3 wk
Views:
1,356
Posted By
mkrny
exactly my thoughts
New onc felt strongly that 1 wk interval is preferred. Link in Joe's reply implies 3 wk may be equivalent to 1 wk but stops short of concluding that. Our personal experience would indicate that 3...
Forum:
her2group
10-09-2006, 11:04 AM
Replies:
3
Heceptin interval 1 wk vs 3 wk
Views:
1,356
Posted By
mkrny
Heceptin interval 1 wk vs 3 wk
Can someone provide effectivity results or point me to studies that discuss why Herceptin should be given weekly? My wife's old onc gave it to her every three weeks. She has since been DXd w/...
Forum:
her2group
10-09-2006, 10:31 AM
Replies:
2
more on chemo brain--yes, the brain does have to work harder !
Views:
1,106
Posted By
mkrny
memory improvement
Is anyone taking Alzheimer's drugs such as donepezil, exelon, etc?
My wife's memory is suffering from a number of prior chemo cocktails, WBR and most recently intrathecal MTX. I haven't gotten...
Forum:
Clinical Trials
10-09-2006, 09:53 AM
Replies:
4
Lapatinib EAP
Views:
2,685
Posted By
mkrny
should be starting in 2 days
My wife should be starting Tykerb/Xeloda EAP Wednesday, 10/11 on Long Island in NY. We provided full history and she has completed scans/tests that they request are done w/i 14 days of starting the...
Forum:
her2group
07-10-2006, 10:22 AM
Replies:
8
Experience with Tykerb
Views:
1,684
Posted By
mkrny
Both a little farther than we'd like but just in...
Both a little farther than we'd like but just in case we hit roadblock locally, can you provide contact info for the folks working with Tykerb at Georgetown Univ Hospital in DC?
Thanks, Maryann &...
Forum:
her2group
07-07-2006, 08:33 PM
Replies:
8
Experience with Tykerb
Views:
1,684
Posted By
mkrny
Where are you?
Great news to hear.
My wife has leptomenengeal disease (cancer in spinal fluid affecting the surface of her brain). We are about to start treatment and would like to get Tykerb. We're in NY...
Forum:
her2group
07-07-2006, 08:23 PM
Replies:
0
can FISH test CSF?
Views:
1,145
Posted By
mkrny
can FISH test CSF?
Can the her2 status tests be done on spinal fluid? What about Er/Pr receptor status?
My Maryann's primary site pathology was ER/PR negative and her2neu positive (2+). When she found a node in her...
Forum:
her2group
03-21-2006, 09:32 PM
Replies:
11
eye roblems
Views:
1,606
Posted By
mkrny
get the mri
Liz,
Don't mean to scare you but we found out that my wife (Maryann) has brain mets that first presented as eye problems. After mildly mentioning flashes of light in right peripheral field for a...
Forum:
her2group
03-14-2006, 02:50 PM
Replies:
6
Complete Response vs Partial Response
Views:
1,529
Posted By
mkrny
Great news but don't forget to get an MRI of your...
Great news but don't forget to get an MRI of your head periodically.
Forum:
her2group
03-14-2006, 07:05 AM
Replies:
1
Christine - Donna says "Hi"
Views:
930
Posted By
mkrny
Christine - Donna says "Hi"
Off topic but wanted to relay to Christine that we stopped in to see cousin Donna and she had nothing but good things to say about you and your efforts for all her2+ ladies out there.
Thanks again...
Forum:
Articles of Interest
03-12-2006, 04:16 PM
Replies:
1
any studies on heceptin during WBR?
Views:
1,544
Posted By
mkrny
any studies on heceptin during WBR?
I'm sure this is a repeat but are there studies showing benefit of taking herceptin during WBR. Rad oncs have told us they don't want my wife to get any herceptin (or chemo current cocktail is...
Forum:
her2group
03-12-2006, 06:18 AM
Replies:
4
herceptin during WBR
Views:
1,083
Posted By
mkrny
WBR = Whole Brain Radiation
No problem, WBR = Whole Brain Radiation
Forum:
her2group
03-12-2006, 06:08 AM
Replies:
4
herceptin during WBR
Views:
1,083
Posted By
mkrny
herceptin during WBR
I'm sure this is a repeat but are there studies showing benefit of taking herceptin during WBR. Rad oncs have told us they don't want my wife to get any herceptin (or chemo current cocktail is...
Forum:
her2group
03-11-2006, 10:01 AM
Replies:
5
WBR dosage?
Views:
1,163
Posted By
mkrny
My bad, in my first posting I neglected to...
My bad, in my first posting I neglected to mention that brain was getting treated. Radiation burn is a valid concern but for my Maryann getting rads to head I'm are more concerned with what we are...
Forum:
her2group
03-11-2006, 09:45 AM
Replies:
6
Combination of two drugs + herceptin? Or just one?
Views:
1,509
Posted By
mkrny
2+herceptin
My Maryann has been using 21 day cycle of
d1 Herceptin + Navelbine + Xomeda (for bones),
d8 Navelbine + Xomeda (for bones),
d1-14 Xeloda oraling.
d15-21 off
About 14 months and body scans...
Showing results 1 to 25 of 38
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