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Search took 0.03 seconds. Search: Posts Made By: mkrny
Forum: her2group 11-27-2006, 09:17 AM
Replies: 16
Views: 2,902
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
Views: 2,902
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
Views: 2,902
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
Views: 2,902
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
Views: 1,289
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
Views: 1,305
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
Views: 1,395
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
Views: 1,457
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
Views: 1,395
Posted By mkrny
Question 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
Views: 1,730
Posted By mkrny
Smile 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
Views: 1,347
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
Views: 1,347
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
Views: 1,105
Posted By mkrny
Question 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
Views: 2,664
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
Views: 1,681
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
Views: 1,681
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
Views: 1,144
Posted By mkrny
Question 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
Views: 1,602
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
Views: 1,528
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
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
Views: 1,457
Posted By mkrny
Question 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
Views: 1,082
Posted By mkrny
WBR = Whole Brain Radiation

No problem, WBR = Whole Brain Radiation
Forum: her2group 03-12-2006, 06:08 AM
Replies: 4
Views: 1,082
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
Views: 1,161
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
Views: 1,508
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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