BRAIN METS: latest update on chemo response

12-02-2005, 07:53 AM

I have finished four rounds of Temodar/Xeloda for my recurrant brain mets now...

Had another MRi Monday which shows continued shrinkage of about 50% to brain mets on brainstem/pons, temporal and frontal lobes. And no change to others except what appears to be LESS edema.

Gonna continue this protocal as I am doing so well on it.

It's all a mystery to me...... and my onc, too. But we shared a hug and holiday wishes, with plans for CA27-29 and check-up early Jan.

hugs, pattyz

12-1999: Age 50, Dx'd Invasive Ductal & Inflammatory. Two tumors, upper
and lower inside quadrants R/breast.

1-2000: Mast., 6/26 pos. nodes. ER+PR-, Heu2+++ StageIIIb - 4rnds A/C,
no rads (my choice & no medical ins.)

7-2002: Dx'd mediastinal node/s mets, (surgical biopsy), 'spot' on lung
and pelvis. Arimidex briefly.

9-2002: Dx'd brain mets. (mininally symptomatic) Two lesions, 1.5cm,
6mm. SRS focalized tx successful. Refused WBR.

11-2002: Navelbine/Herceptin 4rnds for systemic mets, scans show NED.

3-2003: Progression of brain mets. 14 new lesions visable.
Asymptomatic. Continue to refuse WBR. "Watch and wait " approach. Treat in small batches with two more SRS, two CyberKnife procedures through 5-2004. NED in body.

3-2005: Progression brain mets - maybe 10 new lesions, asymptomatic. (otherwise NED) Again 'watch and wait' approach until...

8-2005: Dizzy 24/7 in the course of just one day. Begin Temodar/Xeloda.

9-28-2005: Following 2 rnds, MRi shows response of nearly 50% shrinkage
in many brain mets, including brainstem/pons. Dizziness gone.

12-1-2005: MRi shows more shrinkage nearing 50% to several brain mets,
with no growth to others. Continue Temodar/Xeloda

Audrey · 12-02-2005, 11:34 AM

Congratulations, Patty on the great response to your brain mets! I remember your posts when I first discovered this site in 2002--nice to hear from you and the progress you're making against this disease. Keep on fighting! You're an inspiration to many, I'm sure.

StephN · 12-02-2005, 11:47 AM

50% !!! WHOOHOOO !!!

Ever the one to keep going even when eveyone else is stumped as to what to do. I think you could to the Iditerod without the dogs!

You have been so positive in your posts lately that I just knew you would have a good result. It seemed to come through in your upbeat attitude.
You have your contingency plan in place, but are not ready to go there yet.

I plan to nose around on the subject of Lapatinib in San Antonio and have a couple of names on the inside in charge of that drug. Also told my med onc about your plan for your brain mets and he will be interested in this news when I see him next.

Amy · 12-02-2005, 03:34 PM

Steph,
Please keep us informed about what you find on Lapatinib in San Antonio. I don't think herceptin is working for me.....hopes that Lapatinib could be my "miracle drug".
Thanks and take care,

Amy

kristen · 12-02-2005, 05:01 PM

Pattyz

congrats! I am so happy for you and the continued good results you are having on this treatment.

12-02-2005, 05:54 PM

Wow! I'm impressed with your memory

) And thanks for the support...
hugs,
pattyz

12-02-2005, 06:01 PM

Thank you, Steph....

My onc is a 'generalist' but what a dear man... I had given him a small bit of anecdotal info on Xeloda success/brain mets over a yr ago...and he told me a few months ago that he'd tried it with success on a gal, himself!

so........luckily, there was the small study done at MD Anderson, otherwise we are just 'anectdotal' without any 'hard' evidence.

Anyone in the Iditerod is my HERO!!! That takes mucho' balls and energy, imho!!

bighugs,
patty

12-02-2005, 06:03 PM

Thank you, Kristen...I appreciate your support!

hugs,
pattyz

hannah · 12-09-2005, 05:33 AM

Hi Patty

just some more questions my sister went to onc today who says he cant offer any more gamma/radiotherapy she asked about the combo you are on and he wasnt sure if it interferes with herceptin. Are you still on herceptin would appreciate quick reply as we go early next week.
thanks Hannah

Barbara H. · 12-09-2005, 07:54 AM

Hi Patty,
You are such an inspiration to all of us. I have been following your story for a while and have been cheering for you. I had a cranioptomy last Friday for what they thought was recurrent disease and it turned out to be radiation necrosis. This stuff can grow years later and can cause edema. Some of what you have may also be necrosis. It is not always easy to tell with an MRI. I will find out the final pathology report today and am keeping my fingers crossed. It would feel like a miracle if all is well because I was really in the dumps 3 weeks ago when I received this news.

I am hoping that you can keep those stubborn mets at bay long enough for the researchers to come up with something to wipe them out. You are my hero and I love it everytime you post.
Best wishes,
Barbara H.

12-09-2005, 08:14 AM

hannah,
Has your sister had a second opinion?? Without knowing why this doctor says more focalized radiation is not possible, I seriously question his opinion. One GammaK plus wbr does not seem to me to be the 'limit'.

To your question re: Herceptin. I have no idea. I have not been on Herceptin since I quit after it (combined with Navelbine) got me to NED of body over three years ago.

Your sisters brain mets are the crucial problematic mets at this time, imo. If her other mets are at least 'stable' and not life threatening, stopping the Herceptin is quite reasonable in order to address her brain mets.

I still encourage you to try for an 'emergency' second opinion......or get this doc to spell out WHY focalized rads are not possible. It is your sisters life, not his.

Has your sister responded to other chemos at all? For any length of time?? If her cancer is responsive to chemo, I think she may have some positive response with her brain mets to a combination similar, or the same, as I am on.

My hope was at the very least it would stablize my mets. So, my response of shrinkage is a huge bonus in my view.

I am not the only brain mets person to have multiple rad procedures for recurrant brain mets.... many who have also had wbr+ multiple focalized rads. So, this docs statement has me truly stumped/pissed off.

hugs to you and sis,
patty

12-09-2005, 08:26 AM

Barbara,
Thank you sooo much!! I did post to you on threads you initiated...hope you saw them.

My doc has not been totally satisfied with the reports these past months of my scans, so he asked for more details and comparison to those that showed total improvement last fall. With my blessing, even encouragement.

I do know about the potential for necrosis. Have felt that the MRispec (whatever) would be in my future if I am not satisfied with other scans/reports/opinions.

Barbara... I have been dangling over the edge so many times with this brain mets dx. I understand.

Keeping the good thought for the best news today...
hugs,
patty xoxo

Cindi · 12-09-2005, 10:35 AM

Patty,

Wow, what a fighter you have been! I am so very happy that this new regimen in working for you. You have shown us all how the soul can have such endurance.

Congratulations!!!!
Cindi.