This group is the best!

Marie, Here is something I keep by my phone, so I look at it and remember.

"Of all the forces that make for a better world, none is so powerful as hope. With hope, one can think, one can work, one can dream. If you have hope, you have everything."

I hope this helps you during this tough time.

xo
Karen

It does Lovey. With each minute that passes, with each post I read, I dress in my war garb. There is a shimmer of hope and there are miracles that are yet to be claimed. Maybe it is ours for the taking. We have not yet begun to fight. I have never swore on this site but I will say I am pee'd off at cancer right now.

Our journey continues and we will not write the ending, not yet. After all, we do have hope and a splendid family behind us, what more could a girl want besides another miracle (smiling). Thanks for the rescue.>>Believe51

Joy, I really enjoyed reading your post on the Joy thread about the fishing trip. It was so full of love, enjoyment of life and friendship. Sounds like it was a great day.

Hi Marie & Ed. Just something I thought of Marie - I dont understand alot of this technical stuff especially re chemotherapy or any thing but I do know I had 6 tumours in my brain and now they are all gone.

They were there before Xmas but when I had a CT they were all gone!! I still dont know what did the trick but I had just completed Whole Brain Radiation (2 weeks worth) followed by Xeloda & Tycerb (which I am still on).

I dont know which - if any - of these things worked? Maybe it was the prayers and being surrounded by love (but you already know that!). This maybe no help at all but just thought I'd mention it. You and Ed deserve the best.

Much love and blessings
Hermiracles

Marie,

Sending hugs to you and Ed.

Paty

Marie,

I'm sorry to hear about Ed's brain mets. You and he are in my prayers.

Joan

Marie,

I just posted under Stephnie's new thread. Lani is such an amazing advocate here - I hope the information she and Rich provided will give you all more options. Remember 'Faith, Hope, and Love...and the greatest is Love.' You have certainly examplified what 'love' is all about and we thank you for that.

Marie,

You and Ed are in my thoughts. Much love and peace sent your way.

Hopeful

Just back in town and read all the post. I am here
praying for you and Ed and you will be in my thoughts
daily backing you all the way.
patb

I've been offline Marie and just catching up, please know I'm keeping you and Ed in my thoughts and prayers:)

Marie,
I am at a loss for words. Your love and devotion to Ed is so inspirational as well as your love for all of us. I think of you daily and will keep you in my prayers. Peace be with you.
Love, Karen

Dear Marie,

In April '08 my sister's MRI looked very bad -- brain mets appeared to be suddenly growing very quickly and spreading in new areas, and she'd already had 2 brain surgeries, Whole Brain Radiation, many Cyberknife treatments, chemos etc etc (see history of her treatment below). Her neuro-oncologist and her breast cancer oncologist did their best to come up with something new that might work. They put her on CPT-11 (Irinotican) plus Avastin, and her response under that therapy was remarkable -- ~90% of met activity in brain cleared after a month, then all clear for a full year.

[Unfortunately she developed systemic mets in April '09 which forced a change in her treatment (she is currently on Herceptin every week and Carboplatin (3 weeks on, 1 wk off) and recovering from a hairline fracture in her hip]...

There's some chance DFCI might not consider CPT-11 + Avastin an acceptable therapy, but I know you and your dear Ed are praying for some other option right now, and that combo worked remarkably well for my sister for a full year. Good luck tomorrow and God bless you both -- you are in all of our prayers.

Emmay

Emmay, someone somewhere may offer us hope outside of a trial, maybe I can get what he needs as a'compassionate' treatment. I will be taking this to the OncoMan on Tuesday.

Poor Sis, she has had her share on the journey for sure. Hugs to you both and thanks for the ammo>>Believe51

Hi Marie,

I am not sure whether you were able to access the links to trials that I posted on Friday. I thought I would paste this one in (see below), since it is specifically for brain metastases and at Dana Farber. You should be able to look at the others by clicking on the link in my post a few pages up, if you are interested. You can also look up other trials at www.clinicaltrials.gov, as you probably know.

Good luck tomorrow! I rarely post, but I know what a warm and supportive person you are from reading your posts. I wish you and the Might Oak the best. Another website that might be useful for you (and you probably already have seen) is www.brainmetsbc.org. Musa Meyer, who organized this site, is wonderful woman, a patient advocate and very knowledgeable and helpful. If you have any questions about what to do, I am sure she would respond to your e-mails.

All the best,


Jill



ZK219477 in Patients With Breast Cancer and Brain Metastases
This study is currently recruiting participants.
Verified by Dana-Farber Cancer Institute, January 2009
First Received: July 3, 2007 Last Updated: January 16, 2009 History of Changes
Sponsors and Collaborators: Dana-Farber Cancer Institute
Beth Israel Deaconess Medical Center
Brigham and Women's Hospital
Bayer
Breast Cancer Research Foundation
Information provided by: Dana-Farber Cancer Institute
ClinicalTrials.gov Identifier: NCT00496379
Purpose

The purpose of this research study is to determine the effects (good and bad) of ZK219477 on participants and their cancer. ZK219477 is a chemotherapy drug that is thought to work by interfering with the ability of cancer cells to grow and divide. It is a part of a group of drugs called "epothilones" which appear to cause shrinkage of cancer in some patients with breast cancer. It is generally difficult for chemotherapy to enter the brain. However, it is believed that ZK219477 crosses into the brain. We are also studying whether an investigational MRI scan procedure may eventually help to predict which patients will benefit from ZK219477.

Condition Intervention Phase
Breast Cancer
CNS Disease
Drug: ZK219477
Phase II

Study Type: Interventional
Study Design: Treatment, Non-Randomized, Open Label, Historical Control, Single Group Assignment, Efficacy Study
Official Title: A Phase 2 Study of ZK219477 (ZK-EPO) in Patients With Breast Cancer and Brain Metastases

Resource links provided by NLM:

Genetics Home Reference related topics: breast cancer
MedlinePlus related topics: Breast Cancer Cancer
U.S. FDA Resources

Further study details as provided by Dana-Farber Cancer Institute:

Primary Outcome Measures:

* To evaluate the objective response rate in the CNS (complete response plus partial response) as assessed by MRI, to ZK219477 among patients with progressive brain metastases from breast cancer. [ Time Frame: 2 years ] [ Designated as safety issue: No ]


Secondary Outcome Measures:

* To determine the safety and tolerability of ZK219477 at this dose level. [ Time Frame: 2 years ] [ Designated as safety issue: Yes ]
* To evaluate the objective response rate in non-CNS sites in the subset of patients with measurable non-CNS disease at baseline. [ Time Frame: 2 years ] [ Designated as safety issue: No ]
* To evaluate time to progression at any site. [ Time Frame: 2 years ] [ Designated as safety issue: No ]
* To evaluate 6-month progression-free survival and clinical benefit rate. [ Time Frame: 2 years ] [ Designated as safety issue: No ]


Estimated Enrollment: 37
Study Start Date: July 2007
Estimated Study Completion Date: July 2009
Estimated Primary Completion Date: July 2009 (Final data collection date for primary outcome measure)
Intervention Details:

Drug: ZK219477
Given intravenously over approximately 3 hours once every 3 weeks

Detailed Description:

* Participants will be given ZK219477 intravenously over approximately 3 hours every three weeks.
* During all treatment cycles a physical exam and questions about the participants general health and specific questions about any problems they may be having will be performed.
* At least every three weeks blood tests will be done to assess the effect of ZK219477 on the body.
* After every 2 cycles of treatment, participants will have additional scans to assess the effect of ZK219477 on their cancer. This will include a CT scan of the abdomen, chest, and pelvis, and an MRI of the brain.
* At the time of the standard MRI, participants will be asked to undergo an additional MRI sequence, which means they will be in the MRI machine for approximately 15-20 more minutes.

Eligibility

Ages Eligible for Study: 18 Years and older
Genders Eligible for Study: Female
Accepts Healthy Volunteers: No
Criteria

Inclusion Criteria:

* Patients must have histologically or cytologically invasive breast cancer, with metastatic disease at the time of screening
* Measurable CNS disease, as defined as at least one lesion > or equal too 10mm in longest dimension
* New or progressive CNS lesions after at least one prior standard CNS-directed therapy for treatment of brain metastases, which could include surgical resection, WBRT, and/or SRS. Patients must have received prior WBRT, SRS or both.
* Patient has been evaluated by a radiation oncologist, who feels that the plan to evaluate systemic chemotherapy in place of additional brain radiotherapy is an acceptable option
* No increase in corticosteroid use in the week prior to study entry
* Up to 3 prior lines of chemotherapy for metastatic breast cancer
* 18 years of age of older
* Life expectancy of greater than 12 weeks
* ECOG Performance Status 0-2
* Patients must have normal organ function as outlined in the protocol

Exclusion Criteria:

* Patients who have had chemotherapy within 3 weeks prior to entering the study or those who have not recovered from adverse events due to agents administered more than 3 weeks earlier
* Patients who have had XRT within 3 weeks prior to entering the study or those who have not recovered from adverse events due to XRT
* Patients may not be receiving any other investigational agent
* Patients may not be receiving any cancer-directed therapy
* Prior treatment with investigational chemotherapy for brain metastases
* Prior treatment with epothilone for metastatic breast cancer
* Leptomeningeal carcinomatosis as the only site of CNS involvement.
* Concurrent treatment with an enzyme inducing antiepileptic drug, including phenytoin, carbamezepine, phenobarbital, or oxacarbazepine
* Grade 1, hormone receptive positive tumor
* More than 2 seizures over the last four weeks prior to study entry
* Known contraindication to MRI or gadolinium contrast, such as cardiac pacemaker, ocular foreign body, or shrapnel
* Uncontrolled intercurrent illness including, but not limited to, ongoing or active infection, symptomatic congestive heart failure, unstable angina pectoris, cardiac arrhythmia, or psychiatric illness/social situations that would limit compliance with study requirements
* Pregnant or breastfeeding women.

Contacts and Locations
Please refer to this study by its ClinicalTrials.gov identifier: NCT00496379

Contacts
Contact: Nancy Lin, MD 617-632-2335 nlin@partners.org
Contact: Emily Eisenberg 617-632-6930 eeisenberg@partners.org

Locations
United States, Massachusetts
Dana-Farber Cancer Institute Recruiting
Boston, Massachusetts, United States, 02115
Principal Investigator: Nancy Lin, MD
Beth Israel Deaconess Medical Center Recruiting
Boston, Massachusetts, United States, 02115
Principal Investigator: Steven Come, MD
Sponsors and Collaborators
Dana-Farber Cancer Institute
Beth Israel Deaconess Medical Center
Brigham and Women's Hospital
Bayer
Breast Cancer Research Foundation
Investigators
Principal Investigator: Nancy Lin, MD Dana-Farber Cancer Institute
More Information

No publications provided

Responsible Party: Dana-Farber Cancer Institute ( Nancy Lin, MD )
Study ID Numbers: 06-268
Study First Received: July 3, 2007
Last Updated: January 16, 2009
ClinicalTrials.gov Identifier: NCT00496379 History of Changes
Health Authority: United States: Food and Drug

Marie...
 

This is Terri, not logged in at the moment I guess. Know that you are loved, and supported. I hope that all the kindness and support that you have so generously shared through the years is coming back at you tenfold. Sending good vibes to Mighty Oak. I for one Believe in Miracles!!

Many Hugs

Terri

Go to link and search on brain:

http://www.cancernetwork.com/news/di.../10165/1408655

Ed offered great advice for taking it one moment at a time...you are both very strong and will be able to tackle whatever is coming your way. I will continue to keep you both in my thoughts.

Colleen

GammaMan just called and has consulted with Ed's radiation team. Our doctor is the Chief Radiologist Oncologist and if anyone can do this in Rhode Island it is him and his team. We have an appointment on Thursday to discuss WBR which may be a dangerous option but an option just the same.

You guys have been great as you always are and the support and research you have supplied will keep those doctors challenge. I try not to get too mushy but I love you all and that love is like no other.>>Believe51

PS: Today I really feel more hopeful than I did on Friday.

God bless! I am happy to hear about WBR as a possible option for Ed. I pray that it is a good option and will wipe out the tumors. I am praying hard for both of you. Your deep bond and love is so strong that there will have to be a miracle soon.

Sending prayers and postive thoughts your way.

Lots of love,
shobha