vickie h update - Page 2

Sheila · 10-21-2009, 04:53 AM

Cap, Keeping both you and Vickie in my thoughts and prayers that you can get her into a trial soon....sending our love to you both.

mmoons · 10-21-2009, 08:19 AM

Cap,

Last year when I came to this site for the first time, your Vickie wrapped her virtual arms around me and supported me and cared for me! Please give her my love. I hope she feels the outpouring of prayers coming her way from everyone here. My heart is broken to read your post. She is so incredibly special. My love to you both.

Maureen

chrisy · 10-21-2009, 10:56 AM

Hey Cap,
Thank you for the update, you and Vickie are most definitely held in prayers. I cannot imagine how hard this is for you.

Check into T-DM1 trials, I believe Chelee is working to get into one at (I think) UCLA. I'd suggest calling there, or calling Genentech as the listing of locations on the clinical trials website is NOT accurate or complete. Or push her oncologist to find trials for her.

The first priority is of course to regain stability in general with her health issues. Not only for the obvious reasons, but also because this is necessary in order to qualify for trials.

Ellie F · 10-21-2009, 11:12 AM

Hi Cap
I am so sad to hear that Vickie is now so poorly. I cannot believe it. When I joined the board Vickie inspired me to carry on and look for other treatment options, which I did. Please search for a trial for her and please don't let her give up.
Ellie (England)

10-24-2009, 01:04 PM

Thank you all for your prayers. Vickie is doing better today and we are looking at trying to get her to M.D. Anderson or Idaho (there is a TDM1 trial there. Her chest is bandaged now from all the bleeding skin mets, but she is such a trooper. Her sister is here with her and she is happy. She is not giving up by any means. Her strength amazes me more every day. I will keep you updated, but please know how much she loves all of you and cares deeply for your well being and peace.
Cap

schoolteacher · 10-24-2009, 01:11 PM

Cap,

Thank you for letting us know how she is doing. It amazes me her concern for others in the community while she is going through this. Please let us know if she gets into the trial or goes to MD Anderson.

I am glad she is better.

Amelia

StephN · 10-24-2009, 01:33 PM

Dear Cap -
Thanks for letting us know about Vickie.

My new mantra: Vickie, Idaho. Vickie, Idaho.

Hope you are in touch with Tolley there. She is the coordinator. I hear the trial will close soon so do not waste a moment on this.

They are just opening a brand new building and are in process of moving, so hope this will not slow you down.

P.S. From our experience with Vickie here, it is just like her to put concern for others ahead of her own plight! It is HER turn ...

Mary Anne in TX · 10-24-2009, 01:40 PM

Cap, thanks so very much for letting us know how Vickie is today! She's getting lots and lots of love and virtual hugs each day from her sister warriors!
I'm surely praying that she gets to where ever she needs to be to get the bestest help possible.
Tell her again how much we love her. ma

lexigirl · 10-24-2009, 03:07 PM

Thank you for the update, Cap. I am so happy that Vickie has her sister visiting and is in good spirits. That is good medicine there! I am hopeful that a trial will work out very soon.

Love,
Lexi

Jackie07 · 10-24-2009, 03:12 PM

Thanks for the update. Please convey our love and prayers to Vickie.

Joan M · 10-24-2009, 05:02 PM

Cap,

I'm praying for Vicki, that she will find a trial.

Carolyn provided a link to the T-DM1 trial. You can also ask Vicki's onc to speak with a doc at your facility that handles trials, which can help out.

Joan

margiermc · 10-25-2009, 02:07 PM

My prayers are with your wife, Vickie. This is scary for me, I am newly diagnose - age47, DCIS, then liver met, all in 3 month. Now, just NED and scared. She is a fighter and God bless her - I wish I someday gain this kind of courage - I'm just lost for words, new to all this - sorry, it's a heartache for me and my family - god bless, margie

Chelee · 10-25-2009, 04:54 PM

Cap, some how I missed this. Vickie is such a sweet, caring, compassionate, loving woman & I so hate hearing this news. She has always seemed to have so much to deal with, yet was always finding time for all her Her2 sisters...including me. She is such an amazing and inspriational woman. I don't think there is any of us here that wouldn't do anything we could for her. I'm glad she hasn't given up and is ready to push onward. If anyone can do it...Vickie can...especially with the love and support of you by her side.

Chrisy is right...I do know of two TDM1 trials that Dr. Slamon told me about. But this study is only for patients with Metastatic Her2-Positive Breast Cancer who have not received prior Chemotherapy for metastatic disease. Which I fit into since all I've had is TCH when first dx. There seems to be quite a few TDM1 trials which is making it difficult for many of us patients that are trying to find one that we can be accepted in. Please tell Vickie I have her in my thoughts & prayers daily. She really so special...tell her I send all my love. (Hugs coming your way Vickie!)

Chelee

Mary Anne in TX · 10-26-2009, 05:15 AM

for our sweet Vickie today! ma

michka · 10-26-2009, 06:51 AM

Cap, hug Vickie for me and tell her she is in my thoughts. I hope you can find a way to get her in a Trial. Love to both of you. Michka

Midwest Alice · 10-26-2009, 12:36 PM

I vote for Idaho! Love and hugs Vicki. Prayers for you and your family

11-06-2009, 01:39 PM

Thank you so much for your prayers and well wishes.
We are in touch with Tolli up in Idaho for the TDM1 trial and if all goes well, we will be flying up there next Friday or the following Monday. We are waiting for the results of her brain MRI and ekg, as well as some blood tests that should be in today. If she passes these, she will be in the trial for sure. If not, her Onc in Santa Monica has a phase I trial (sounds a little sketchy) she can start with Alimta. Right now we are plahing the waiting game. Her Onc up here, where we live wants to put her on Herceptin/Tykerb but non of her Oncologists are looking at long-term survival at this rate. We are praying for anything we can get.
Her skin mets are pretty extensive, open and weeping from all the necrotic tissue. I never knew IBC could look like this and it has me worried.
She misses all of you so very much and talks about you everyday. She just hasn't had the strength to use the computer, but she prays for all of you daily. You have become her family and her hope and her dear friends. She speaks of you in such loving terms and cares for you so deeply.
I will keep you posted and as soon as her anemia gets better, she will be here to talk to you again. Right now, she is on pain meds and sleeps a lot.
Please keep her in your prayers as you are always in hers.
Cap

Mary Anne in TX · 11-06-2009, 01:48 PM

Hi Cap! I wish that you didn't have to write this message but one of recovery! Vicki's heart is so big and so very kind, we miss her terribly here each day. Please let us know the results of the blood work and which treatment she will be on. I keep praying for Vicki and believing with all my heart that she will conquer this awful disease one more time. Much love to you both, ma

StephN · 11-06-2009, 01:57 PM

Dear Cap -
I am still chanting that mantra - Vickie, Idaho, Vickie, Idaho.

There is a topical cream that has helped a lot of women with skin mets called IMIQUIMOD. I learned about a trial that is using it with Abraxane here in Seattle at the Tumor Vaccine Group open house I attended last night. The doctor in charge says that those with extensive skin mets don't do as well, but that cream is used off label.

Still the best results I have heard about with skin mets is the T-DM1. GO, Vickie! Pass those criteria with flying colors.

TriciaK · 11-06-2009, 07:35 PM

I feel so much concern for you and Vicki. She has been such a warrior and such an example to all of us. Please remind her again how much she is loved and how we are all praying for you both, and please let us know as much as you can how she is doing. Our thoughts and prayers go out to you to find what is needed to help her. Hugs, TriciaK