another inductee into the exclusive brain met club

al from Canada · 01-12-2006, 09:23 PM

It has taken 24 hours for me to pull it together enough to post this but....Last night I got a call from our onc telling me that Linda's MRI didn't look too good. I haven't seen the report but a verbal report indicates that she has multiple mets to the brain, the largest being in her cerebellum, which is also causing swelling, thus her vomitting, unsteady gait and possible vision changes.

Moving rapidly forward, Linda is going to McMaster teaching hospital for enrollment in the phase 3 ALLOS radio-sentizing WBR trial on Monday (I think). The only catch is that it is a phase 3 randomized trial which means she has a 50:50 chance of getting the sentisizing drug. http://www.allos.com/

Thank you again to Joe and Christine for posting this.

As you can well imagine, this is a shock to our system but plan B is already in motion: we have moved Linda's Seattle consultation to the middle of Feb. Our regular onc has also to post-rads small molecule supplementation with avastin and in concert with Seattle recommendations. As well, he is offering off-label access to Iressa or tarceva as small molecule alternatives, post rads. I guess I'll be spending some time reading-up on these.

One thing I didn't know (according to our onc) was that WBR pokes holes in the blood-brain barrier which allows some intra-cranial flow of herceptin .

Being in Canada does impose many restrictions on drug availability but we'll work through it. One success we can't lose track of is that for almost 2 years, there has been no spread of mets beyond the liver except for this. With a MUGA of 60; I am considering linda's supplementation regime a success as brain mets are virtually unstoppable, if they decide to go there.

This news really sucks but....I'm hoping that very shortly, this will all be a distant memory of a very bad dream. I wish to thank all who post here, and esp. Joe and Christine for their continued support and committement to irradicate this evil disease.

As always,
Al

tammymarie1971 · 01-12-2006, 09:53 PM

Oh AL I am so sorry..This seems to be the one big thing we are all scared of right?? But you have to remind yourself and Linda of all the successes around here in the brain mets dept. Once again I am so very sorry about this new ugly crap!!! Here's to kicking ass on this thing!!!
Tammy

kristen · 01-12-2006, 09:54 PM

Dear Al and Linda,

I am so sorry to hear the news. But I am not surprised to see that you have plan A and B in the works. You are soooo good. Linda is very lucky. I know this will be a memory in the not too near future. My best to you both and my continued support.

Tom · 01-12-2006, 10:27 PM

Dear Al and Linda,

I have to hand it to you. You guys have really been through the carwash with this crap. We on the site are all praying for you, not to mention our church prayer chain folks who have no idea who Linda is, but will go to our God on bended knee for intervention on her behalf. I have all the faith in the world that you will find your answers to this obstacle as well. I admire both of you more than I can explain, and you have given me personal strength for Mom's battle as well.

Even in your update post, you provide precious tidbits of information for all of us. I never knew that WBR provided openings in the blood/brain barrier. What a fabulously useful piece of knowledge that is for anyone dealing with brain mets. I too am worried about brain mets, as Mom had a seizure last night that may be related to her vascular dementia, or something more ominous.

I can only say hang in there and remember all of us are thinking of you both. I sincerely hope that some day I might get the opportunity to meet the both of you in person and shake your hands. You guys are awesome, and a shining light of hope and determination to me and others. God Bless you both.

Sincerely,
Tom

StephN · 01-12-2006, 11:09 PM

So that explains a lot about some of dear Linda's balance and stomach troubles lately. Sorry to hear that, but the stats are not much in our favor to escape this complication as time goes on.
You will take this bull by its horns and do the old rodeo thing!

One thing this board is really good for is giving us information and knowledge which prepares us to some better extent for the time when things progress with ourselves, a loved one or friend. We may not always pay close attention to everything that come to this board, but something may jog our memory or we know to search the site. Something useful will turn up.

Glad the Allos trial is so available now. It was not just one year ago when I looked into it in case I needed WBR.
Keep us posted on how the treatment is going and give ouir love and best wishes to Linda.

Lolly · 01-12-2006, 11:13 PM

Al and Linda, I'm just going to be sending much love and prayer your way. I know that in our heart of hearts we're all somewhat prepared for this news to come our way, but still it's a shock. You must remember we're all thinking of you, and give Linda a BIG HUG for me.

<3 Lolly

chrislmelb · 01-12-2006, 11:20 PM

Al, all the best to you and Linda working through this

Christine

RhondaH · 01-13-2006, 03:42 AM

You and Linda are and will be in my thoughts and prayers. I will pray that she gets in the arm that GETS the sensitizing agent AND that it works successfully. Take care and God bless.

Rhonda Hoffman

Tracy · 01-13-2006, 04:55 AM

Al and Linda you will be in my prayers....

Joan · 01-13-2006, 06:43 AM

Al, I am so sorry that Linda landed in this club. You are right it sucks!
Please pass along my best wishes to Linda and also best wishes to you as you both recover from this disappointment and continue to battle on.

I will be watching for your posts.

Regards,

Joan

Maryanne · 01-13-2006, 07:40 AM

Please know how very much we are all pulling for you both.
You will be in may thoughts and prayers.
Maryanne

Shell · 01-13-2006, 08:20 AM

Al and Linda-

My thoughts and prayers are with you and your family. I agree with the comment that one always learns something from your posts -- thank you for that.

Shell

Kim in CA · 01-13-2006, 09:02 AM

Dear Al,

I sure hate to hear this news and I will certainly pray that Linda gets on the drug arm of the trial. You are a superhusband when it comes to your effort and diligence in researching the options for Linda's care, and we have all benefitted from your informative posts. I feel strongly that she can overcome this too.

Hugs to you both, Kim in CA

01-13-2006, 09:31 AM

We are all family, Al and Linda, and I will light a candle this morning and hold good thoughts for Linda's recovery as you both proceed with this current treatment strategy. Everything will be all right and you have my support all the way. Love to you both from Vicki Z in Newport Beach.

lexigirl · 01-13-2006, 09:37 AM

Dear Al and Linda,

I am so very sorry to read this news. I am praying for Linda to have strength and courage throughout this battle.

She is so very blessed to have a wonderful and supportive husband and best friend to fight along side with her.

God Bless You,

Lexi

jo50 · 01-13-2006, 11:19 AM

So sorry to hear this news. Hope they can get Linda started on new and effective treatments soon. Sounds as if you are continuing to do an amazingly thorough job of researching all possibilities and pushing hard to get them. Your efforts are inspiring for us all. You and your family are in my prayers. Jo

Lisa · 01-13-2006, 11:31 AM

Al,

All I could think was "damn, damn, damn."

When my mets started, I was so scared of brain mets. Don't know why now, except that it sounds so life-ending. Of course, it's not. Assuming they've looked at her spine via MRI and no tumors have "slipped down", Linda will at the very least have WBR, which many of us have been through.

I have a feeling that you will be involved in changing the course of medical treatment in Canada. You're resilient and brilliant. How you do all of this, run a business and care for all your kids is beyond me.

My God, how fortunate Linda is to have you.

Love and light,

Lisa

Celina · 01-13-2006, 03:29 PM

Al, just remember ALL the people faced with brain mets who are doing fine today...

Have you decided to embark on the trial for certain? I suppose you'll need the final path report.

I feel in my heart that Linda can overcome this. Stay strong.

michele u · 01-13-2006, 05:22 PM

Cancer SUCKS

AlaskaAngel · 01-13-2006, 05:35 PM

I am hoping that Linda is getting something to give her relief of the symptoms and maybe even medication to at least temporarily reduce the swelling while you are moving toward the next step in treatments. I think you are right about the supplementing having been helpful. You are in my thoughts. I too thank Joe and Christine for keeping this connection for everyone.

AlaskaAngel