another inductee into the exclusive brain met club
 

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

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

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.

Hang in there
 

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

News and plans
 

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.

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

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

Christine

Al...
 

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

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

Inductee
 

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

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

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

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

Sending love from California
 

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.

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

Linda
 

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

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

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.

Cancer SUCKS

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

Thinking of you!
 

Dear Al and Linda,
It sounds as if you two have already dealt with the rock bottom feeling one gets with a blow like this, and are now dealing with it and readying yourself for the proposed treatment plan. I was crushed to read about this setback today. The two of you are such great fighters and are a true inspiration to us. I wish you all the best on this continued journey with hope that Linda will receive the treatment arm of the trial that may make a difference. I will keep you both in my thoughts. Linda, you will get through this bump in the road.
Best wishes,
Barbara H.

Al, I was told that any radiation to brain can cause the BBB to become 'leaky'... as well as the tumors themselves depending on location.

The fact that the Temodar/Xeloda combo has resulted in such shrinkage to the mets in my cerrebellum and brain stem is remarkable, I believe. But, I DID have lots of radiation, just not WBR.

It sounds like you have things well in hand, tho' I'm so sorry you and Linda have this new hurdle to face at all.

Keeping good thoughts, hoping for the best,
pattyz

Al I am sorry to hear this. Last year I was in San Antonio and came home only to get an e-mail from Steph she had brain mets. Now, this year its Linda!! Steph went NED and so will Linda! You keep up the good work, I know its not easy but you are doing a great job. Sending you both lots of prayers and a big hug, Sandy

Al,

I'm so sorry that you and Linda have another tough fight ahead but I'm confident that it'll turn out well for you. Besides, all the positive vibes being sent your way from 3+pages worth of people that care HAVE TO help!!

My thoughts are with you both,
Eric

Keeping your whole family in my thoughts and prayers.


Sassy
________
Park Royal 1 Pattaya

I officially joined this group as a member in May, 2005 (when the new website started up I had to re-register) but I lurked (and posted) for MONTHS before joining. One of the first lengthy correspondences I had was with you Al. You always post such relevent information or studies. You posted a paper you really weren't sure of and since I had my MS in biochemistry, I answered you. I knew then I had to join this group and I did and I fought to get herceptin and scans and brain mri's because of one conversation with you.


I think about Linda and you every day and always hope and pray and that will never end. I am thinking of you now and I know you will get through yet another obstacle as you have helped us get through obstacles without even knowing you have helped.

Becky

Brain mets
 

I am sorry you got this news. There is an upside and that is it is manageable. You will be in my prayers.
Annemarie

Oh no, Al. I haven't been here long as a regular on these boards; however, in the short time I have been here, I have looked to your post as inspiring and insiteful. I just hate to hear of this lastest cancer spread. At the same time, I trust that you and Linda will be fighting this full force with your various plans. I will be praying for you guys that God will direct you and give you peace. Please read my post on miracles as encouragement also. And please keep us posted!

PS. Let me also add that Joe and Christine are an inspiration to these boards and I thank God for them also. Al, thanks for reminding us of all of their input.

Al & Linda
 

Dear Al and Linda,

I can't tell you how sorry I am to hear the news. I know this is the one thing we all dread the most about this horrible disease. Please know that I am thinking of you both and praying that with new medication and the best of care that Linda's brain mets will soon be a thing of the past and we can all be celebrating her great success and recovery.

Big hugs and lots of love,
Nicola

there for you both too
 

Al and Linda,

I was so sorry to read about this. I will be sending good vibes Hamilton way.

JJ

Al,
I am so sorry to hear this. I know that you have been trying to get into the vaccine trial. But as you know, many of the ladies on this board have beaten brain mets and I am sure Linda will be among them. YOu are the best caregiver and I know how difficult it is to be the one to lean on. I will keep you and Linda in my prayers.
Anne

Linda and Al,

I am so very sorry to hear about Linda's brain mets. It's so unfair. Please know that that so many of us are praying for you and cheering you on.

Cynthia

Linda and Al

It hurt to read your post...know that you are both in my thoughts and prayers every day...yo have both been through so much and now another hurdle...but you are both track stars at this game...and I know you will come out the winner over this.
Sending a big hug to both of you.

Al and Linda.....Damn it.... So sorry to hear of this news. I promise to send positive energy and prayers your way....Love and God Bless, Amy

I'm sending prayers, as well. I always look forward to reading what you have posted. You have helped so many here. Blessings to you both; many prayers are asking for Linda's healing.

Barbara

Al and Linda,
You have been through so much of this roller coaster ride. My thoughts and prayers are with you.

Best Wishes,
Helen

In my prayers
 

Dear Al and Linda,

I am so sorry to hear this news and just wanted to add my prayers to the long and growing list.

Best wishes,

Christine

Dear Al and Linda,
I log back on the boards and I am taken aback by the news of Lindas mets to the brain. Right when you think things are in some control, it seems like a crisis of "tsunami" proportions hits. I can hear in your words that you have an action plan and being armed with knowledge and a constructive "to do" list is your best therapy right now. Please let us know how you are doing as things progress.
You have given many of us, me included, the gift of your support and knowledge. Know that our arms of support are around you both now in thought and prayers.
Love Kim from CT

thanks to all my friends and Linda update
 

I want to thank everyone for their support and prayers. It is truly overwhelming the response to Linda's recent battle.

She has finished her first week on the ALLOS trial and is doing so much better. This is the first day since the beginning of December that Linda didn't need at least one mid-day nap. On Tuesday, she went for a nap at 3:00 pm and didn't awake until 9 the next morning.

This is so encouraging for us as a family. Just another report; our 3 kids, ages 19, 20 and 22 (the girl) have been so supportive. They have developed a routine whre they all blitz the house for 1 1/2 hours a day, re-painting, cleaning, washing floors; I'm starting to wonder if they shouldn't start a cleaning business...even their rooms are clean!!

The trial is amazing. The theory is that the ALLOS drug encourages hemoglobin to dump bound Oxygen (O2) and encourages its cellular uptake. Tumor cells being hypoxic should proportionately pick-up more O2. The O2 is a radio-sensitizer and increases the tumor killing of the rads. They put an alligator clip on her finger which measures O2 content and all the while she is on an O2 support. When they finish the rads, they remove the O2 support and where her O2 level was 99% before the drug, it plunged to 83%!! We have to wait until her O2 goes up to 90% unassisted before they release her. On Tuesday it took 3 hours, today it took 30 minutes. Obviously the drug does what it is supposed to; I just hope the O2 goes to the tumors.

One more week left and then back on the xeloda, herceptin and most likely one of the HER1 inhibitors.
I will update at the end of next week.

Greatfully yours,
Al