another inductee into the exclusive brain met club

[Barbara H.]

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

[Sandy H]

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

[eric]

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

[sassy]

Keeping your whole family in my thoughts and prayers.


Sassy
________
Park Royal 1 Pattaya

[Becky]

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

[Annemarie]

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

[RobinP]

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.

[Nicola]

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

[Joy]

Man, is this disease hard. I prayed and held you both in the light while fallling asleep and the 300 times I woke up last night and first thing this morning. And I will continue to send love and confidence to you up there.

[jjfromcanada]

Al and Linda,

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

JJ

[anne]

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

[Cynthia]

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

[Sheila]

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.

[Amy]

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

[Barbara2]

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

[Helen]

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

Best Wishes,
Helen

[Christine MH-UK]

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

[mamacze]

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

[al from Canada]

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