update on Linda

[al from Canada]

well, it's not good news.... linda had been off her chemo (xeloda), but still on herceptin, for about 8 weeks now. We had a PET scan to benchmark tumour load shortly after she went off chemo and another for comparison Dec. 20th. This was to ascertain if her liver mets could be considered "stable disease" as is the requirement for the U. of W. Vaccine Trial. The results came back and there was substantial tumor growth. Linda remains on herceptin and is back on the xeloda.

What next? Obviously no Vaccine. However, the wonderful Dr. Webster has offered to arrange a consultation (second opinion) with their top oncologists, an offer we will accept. As far as treatment decisions go; this is the key reason we would go to Seattle. After hearing the targetted therapy reports at SABCS; We are heavily leaning towards an AVASTIN combo of some sort. The main hurdle is financing the cost of the drug as it is not approved here. Kudos to our oncologist who has agreed to procure and administer the drug but it wouldn't be covered. So, I am starting to punch a lot of phone numbers to sort-out this issue. We have appealed to our insurance carrier to stretch the rules. This will be brought to their Board but I'm not holding my breath.
Names of friends in high places accepted and treated with reverence.

Crappy news for the holiday season BUT, at least she has hair this year.

There's always a "plan B"; that's why they call us survivors.
Al

[RhondaH]

to hear your news. I just said a prayer and will continue to pray. I know you and Linda will find the answer and will continue the fight. God bless you both.

Rhonda Hoffman

[Sheila]

Al & Linda

You are both in my prayers and thoughts...not the Christmas present you want to get...I am hoping that the insurance company will give approval...there is so much waste in the insurance industry, it hurts to see them deny a medication that would be so promising, then putting the burden back on the patient...talk about stress.
May the Christmas season and the New Year bring Linda to stable liver mets...alot of prayers are out there for her.

[kristen]

Dear Al and Linda,

I am sorry to hear your news, but if I have learned anything, it's that if there is a way to do something Al is your guy! I will pray for the insurance company~and also with the 2 of you. God Bless, I know it stinks to get news before Christmas, but enjoy that cooking and having everyone over and enjoy the day. Best to you both.

[Unregistered]

Dear Al,

I am sorry to hear that Linda can't participate in the vaccine trial. Why don't you call the makers of Avastin, they might have some reimbursement program like Genentech has for Herceptin. I know you will find a way. Merry Christmas and Happy New Year.

Anne

[Unregistered]

Al, It's good that you're aware that Linda still has many options..you've always been quite good at researching what's out there..I have a feeling that you're on the right track.
I can relate to your frustrations regarding the the drugs...we went through the same thing when trying to get financing for Lapitinib for Carole. Through the generousity of friends, family and neighbors, 23,000 has been raised for her family. I hope that you don't need to go that route and that the drug company will subsidize it partially.

[Ginagce]

I am so sorry to hear this news. I will put Linda on top of my prayer list.

Hopefully if your insurance does not come through the pharma company will.

In the meantime God Bless you both!
Gina

[Joan]

Al,
I was sorry to read your post.
You are such a fighter and Linda is blessed to have such tremendous support. I pray that you find a way and that Linda gets to the point that she is a candidate for the vaccine.
In the meantime a 'Very Merry Christmas' to you both. A Christmas with hair is something to celebrate.
Best wishes,
Joan

[sarah]

Al, Linda,
So sorry to hear your news but you always find a way and you will this time also. Genetech makes both Herceptin and Avastin so maybe since they have a program for helping with Herceptin, they may have one for Avastin. Lots of luck. You both are so inspiring to us all and your knoweldge is always so good.
May the New Year, bring in a better one.
Sarah

[StephN]

we must take this news.
The positive side is that the mets did not relocate anywhere else that was detectable so you have that going for you. And you know the Xeloda was working very recently, so you have that going for you. So, plan A is more than just a possibility - it will work to reduce the tumor load until you can get on to a new plan.

After San Antonio you have some new weapons to seek out and the contacts to bring them about. So glad you and Linda came down as it was really a pleasure to meet both you wonderful people in person.

Keep in touch and let me know if I can assist you here in Seattle. Our door is open.

[Helen]

I am sorry to hear your news. Al, you have always been one of the persons I look up to in this group. I know you will find some way to solve the problem. I will be saying prayers for you and Linda.

Helen

[TriciaK]

Al and Linda, You are such an example to us of the fighting vanguard! I know we will all be praying for you and anxious to hear the ways you have found to solve this problem, too. God bless you both to have a special family Christmas and a prayer for good news in 2006. Love and hugs, Tricia

[Barbara H.]

All I can say Al is that Linda is so fortunate to have you and your support. If anyone can find a way to help Linda beat this disease it will be you. I thank you for that, because we are all benefiting from you tenacity. I wish both you and Linda the best for the holidays and that the year 2006 will be a good one for both of you.
Best wishes,
Barbara H.

[Sandy H]

So sorry to hear this kind of news especially around the Holidays. I will pray that the Avastin issue gets resolved for you. Where there is a will there is a way. Keep up the good work Al. You are a fighter and some times that is all it takes is not to let you guard down to anyone. Don't take no for an answer accept only the best and I know you will. May you and Linda enjoy a Joyous Christmas with your family. Leave your care and worries for Monday. Hugs, to you both, Sandy

[Diane H]

My thoughts and prayers with you both, may the new year bring great healing.

[sherri]

Dear Al and Linda,

I'm very sorry to hear the news, but with Linda's spirit and your amazing support, I don't have any doubt that you beat the cancer. I'm stage 3 and have been accepted for the vaccine at UW (I think it's a different one) and I'll be in Seattle January 12 & 13. Any chance to see you there for the visit? As for Insurance, if you have extended benefit, for sure you can get approval. The first time I called The Insurance company for Herceptin (before it was approved in BC), they told me No. Then I met an insurance broker and he told me to be very aggressive and even tell them if they don't approve I'll go and see a lawyer. And if they say no again it is worth it to spend $200 and get a letter from a lawyer. Next time I called, I told them I need the drug, it's a matter of life and death, before mentionning the lawyer, they asked me to get a letter from my doctor and they will review it. Voila, they paid for 3 month of herceptin for me before BC approved it. Be aggressive and they will pay for it.
Sherri

[Unregistered]

Al and Linda;

I also live in Ontario and go to the General Hospital in Ottawa. I am passing this information along as the system is different here in Canada than the US and perhaps this might help. My onc is Dr. Vince Young who I really like but I don't know if he can help. However, a friend of mine sees Dr. Rowan Segal. My friend has inflammatory bc....not Her2. Dr. Segal had a conference with Dr's at MG Anderson in her case....I was impressed. However, I spoke to another cancer survivor here in town who also sees Dr. Segal and who told me that Dr. Segal trained in the US with Dr. Larry Einhorn who is an associate of Dr. Craig Nichols....Lance Armstrongs doctor. She credits Dr. Segal with saving the life of her husband who had the same type and spread as Lance. He went to Indianapolis for a very specialized operation she arranged. I always thought that if I was in dire straights she would be someone to see. She is known to fight for her patients. Let me know if there is anything I can do.

Cathy

[Cathya]

Sorry...I wasn't registered.

Cathy

[lindaw]

Dear Al and Linda

It is difficult news to hear around this time but if I have learnt anything in this expereince it is that Al is so good and researching and sharing treatment ideas for us so I have much faith that he will this time.
all the best
love
Lindaw

[Nicola]

Hi Al,

So sorry to hear the news of Linda's liver mets. I will keep you in my prayers and hope for the best. I know that staying positive can be difficult when faced with yet another hurdle but you are just the guy to leap over it. If there is ever any research that you need done and you are feeling overwhelmed by it let me know and I would be happy to try to dig in and do some research for you too.

Linda sounds like such a wonderful women and she is so blessed to have you as her friend and advocate, together you can climb mountians.

YAY for the Hair!

Here is a web site that offers some info on financial help for cancer patients, hope it helps.

http://www.cancer.gov/cancertopics/factsheet/Support/financial-assistance (http://www.cancer.gov/cancertopics/factsheet/Support/financial-assistance)

Big Hugs,
Nicola

[al from Canada]

Linda and I would like to thank everyone for their kind words, thoughts, concerns and words of encouragement. Linda is doing much better today and seems to be regaining strength almost hourly as the xeloda kicks in. This new generation of medications are truly miracle drugs and coming back from SABCS; we have very many reasons to be optimistic and positive.

Linda stopped chemo to findout if she had active disease and as most of you know, stable disease is a requirement for entry into the U. of W. HER2 Vaccine Trial. Well, we knew the risks and we got our answer! We also thought of this as a calculated risk that was worthwhile taking because we have faith in the researchers that formulate and test these vaccines and targetted therapies. The truth be known; I don't think they are doing this for the money! Having said that, let's support our explorers, ladies like Ginger and most recently Nicola, because truly, none of this is without risk.

Love to all,
Al and Linda

[Lolly]

Al and Linda, I'd like to add my support to the virtual CHORUS of positive words from this wonderful group of people.

I'm so glad to hear Linda's feeling better on Xeloda...it seems to be a very potent drug for this particular flavor of BC; I have two chemo friends who's HER2 positive cancers are either stable or in remission since being on Xeloda/Herceptin. So stay positive and hopeful, enjoy the Christmas season with your loved ones, and in the New Year we'll KICK SOME BUTT!

<3 Lolly

[mickey]

Anyone ever got xeloda from canada. I might have to go back to in office chemo if I don't get help

[Becky]

Dear Al


I just logged on for the first time in a long while as I have been out of the country and then the holiday preparation.

I am so sorry that Linda's liver mets are not stable. Avastin is a great idea. Are there any other recommended chemo combos to try out? A trial?

My heart is with you and Linda. I feel you are a good friend in such a short time. I just can't say enough.

God bless you.

Becky

[Rozebud]

Al, I am truly bummed to hear this news. I know how long you had been hoping to participate in the UW trial. Keeping you in my prayers that this new round will reduce the tumors.

[Julie2]

Hi Al,

Sorry to hear the news and hoping to see her reach NED status with the next chemo combo. Are you considering lapatinib trial also?

Julie

[Joy]

Al and Linda, it sounds like you are already bouncing back from crummy results. Knowing the tenacity and intellect you both have, i just don't feel worried in my gut. You have helped so many with your research and efforts it is only natural that you two will get this figured out. I'm envisioning a fabulous 2006 for you that is full of new, exciting opportunities.

[Tom]

Dear Al and Linda,

I know the test results come as a sucker punch to you, but I always say the enemy that you know is one you can defeat. You know where you stand now with the cancer, and you will formulate a plan. I have always enjoyed reading your informative posts, and have seen that you are light on your feet when it comes to looking for new answers.

I feel very strongly that the vast realm of information that came out of the San Antonio event will be of help to us all very shortly. I always tell Mom's onc that I want to limp along until the next treatment breakthrough becomes available. Perhaps by the time you are done with the Xeloda, or even Avastin, Lapatinib will have proven so successful that it will receive fast-track approval and be widely used.

I have added your names to our prayer list at church, and will keep you both in my thoughts. I feel certain that you will overcome this twist in your journey as well, and may even find that God has directed you down this path for some as yet unknown reason. Keep your faith strong and your mind sharp as you wisely advised me to do when things get crazy. I hope you were still able to have a peaceful Christmas. Take good care.

Sincerely,
Tom

[lu ann]

Linda has been my main glimmer of hope since I came on this sight that this disease won't kill me. I'm praying for you Linda, that you find the right treatment to put you in remission. God Bless You, Al, and everyone. Lu Ann.

[Montana]

Merry Christmas and a really happy New Year to you both. I will be thinking good thoughts.

Sue

[hope]

Sorry to hear about Linda. I will keep you in my prayers and hope everthing turns out good. God is Great! Hope

[Tami]

Ditto on the prayer patrol - your both on the top of mine. Sounds as though you are already rallying, regrouping and venturing on. We are all holding you in prayer and hoping for the next step to present itself clearly and easily.

All the best
Tami

[Lyn]

Hi there, it is such a bummer getting news you don't want, but Linda is a tough Gal, and will roll with the punches. I am waiting to have tests to see if my Herceptin/Xeldoa /Cyclophosamide combo worked, I had to stop Aromasin so it would give my cancer a chance to grow, bigger that is, I had good news last Xmas NED, to be shot down 2 weeks into the new year, so this year I decided I could care less one way or another what the result was because a new year of battles seems to be our vocation in life and it maybe that the Xeloda is our insulin we just have to work out what to mix it with. I was told yesterday that I am in a win win situation, if it is gone I will stay on the Xeloda combo and if it isn't I will trial the new drug that stops blood supply to the cancer, also being trialed for Leukemia, the weird thing is I feel as if I do not have any big C, but that could be me hallucinating from the pain killers I am on for my sore shoulders and neck, every 4 hours comes around like pulling teeth, I am not addicted just in agony all the time, so I am lucky in one way as far as I know it isn't from the big C, unless the MRI shows something, this is the wrong time of year to try and get tests done, even my GP is on Holiday in IReldand until 9 January. Linda and all of my Pals on here are always in my prayers. I find I can type if I hold my elbows into my sides for support, but I must apologise for not being on here as often as I should.

Love & Hugs Lyn

[Maryanne]

Al,
You once told me there is a reason for everything and most times for the best...well I throw this back in your court knowing once again things will work to your advantage.

May "Miracles' abound for you both in 2006.
Maryanne

[RobinP]

Sorry Al, I will be praying for you and your family. Keep you chins up.

[Amy]

Al and Linda,

Your news is so disheartening...I've been off Xeloda for 5 weeks now because my tumors showed "significant growth" while taking it, along with herceptin. I'm now on Navelbine plus herceptin. My Onc doesn't think herceptin is working but I pleaded with her to keep me on it....I've read where these two drugs have a positive synergistic effect.....along with lots of Prayer.
Stay positive and stay strong.....Linda, you will endure and overcome this!!!
Much love, Amy

[Unregistered]

Al, this michele u

Have you looked into the SPOC program? I know it helps pay for Herceptin if insurancae does not. I will try to find the exact website for you

[Cindi]

Al,

Sorry to hear about Linda's progresssion. We all HATE that situation! I am sure that you have been very busy investigating you alternatives, perhaps it was even mentioned in the above responses, but what about the new trial "

A Phase II Study to Evaluate the Efficacy and Safety Using Combined Monoclonal Antibodies, Trastuzumab and Pertuzumab in Subjects with HER-2 Overexpressed Locally Advanced and Metastatic Breast Cancer" ?

Since Linda had progression while on Herceptin alone, maybe this would be a good trial for you.

I realize you live in Canada, but just wanted to pass this along.

God Bless,
Cindi

P.S. Sorry it took me so long to read your post, just getting back from the Xmas holidays and a bout of the flu. Holidays GREAT, Flu BAAAAD!!!