update on Linda

al from Canada · 12-23-2005, 05:12 AM

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 · 12-23-2005, 05:28 AM

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 · 12-23-2005, 05:50 AM

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 · 12-23-2005, 06:15 AM

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.

12-23-2005, 07:30 AM

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

12-23-2005, 09:36 AM

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.

Joan · 12-23-2005, 01:30 PM

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 · 12-23-2005, 02:19 PM

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 · 12-23-2005, 03:20 PM

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 · 12-23-2005, 03:31 PM

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 · 12-23-2005, 04:21 PM

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. · 12-23-2005, 04:34 PM

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.

12-23-2005, 06:45 PM

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

Sandy H · 12-23-2005, 06:26 PM

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 · 12-23-2005, 06:33 PM

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

Nicola · 12-23-2005, 07:43 PM

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

Big Hugs,
Nicola

al from Canada · 12-24-2005, 08:21 AM

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

RobinP · 12-28-2005, 02:19 PM

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

Amy · 12-28-2005, 03:49 PM

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

12-28-2005, 06:54 PM

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