Desperate for hope: anyone er-, pr+, HER2+++ but nonresponsive to Herceptin/Tykerb?

[Soccermom]

Dear Theresa,
I am amazed and in awe.. I am sending you strength and power to hopefully get you the remission you need.

Warmly,Marcia

[harrie]

Theresa, we are all in this together joined by our common and united goal of fighting this disease. I know we have never met but you can be assured we are right there with you. You have my thoughts, love and prayers sent your way.
Maryanne

[tousled1]

Theresa,

My heart goes out to you. I wish I could wave a magic wand and make this dreadful disease just disappear, but I can't. I admire your courage and I'm praying that the treatment will work for you. You and only you know how you are feeling and I think you are one strong woman! I will keep you in my prayers.

[lu ann]

Dear Theresa, It breaks my heart to hear your story. It is just so unfair for you to be going through this. I can't even imagine what it is like for you to face this with such a young child and a wonderful husband. I will pray that God heals you and gives you peace. Blessings, Lu Ann

[mslinda]

Theresa: My heart also goes out to you with everyone else on this list. I admire you greatly for speaking so openly about your condition. You sound like a fighter, so keep on fighting with the strength that you still have. Sounds like you have a wonderful family that will be by your side always. Please know that I am praying for you. Just keep on fighting.
Linda
S. Mississippi

[SoCalGal]

Theresa,

As I read through the posts I am reminded of a time in 2003 when my chemo was not working. It was at that time that I decided that my process had great value, especially for my kids, family and friends.

Your process has great value, too. The way in which you are fighting to live, yet trying to die peacefully, is a lesson in grace for all. Death is the great equalizer. We will all experience it, and of course, no one knows when or how.

I will hope beyond hope that something kicks in for you and that you are given more time on this earth. I do believe in miracles, but whether you believe or not, they can still occur.

Love cannot be measured or weighed, it can only be felt - proof is on this site. There is so much love shared between strangers. I hope that you take comfort in how love remains. It is what I think about when I think about dieing. I think about the love that I still feel for both my parents, my grandparents and friends who have died.

We are blessed to have been on such an intense life path. To know what it means to savor each day when our eyes open again faced with all the chaos that is life.

Rest assured that the love you share with others on this earth, will transcend time and space. Of that I am certain. We are all there with you...and we are all sending white, healing, protective light to illuminate and surround you and those you love. Flori

[Mary Anne in TX]

Theresa!
How do you tell someone that you really care about their life and their situation? I don't know, but I know that I do care about what is happening to you. And as I read the notes to you, I realize that if the energy pouring out to you in the messages you receive could make you well, you'd be there.
Please know how very much we wish that we could "fix the pain and the circumstances", but we can believe for you and pray for you and love you. You are remarkable and wonderfully made. Peace and miracles, ma

[TheresaM]

Thanks again for all your kind messages and your encouragement. My breathing continues to worsten, oxygen is at max, making me fear I don't have many days left. Strangely, other than not being able to breathe, I feel just fine, which certainly wasn't true of the past several months. I'm terribly grateful for that, because I felt so bad for so long.

Per Hospice suggestion, I've started taking small doses of methodone at night to get my body used to this narcotic, as this is what my hubby will use to "ease me on my way" when I really begin suffocating. At least , that's what I've asked him to do. It is a great relief to me to have this drug on hand, my biggest fear has always been that fish-out-of-water suffocation death. I nearly had it a couple months ago and it is an exquisite torture.

I'm still taking the hormonals. My conservative, non-breast-cancer-specialist onc here (only one available to me in Hawaii) refused to prescribe xeloda/tykerb for me because I progressed on it in the past, although I explained it was the only thing that ever induced a response in my cancer and since it is oral therapy I wouldn't have to leave hospice. My good onc in OR cannot prescribe in Hawaii so I don't know where that leaves me. I've asked if there is a way for her to prescribe the drugs thru ProCare pharmacy in OR and they would ship them to me here, but I don't know what the medical ethics involved are. It is hard, knowing the true expert on metastatic bc in OR would prescribe something but can't, while my generalist, in-way-over-his-head onc here could prescribe it but won't.

My onc here suggests abraxane instead but I can hardly travel in the car anymore cuz of breathing problem. Not sure what to do now.

Thanks all of you for listening.


Theresa

[Mary Anne in TX]

God Bless you today, Theresa, and your warrior spirit! You bless me so with your honesty and reality. May God send his angels today to bring you today's joys and peace and love in great abundance! Your courage is a gift I will always treasure! mary anne

[mec2450]

Theresea - my wife has lungs mets her2+++ er-pr+ (only 10%) - the combination of herceptin and abraxane cut her tumors by 75% in 3 months and then held her steady for 15 months. Also - what about trying Doxil - its similar to AC but a different cell structure that works slightly different.

I hope you find a combo that works - it it all individual at this point (as you know) so keep trying and if you onc won't work with you find another one. My wife and I have been battling for 8 years and we have on more then one ocassion had to be our own doctors and voice our strong opinions. God bless and good luck!

-Mike

[TheresaM]

THanks again everyone. Update is my conservative generalist onc here is reluctant to prescribe xeloda/tykerb for me since it ceased working on me in the past, although it was the only thing that ever did work on me.

My stageIV bc specialist I consult with in another state is much more daring (and experienced of course) and would prescribe them for me but she's not licensed to prescribe in my state. So....we're trying to figure out how to do this legally and ethically. My insurance plan allows me to consult her even though she is in another state. I wonder if she can prescribe them to me in her state as her patient, and then have a networked pharmacy like procare mail them to my state. Anyway, I'm looking into it. Will have to do something fast cuz breathing is really really getting to be a problem.

Hope you are all well,
Theresa

[BonnieR]

Dear Theresa, I am new here but I join all the others who I know are thinking of you and praying for you.
God bless, Bonnie