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

TheresaM · 07-12-2007, 04:40 PM

Hello all: I am er-, but pr+ and HER2+++. I never responded to Herceptin (had it with Taxol/carboplatin and then with Navelbine, no response). I'm stage IV and feel I probably only have a few days to live as my lungs are closing up rapidly. To make a long,painful story short (I've never been NED since dx 3.5 yrs ago, at age 38) I am about to try one last desperate thing - faslodex with exemestane.

I've never been on a hormonal due to er- status. Original tumor was also pr- but mets changed to pr+ (still er-) along the way.

anyone else her+++ but NOT responsive to Herceptin, who is er- but pr+, and had success with a hormonal or any other treatment? TYkerb/xeloda was the only treatment of the many I've had that I responded to, and that was for a lousy 7 weeks.

Thanks so much,
Theresa (mets throughout both lungs, lymphs from neck down thru pelvis, pelvic/abdominal tumors, skin mets. Age 41, 3-yr-old daughter, wonderful young husband of 20 years)

treatments, (responded only to tykerb/xeloda):
epirubicin/cytoxin
taxol/herceptin/carbo
navelbine/herceptin
gemzar/cisplatin/avastin
rads
phase II tyrosine kinase inhibitor HKI-272 trial
8 surgeries including oopherectomy, breast, bowel, recently ureter stent surgery for big pelvic tumor..

Barbara H. · 07-12-2007, 04:52 PM

Hi Theresa,
I just want to let you know that my thoughts are with you and I hope this treatment works for you. I am also stage 4, but still have a few treatments to try. I hope down the road I will be as brave as you appear.
Best wishes and I am hoping for a miracle for you.
Barbara H.

Lolly · 07-12-2007, 05:10 PM

Teresa, I will keep you in my thoughts and prayers that this treatment will improve things for you, and am sending you and your family hugs of support. You've been down a long, tough road, and I hope and pray it will become easier for you.
<3 Lolly

Leslie's sister · 07-12-2007, 06:30 PM

I don't have any answers for you but felt I couldn't read your post without acknowledging it. I will be praying for your recovery along with the prayer that someone on this board knows something that might work for you. Please keep fighting. It sounds like you have a wonderful family.

Bev · 07-12-2007, 07:39 PM

Theresa,

Try to private message Lani or Becky, our resident experts. Also look up clinical trials from the home page.

More prayers coming your way. Please keep us posted.

Bev

Lani · 07-12-2007, 08:01 PM

Unfortunately I have NO PERSONAL EXPERIENCE WITH CHEMO so I can only inform you of what I have read--

First of all regarding the combo they have suggested: exemestane is a steroidal antiaromatase(prevents extrogen from being made in a postmenopausal or post oophorectomy patient like you) and faslodex is an antihormonal that works by making the estrogen receptors fall off (degrade) from every cell in your body that it can get to, and permanently. For a tumor which is ER- this is a strange combination they are recommending.

Since you are so badly off, perhaps you would be a candidate for a trial of avastin + herceptin(which is running and was under the direction of Dr. Mark Pegram, formerly of UCLA soon to be (or presently working out of?) the Cancer Center at the University of Miami or pertuzumab (would be great if the trial giving pertuzumab, herceptin, plus Iressa which cured breast cancer in mice was up and running) The people who have suggested it and done the preclinical research are at Baylor, but I don't know if the paperwork has been completed or approved.

I have heard Dr. Judah Folkman talk about doxycycline as an antiangiogenesis treatment and you could also ask about metronomic (very very low doses of chemotherapy given daily which has antiangiogenic effects)

As I said these are just theoretical ideas, as I am just well-read but not qualified to comment in any other way.

Hope some of these ideas give you something to discuss with your oncologist. If you tell us where you are located, maybe we can suggest an oncologist for a second opinion. Hopw some of this helped!!

Becky · 07-12-2007, 08:06 PM

Try the Faslodex and Aromosin. You may be ER+ as your cancer changed to PR+ along the way. It certainly can help. Secondly, weekly Abraxane with Herceptin and Tykerb are worth a shot. Maybe your onc will give you Tykerb with the Herceptin. If not, try the Abraxane with Herceptin (along with Faslodex and Aromosin). You may get enough of a response to be well enough to find a trial. See if your onc (if adverturous) will try Tykerb with that mix too. It is a Her1 and 2 blocker.

I will see if there are any trials but all these drugs are approved. Call tomorrow so you can get dosed right away and chase those mets away.

jojo · 07-12-2007, 08:04 PM

Hello,

I am sorry that you have been through a LOT of things that could've induce quite a handful of "tasing" to your body.

I feel bad that I dton't have any wisdom words to your case. This is probably very measly to you, but I just want to tell you that you are NOT definitely alone out there.

I, for one, got dx at stage 3b, when I was 35. But I got mets, by getting a stupid tumor in my cerrebellum the following year. I have been stage 4 since age of 35-3/4, and I am still there at stage 4, I am 39 now.

I may not have gone through such surgeries as much as you, but you are in my heart.

Prayers for all! :-)

Mary Anne in TX · 07-15-2007, 03:29 PM

Theresa, I wish I had the wisdom to send you some! I wish I had valid experience to share with you. I have neither, but I can feel the hurt that you are feeling and I hate what is happening with you now. Please listen to the wonderful suggestions given, but most of all I hope that you can experience how very much we support you and love you in your search for treatment and peace. Lots of love and a very giant hug! ma

lexigirl · 07-17-2007, 10:22 PM

Theresa,

You are a bc warrior! I admire your strength and determination. I am so happy that you are having no more pain. That is great! I am hopeful that you will find the right combo to fight back the lung mets.

Gentle hugs to you from CA.

Lexi

MJo · 07-18-2007, 06:50 AM

Dear Theresa -- I really admire you. Thank you for talking so frankly about something we all will face -- BC or no BC. I hope the xeloda and tykerb will knock back your lung mets, as you put it, and you will be surprised by life!!! Otherwise, I know that with the help of hospice, you will do well. I've been thinking about death myself. We don't remember when we were born, but most of us will participate in our dying. I guess we want to do it as well as possible. We are all overachievers here!! God bless. Looking forward to hearing more from you.

Jade · 07-18-2007, 08:38 AM

Theresa, you are one strong, brave woman! And incredibly, amazingly kind and generous to share your thoughts and feelings with us at a time when it's really ALL about YOU. I think of you daily and pray and pray for a turnaround which will surprise the pants off you and all of us, and keep you with your loved ones, happy and feeling good, for a very long time. This world isn't ready to be without you. Hope and love coming your way from a total stranger, yet a kindred sister who really cares.
Jade
xo

harrie · 07-19-2007, 12:23 AM

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 · 07-19-2007, 06:43 AM

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.

SoCalGal · 07-19-2007, 09:11 AM

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

TheresaM · 07-20-2007, 05:31 PM

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

TheresaM · 07-21-2007, 06:56 PM

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 · 07-22-2007, 12:40 PM

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

Soccermom · 07-18-2007, 09:42 AM

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

Mary Anne in TX · 07-19-2007, 09:53 AM

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