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

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..

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.

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

Prayers
 

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.

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

Theresa you don't say where you are located
 

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!!

Hi to Theresa :-)
 

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! :-)

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.

Theresa-

I have been thinking about you.

I don't know whether my er-//pr- status changed from initial diagnosis to mets, so I can't answer that part. But you and I are so close in what hasn't been working, and I am now on abraxane (had to stop the tykerb due to losing weight from diarhhea), and the abraxane seems to be helping!! Please know that we each reaspons differently to the different taxanes, and while taxotere stopped working for me, the abraxane is dealing with things differently.

Can you still look into that?? I hope so! Please keep us posted...

Kind regards,

Shell...
 

Shell, your story sounds similar to mine, but congrats on staying alive more than two years after your lung mets. how are your lung mets now?

how do you know abraxane is working, sounds like you just started it in June? abraxane or taxotere was what i was considering next but i'm in too poor shape for more chemo, especially with both kidneys looking blocked right now, left stent not working, now right side needs one too.

tks,
Theresa

Becky
 

Becky, thanks for your suggestions. i'll email my onc about adding tykerb or abraxane. my probem right now is weakness, could hardly drag my body into the car to go downtown one last time yesterday. beginning hospice monday, but was allowed to do the faslodex/exemestane while i'm in hospice as it has been labeled "palliative". only decided to do it cuz docs assured me it wouldn't make me weak and sick. prior 2 months on gemzar/cis/avastin were so torturous as to be not worth it, though they got me off oxy for a few weeks. now i cant face anything harsh in what is likely my last few days/weeks with my little girl/hubby/mom.

but i'll ask, thanks again

Lani
 

thanks for your sugestions. unfortunately i'm in hawaii and can no longer fly for a clinical trial, using oxygen 24/7, already nearly cranked to the max.

I've done avastin and herceptin, neither seems to have done anything for me, in various combos. only drug that ever knocked my mets back was tykerb/xeloda, but as i said that only lasted 7 weeks and then nearly killed me.

i dont believe in miracles, but maybe it doesnt matter that i dont believe. if the faslodex/exemestane actually got me off oxy, i'd be on the next plane to Portland where there is an excellent onc of my friend's who specializes in mets breast cancer and also does research.

thanks again for your help, and thanks to all the other responders who sent me good wishes,
Theresa

Theresa-

I know the abraxane is working somewhat because I can breathe easier.

Unlike you, I haven't moved on to oxygen, but by SOB was so bad I think we were headed there. I was taking the abraxane with tykerb, but as noted my diarhhea was so bad, and I've progressed on it, so I didn't feel so bad about stopping it...

I also was so impressed ( as usual) with Lani's response...

Please keep us posted...

Kind regards,

your post title was looking for hope
 

in Spain they are doing a trial with Herceptin and Pertuzumab reported by Dr. Baselga at ASCO ( I watched the virtual meeting last night)

The biggest news is a paper authored by Kent Osborne and Rachael Schiff of Baylor where they were able to cure her2+ bc in mice with herceptin, pertuzumab and Iressa (like Tykerb, but blocks only her1 aka EGFR)

Tarceva, a similar oral EGFR tyrosine kinase inhibitor, is approved for other purposes, I believe --it is just pertuzumab we are waiting for.

There are papers about other drugs which improve the efficacy of Herceptin including fluvastatin and Velcade (approved for multiple myeloma)

In prostate cancer a combination of a very high dose (given in a dosing pattern to avoid kidney stones) vitamin D and Aleve was very effective in metastatic prostate cancer and they were to begin a similar clinical trial in breast cancer at Stanford (don't know if paperwork still in progress or approved)

Just throwing things out there as what you asked for was hope.

Now Becky's suggestions are much more practical and down to earth.

Hope both benefit you!

I'm sending you a giant hug!
 

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

I wish you be one of my best friend lani and becky and many more (no virtual)
 

thank you for all your support for theresa and for all of us ....my dears geniuos you and becky and many more in this site .....thank you for all your time and your knowlogy ...so generous ......to share with us ....

okay back on the attack
 

To all who so generously offered your suggestions or just sympathy, I wanted to provide an update:

I began Hospice today, they have such great support services, and they permit me to stay on the hormonals as a "palliative" for some reason. I've also gotten the okay from the doc I consult with long-distance, to try to add xeloda and tykerb to the mix.

If my onc here will prescribe it, i will try it. i will stop the xeloda/tykerb if it starts to make me feel bad, because I've had enough of that and that was the whole point of beginning Hospice. It most likely means I will have to put the Hospice folks on hold for a while. I'm nervous about this decision because my focus had emphatically changed to having as peaceful a death as possible. But I had surgery Sunday night to replace left ureter stent that was so painful, and put one in on the right, and havent had any pain past two days. I'm feeling pretty good now compared to last week.

that said, my coughing/breathing have worsened since yesterday morning. so.....I'm moving away from "don't talk to me about anything but how to die well" to....could there POSSIBLY be a way to knock back my lung mets without making me feel so bad I want to kill myself.

SO that's my update, thanks again for your support, will keep you updated,
love,
theresa

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

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.

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

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

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

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.

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

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

OUR PROCESS has value
 

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

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

Thanks everyone, and update
 

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

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

Try ABraxane/Herceptin
 

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

prescribing drugs for patients in other states?
 

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

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