Long (overdue) update...
 

The front of my refrigerator has my handwritten note – it says BE BRAVE.

It’s been 5 ½ years since April 2007, when I was diagnosed Stage 4. That diagnosis came 11 years after my initial diagnosis of early stage, node negative, her2+ breast cancer. I did not qualify for Herceptin in 1996, it was just coming out of clinical trial and was not yet approved for node negative, ER PR negative, early stage disease. I was 38 years old, had two young kids, and I, like many others, just focused on getting thru treatment and getting on with healing and life. I moved forward in life with confidence and focused on raising kids.

I’ve been fortunate in being able to keep this stage 4 disease (mostly) under control with Tykerb, Herceptin, Avastin and Zometa.

In April of this year, I went to NYC to participate in a clinical trial, which seemed at the time, extraordinary. It was my one nutty move in over sixteen years of fighting this stupid disease. I had a friend who encouraged me to fly to NY and join this tiny clinical trial.

After a bit of research, I decided that I was well enough to go off my normal treatment for (6) weeks to try this protocol, and live to tell that tale. Not very risky, or so I thought.

I wound up staying in NY for (14) weeks, away from my home, and all things that make me feel safe. At home, I go in for infusions every three weeks. It is a place like Cheers, where everyone knows my name.

In NYC, I had a daily visit to a clinic, for pills, a shot, and vitals. Everyday I saw terribly sick people, suffering people and dying people. It was an emotional nightmare for me to be immersed in the sickest of cancer world on a daily basis. I knew from common sense, that many people were just too sick to get cured or even helped. Yet people showed up with hearts full of hope.

It was a war zone for me. A place I did not belong, in a city that was not home.

In just (6) weeks my PET/CT showed 0.0 SUV activity throughout my body! It was too good to be true, too easy to be true, and although I felt somewhat happy, I remained EXTREMELY skeptical, saying over and over, cancer is a tricky business.

Despite my skeptical feelings, at the same time I allowed myself the feelings of being part of a cure, of history in the making! I began to remember what it was like to dream big dreams. To fully embrace my future, to feel part of a level playing field – same as all my other middle aged friends who lived life somewhat carefree, as if they would live to be 100!

I could see how narrow my dreams had become, I could see just how difficult my life at Cheers had been, infusions every three weeks for the past 5 ½ years. I thought about a cancer cure, and about how many businesses would cease to exist, how a simple cure would take down a billion dollar industry. I worried about my doctors and nurses, what would they do to recreate their careers, which are all focused on patients in treatment, especially stage 4 patients? In a weird way, I felt the weight of a cure, coming at me all at once. I was alone in NYC, in an enhanced state of fear and exhilaration.

AND THEN: my markers started to rise, and I started to worry. What I didn’t anticipate or fully appreciate was that at the end of (14) weeks, I experienced a bunch of progression, and the SUV’s on the PET/CT jumped higher than ever PLUS now I had some new spots. It made sense to me that at zero SUV activity I would have a “cancer reset” to where I was when first diagnosed stage 4, five years ago. It never occurred to me that my otherwise slow grow disease could morph into fast grow! I felt shocked and stupid. I thought myself an expert at my own disease, but somehow missed this memo.

I have been unable to post about my own experience until today – just feeling so depressed and scared and overwhelmed. Pre-New York, my life had this false sense of being “under control”. I had a rhythm, a plan, I could do it! Post New York, damn disease is on the move and I am in waiting mode…waiting to see if being back on Herceptin – Avastin – Zometa (without Tykerb) will curb the crazy dividing cells or do I need to get on TDM1 or can I even GET on Tdm1, pertuzamab and so on and so forth. A freaking nightmare of obsessive thoughts, fears, chitter-chatter.

AND I cannot seem to get along with Tykerb. It had me spending (3) days in hydration last week, doctor’s trying to pump back what Tykerb poops out: sodium, potassium and HOPE.

Often checking on the board, I see that some long time sisters have passed or are passing. It creates anxiety for me. This was a place to get calm, get connected. I am paralyzed to post, to chime in any real or meaningful way - I am so disconnected from myself.

Today I am trying hard to suck it up – chin up – to get focused on the road ahead. Get help, post SOMETHING, anything, get back into the habit of community, connection, reach out, move forward, SURVIVE, thrive, BE BRAVE.

I do remember what it was like 5 ½ years ago when I was told I had metastatic disease. While I may not be feeling calm or soothed, while I am feeling more disconnected from myself and the world than ever before, I hope that perhaps someone else who was just diagnosed stage 4 could benefit from my story.

I have no answers, and my markers are not exactly going down, while I feel I am going down at the same time I feel I am still fine. And while I don’t know how it’s going to be okay, my history shows me that somehow it will be okay. BE BRAVE.

Re: Long (overdue) update...
 

Hello,
Hopefully someone with good info will post see your post and post soon. Have the docs mentioned TDM1?
Did you see Kim's post about tumor profiling? would this be helpful in your case? Here's the website she mentioned in her post but you can also search for her post "tumor profiling"
Their web site (if you want to check it out) http://www.precipiodx.com/physicians...profiling.html
You sound as if you're pretty well informed and know where to look so I think once this initial shock and anxiety and depression softens, you will know what to push for.
I know it's distressing to us all that we've lost some good fighters this year but we're all different and we mustn't lose our resolve to fight it and find a cure, which I believe strongly is coming soon - or at least to make it a chronic, treatable disease.
like your sticker, be brave, you obviously have been and are, so stay strong. Hopefully by later tonight some of the knowledgable people will have spoken up. Waiting for answers is very tough and not actively doing something - chemo, surgery or whatever is anxious making also but try to calm yourself, you may not get doctors answers until after the weekend which is also always horrible so just take deep breathes and try to be calm. Find some good distractions until you can get the answers.
by the way I lived in LA for many years. Best weather, great sushi! It's late evening here where I live now, so I'll check tomorrow to see if someone comes up with some good ideas, they generally do
big hugs and love sarah

Re: Long (overdue) update...
 

Hi and I'm so sorry you have this progression but don't blame yourself, there are no books on this and we try to do our best as we go along and I think you were brave going to NY for that trial, as brave as all the earlier women who tried Herceptin and enabled myself and so many others to benefit, they took chances too..just as you did. You sound an amazing strong lady and you will find that hidden strength and comfort and peace from within to help you get back to NED and some kind of normal I'm sure, this is a bump and while I don't (sadly) know enough as some of the members here to offer advice I'll be keeping you in my thoughts and prayers for a good response to treatment, hang in there!

Re: Long (overdue) update...
 

An advocate friend of mine commented on Kim's post: " the problem with the Precipio test is that they only look for the documented genetic and molecular targets associated with a particular cancer ("clinically relevant mutations"). Tumor profiling's real strength is in looking for and finding unexpected targets that can be treated. For example,finding that a patient with heavily pretreated metastatic serous ovarian carcinoma who has been told that she was out of treatment options was 3+ HER2+ and HER2 FISH-overexpressed upon tumor profiling . A herceptin-based protocol seems to have stabilized this particularly patient -- an option that she would never have received in the absence of a tumor profile.

Caris Diagnostics is one of the labs that uses a combination of IHC/DNA microarray analysis and gives a choice of either testing only for documented targets or of getting a comprehensive test looking at most druggable targets. A new kid on block just opened their doors this summer. They are called Foundation Medicine and will test the cancer for 182 gene mutations, overexpressions, underexpressions, etc"



So Cal Gal -- I know nothing about any of these three options, but perhaps your oncologist could look into the possibilities. There should still be lots and lots of options available before the "fat lady sings"

PS Next time don't be a stranger to these boards. Perhaps thinking through your options with others who may or may not have been there before could have enabled you to exercise more caution/ entered into the trial with a more realistic risk/benefit analysis.

As with most things even good treatments can cause bad results depending on their timing, dosage, whether or not your body metabolizes them the way others do etc. One should never be faulted for hope.

Perhaps you should post what the treatment was, so others can benefit.

Best of luck. Hope some of this helped.

Re: Long (overdue) update...
 

Hi SoCalGal,

Not sure what to recommend except to hang in there and come here as often as you can as Lani suggested. Please do not give up hope, there are likely many alternatives out there.

Wish I could go down to SoCal and give you and your family a hug....

Re: Long (overdue) update...
 

Oh darling Flori, don't despair. The answer is out there and you will be there to benefit from it. Make my signature your mantra too. You ARE braver than you think.

Re: Long (overdue) update...
 

Wow !! What an experience !! Thanks for sharing. We can all learn from your experience.
I know things are not their best right now, but I have confidence that you will be able to turn things around and improve over time. I know you will figure out how to do that. You are smart, proactive and assertive. That helps alot.
Take good care of yourself. Blessings at Thanksgiving.

Re: Long (overdue) update...
 

Hi Flori.....So nice to come here and 'SEE' you. It's been awhile.

Flori, reading your very, well written post, I felt sad for you. Sad, for the lack of hope I read. I am so happy you were able to share your feelings with us here.

Although, I am not stage 4 and have never been, I wanted to say that I was happy to 'see' you here and know, that the Flori I remember has hope and fight inside her and although it's taken a bit of a sabatical, she will be back....cause that's who you are.

Blessings and love my friend. Stay strong....stay focused and share your heart and feelings always.

Mary Jo

Re: Long (overdue) update...
 

Lani's summary about the tumor profilers is good to know about and hopefully that list and more detailed info will come in also. If we could specify our different cancers that would seem to be a great help.
Take care Flori, thinking of you.
hugs and love sarah

Re: Long (overdue) update...
 

Flori - My prayers and best wishes for you - every word you wrote and every feeling you have expressed, echoes in my heart - you are very very brave. When I had just joined this forum, it was your posts that would cheer me up with their dry cynical humor and yet warm and heartfelt. I especially remember the one post about chaining yourself naked to the MRI machine or something along those lines...LOL

I have been thinking of you a lot lately, especially since we lost Brenda because you used to call her your twin and I knew it must been difficult to accept her loss. You are in my prayers daily and may you soon find the right concoction to get you back on road to recovery. I go down knees and pray desperately for my kids too - they are now 9 and 8. Still a long way to go.

Lots of hugs and prayers,
shobha

Re: Long (overdue) update...
 

Flori, I was just going to send you a pm. I'm glad you were able to finally share this experience, and especially your feelings about it. You could not have described the "stranger in a strange land" feeling when you were in NYC any better. It gave me chills, and gives me pause about whether I could/would be able to bear that. I had a hard enough time this summer finding my spirit (actually im still looking for it!) and I was at home. You are indeed an incredibly brave lady and you will find your spirit. Or maybe it's the other way around, our spirits will find us.

Hang in there my friend
Much much love,
Chris

Re: Long (overdue) update...
 

I found Lani's comments thought provoking as usual. I like the idea of profiling for "all druggable targets".

Flori, there are lots of options. TDM1 could be a great one for you, as you've done so well on herceptin. Or maybe your old standby envelope-pushing combination will still make the cancer remember who's boss.

Re: Long (overdue) update...
 

When I get overwhelmed like that (with fear), I try and remind myself that after every storm does come a calm period. I usually give myself a day or 2 to cry it out, scream, hang up on friends, crawl in a whole. Then one day I wake up and realize I didn't die in those few days- and I still have today and I start living again.

It is a constant up and down roller coaster- sounds like you were blessed with a smooth ride for awhile. Now its time to start anticipating the downs..... THEN UPs. There are lots of UPs to come- get through the grieving then you will feel better.
God bless and thanks for sharing.

Re: Long (overdue) update...
 

Re: Long (overdue) update...
 

That was a beautiful post, thank you.

Re: Long (overdue) update...
 

Thank you friends, for welcoming me back and for your wise info/ideas as well as for understanding...Great suggestion and will for sure ask my doc about further tumor profiling. We'd have to figure out the best place to biopsy a new sample - I think it's smart at this point to send in fresh material. (Did I just say material, as if I'm writing comedy?). Hope to avoid going into the lung as that scares me tons but---will cross that bridge when I get there (and try not jump off in the process).

PS: Regarding the NYC clinical trial - it was FDA sanctioned so it is not listed on clinical trials.gov site. I'm not sure how to share more detailed info. It was sponsored by a group called SMK, and the investigator was Bruckner Oncology in the Bronx thru NY Downtown Hospital. They do not list anything online that I could find, either. I am pretty sure the trial ended when Sandy blew in. I think it was only sanctioned for this year and if they are "enrolling" I would not recommend it until there is a shred of data.

Re: Long (overdue) update...
 

I like the "be brave" sign on your refrigerator. Something tells me you already are, though!! A friend gave me a diary, upon diagnosis, with an expression on the cover postered all over London by British women during WWII: "Keep Calm and Carry On". It gives me a smile just to say it, picturing myself in a WAC nursing outfit running round London.
Sending hope and love your way.

Re: Long (overdue) update...
 

Flori,

Well, Flori, there is NOTHING nutty about seeking H-O-P-E. Who can blame you for being tempted by the hope of a "normal" life, one where your future seems assured. Who can blame you for pursuing the elusive cure? I sincerely hope YOU will not blame yourself for being all too human.

Your update with its sad news was beautifully written. It permitted me to see into the world of Stage IV survival. I so appreciated your your eloquent words:

Despite my skeptical feelings, at the same time I allowed myself the feelings of being part of a cure, of history in the making! I began to remember what it was like to dream big dreams. To fully embrace my future, to feel part of a level playing field – same as all my other middle aged friends who lived life somewhat carefree, as if they would live to be 100!

I could see how narrow my dreams had become, I could see just how difficult my life at Cheers had been, infusions every three weeks for the past 5 ½ years. I thought about a cancer cure, and about how many businesses would cease to exist, how a simple cure would take down a billion dollar industry. I worried about my doctors and nurses, what would they do to recreate their careers, which are all focused on patients in treatment, especially stage 4 patients? In a weird way, I felt the weight of a cure, coming at me all at once. I was alone in NYC, in an enhanced state of fear and exhilaration.

As difficult as this new reality is I do believe you will find NED again, Flori. Adjusting once more to the Tykerb is a trial, but you will overcome. Thank you for sharing your magnificent post. It was really so well written you had me from the beginning, hanging on each word lost in your confession of having stepped from the security of a plan that was "working' into a clinical trial seeking a cure, sadder, wiser, chagrined. It was so brutally honest, Flori. I admire your transparency.

While I am sorry you are posting again under these difficult circumstances, I am happy to be able to enjoy your insightful, compassionate, and delightfully witty posts. Welcome home.

Re: Long (overdue) update...
 

Dear Flori -
Well, once again you have taken a giant leap of faith. The landing on this one was not easy, but you have gained something you otherwise could not.

I, too, spent years in the "go to the clinic for infusion" grind and it does get OLD. Fortunately, NED has held with me, but as years go on, it seems more likely he will leave me (don't have a particular reason to think that, just do).

When I was 29, I moved a few possessions and clothes to New York City, going with a man I hoped to marry, but was not sure about. We eventually did marry. I had to find a job quickly, get familiar with my neighborhood and the subways, etc. Learned to live in a large studio and get around without my car at my disposal. A new life different on SO MANY levels - more like a dream.

So, I understand that stranger in the strange land feeling. There is SO much to see and do in that city, that the stimulus is overwhelming. Fortunately I was healthy and a lot stronger than I am now, or I don't know how I would have managed. The fact that you DID manage shows that inner fortitude of yours is there to carry you.

Welcome home to the West Coast, and a way of life you are used to living. I love how you are getting back in the swing and looking at options closer to your comfort zone.

Re: Long (overdue) update...
 

I have always loved you and your ability to express yourself. And your DOG!
Thank you for coming back to us The best thing I can offer you is my mantra: Keep the faith! I know you will