Sunday, February 7, 2016

How the Cancer Moonshot will help Metastatic Breast Cancer

There has been conversation on twitter from women with metastatic breast cancer, upset because they believe the Federal Government's "cancer moonshot" ignores women with our disease.  This puzzled me.  When I read the bullet points of what the Feds hope to do I don't see how metastatic cancer patients cannot benefit.  This Moonshot is, of course, meant to be inclusive of all cancers, but in my view, Metastatic cancer is implied all over the place, including breast.

That's the problems with twitter, we couldn't explain each other's position or ideas in 140 charactors. So I will share mine here.

How does the moonshot help metastatic breast cancer patients?

First, you must read the goals as listed by the White House.

They are laudable goals, and if I had any confidence in government, I'd be really excited.  However, we have been fighting a "war on cancer" since Nixon's days, and the the truth is, I am not a believer in the government's ability to fix the problem of cancer (or any problem, really.)  However, for purposes of explaining that their plans are intended to help metastatic patients, let's take them at face value and examine what they want to do

Let's take the bullet points one by one:

Prevention and Cancer Vaccine Development.
The complaint is about the word "prevention."   I don't have a problem with working to prevent cancer but it is true,  working on prevention is unlikely to help a metastatic breast cancer patient. However, there is nothing wrong with prevention as a goal, as long as it's not the only goal. Fortunately, it isn't. Remember, bullet point one doesn't only say Prevention, it also says Vaccine Development. which has already proven to be of benefit to metastatic patients.

Vaccines for cancer are in its infancy, but there have already been vaccines that have been developed to help metastatic people and those with the worst, most aggressive cancers.  There have been small studies that show vaccines have helped people with deadly brain tumors, two conducted by Duke University.  One studied tetanus, one studied a re-engineered polio vaccine in patients with glioblastoma with excellent results.  (That one was shown on 60 minutes, and passed around the cancer community).  Vaccines are not for prevention only.

There are several types of vaccines being looked at to help the most advanced forms of cancer. Tumor cell vaccines are made from actual cancer cells that have been removed from the patient during surgery (metastatic as well) and are being studied in breast cancer (as well as glioblastoma, prostate cancer and others.)  One is in trial now for breast cancer patients who are stage four, called NeuVax, for HER2+ women. GVAX, a therapeutic vaccine made from breast cancer cell lines irradiated and engineered to express the immune molecule GM-CSF, is being tested in a phase II trial in patients with stage 4 breast cancer that does not overexpress HER2.   There are more being studied for metastatic people.

Will this help metastatic cancer patients?  I say 

Early Cancer Detection
I agree that putting money into early cancer detection will not help a metastatic cancer patient.  Since we do not yet know what causes mets,  early detection doesn't seem to be the answer to stopping it. Most of us with metastatic breast cancer, indeed, were caught early stage.   But if, in the early detection science, we learn how cancer metastasizes, that could be of value.  If they are only going to focus on finding cancer (mammograms) rather than understanding it, this section will be a waste.  But we must remember that the moonshot is not only for breast cancer, and some types of cancer are quite difficult to find at an early stage, such as Ovarian.  Finding ovarian cancer early does seem to lead to much easier treatments and a potential cure. Liquid biopsies fit under this umbrella, and they may truly find cancer early enough to lead to a cure.

Will this help metastatic cancer patients?  I say:

Cancer Immunotherapy and Combination Therapy:
Immunotherapy is what has kept me alive.  I would have been dead two years ago without it. Immunotherapy is Herceptin, Perjeta, TDM-1 (Kadcyla), all of which have helped me as a metastatic cancer patient.  CDX-011 is being studied for triple negative cancer.  There is immunotherapy for many cancers - Rutuxan for Leukemia and Lymphoma.  And breakthroughs move to different cancers:  Herceptin has used in stomach and lung cancers, and who knows how more it may help?  We must have many more therapies that help a patient's own immune system to fight cancer. More targeted therapies too, like Gleevac.

Most metsters are on combination therapy - herceptin/perjeta, or ibrance and faslodex.  Studying which combos can be more effective can only help metsters.

Will this help metastatic cancer patients?  I say

Genomic Analysis of Tumor and Surrounding Cells.

This is critical for understanding cancer and especially metastasis.  Once we do gene sequencing and can analyze and compare genetic mutations, we can find out which cancers will spread, which may never spread, maybe stop them from spreading, stop them from spreading more.  The possibilities are endless.  We may learn the deep mysteries of cancer by focusing on genomic analysis which is critical for not only metsters, but every single person with cancer.

Will this help metastatic cancer patients?  I say: 

Enhanced Data Sharing,

As I shared recently, Big Data, along with genomic sequencing, is going to be the answer to cancer. Every cancer may be like a snowflake, with mine different than others with HER2+.  Why have I responded to Perjecta and Kadcyla so well, and others haven't? If we could sequence my genes, and the genes of others like me, and not like me, and find that one difference that helps me respond, we learn something incredibly important.   We could unlock the the mechanism of metastasis with a searchable database of cancer mutations.  And if genius cancer researcher Dr. X at Duke has an idea, and genius biologist like Dr. Y at Caltech have an idea, and a genius geneticist Dr. Z at MIT have an idea, and they can access this database and see something from their own unique perspective, perhaps they can come up with new and better treatments, or a cure for all stages of cancer.

Will this help metastatic cancer patients?  I say:

Oncology Center of Excellence.
Okay, this is just another government agency which will likely come up with a lot of bureaucratic junk that slows everything down.  Sorry, but that's what happens.  Unless they let doctors and researchers do their thing, which is unlikely.

Will this help metastatic cancer patients?  I say: 

Pediatric Cancer
They plan to spend more on pediatric cancers, which I am not complaining about. And they will be studying metastatic pediatric patients certainly.

Will this help metastatic cancer patients?  I say:

Vice President’s Exceptional Opportunities in Cancer Research Fund:
They say, "To launch the National Cancer Moonshot, scientists, cancer physicians, advocates, philanthropic organizations, and representatives of the biotechnology and pharmaceutical industry will need to work together to focus on major new innovations in the understanding of and treatment for cancer."

Sounds nice but once again, too many cooks in the kitchen, too many people with competing interests.  This could be a disaster.  My personal opinion is only cancer researchers, scientists, physicians and biotech should work on this.  Start adding advocates and philanthropic organizations and it starts to get balkanized and you start to get people worried about their own cancer and their own interests.  And, you get people who read this and don't see "metastatic breast cancer" mentioned and because of the lack of three little words start being unable to see the forest for the trees.   Give scientists money and let them do their thing.

However, they go on to say:  "The work that the Vice President will be undertaking will ensure just that – bringing together all parties, breaking down silos, and sharing data to generate new ideas and new breakthroughs."  

They are so right.  The silos of each individual cancer/philanthopy organization/research institution has always problematic. When we don't work together, when we don't see commonalities, we can't solve the problem.  If we can truly break down silos and share information about CANCER, in general, find out what is similar and what is different in every way it appears - we can make huge progress.

Will this help metastatic cancer patients?  I say

In this world of cancer, we advocates also need to break down the silos of our own particular disease state and start realizing a win for one is a win for all.   The word "metastatic" doesn't have to be there if the entire design of the program will help benefit metastatic patients, breast as well as others.  Let's not miss the big picture.  If this works as envisioned, we could solve cancer in my lifetime, the way we have basically solved AIDS.

But we must see the big picture and support scientists and the ultimate goal of this moonshot instead of attacking it for minor things    Unfortunately, since the 1960s,  our country doesn't have a very good track record of letting things like this unfold the way they were designed, and every advocate is going to get in there and want a piece of it, and special treatment for their own disease. They will tear it down so much it's just another government agency that does nothing.

Not that I'm cynical or anything.

Wednesday, February 3, 2016

The Sweetest Words

Top of the roller coaster - again

The sweetest words in the English language include,  "I love you" and "You won the powerball, here is a check for 1.3 billion."

And, of course,  "Pathological Complete Response."

I have been lucky enough to hear two out of three of those phrases.

After being in remission for a year, my PET scan of October showed "moderately extensive metastatic disease."  Cancer was spreading all through my abdomen and spots were appearing in my lungs.  I was resigned, because this is the way cancer goes, but damn.  I just bought a car, I have a teenager who has a couple years left of college and my older son is getting married. My stepdaughter has the most beautiful child on earth and I am not done admiring him.  I didn't think I was about to drop dead, but I was worried I could be on my last year of life.  I pictured 2016 on my headstone.  I had intense pain (which is how it got diagnosed) and couldn't eat.  Living in the world of cancer advocacy,  I know way too many women who heard about a spread and died a few weeks later; this disease can move fast.  I feared the next woman mourned online could be me.

October Scan

After discovering this new spread, my doctor put me on TDM1, aka Kadcyla.

After 4 infusions, we wanted to see how it was doing.  Since my pain had dropped from an 8 to a 4, I was hopeful.  I had a scan yesterday, and today, I heard those sweet, sweet words.

I have a complete response to this chemo.   Nothing that looks like cancer to a scanning machine is left in my body.  Even the tiny spots in the lungs are gone.

I have heard NED twice now.  I am incredibly lucky.  Many women with metastatic cancer do not get this kind of news - ever.  I know a few who had a couple spots of bone mets that were stopped early and never progressed even years later, but most, like me, do chemo after chemo after chemo, cancer growing and retreating, until nothing works and then it's hospice time.  Very few get to hear NED twice, at least, in my (admittedly limited) experience.

I have an amazing medical team - a fantastic doctor.  I can't say enough good things about everybody there.   But so do others, there are many good doctors and caring nurses - for some reason, my body responds well to drugs that act on HER2.

We need more of these drugs, and more for other cancers.

I typically don't ask prognosis questions but I couldn't help squeaking out, "How long do you think it will last?"  My doctor just looked at me quizzically, and I remembered, he doesn't have his crystal ball.  I've been around this block, it could come back in 2 months or stay gone for years.  That's why I normally don't ask.  I smiled and said, "Never mind."  I'll take it as it comes.  That is what we with mets earn to do, and it is not a lesson that can be lost.

Go ahead, knock me down.  I dare you!

In a way, as great as this news is, I feel like one of those punch ball "bop" dolls.  Remember when you were a kid and had one?  At first, you could punch and kick the shit out of them and they kept rising defiantly.  Eventually, you'd punched them so much the air dissipated and they would lie tiredly on the floor for a second before they came up slowly - but they still rose; weaker but with determination.   After some time, wrinkles appeared and half their body would remain flopped over, but the other half?  It still arose.  It was down but not totally out.   Eventually, you'd put them in your toybox and close the lid.

Emotionally, I am realizing - holy crap, I have to spend more years in treatment, still going to doctors, getting chemo, getting scans,  managing pain, not healthy enough to work but wishing to do more, and never knowing the future.  Chemo every three weeks, ad infinitum.  I've heard the best news possible, but cancer isn't gone.  I'm in treatment forever.  My life is about continuing to be beaten and rising again.


Go ahead cancer, kick me.  I'm still popping up, and it looks like I will be for a while.  So my goal (again) is to pump some more air in, in the form of food and healthy lifestyle so I can pop up with a bit more energy.  I am not hitting that toybox for a while.

I asked my nurse if she'd seen anybody have my response after all the treatment I'd been through, and she said no.  Everybody seemed elated at my news. My nurse took a walk down memory lane, remembering how sick I'd been a couple of years ago on Gemzar.   My doctor laughed, "Now you have a good blog post."

He's right.

Statistics state that 22% of women diagnosed with Stage 4 cancer live five years.  Median life expectancy is 2 years.    It will be 5 years for me in May; the month my oldest son marries.  There are no statistics for how many live 10 years probably because few do.  

I don't know why I am lucky enough to get to hear this news, again, when so many wonderful, lovely people don't get to hear it even once.  But if I give any woman hope:  that it can be them, that metastatic breast cancer is something that some of us live with for a while, maybe a long while, that dreams can still come true and goals reached - than I will keep going and posting and putting myself out there.  I will do what I can to help metastatic women, help our voices be heard.  It is not an easy life; it's a life with unique challenges, but it's a beautiful one.

I know I needed to see people like me back when I was diagnosed, to know it was possible to live past what you see and hear online.  So here I am.

When I told my youngest son, he said, "You are crazy good at fighting cancer."

Yes.  Yes I am.

The Sweetest Words

Monday, February 1, 2016

Overdue Book Reports

I see I did review a couple of these.....

It's like high school all over again.  I am assigned People ask me to review their book and write a report review.  I love to read, and pretty much always agree that this is a good idea.  What is better than supporting an author?

In high school I geekily ended up reading the assigned book the first night. I was such a good student, I'm not quite sure how I graduated with an only 2.0 GPA.  Anyway...those thick glasses came in handy, I was a reader.   But somehow *cough ADD cough* I never did the report until the night before it was due, and then I'd be all crazy, writing until my hand cramped, staying up long past my parents went to bed, so busy scribbling I didn't have time to even to dot my i's with little hearts or smiley faces. (Yes, kids, back in those days we not only had to hand-write our papers, but we also had to draw our own emoticons.  It was a primitive time).

Now of course, I'm a mature adult.  I get the book in the mail and read it immediately.  And then I put it down to take a nap, as we adults must sleep a lot.   The next day is chemo.  On the third day, I decide to write about it but I just need to check facebook for a second......then instagram, then twitter, I don't want anybody left out.   And, of course, I haven't played Zuma in a while so maybe just a few games.  Wow, I'm tired, I better take a nap. (*see, adult)  By then, ADD, compounded with chemo-brain is in full force and the entire thing slips my mind.  Not only can't I remember that I had something to review, when I finally remember, the entire plot of the book has slipped my mind. Naturally, I have to flip through the book to refresh my memory, but where did I leave it?  It isn't in my reading room, it isn't in my bed.  It isn't anywhere!  Did the dogs take it?   I think those damn dogs have stolen them.  I have to search under their beds and look behind their bones or under their basket of stuffed toys to try to find them.

Yes, the dog ate my homework.

Greyhound bookmarks

And then because I have cancer and something hurts, and I can't walk around the house anymore,  I think "I'll do it later" and then chemo brain takes over again, and I forget what I was doing.  Until I remember again - and I go through this process over and over.  In the meantime, these poor writers are waiting for me, just as I wait to hear a comment on a post.  Eventually, they give up, sadly, and go about their lives of obscurity, all because I wouldn't review their book.

It's very mean of me, to be honest.  I'm a terrible person.

It's amazing how few of them remind me of my forgetfulness.  Perhaps they are sympathetic to my illness, or since many of them had chemo themselves, have completely forgotten about me.  But one sharp writer recently (and kindly) asked, "Hey, I didn't see your review of my book, did you ever post it?"


I thought I did actually. Unlike many, I remembered her because I see her on facebook.   I may have posted a review on facebook as I sometimes do. But you can't really go through old stuff on facebook and look easily.  However, I told her it'd be on my blog, and a search of this blog shows I never did review it here.  So, I need to be honorable and do what I said, so I began the search.  And this time, the dogs hadn't stolen it.  But when I found her book, guess what?

There was an entire stack of cancer books underneath it.

At this point, with a few exceptions, I don't remember what I was asked to read and what I read on my own, what I reviewed and didn't.

Considering I have a PET scan tomorrow that could give me the worst possible news, I think I better get this off my conscience, don't you?

So I am going to mention them all, with the exception of a couple I know I did review, or ones I think I bought myself.  They aren't going to get a full-fledged review anymore but I can assure you that each one I enjoyed and all are worth reading.

I feel miserable and guilty but what can I do?  I'm just a chemo-addled, ADD, crazy, lazy woman with dogs who like to read.

So here goes.

Renee in Cancerland by Renee Sendelbach.
Renee writes the blog, Team S, Living with Stage IV Cancer and is an amazing woman.   This is a touching and brave book about her life with metastatic cancer, which is in her brain.  If you are looking for a grammatically perfect book, this is not for you.  There are some typos and errors in grammar, as would be expected for somebody whose cancer is in the brain. (And who am I to judge?)  Don't take that to mean that she has nothing to say.  She goes deep into the heart of what it is like to live with a devastating illness that she knows will take her life.  She writes about her love for her husband and children, her hopes and fears.  There are photos of herself and family, and she shares the life lessons she's learned, along with a bit of poetry and a lot of artwork sprinkled in.  (She's a talented artist.)  This is raw insight into the thoughts and experiences of a metastatic cancer patient, and I recommend it.  I support her fully, and taking on a book when you have gone through the treatment she has - it's pretty much incredible.

Kicking Cancer to the Curb, by Carole Miele.
Despite the title, Carol has been living with metastatic cancer since 2010; hers is in the bone.  Carole has been an advocate for cancer patients, likely because of her nursing profession. Her book is full of advice, such as what people should say to patients with mets, and what not to say.  She also describes her experience of living with metastatic disease, including things like mental and spiritual changes.  She shares defining moments in her life that shaped her thinking as she faced this catastrophic disease.   There are poems and quotes that are meaningful to a cancer patient.  Her goal in writing the book is to impart information, support and approaches she has learned to make the experiences of others less burdensome, and she was highly successful.  If you have mets you will get support and advice here.

Beauty After Breast Cancer by Katelyn Carey and Joseph Linaschke.
It's hard to imagine a cancer coffee table book, but this is as close to one as you will get.  Katelyn is a nurse who had DCIS. When she discovered she needed a mastectomy, she realized there were no realistic photos showing what she might look like. She's right, it is a complaint all patients have - we want to SEE what we may look like, and yet there is nothing available.  Sure, plastic surgeons may have photos, but they only show their best case scenarios, and those photos are unrelatable -  it is a woman standing straight forward, her eyes obliterated if you see her face at all, and a lifeless torso from front to side - they are the mug shots of mastectomy.  There is no life in those photos and so nothing that we can see that gives us knowledge or hope.  So Katelyn decided to gather women who have had breast surgery and take realistic photos of women living their lives,  with the hopes that book ends up in physician's offices.  In this book, women will not only see what breast surgery looks like, but learn that this surgery will not end their beauty.  This book is full of women with single, double, partial mastectomies, with and without reconstruction - surgeries of all type.  Each tell their cancer story alongside their photos. They are not models, they are regular woman who had cancer and who overcame this body changing experience.  Not only do you get reality, you get it in a way that shows beauty does not leave just because cancer invaded your life. The professional and gorgeous photos of women is full of joy, and the attitude is that they may have lost a body part, but they didn't lose what is most important. Bravery is beauty, not breasts.™  This should be in every single breast surgeon's office.  I will be donating my copy, as beautiful as it is, to my own breast surgeon.  I always thought I should pop in and say hi to see if he remembers me.  Old-timers here will remember Rockstar Raja!

My Healthcare is Killing me! by Julie Klein.
I thought this book was hilarious, and I really liked it - but to me, it didn't have much to do with the description.  She said she had to confront indifferent and insensitive doctors, bureaucratic policies that prevented her from getting timely care and was in a healthcare maze. I expected her to not get treatment and have to deal with cruel physicians and be on the phone all the time fighting, and it didn't seem that she had a more difficult time than most of us have, in fact, it was  - easier in many ways.   As I read it though, I thought that she seemed to have pretty good insurance and her doctors seemed quite patient. It is interesting the different perspective we can have about the same thing, isn't it?   Aside from that difference, I thought her well-written and funny descriptions of her anxiety and the problems she faced going through breast cancer were all too spot-on, and I'm jealous at how funny she actually is.  Her characters are well drawn, her descriptions vivid and I found it charming.  Definitely worth a read if you are newly diagnosed.

Dr. Susan Love's Breast Book, by Dr. Susan Love.
I don't think this book needs much description - if you are reading my blog you have likely heard of Dr. Susan Love.  This book is considered the "bible" of breast health.  She came out with an update so that is what I have read.  My complaint with this version is the same as my complaint with the last - there isn't much about metastatic cancer.  It takes 509 pages before we get a chapter about mets (which ends 60 pages later) and that chapter is not only about mets, but includes regional relapse too. If memory serves, this is more space than last version, but still not very detailed.  No matter, this is the comprehensive book explaining pretty much every aspect of breasts and breast cancer.  This is the first book I think anybody diagnosed with cancer should get.  There are checklists, definitions, and basic information about breast cancer that everybody should know.  Don't let the size put you off, you don't have to read it cover to cover, just find the parts of interest.  You will handle your cancer much better if you have this as a reference.  You should know what the details mean.

When Cancer Hits Home by Patrick Maguire, MD
Not specifically about breast cancer, Dr. Maguire takes the most common cancers and gives an overview of each.  He starts with a patient story, then describes Risks and Causes, Signs and Symptoms, Diagnosis, Staging, and Treatment.  He seems to think that risk for cancers can be reduced by outside methods, something I'm not so sure about, but the descriptions and stories of each cancer will help anybody who may have cancer in their family and wants to monitor the details. Dr. Maquire has a degree in English, which means this is a well-written book.  A good, general reference for cancer.

Bald is Better with Earrings, by Andrea Hutton
This is subtitled "a Survivor's Guide to Getting Through Breast Cancer"  and it is chock full of tips for managing the symptoms that come with chemo, radiation and a mastectomy. There are tips on managing your port, your nails and your poor hair.  It is an amusing and insightful how-to guide for getting through early-stage cancer treatment, one I highly recommend it.

Death, by Todd May
Confession: this one is written by my cousin, who is a professor of Philosophy at Clemson University.  I have only met him once in my life and we haven't spoken in 40 years and he has no idea that I am sick so this is not pushing a family book.  I wasn't asked to review it - I was given this book by my uncle and found that it was fascinating.  He writes from the perspective of an atheist (guess it runs in the family) but does not diminish the role of religion in facing death.  He writes about what it is like to be human beings who understand our mortality and know what it means and to go on living in spite of knowing our end.  While it certainly reads like a professor wrote it, he brings up fascinating questions about the role death plays in our lives and our society.

Pilates for Breast Cancer Survivors, by Naomi Aaronson and Ann Marie Turo.
I must have said yes to this book when I was in remission and thought I could get healthy again.  Since the book hadn't been opened, I likely got the news of my relapse around the time it arrived.  I confess, I didn't read it in depth but I don't think it's necessary.  We all know Pilates is good for you, and this book has exercises for breast cancer patients with modifications for the injuries we sustain, and even the surgeries we have (such as DIEP or TRAM). They also understand lymphedema and work around that.   Despite the fact that I didn't read it or go through it in detail, I VERY MUCH recommend it.  I had a terrible time after my mastectomy, and had I exercised or had a program like this, I might not be living with the shoulder pain that I have today, 6 years after that surgery. Everybody who has breast surgery MUST do an exercise program.  Period.

A Cancer Companion, by Ranjana Srivastava, MD
Written by an oncologist, there is practical advice on what to expect after diagnosis, (including how to find an oncologist), what to expect before and after treatments both physically and emotionally.  While she doesn't focus on any particular type of cancer, she does describes the basics that are the same for everybody: what hearing "you have cancer" can do to you, what an oncologist should say, what to expect during chemo, how appetite may be affected - even what to say to your kids.  The book is written in a accessible, conversational way.  It is definitely a good book - and advice from an oncologist is always good to have, don't you think?

I hope I didn't leave any off.  From now on, if I do a book review, I'll post it on facebook as it is a place I find quick and easy to do and then I won't get so far behind. My final recommendation is one that I just read on my own, called:

When Breath Becomes Air by by Paul Kalanith
This book is in an entirely different category.  It is an unbelievably beautiful book, with gorgeous prose, written by a physician who died of cancer.  Paul captured the thoughts and feelings that those of us experience in such a truthful, graceful, unsparing way that it left me in tears. We may be able to understand and accept that we are going to die but we still feel the ineffable sadness at the loss of our future and frankly, at the knowledge of our obliteration, and Paul worked through this struggle and shared it with us.  It's a jewel of a book, this reflection on mortality. It will make you gasp with the beauty of his words and weep at the losses that cut so deep. We all die, and as a neurosurgeon Paul knew that better than most. Coming to grips with it at a young age is a struggle, as I well know. In the end, we look through our lives to see what our legacy will be. He left behind two beautiful things: his daughter and this book.  I believe it will be read for years to come and become the definitive book on human mortality. It's simply beautiful. I cannot recommend it enough but buy tissues for when you read it and you are warned - it is a hard read for those of us who are also in his shoes.

I really wish I could add, "Breast Cancer?  But Doctor, I Hate Pink" to this list but the publisher/editor I had was not working out.  She was a small, one person publisher, and I suspect that she didn't really have time to turn this blog into a book and after many months, still had not worked on it, giving me excuse after excuse.  So if you are a publisher who does want to publish my blog....give me a heads-up.  (I do not have the time or energy to self-publish, and I admire the women above who have!)

Thursday, January 28, 2016

The Future of Metastatic Cancer Research

"When it comes to cancer, time matters."  C. Anthony Blau

It's my belief that we are at the very start of cancer research. If you think about how much more we know than we did 50 years ago, sure, we have made great strides;  some cancers that were formerly incurable now have treatments that allow people to live a normal lifespan. CML is one great example. But those breakthroughs are few and far between, and for people like me, who have languished for four years with metastatic disease, basically waiting to die - it is not enough.  Other areas of our life are unrecognizable from before.  60 years ago, there were no computers, no internet, no cell phones, no satellite TV.  Look what we have now.  Yet, the way cancer research is conducted, despite the new tools, is not that much different than it used to be.  That can and should be fixed, and I am writing about somebody who wants to be at the forefront.

I have written a lot about the problem with the philanthropic end of breast cancer, and it is common knowledge that I believe that many charities don't give enough money to metastatic research.  But I don't often write about the problems with research itself.  I did talk about it when I was at SXSW 2015, and I have eagerly watched the process of ASCO's CancerLinQ. I became concerned about that idea though, when ASCO started putting value on cancer patient's lives.  I truly feel they should be expenditure-neutral.  Aside from them, I see nobody else trying to put patient data into the cloud to learn from it, and it has saddened that medical research seem to be stuck in a time warp.

Wait, you haven't been following this?  What do I mean?  Who is doing research?

Well, the research that will eventually turn into a treatment for you is done by very smart people in labs at cancer institutions, medical schools, government labs and pharmaceutical companies.  They don't work together, just as individual businesses don't work together.  They are each answering to their own stakeholder.  Yes, I believe they all want to solve this terrible problem; these are human beings who have had mothers and sisters and fathers with cancer.  I believe in altruism and I know a lot of people go into this field to solve the cancer mystery.

But rules are rules.  The way it works now, research may be repeated across the world. Grants are only funded if they fit existing theories about how cancer works - that means the genius who has a brilliant out-of-the-mainstream idea has little recourse in getting that idea heard.  Any difference in cellular or genetic properties could be the breakthrough we need and could be turned into a treatment, but each individual only works in their own little area and cannot step out.  A research doctor asking for a grant proposal knows that only 20% of ALL ideas are even funded and approvals require small, next level thinking - not the leaps we need.  Steps are slow and incremental. Even when something has made the cut, going through the long process, getting it to the clinic - to you, the patient, is very slow. Imagination is no longer a valued commodity when it comes to research. Yes, safety is important but for those of us who are terminal, we might be willing to throw some safety out the door for an improved chance at life.

In this era of Big Data, it no longer has to be this way.  Big Data has the power to put information at every single researcher's fingertips, and enable the magical discovery that may advance the understanding of cancer.

I'm not alone in thinking this way.   Please watch this amazing video from Dr. C. Anthony Blau, Professor of Hematology at the University of Washington School of Medicine.   His area of interest is metastatic triple negative breast cancer.  This video is ten minutes long and I really think you should take the time to watch, as he can explain to you much more than I can, in a better way.  You will stand up and cheer at the end, I promise.

I had the honor of speaking to him.  He has developed a web-based tool called the Tumor Crowd Modeling Platform, This is designed to so that cancer patients can upload their molecular and lab data for comments by experts around the world.  If you have had your tumor sequenced, you can uupload it to the cloud, and specialists, cancer researchers and experts from any discipline across the world can look through the data. Maybe somebody may see connections that cause a spark, and who knows? Maybe come up with the next Geevac or Herceptin.  Or,  maybe they'll find something that they they can recommend to just one you.

That, in fact, has already happened.  

Dr. Blau told me that nobody has ever said no in answering a question about a mutation that was found that seemed different, no matter what institution they work for, what papers were published or about to be.  Researchers get back to their roots and want to help.

Dr. Blau asked me if I thought this was something cancer patients would be interested in, and my answer?

Hell yes.

There are some very difficult issues he has to surmount.  Money.  Finding people with the ability to get their tumor sequenced and have it uploaded.  Money.  The fear of patient identification. (Not my fear).  Money.

But this is the type of thinking that in 2016 we need.  If I am wrong, you can post below. If I am right, you can post below.

To learn more about Dr. Blau, you can also read his Reddit AMA.

Monday, January 11, 2016


"Mom, are you going to make deviled eggs for the party? I haven't had those in a while."

I hadn't planned that particular menu item,  but when your son is home from college and makes a request...well, it becomes reality - at least if this mother has anything to do with it.  Damn kid tricked me into loving him and wanting to do things for him.  He's 18, a sophomore in college, and 6 foot tall.

All I can do for him now is make an egg.

(And pay for college.)

"Sure."  I add eggs to my shopping list.

We have an appetizer spread Christmas Eve.  It's a tradition I started when I married my husband. Previously, the only thing that happened on Christmas Eve was a hopefully Silent Night.  Tradition stated that the kids got to open one present in the evening -  always new pajamas and a book to read in bed. This "Mommy, can we open just one present, just one.....pleeeeeease?"  appeasement was supposed to help them sleep on that most exciting of nights. A good book and soft, comfy PJs with a stern warning to stay in bed was wrapped and ready for them each Christmas Eve.

Change happens.  Being a single mom and marrying a man with two daughters meant I needed to be flexible and get creative about holiday traditions.  I knew their mother would want the girls for Christmas, so I tried to find way to make it easy and fun for everybody.   I came up with the idea of a Christmas Eve party. I put out a spread, and we drink hot cider, eat a bunch of appetizers, and open gifts before the big day.  Christmas Day was the day Santa came for little kids.  Christmas Eve became family gift day.  Two days of fun, what kid would complain about that?  

The tradition has stuck over the years, long after Santa moved on and the girls grew up.  This year my stepdaughter's son - my beautiful grandchild -  is 18 months old - almost old enough to understand something wonderful happens this day. I fear another change will happen soon as they live nearly 100 miles away.  At some point, travel might become impossible.   But at least for this year, our now firmly entrenched holiday traditions continue.

Now is all that counts for any of us.

Honoring my son's desire, I stood by the sink, peeling eggs, Christmas music Serial playing in the background.  I had boiled just enough eggs to fill all sections of my vintage deviled egg plate.  I cracked the next egg and started to peel it.  I mindlessly chipped off a piece of shell and then another.  I was just prying up a flake here and there with my fingernail.  I kept trying, mostly engrossed in the podcast, the egg smooth in my hands, California water immorally flowing from the faucet as I washed off chip after chip.  After ten minutes, I suddenly realized I was getting nowhere; the egg was still mostly shell. Chip, bang, flick - tiny piece by piece - that egg would not peel.  You've all been there, I'm sure.  I tried to get to that air pocket in the ends of the eggs, but nope, it didn't exist.   I banged the egg on the counter and rolled it around to crack it fully, but nothing happened, it wouldn't peel.   I couldn't find that weird skin in this egg that would allow the shell to slide off. Each time I grabbed a piece with my weak nails, the weaker skin tore.  That shell was firmly glued on.

Shoot.  I'd done 7 eggs with no problem, but the 8th egg was one of "those" - the kind that are impossible to open, some sort of genetically mutated glue masquerading as egg.  Usually when I come across one of those modest eggs who refused to become undressed,  I usually give it up, rip off the white and expose the little green ball of yolk to just use for filling,  but this time I needed a whole egg to complete the plate. So there I stood, chipping minuscule pieces off, slowly, like the baby chicken itself was trying to hatch with its tiny soft beak.  At the 30 minute mark I said out loud, "This is ridiculous!" I cursed myself for only boiling as many as I needed.  I realized that my timing for getting the food on the table was behind because of this one, stupid egg.   Still,  I kept at it.  Chip.  Chip.  Millimeter by millimeter I picked off shell, finally ending up with a whole, perfect egg.  Whew.  My platter would be complete. My son would have his deviled eggs.

A couple of months ago in October,  my being able to stand up and make even something simple like a deviled egg seemed an impossibility.  I was truly, fearfully sick.  I was unable to eat and had lost weight; weight that I could not afford to lose, dipping into the 80s.  I was having terrible pain in my abdomen - rolling on the floor pain - pain bad enough so that a normal person would have gone to the hospital.  No pain med would help. It gnawed on me even in my sleep.   After testing, new cancer was found throughout my abdomen and chest, and I started a new chemo, which made me sick - nauseated, tired, and which incredibly, increased my pain.  I was truly feeling like this was the beginning of the end, and there would be no Christmas party, no appetizers, maybe not even a me.  I hoped to do our normal Christmas,  but I really felt like it wasn't going to happen.  Not that I would be dead, but that I'd be in bed.

In November I started TDM-1 aka Kadcyla. (All HER2 metastatic woman who have dealt with cancer for a while say that - "TDM-1 aka Kadcyla".  Most of us watched the progress of this drug through the FDA approval system, so still think of it as the test name)  My first infusion was awful, like movie chemo.  I was on my hands and knees, vomiting. I had every side effect, from constipation to heartburn to neuropathy.  Everything hurt.  I felt better just in time to get my next infusion, which was easier on me, the nausea down to just a few days.  Then, some of my cancery symptoms were gone.  By my third infusion, December 23rd, surprisingly, I felt much better.  Pain is now down to a livable level (although it is still more than anybody should have to deal with and that is another blog post) and sometimes, if I'm vewwy vewwy still, I don't hurt at all.  I'm still tired but that can be managed, and the nausea, for the most part, is gone.  Incredibly, I can eat again, without pain.  I will have a scan in the next month or so to see what the treatment is doing, and I feel pretty positive about it. Can I once again be responding to a chemo?   I cannot imagine I can feel this normal and still have cancer spreading and growing throughout my system, although by now I know anything can happen.

Christmas lives, and so do I.  The appetizer party continues.

Like all who have metastatic cancer, my mind can be consumed with "lasts."  As my time on earth dwindles, as I know it is, I wonder more about what will happen when I am gone. What traditions will live on?   It may be my last holiday - but will it be the last gathering for my family too?

Just as I was the one who decided on the Christmas Eve party, I am also the one who is in charge of all gatherings.  Every celebration is spent here: Thanksgiving, Christmas, Easter, my husband's birthday.  The planning, the cooking, the invitations, the timing, the gift purchasing, the entertaining - all decisions, it's all up to me, even these days.  My husband now goes to the store for me, and helps clean, but still, for the most part, I am the planner, and fortunately, I have been able to keep it up.

What happens when I'm gone?  Will my husband continue having family over for Christmas Eve appetizers? For Easter?  A barbecue on his birthday?  Will he do the planning and work involved, or will he become a guest, invited to one house or another?  Will the various sides of our family still gather together or will they all go separate ways as more children enter the mix and travelling gets more difficult? What changes will happen without me being the host, I wonder?

I've worked hard for our home to be the touchstone, the place where relationships are renewed and we all catch up, and I wanted it to be the place where we watch the kids grow.

Will that happen still?

Or, when I am gone, will differences chip away at the family until it is no more?

Maybe that would that have happened anyway. It's natural for people to move on and start new traditions, as I did so long ago.   It takes work to keep a family together, to keep traditions going.  I love family celebrations, enough to spend 30 minutes picking at an egg.

Does the rest of my family?

I'll never know.

Tuesday, December 1, 2015

Six Year Treatment Anniversary

Tomorrow is my chemo day and my second infusion of Kadcyla/TDM-1. Tomorrow also marks six years since I've been going in.  It is my treatment anniversary.

December 2nd, 2009 was my first-ever chemotherapy infusion. I remember sitting in the treatment room for the first time, nervous about the chemo I was being given and wondering how my body would react, and feeling like it was all so strange.

I got used to going in over time, it even felt familiar, like a second home.  Yet of course, I looked forward to the end of therapy.  As I finished my original treatment, the nurses gave me a certificate and they all congratulated me.  I took a deep, happy breathe and walked out, thinking I would never have to go back and my butt would never touch a barcalounger again.  I was grateful to be done.  And just three months later, mets were suspected, confirmed in May - and I went right back to the infusion room and that ugly chair.

What "seemed" endless at the beginning turned out to actually be endless.

I have learned how to live with an incurable illness: with the fear, the pain, being sick, losing parts of my life bit by bit.  I've learned that all that really matters is the people in your life, and I have learned that most people are incredibly kind.

Still, there are many who cannot see past themselves. They are too needy to help you or hear you. Some ignore you and disappear.  Some brush off what you say.  Some tell you what to do or what not to do as if it is some sort of talisman that will protect them from your fate.  Many will not extend the type of kindness to you that you need or ask for; and they are unable to understand the hard place you are in, they can only see themselves.  They can't understand the difficulty in learning to face your own death - your obliteration -  or understand that you are living with real suffering beyond what they may know.   What feels like a lack of caring and dismissal hurts more than it would if you were healthy and not experiencing your impending death, because you know there is no time for change or understanding. It feels hopeless, and so rather than try to explain or continue on, we must let go for our own mental health.   One wants to imagine that somebody will wake up and understand, but the reality is that they will not - even after you have died.  Their own viewpoint is the only one they can see.  Many people go through life that way, with blinders on, not only unable to see you, but unable to see anybody.

But this makes the ones who do try to understand, who are generous and humble and kind, who try to learn, so much more special.  And if you reading this, you fall into that category, and I'm grateful for you.

When I originally started my blog and my facebook page, I did it because I wanted to let people know that it was possible to get through cancer treatment and to the other side. I had no doubt that is where I would be.   I am a normal person, nobody special, had no amazing life, was a school secretary and a mom.  If I can do cancer treatment, anybody can.  So I described the tests, the mastectomy, chemo, biopsies - I wrote about what it was like from my perspective, to demystify cancer treatment for anybody who came along and wanted to know what it was like.

When I -shockingly- found out that death would be my outcome, I decided to keep it up.  We need to demystify death in this country too - we are so far away from it. So now I write from the point of view of somebody who will not survive cancer.  And many people can accept that, and some - well, they cannot.

I am still here, six years later.  It is increasingly unlikely that I will be here in another six years.  Even six months seems iffy these days, although I am early into my latest chemo and I can be lucky and have it shrink my tumors.  I imagine I will find that out in a couple months.   But now my life is harder, and full of pain.   I don't want this blog to be a litany of complaints, but I also want it to be true.  They say that when it is in your liver it isn't very painful, but mine is now across my abdomen and in the lungs.  So there is certainly pain that I am having difficulty controlling.

There is no doubt that the end feels much closer than it used to, but that may be the pain talking.   I don't think dying of cancer is a very easy thing to do.

Remember, what we Stage 4 metsters want most is understanding, so if you know one of us, the kindest thing you can do is just listen.  

Happy Anniversary to me.


Sunday, November 29, 2015

Loss of Appetite in Cancer Patients - Part Two

So, your loved one has advanced cancer, is not eating, and you want to help.

First, please read part one.  You must understand that what you think is a loss of appetite is more than that - it's a true physical inability to eat.  It's a symptom and a complication of disease and not something we control with willpower.  No matter how much you beg and cajole, eating regular, normal meals is a medical impossibility and will only cause more stress.  You might as well be begging somebody with a broken femur to get up and run a marathon.  

I also want to make clear that I am not talking about the common loss of appetite that happens in an early stage cancer patient due to chemo, surgery, or as a medication side effect.  Depression and some medications can also cause a lack of appetite in early stage cancer patients, and so appropriate diagnosis and medications may help.  Any lack of appetite should be discussed with a doctor.

I am talking about something very different.  I am talking about what happens to an end-stage, terminal cancer patient - anorexia-cachexia.   This is a wasting condition where muscle is lost, metabolism is revved up yet food desire disappears, and it happens because of their disease, not because of treatment.  Those who have cancer anorexia-cachexia experience it even when we are off treatment.  Mine started before I started the new chemo, when the cancer (unbeknownst to me) began spreading again but when I was on the same therapy I'd been on for 2 years.

So what can you, as a caretaker, do to help?  I will tell you what has worked for my home, and you can adapt this for yourself.

Communication:  Don't ask the patient to make food decisions.

I do not want to be asked what I feel like eating, because the answer is nothing.  My husband used to say "What do you want for breakfast?" or "Do you want eggs or pancakes?" "Do you want soup for dinner?"    I truly cannot answer that question because I don't want anything.  And not only do I not want it - it makes me angry to think about. Angry, frustrated, annoyed....You might as well ask me, "Do you want to be stabbed in the lung or the liver?"  Neither!

I truly cannot make food decisions at this point.  I told my husband that he is not allowed to talk to me about food. Bring me food or don't, cook or don't,  but leave me out of it.   I won't acknowledge that question and he has stopped.   All decisions about food are his.  I think I eat a tiny bit more since he stopped asking me and just started giving it to me.

Shop: Put yourself in the role of decision maker.

For husbands, or at least for mine, this may be something they aren't used to.  I shopped and I cooked. Now I am beyond shopping for food.  I used to go to Whole Foods and buy all the things I'd love in the hopes I could eat, yet it would rot in the fridge.  Now, I don't even want to see it, my stomach roils just thinking about food.  So, take it upon yourself to shop for your loved one.  Try to keep the things you know she'll eat on hand, and keep the things you hope she'll eat around too.   Don't worry so much about nutrition as much as intake. If all I can eat is cake or 3 musketeers mini-bars, well, make sure I have cake or candy in the house.  Don't substitute what you believe is healthy - it's not going to be healthy if we can't tolerate eating it.   

Take Control of Food for your Loved One:  Bring foods every few hours.

While I won't make a food decision, I also don't want to be on my own with food intake because frankly, I wouldn't eat. At all.  I know mentally I have to eat but cannot tolerate the thought or the pain that comes later, and most food sounds disgusting now -  so I need help.

Despite the fact that everything but candy sounds awful, if something is put in front of me at dinner, I sometimes eat it. 

I have no appetite and won't ask for it, but if a cup of hot soup, or a cup of tea and cookie is placed in front of me on a cold day, I might sip it.  Maybe just a sip ... but it's something. If a tiny plate of fruit and cheese is placed in front of me at lunch, I might nibble at it. (Tiny being a few grapes and a tablespoon of cheese). I certainly won't get it myself and if you ask me if I want it, the answer is an unequivocal no. If it magically appears without questions or expectations,  maybe I'd try. Maybe I wouldn't.  But it is better than talking about it, which I am certain to not respond to.

Size Counts. Food hurts, we don't want to see it.

Don't put a big bowl or plate of anything in front of me.  It hurts to even look at it.  Keep it small.   Light and airy.  I don't know why looking at a big plate of food bothers me but it does.

Notice taste changes.  Cachexia can cause things to taste weird.  Keep our new likes in mind.

If I can't stand garlic anymore, don't put it in anything we share, even if you like it and even if you know I used to love it.  Now, it's different.   I can no longer tolerate onions, garlic, or any kind of intense flavor but used to put them in everything.  I still like salty food. I like popcorn with no butter. And sugar is something I never cared about but now like.

Taste changes can make things we enjoyed formerly undesirable.  So pay attention and make sure those things we now like are on hand.

Choices:  Provide tasty foods.

My husband is a truly terrible cook. (Sorry hon.)   I finally tried a food subscription service, where meals are delivered with recipes.  It's expensive and I hate that I have to pay for that with a kid in college - but that said, I eat a bit of it. There are several of these services. They give you choices of meals weekly and deliver them to your home.   The right amounts are sent with recipes, and my husband just has to put the meals together.  They are creative and flavorful, and I like them.  That doesn't mean I can eat a full meal, but when I taste something that is good, I can usually eat a few bites.  When it was him cooking on his own, I had no incentive at all to eat.   Taste still counts, even if we like fewer and fewer things.

Diet: The time to worry about nutrition is over.

Nutrition is important when you are an early stage cancer patient regaining your health.  Everyone should eat well.  But when we are this sick, and hardly able to eat, getting calories in is more important than a balanced diet.  My oncologist says any calorie is a good one.  Your ideas about perfect nutrition have to go out the window at this late stage.  That doesn't mean you shouldn't give a cancer patient nutritious foods, but only if they will eat it.  Give little balanced nutritious meals through the day and see what the patient eats. If it's pretzels and grapes, that is better than nothing.

Nagging:   Don't.

We know.  We really do.   If you get the urge to nag, do something instead.  Put small amounts of food in front of a cancer patient without asking a couple times a day - and take it away whether it's eaten or not, and say nothing.  Ignore your feelings of upset, time/money wasted or rejection if it isn't eaten.  What's the ultimate goal?  Your feelings, or helping a cancer patient with a symptom?

Know you tried. You showed your love.  It's better than nagging. If you want to help, this is what help looks like.  If you don't, that is fine, understandable really - nobody really wants to be responsible for another adult's food intake.  Just don't put it back on us, which is what nagging does.

Remember, you can't force us to eat.  You can't talk us into it.  All you can do is tempt us and make it easier.  If we can't do it, you did your best. Not only did you try to help us, you did it leaving our dignity intact.  You can remember that with pride.

Understanding.  Truly learn this isn't within our control.

Imagine, if you were forced to eat something disgusting and got punched in the stomach with every bite which then caused hours of pain -  eventually you wouldn't want to eat either, even if you had an appetite.  When you have no desire for food and a food revulsion, when your body doesn't want food any more and with each bite there is real pain - it doesn't take long to learn to stop.  Try to understand how hard it is for us.  Try to understand that it is out of our control, and that it is our bodies doing this and not our minds. 

Bottom line:  If one of the symptoms of having a disease is a runny nose, hand us a tissue, don't try to convince us to make our nose stop running.

Do remember, it's nobody's fault.  You can't talk us out of pain, you can only bring us a pill. You can't make us not tired, you can only let us rest.  You also can't make us able to eat, you can only provide foods and leave the rest to us.

We want comfort, love and acceptance, especially at the end, not fights about food.

More resources:

Why do cancer patients lose weight rapidly

American Cancer Society (halfway down the page)
(By the way, while this says it happens in the last 3 months of life.  Like everything with cancer, there is a continuum.  I've already experienced it for longer than 3 months. Most people do stop eating as part of the dying process no matter what disease they have, and it is a sign that time is short. But others can go this way for a while, my mother did for about 2 years (she did, of course, get quite a lot of calories from alcohol).  I don't think I'm within 3 months of death although my next scan will be telling.  It is becoming clear that this disease is going to win for sure and I will not be one of those who gets ten years.

Impact on Relatives

Cachexia in the terminally-ill relative