Category Archives: About Peggy

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We hear of “patient engagement” as a topic, but it can be misused in a self-serving way! For some hospitals, it comes in the form of a survey that asks your opinion of the newly-remodeled lobby, but never asks if you were properly treated while in the hospital.  That is my least favorite and most cynical use of ‘patient engagement’ efforts.

We patients must be engaged, especially needed in this cancer world.  But that is a huge challenge when we have not be taught by experience or the medical world to do so.  Just how does the nervous or bewildered patient do that when the problem is confusing or terrifying?

Starting with what we know about ourselves and knowing HOW to explain it is obvious, but not easy.  Just how to do that?

See what doctors are learning, as in the following short article.  There is a link to a Patient ToolKit  http://www.patient-experience.org/PDFs/Patient_Toolkit_v4A_Fillable-Format.aspx developed by others who work with me to improve diagnosis.  This is available for anyone to use, can be filled in online or printed out as needed.

Simply, it helps the patient organize his symptoms, concerns and history in a way that MIGHT be more acceptable to the doctor.  It can remind you well ahead of the appointment what to do so that the appointment is more useful and efficient.

Your ideas gratefully requested.

http://www.patient-experience.org/Resources/Blogs/DM-Blog/Blogs/July-2015-(1)/Engaging-Patients-Before-You-Even-See-Them-Tools-t.aspx

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by | July 30, 2015 · 9:58 am
by | December 14, 2014 · 4:16 pm

Into the Abyss: Becoming a Patient

My first foray into the world of “patient” began the day I was diagnosed with kidney cancer.  All my other visits with the doctor, my hospitalizations to have children, and even the odd time I received IVs of blood never had turned me into a patient.  To be deemed a patient was for other people, for those who were sick, or chronically ill.

That was never me until a wish for cosmetic eye surgery led me to get a blood test and the report of extremely low red blood cell count, a hemoglobin measure.   Mostly aggravated that low reading would hinder my plans to have new eyelids, I assumed my approaching menopause  had shifted things a bit for me.  Get “re-calibrated” with some blood, be a bit smarter about eating other than M&Ms for lunch, and all would be well.

Well didn’t happen that way.  Being told by my GP to go to the ER to be admitted to test for my low red blood cell count was more an annoyance, and bewildering.  The GP told me to be careful driving, as I could “bleed out”,  were I in an accident.  Had I taken him seriously, I might have been better off, but who wants to become a patient?

Three pints of blood, a colonoscopy, an endoscopy and a doctor assigned to me by the hospital later, I was sent home with a packet of iron pills, and reminder to eat very well, especially protein.  More liver pate and red meat, and fewer M&Ms, and an improved diet would fix it all, I was told.

Months and more tests later, looking less and less healthy, losing weight, being polite to the doctor, being on time and starting to fade away, I did not know that I was dying.  As I could later determine from the doctor’s notes, he thought I was an alcoholic in need of a liver biopsy to “confirm the cirrhosis”.  That biopsy required an ultrasound, and the race was on.

The ultrasound tech was chatty and friendly, until a sweep of her wand across my lower right belly. She turned herself and her screen away from me and stopped talking.  Knowing the liver was on the left, and her wand was on the right, I had a pretty good idea that the kidney was the new problem area.  Of course, my questions went unanswered, but was told that I would have a CT scan later than day.  But still no answers.

Still in the flimsy hospital gown, I discussed with my husband what was likely my new kidney cancer diagnosis, and figured I would just get a neat little incision, where they could take out the neat little tumor and I would get on with my neat little life.  Off to the CT scan, with more techs discussing me, carefully out of earshot, ignoring my pleas to explain what had been found.  “You doctor will talk to you” was the non-response.

But he was pretty non-responsive as well, waiting until late in the evening before telling me what I already knew, that I had a mass on my kidney.  Masses don’t belong there, so it must be cancer, but he was unwilling to affirm that.  He would find me a urologist the following day, he promised.

That recommendation given without further info, and in light of the frantic internet search, I was not enthusiastic about his recommendations, and especially when the urologist failed to mention any expertise with kidney cancer on his website.  Ain’t a good sign, says I, so plan B was to get to the Mayo Clinic.

I had grown up in western North Dakota and had learned that fancy health problems spurred a trip to Rochester, Minnesota.  Within a few days, I was in the Mayo Clinic, going through a series of new tests and imaging with the urologist appointment at the end of the day.  Try to coordinate that in less than 24 hours, and you will appreciate the miracle of Mayo.

At that appointment, my neat little tumor was now described as a malignant mass, about the size of a softball.  It had pushed the kidney up toward the liver, and thus caught the attention of the US technician.  Bad enough, I thought, but the subsequent CT had also shown my lower lungs to be full of tiny mets.  Mayo’s more thorough CT showed my entire lungs to be filled with tiny white metastases.  Not only did I have a huge tumor, my lungs were essentially a tumor colony.

Stunned, and nearly deafened by this news, I struggled to hear the doctor say, “I have a plan for you.”  With that hope and that plan, I began to breathe again.  And have been doing so for the last 10 1/2 years.

Thanks to so many people at Mayo, including Dr. Brad Leibowich, his staff, the angel nurses, and the Mayo brothers who created this wonderful place.

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Filed under About Peggy, Newly Diagnosed, Patient Resources, Your Role

by | April 6, 2013 · 2:04 am

It’s Spread! Is It Too Late to Do Anything?

http://www.urotoday.com/Renal-Cancer/tumour-burden-is-an-independent-prognostic-factor-in-metastatic-renal-cell-carcinoma-abstract.html

I love this study, as it really symbolizes the tremendous change that has occurred in kidney cancer treatment these last 6 years. It is remarkable that the 124 patients are described as having already received first- line treatment, and were now in their second-line. These same metastatic patients might have received neither just six years ago.

The study was really not to compare the response to the treatments received, whether Sutent (sunitinib),  Nexavar (sorafanib), or placebo.  (Why any party chose or was chosen to receive a placebo is another, darker question.)  That the median follow-up was 80 months is a triumph by itself.  This is in contrast to the clinical trials that often show just a few months extra time which we and politicians can focus on, when the reality of much longer responses is clearly shown here.  Of course, these longer survival times came from those trials which showed those few months–and this shows the reality of many more months and years of life!

Metastatic tumor burden(TB) was measured, based on the size of the sum of the longest unidimensional diameter of each targeted lesion.  The additional increase of 1 cm (about 3/8”) was significant in predicting response to the medications. Siimply, adding the one-direction measure of the lesions and comparing them showed that more tumor was a bigger problem.

One can also assume that to remove as much tumor as possible may be helpful in maximizing the benefit of the meds given, although this study does not address the actual types and locations of the mets, nor indicate why no other therapies, surgery or ablation, were used.  With 124 patients this would represent a mix of individual experiences, more like the typical patient group.

What does “median follow up of 80 months” really mean?  A median is not an average, but a measure of the time point at which ½ of the population studied had follow up less than 80 months and ½ had follow up for more than 80 months.  Since this is considered a long time in clinical trials and becomes more of a longitudinal study, we may never know the average length of time that these patients had either PFS (Progression Free Survival—time until the mets began to grow again) or OS (Overall Survival).  In any case, we are aware that following this second-line of treatment, there are still more therapies and interventions which may be available.  And even more options are up for FDA approval as I write.

All these options and the greater success of each muddies the study waters, but clarifies the hopes of those with metastatic RCC, or are at risk. This study proves that tumor burden (TB) is a disadvantage. Most patients have naturally assume that more cancer is worse for you than less cancer—who knew? But this gives weight to the notion that the removal of some tumors, if not all, can be beneficial used with targeted therapies. In the past, some oncologists have discouraged additional surgery in the light of metastases, with the implicit message, “It’s too late, and won’t help you anyway.”  Not the doctor for me.

The story is quite different right now, but patients may need to tell this to their doctors–in the language that the doctor speaks. Certainly, there was a time at which doing more surgery for mRCC patients added little, if anything, to survival and probably even less to the quality of life. That no longer is the case, and those older studies no longer have meaning.  While each patient must be treated as an individual, in light of all the variables that impact his health, there is increased optimism for the metastatic patient. Aggressive and early treatment can no doubt extend life and make it worth living.  

 

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Filed under Ablation & Radiation, About Peggy, Biological Systemic, Clinical Trials, Immune Therapies Old & New, Medications, RCC Basics, Surgery, Targeted Therapies, Your Role

by | January 27, 2013 · 10:12 pm

Immunotherapy Part 3: Am I Cured? And How Big is 9mm?

Halfway through my high dose interleukin 2 (Proleukin) treatments, having completed weeks 1 and 2 and into the second rest period, I got the second most important scan of my life.  The most important CT scan changed my life, with its image of a tumor larger than a baseball, and countless tiny specs of white death in my lungs.
This new scan in August of 2004 would let me return to the hospital for more of the immune stimulant, Proleukin, which revved up my internal immune system to the max. My system was then to recognize and fight off the residual kidney cancer that had settled visibly in my lungs and any other new sites, as yet unseen.  The new vocabulary of cancer forces me to say that while hundreds of tiny lung mets/lesions/nodules–no wonder we patients get confused–were not just there, but ” visible”.  Implicit was the message that many hundreds more were  invisible, certainly  alive and thriving, just not yet “imaged”.
The tools of imaging cancer are varied and unequal, some more effective for some cancers, and yet inadequate for others.  First of all, the tumors are measured in centimeters and millimeters, and that language shift alone makes them even more inaccessible to Americans.  Just how big is 9 millimeters anyway?  And a centimeter seems a pretty vague measurement after years of holding thumb and forefinger together to how 1/2 inch with decent precision. Is a change from7mm to 9mm cause for alarm?
Plus the panic of hearing “cancer” drives any math computation out of one’s head.  The only math question that can be asked and then not understood is, “How long have I got, doctor?”.  And then there is the matter of what can be seen with which instrument.  When doctors tell smokers that their  x rays are clear,  naive civilians translate that to mean their lungs are free of cancer. A rough interpretation might be more like, “Your tumors–if you have them–aren’t big enough to be captured by this 100 year old device.  Come back when we can see something/you are pretty much past help.”  Notice that I provide the translation here.
The x ray is more like using a child’s microscope to look at something; great for noticing crud on your pet’s hair, but not quite like those grownup electron microscopes which can see cells.  Note to kidney cancer patients–don’t even bother.
Another imaging device is a PET scan, which measures the activity of cells, and which I understand a quick snap shot of liveliness of the cell, and it manifestation, the tumor.  Is it chowing down on the body’s nutrients faster than the orderly cells?  That activity will “light up” in a PET scan, so the lazier cancer cells might be overlooked.  Not to effective in kidney cancer, whose tumors are often slow-growing.  That is also possibly why kidney cancer can establish itself so thoroughly in so many patients, not noticed until a broken rib or vague back ache or a non-existent ulcer finally results in a CT scan. Note to lots of kidney cancer patients–don’t even bother with a PET scan.
So a CT scan, with contrast to enhance the vague and ghosty images is the way to go for most RCC patients.  A blood test to see if the single kidney can handle the assault of the imaging fluid precedes the test, and then the patient settles onto a big padded tray which is drawn slowly into a large doughnut-shape machine that somehow can see into the patients insides.  I’m not even trying to explain that.
That exam is not painful, not pleasant, and not anything you can study for; you simply submit, as patients are supposed to do, and then the impatience begins.  Most patients must wait to get their results from the doctor, and this is the longest wait of one’s life.  Am I dying more efficiently than before?  Are the cells multiplying more quickly?  How long have I got, doctor?
But I had learned the secret, which I now announce to all.  You are ENTITLED to your own reports, and with a bit of research as to when they get read, you can go get them.  Apparently for many imaging centers, this comes as a surprise, but we are all grownups and can explain that.  Sometimes your doctor will need to hear that too.  I have always just called ahead to the “Medical Records” department and asked for the report to be ready, as I have no patience…again.
But in August 2004, I had to be outside before I could read it.  To read a report of impending death inside a hospital with its metal window frames and linoleum floors and sad, bent people waiting their turns is too harsh a setting.  Immediately stepping outside, I could rip open the envelope, and read that my lung tumors were shrinking, even those big ones.  The 13mm lesion was now 8x9mm, the 8x7mm lesion was just 4x4mm.  And the countless other unmeasured one?  They were likely shrinking, too.  And 9mm is .354 inches, which I still can’t measure between my thumb and forefinger, but the CT scan could, and that was good enough for me.
Back to the hospital, a much easier trip than before, to get two more week-long sessions of HD IL2. The mets were shrinking and I was getting more ammo against them.  The cloak of invisibility was pierced and my immune system was working again.

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Filed under About Peggy, Biological Systemic, Immune Therapies Old & New, Surgery

by | January 24, 2013 · 10:52 pm

Immunotherapy Part 2: Is There Any Hope?

My first week at home following the CT scan was to be a recovery week, following five days in the hospital. When I had anticipated that first weekend, post Proleukin/High Dose InterLeukin 2 treatment, my plan was to go to a local kidney cancer meeting.  I would be a bit soggy, post “flu”, but not contagious, just recovering from the immune stimulant.  I planned to sit around, smile bravely, and look like those heroines in the old days of consumption.

As a measure of my mental competence, it was several weeks later before I realized I had missed the meeting, and in fact, had missed most of the week, and a good portion of the recovery week as well.  My response to the Proleukin was such that I did not receive but 9 of maximum 14 doses and had to spend an extra day in the hospital to recover.  The last thing I do remember of that week at UCLA was a doctor walking me down the hall, and seeing a sign overhead.  At least I could read, and knew I was in the hospital, and then somehow I was home.

Flashes of memory come to me of those first few days, retching in the toilet, and then being sat in the shower on a tiny plastic stool, and being scrubbed by my daughter, a miracle of an experience. And more odd oblivion.  At this time, my mother-in-law was headed deeper into an oblivion of Alzheimer’s, and I joined her.  One WEDNESDAY morning, I was reading the paper  v e r y s l o w l y…not my usual style, and I noted that the LA Times used Tuesday’s date.  Obviously this was major mistake, which rather incensed me, and tried to interest my husband in this crisis.  “What day is it?”  He also thought it was Tuesday!  For that matter so did the local paper, and the Wall Street Journal!

Naturally, I had misread or misheard this, so checked again, and asked again, and asked again, and read again.  Even the damn computer was in on this mistake, but I waited patiently for corrections to occur, and still they–now the entire world–claimed it was Tuesday.  And the family was getting a little odd in their responses to me. “Still Tuesday, Mom…”.

Not once all that Wednesday nor the Wednesday that followed it did I ever think for a second that I might have been mistaken.  My testing, my logic, my checking and rechecking all these reliable resources did not change my mind, but it did cause me to wonder why everyone else was wrong.  I figured the nice thing to do was to wait until they got it right.

It took me several months and a number of similar events to realize that this was a tiny gift from HD IL2–and insight into craziness, or whatever word describes the inability to accept fact in the face of facts from trusted and even beloved sources.  No wonder poor Nana could get so angry at all of us, and no wonder that telling her something in a logical manner was futile.  Her brain had been compromised by Alzheimer’s and mine by the medication that was trying to save the rest of me.

So was it working?  Brain issues aside, I felt fine, or so I told my oddly polite and amused family.  Taking a plate to the sink proved to me that I was doing all my household duties.  Writing a 25 word email in 30 minutes proved my computer skills were intact.  But what about those precious lungs and the icy white granules of tumor dividing relentlessly?

Without proof that the IL2 treatment was slowing down the growth, I would not have been permitted back into UCLA.  To push the immune system into the kind of response that causes it to seek and destroy the cancer cells so well-settled into my lung, not only the visible ones, but their countless and invisible spores, is dangerous.  No doctor wants to make a patient sick without hope that this synthetically induced sickness would drive out the virulent and relentless cancer cells, so it had to be shown to be worth the risk.

As I really became aware that I had missed one week and more in my life due to the treatment, and that I had no control of memory over what had happened in the hospital, I realized how hard it would be to readmit myself to the hospital.  Excuse after excuse–all good ones, of course–delayed my walk into the lobby, accompanied for the first time by fear.

Years earlier, as my father lay dying in our family room, he told me that he was afraid to go to sleep, for feared he would wake up dead.  We grinned wryly, and promised not to let that happen, though it did–everything but the waking up.  I was raising my hand and volunteering to do  just that, walking back in through the gray and damp parking entrance to UCLA.

Coming out the second week with equal blank spaces and some low blood pressure “events”, I was still alive, and could plan for my CT scan.  Back to the same place where they had first found and failed to tell me of the lung mets, and let them try again to “image” them.  (Is image now officially a verb?) One thing remained in my brain, and that was the knowledge of how to get the report from the CT scan done two weeks plus into my rest period after week two.

My son drove me to the scan center, as I was oddly not thought to be capable of going there myself, such a smart family, and parked as I rushed to collect the report.  It was at the desk, as promised, and I tore open the envelope, and pulled up the last few sentences of the report into view.  “Significant decrease in size of multiple pulmonary nodules!”

And back for more Proleukin.  And a cake that I ordered for myself, which read (Charlotte’s Web alert) “Zuckerman’s Famous Peg…Amazing.”

 

 

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Filed under About Peggy, Biological Systemic, Immune Therapies Old & New, Surgery

by | December 10, 2012 · 10:56 pm

Immunotherapy: A Trial by “Flu-Like Symptoms” and a Lot More

When I was diagnosed with Stage IV kidney cancer, I just assumed that the doctor would take some sort of medically-approved SMALL melon baller, scoop out the bad stuff, and send me on my way, never to sin/cancer again.  That was my first plan, and one which couldn’t be.

First of all, there is no medical melon baller, and certainly not for a tumor the size of a big orange.  No tiny key hole scar for me, but a large incision, and the removal of my tumor, my kidney, an adrenal gland, and  a few local lymph nodes for good measure. Though the scan seemed to indicate that the tumor was scrambling up my vena cava, a big vein heading toward the heart, the scan was more ambitious than the tumor.  The pathology confirmed that my cancer was “clear cell”, which was good, as it is the most common subtype of kidney cancer.

Bad news.  There were hundreds of tiny mets all over my lungs,  the CT scan showing tiny evil snowflakes throughout my lungs. “Too numerous to count”. Impossible to remove by surgery or radiation. Systemic metastatic disease–very bad stuff– and the reality that  visible mets were outnumbered by the tinier ones still unseen in a CT scan.  Only one medication was approved for advanced kidney cancer in 2004. It didn’t really work for many people, maybe just 7%, according to the clinical trials that had led to its approval 12 years earlier.

This treatment was High Dose InterLeukin 2, brand name Proleukin.  No one else seemed to have ever heard of it> When I asked if they had heard of  “interferon”, most people nodded politely.  That’s how much general awareness there is of the life-saving regimen recommended to me.  Most doctors and few oncologist have never seen a patient in treatment with it.  Not the popular choice–but none other treatments existed!

Statistically, the odds for a good response were pitiful, but so were the odds for my getting kidney cancer in the first place.  The “Why me?”s became “Why not me?  Someone has to be in the 7%!”.   I talked to a patient who had gone through the treatment. She described it as “Hell”. I winced visibly, and she nodded in sympathy.  Still she was alive and at a meeting. Given the chance, she said she would do it again!   Thank you, Paula, for your courage.

Proleukin is essentially a synthetic version of your body’s immune system reaction protein. Thus, the patient reacts with a wide range of immune responses–all in hopes of revving up the immune system so that it recognizes and fight off the cancer cells. Those cells have escaped detection by the immune system, disguised as “evil twins” of the healthy cells.  If the Proleukin could empower the immune system to be super sensitive and aggressive in finding the tumor cells, maybe the cancer would be destroyed.

This is not traditional chemotherapy, in which all the cells are targeted for destruction, with the fastest-growing ones–the cancer cells–being the most vulnerable.  Chemo patients are bombarded again and again, in a delicate balance between killing the cancer cells and keeping the others and the patient intact.  Many people stay on chemo for months and months. But no chemo ever worked for my cancer.

My treatment was to happen in five-day spurts, offset by days and home to recover and then to return.  Roughly, I was to be in the hospital one week, out a week, back in for a week, and then rest and await the verdict delivered by a CT scan.  Good news meant I could be permitted to return for another set of treatments.  Bad news–go home and look for another clinical trial and…no one wanted to speak of it.

My mets were shown to be fast-growing after a series of CTs , so even  stabilization of  growth would be considered ample reason to return to the hospital. ” Just slow them down”, I prayed, “Let me back in the hospital.” Determined that even if the doctor could not whole-heartedly recommend it, I would go back for more.  Of course, that was before I had the Proleukin and understood what would happen.

Had Proleukin not been effective for me, I would not be writing this. Still I have little independent knowledge of all that I endured during the treatment.  My family usually says that I am happier not knowing, that it was brutal, that it took me to the edge of life.  No wonder they don’t want to talk about it.  But I was in a excellent hospital, with experienced staff, having been considered to be healthy enough to get through the treatments, and determined to live, what ever it took.

This medication is delivered by IV, through a port which led a tube straight into my heart, a channel to get that and all other meds to me as quickly as necessary.  Doses are given every eight hours, unless the patient is unable to tolerate the next dose, needing to recover from the reactions to the previous.  Over the five day period, a patient might get 14 doses, though few ever do.  In my case, I received an average of nine doses per week, and my length of day was twice extendedby a day, so that I could recover before I was sent home to recover some more.

I remember arriving home, rather suddenly, it seemed. No memory of the drive, just a vague recollection of  walking down the hospital corridor with a doctor and trying to read a sign.  Apparently that was a bit of a test, which I passed, because I was home.  Home–to recover and praying do it all over again.

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by | August 3, 2012 · 8:17 pm

Remove the Beast, but What About Its Alien Babies?

When you have a tumor inside, which has hidden and grown and chewed away at your health for years, no sensible emotions are left in place, and no sense of patience is possible.  All the  advice to wait and see if it is really malignant, get a second opinion from a more experience doctor, just  can’t wish/pray/eat/not eat it into oblivion, go to a really pretty spa in Mexico where they do wondrous things without a knife–they all sound alike.

I’ve always been healthy.  Maybe I really am healthy and can live with this.  Maybe the reason that I have been panting going up stairs, and having night sweats really mean more than menopause.  Maybe they got the report wrong, but why did the ultrasound technician sudddenly go silent and begin to frown.

But reality does intrude, and at Mayo it was a reassuring reality, one which recognized that I was sick, that I needed TLC along with clinical expertise, needed to hear music from a beautiful piano, look at art and flowers, and needed Kleenexes on every table in every waiting room.

Coming in on an overnight flight, with a doctor friend having helped make the first appointment, I was anguished to realize that that I was in danger, and dependent upon people I did not know, and a system that was new to me.  But the moment I picked up the phone at the Rochester Airport, I was connected to Mayo.  Instantly the voice on the other end tracked my name, asked how I was, inquired if I had anything to eat or drink–so that she could schedule me for tests to be run on an empty stomach, and still find me time for lunch.  When was the last time your medical system worried about you so tenderly?

I was brought directly to the intake area, where another person found all my records and my medical itinerary, with numerous pages of tests to be completed that day before my doctor’s appointment.  With a pink marker, she circled the goals, including getting me fed, and with clear instructions, sent me to the first test.  The atmosphere is serene but focused, with people from around the world, all ages and shapes, all coming to Mayo for help they could not get at home, or because Mayo had become home.

My prejudice, having been raised in North Dakota, is that the Midwest teaches people to value kindness and competence, all in abundance at Mayo.  Although the nurse in the CT clinic had seen hundreds of patients in the weeks prior, and perhaps thousands over the years, her pats on the shoulder and gentle questions about my feelings comforted me.  When she told me that she would include me in her prayers that evening, I knew she was sincere, and I was grateful.

My five o’clock appointment, now accompanied by my husband and sister, was both dreadful and calming.  He reviewed the CTs we had brought from California, had all (!) the tests from earlier that day, and did a physical exam.  When he pressed on my belly over the tumor, he could not help but ask, “Didn’t this guy feel this thing?”.  The flash of anger was real, and the set of his mouth made me understand that this was obvious to anyone doing an exam.  My several endoscopies and colonoscopies never included the checking my belly, the simple laying on of hands.

“This will have to come out, along with the kidney.”  So much for the fancy “snip and bag it” approach which seemed so simple.  By now I just wanted it out, without regard to scars and technique, and I had a second kidney. “This has to come out, and I can’t do it until Monday.”  It was late Tuesday, but he understood the urgency in my gut.  My kind of guy.

“Did your doctor tell you that you have mets in your lungs?”  No, I had not been told. The stunning announcement of my life.  I was not  going to be able to get rid of the tumor and go on about my business!  The mets in the lower lobes of the lungs were clearly visible in the CT scan from California.  Were there 15-20 tiny snowflakes of tumor there?  The new CT scan of the day showed a blizzard throughout my lungs.  No way to operate on hundreds of mets, and life changed again.

“And we have to talk about followup.  I will recommend high dose interleukin 2, which can be done here or at UCLA.”  That was the lifeline which kept me being able to listen.To go from the  need of an fairly non-invasive operation, to one which would open my gut and remove a kidney by slices of steel in my belly and then to a situation in which physical removal is possible!  No wonder that people call having cancer a journey with no map.

There is only a goal, which is so simple.  To get well.  To not die too soon.  To not die before my son graduates from high school, to not die before my daughter graduates from college, to not die and leave my children in the kind of pain which I had when my own mother died.  We had a plan, with a drug I had never heard of, and one which had to work.  I had no other option but to live.

 

 

 

 

 

 

 

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by | July 29, 2012 · 8:12 pm

T’was Beauty (or at least vanity) Killed the Beast

Being vain, and getting ever aware of the famous ravages of time around my eyes, I was thrilled to talk to a cosmetic surgeon about an eye lift.  The magazine ads tout the life-changing benefits of an eyelift, but I never envisioned the tumor in my kidney as a bonus.

Most people get a blood test, and read the reports with a frown, as the abbreviations and terms are pretty arcane.  An asterisk or two alerts the reader–rarely the patient–to values that are out of normal range.  Oddly, my hemoglobin, the red blood cell count was about half of normal, a 6.8 with a normal range for women about 12-14.  “Had to be a false reading,” said the doctor, and I agreed. I was always healthy, so one more lab test is in order.  Anxious to be beautiful and on the way to a concert, I was thrilled when the doctor phoned with the new results–until I heard them.  The hemoglobin was 6.6, and the doctor told me to go to the hospital.

“When? Right now? Why should I do that?” I questioned the doctor.

“Well, if you get into an accident, you’ll bleed out.”  Pretty compelling reason,  so I drove very carefully to my nice suburban Emergency Room, basically annoyed and bewildered.

I was admitted, had my poop checked for internal blood loss, and was given three units of blood.  Somehow this became more serious, when they pump blood into your arm, and come back and do it again.  All for a little eyelid surgery that I could certainly put off!

Halfway through the first pint of blood, I trailed my IV of blood into the bathroom and looked in the mirror.  So odd that my lipstick was still on after all those hours, when it never lasted that long…and then I realized that my lips were reddish again, not really needing lipstick, now that I had a bit of blood in me.  And still I did not realize how serious this was.

A colonoscopy and an endoscopy (an “upper and a downer” ) checked out my innards, with the finding of a “tiny, scabbed-over ulcer”.  Aha! Nothing to worry about after all.  I was sent home with iron pills, a promise to eat lots of red meat and dark green vegetables, and to come back in three months to show off.  But still no eye surgery.  Despite the blood, I was still officially seriously anemic.  But I suddenly had no periods, so that was good; world’s most efficient menopause.  Who could complain?

For nearly eight months I had blood tests, iron pills, more endoscopies but no more ulcer, more iron pills, and finally iron shots–black bruises of noteworthy sizes–don’t ask where.  Then a test of my entire gut, weight loss despite the good diet, incredible night sweats but no periods, and an increasingly haggard look.  Finally the doctor (number two in his class!) quietly decided that I must be a drinker, and sent  me to get an ultra sound of my liver for a biopsy. This was to “confirm the diagnosis of cirrhosis”, a condition never discussed with me, and despite my once a week wine-with-dinner history.

A cheerful ultrasound technician chatted with me as she swept the wand to the left for my liver and to the right for…sudden silence and a frown.  Instantly I knew something was wrong.

“What do you see? Is it my kidney?”  No answer.  “What have you found?” No answer, but a murmured, “One minute”, and she left the room.

This was the “Oh, s..t” moment.  It’s obvious that there is a tumor somewhere, but being the patient, I get no information.  My first reminder of my place in the food chain.

“You are going to get a CT scan; we’ll fit you in today. Leave your gown on.”

“What have you found?”  Silence.

Back to the cold waiting room in my “gown”.  Thought gowns were to be reserved for galas and balls, but this wasn’t it.  Within four hours I was in a CT machine and behind glass walls, two men (doctors?) were pointing at a screen out of my view, gesturing and nodding.

“What have you found?  Its pretty obvious there is something.  Is it on my kidney?”

“Your doctor will talk to you when he can.”  Translation: you have cancer, and we’re not going to tell you anything.

Hours later, and after many phone calls to the doctor, he finally called back.  “You have a mass on your kidney; it will probably have to come out.  I’ll find someone to refer you to in the area.”  Translation:  Welcome to cancer.  Guess it’s not a tiny, scabbed-over ulcer.  Now find somebody else.

On to the internet, reading about kidney cancer.  Stats; 38,000 new cases a year in the US, and 13,000 a year die of it.  Decent odds if they can find it early and take it out. Glad mine was found so soon.  Really pretty grim odds if it is large and has metastasized.  Efficient thing, kidney cancer.

With urgency, I check out the website of new doctor. No mention of kidney cancer at all, and he’s my new expert?  This is the recommendation from a guy who treated me for eight months for an ulcer.

Dr. Newdoctor’s receptionist won’t tell me if “doctor” treats kidney cancer.  I can ask “doctor” about it three weeks or so.  Translation:  We don’t care that you might have cancer.

But I am from North Dakota and grew up in a town without a doctor.  If you really got sick, you went to Bismarck, and if you were really, really sick, you went to Mayo.  I went to Mayo.

Five days after my ultrasound, I sat with Dr. Brad Leibovich, a doctor recommended for his surgical expertise and kidney cancer research.  Over the weekend, I had read about laporascopic surgery, where the surgeon makes little holes in my belly, his tiny scissors nip out the neat little ball, which he puts in a clever baggie (no ziplock?), and drags out into the light.  I plan to stomp on it. That’s the kind of surgery I want, simple, clean and efficient, so I can go back to normal.

But Dr. Formerdoctor (his name upon quiet request) failed to tell me that my tumor was the size of a decent orange. No nip and bag operation for me!  He failed to tell me that the CT scan showed the lower lobes of my lungs full of tiny dots of cancer.  A more complete scan showed “too many mets to count, with several of measurable size”.  No longer one of 38,000 new kidney cancer patients, I was suddenly one of the 13,000.  Maybe I would last until next year.  Maybe not.

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Filed under About Peggy, Biological Systemic, Immune Therapies Old & New

by | July 25, 2012 · 7:26 pm

Programmed Death-1–My Death Wish for Cancer–and Clinical Trials

PD-1—Programmed Death and Clinical Trials

 Even doctors need to study this stuff! Doctors are offered online study modules, and recently the topic of “immunotherapies” was offered.  This module explains the PD-1 antibodies and related BMS-936558 clinical trials, which is of interest to kidney cancer patients.  Since I am not trained medically, so this is my perspective as a patient only. Perhaps this  will start a discussion with you and your doctor, andupdate you about immune therapies and PD-1 studies.  Your corrections and comments are requested.

May I remind readers that the body’s immune response is a series of signals and responses, organized so that normal cells can grow and infections can be controlled without an overreaction of the immune system. But the immune system is not perfectly equipped to handle the mutations that characterize cancer, so when these signals get interrupted, or are not received properly, cell development goes wrong.

The FDA recently approved ipilumumab, an anti-body which has benefit in fighting prostate cancer, as it blocks a molecule called CTLA-4.  That is one of severalimmune checkpoints, and is one of the “call and response” pairs that is active in cancer and chronic infectious diseases.  Another of these immune checkpoints is PD-1 (programmed death-1), which arises early in the process of T-cell (fighter cell) exhaustion.  It binds with a molecule called ligand (think ligature as to meaning), PD-L1.  This will appear on the surface of a tumor cell, and may be a measurable signal that the interaction of the PD-1 and its ligand, PD-L1 are suppressing the natural anti-tumor immune response.  This interference with the natural immune response permits the cancer cells to grow more easily. Thus the goal of the research will be to interrupt this binding.  Theoretically, that will make the ongoing immune response more effective.

This theory is being tested and contested, as there seems to be another response in melanoma. Since both kidney cancer and melanoma have some immunogenic qualities in common, what happens in melanoma research is of interest to RCC researchers.

Researchers have developed molecules that block the PD-1/PD-L1 interaction; one of these molecules is the BMS-936558 from Bristol Meyers Squibb which is also referred to as MDX-1106.  A phase I trial which tests safety and with increasing doses, showed benign toxicity. That led to an expansion of the trial of 300 patients, and still showed minimal toxicity.

There were objective tumor responses in patients with advanced melanoma (28%), non-small cell lung cancer (18%), and kidney cancer (27%).  Some patients had response of stable disease for six months, and others up to one year.

Of the RCC patients as a group were “heavily pretreated.”  Patients had previously received one or more treatments, with 47% having had three or more treatments.  Other trials corroborated this type of result, and act as proof of concept that blocking PD-1 can give clinical results without undue toxicity.

Another phase II trial of BMS-936558 is now complete and should be published soon.  It used the agent in second- and third-lines of treatment, after other treatments have failed.

With that and other data, a phase I trial combining the PD-1 blockade action with TKIs, such as Sutent (Sunitinib) and Votrient (Pazopanib) is underway.  There is also a bio-marker trial with the patients who responded to treatment, which includes both pretreatment and on-treatment biopsies for histologic and molecular analysis.

Reading that there would be analysis of markers in those responding patients compelled me to write this.  We are long overdue for research on the responding patients, which may determine who is likely to respond, and to prevent those non-responders from using ineffective drugs.  Apparently preliminary data from the large 300 patient group has shown that there were tumor responses ONLY in the patients who expressed PD-L1, and no responses in patients without this PD-L1.  Since this can be measured, this might prevent patients from taking treatment likely not to be beneficial, and to determine the optimum doses.

Another trial with a very similar name—different number—uses the antibody BMS-936559—note the NINE—and attempts to block PD-L1 directly.  While many cancer types were included in this study, it is noted again that patients with melanoma (17%), non-small cell lung cancer (NSCLC) (10%), renal cell (12%) and ovarian cancer (6%) had objective tumor response, as well as a range of stable responses at six months.

Most combination trials of have been with two TKIs, like Sutent and Pazopanib, which seems to offer little benefit, but with greater toxicity.  This new combination offers two different mechanisms of action, this may give greater results without the additional severe side effects.  We may also learn who is more likely to respond to any one of these drugs, which would be invaluable to the patient.

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Filed under About Peggy, Biological Systemic, Immune Therapies Old & New

by | May 22, 2012 · 5:37 pm

Kidney Cancer Stage IV : My Round Trip & A Foreign Language

Nothing  catches your attention more than being told you have an incurable disease.  Quick translation= “you’re dead”.  All the words of encouragement, “we’ll do our best”,  “you’re a fighter”, “the doctors could be wrong” are  drowned out by the word “incurable”.

Doctors don’t like to answer questions like, “How long do I have,  doc?”, and patients don’t like to ask such things, in my experience.  But the internet and medical journals do give those answers, and rarely flinch when asked.  The only real stats I can remember about my diagnosis of kidney cancer, or its more melodic renal cell carcinoma, was that about 37,000 patients were diagnosed annually the US, and about 13,000 died annually.  Doing some quick math, I figured that I had three years, if I were lucky.  It is now more than eight (Now TEN!) years.

Being diagnosed with terminal cancer puts you on a new journey, say the more eloquent of us.  We welcome one another, remind them that this is all unknown, that it leads to a new country, the land of the sick, and certainly requires a new language.  Five year survival, times to progression, overall survival, ablation, and retroperineal are the new phrases you encounter. In addition to those darn Latin words of endless syllables,  that new language hijacks words we once admired, like “progression”.  Progression once meant to go forward, like passing into the next grade, or getting the vote, surely good things.  Not so.  Progression suddenly means that the cancer is on the move again.  Regression is the  good word in this new language.

We can’t even pronounce half the words that are thrown around in this new world, and don’t even know that all the body parts under discussion.  What is a collecting duct,  have I always had a venous thrombus, and what is the difference between metastases, lesions, masses and tumors? Is positive one of those words that means the opposite of what it was?

Just as this new language swirls around you, the alien disaster grows insidiously, betraying all you trusted, someone tells you with great earnestness that you must now be your own best advocate.  Isn’t the doctor supposed to be better at this than the patient?  Does no one else find it ironic that the same body which produced the tumor in ignorance is now asked to defend itself, to be skilled and capable of fighting off the threat to life and to choose the weapons to do so.  Am I now supposed to choose the meds and the techniques, advocate for one treatment over another?  Hell, I don’t even believe that this has happened to me?

In my older world, advocates had causes and clients. They went to councils and boards, court rooms.  To whom do I plead my case in this new world?  And where is the court of appeals, should I need a new trial? Can I get new representation?  Does my doctor even know what he is talking about?  Of course, “trial” doesn’t mean what it used to, anyway.  It’s more of a battle, with the weapons or medications being passed out to blinded patients by blinded physicians. Maybe half the weapons are dull or non-existent–placebos.  Welcome to this new world.

There is no Stage V, of course.  That is the ultimate “progression”, another form of “passing” that we talk about quietly and somberly.  I wanted none of that, didn’t want Stage IV, for that matter, and yet I had been on that grim journey for many years. I had no early warning, not seen the road shift beneath my feet, nor learned the new language. I didn’t know if there were fellow travelers. 

My cancer had probably started 8-10  years before my diagnosis, in some dark and poorly oxygenated part of my body, where some errant cell found a sweet spot to set up shop.  Cells became a tumor, which became a mother ship, sending off colonizers, who found endless new sites in my lungs, “tiny tumors too numerous to count”. That eerie phrase from the CT report lodged in my head.  No doubt, countless other tiny tumors, yet to be seen, were traveling throughout my body.

But now I am back home at what ever is called healthy, I may not be on any one of these apocryphal stages, hurling towards “progression”.  Mine has been a round trip, or I have passed “Go” and have been able to collect my prize for the meantime.  Of course, I do know that I am really just in a spur line along this journey. Sometime I am likely to be called back into the active mode again, but I will hear that alarm sooner than I did years ago, and I am now bilingual.

But eight (TEN!)years later, all the stats have changed.  Rather than the 37,000, we now are quoted 57,000 (61,000) newly diagnosed patients, and still with the loss of our beloved 13,000. There are more of us, but we die less efficiently. Can that also be “progression”?  How did I get home again?  That story will be told soon.

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Filed under About Peggy, Glossary, RCC Basics, Your Role

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