Possible Progression

Possible Progression

I knew this day would come. 

There was a difference in the way my oncologist entered the room.  Her face told me the news. She walked over to the sink and began washing her hands as she always does. This time, though, she didn’t immediately jump into I know you are anxious to hear. Your scans look good.  Today, as the water washed over her hands, she turned to look at me and asked how I was.  I responded, “It seems I am not doing that well.”  She said, “Well . . . there is what appears to be a slight progression.”  She dried her hands and sat down and began to review what was reported about my CAT scan.

I had tried to prepare myself for this moment.  For days I have been going over the scenario of how I would react if told the cancer had progressed.  I remember thinking there is nothing I can do about it.  I will not die today and not even tomorrow.  Along with possible bad news, I also kept hoping that I would once again have the good news of stable disease.  Then I could relax and enjoy life for another three months.

The report stated that there were numerous nodules in the upper lobe of my right lung and in fact those appeared to have increased in number. This is completely different than the last several CT reports.  Matter-of-fact, my last few scan reports have not mentioned the lung nodules at all.  Since there had been none reported, I believed that none were visible.  My oncologist had not reviewed the scans herself, so she could not comment. Since the nodules were now noted, this seemed to me to be a definite indication of progression. But, my oncologist wanted a radiologist from her department to review the scan and give his report before a new treatment was started.  One report of slight progression from one radiologist may not be the conclusion from another radiologist, apparently. 

    

The other concern was a fluid-filled mass in my throat that my oncologist wanted examined by an Ear, Nose, and Throat Specialist.  I would need to have this 1 cm mass investigated before I received my next treatment.  My oncologist did not believe that the mass was cancerous, but it was possible.   More crap to deal with – what fun!

Soon we were discussing the next treatment option.  This would be a drug called ado-trastuzumab emtansine (Kadcyla), previously referred to as T-DM1.  This drug was FDA approved in March of 2013, so it is a very new drug for people like me.  It is a chemotherapy agent, but it is attached to a targeted therapy (trastuzumab called Herceptin) so it targets the cancer cells.  Most Her 2 neu targeted cancer drug treatments include Herceptin. The cost is estimated to be around $9,800 per month and is given through IV infusion.

If I am given this new drug, I will have thoughts of worry for the next three months until the next scan.  The new drug may not work.  Maybe it will.  And so there go my thoughts, bouncing back and forth from bad to good, and good to bad.

I almost lost control of my emotions as we talked about changing treatment.  When I thought about possibly losing my hair again, I could feel my body begin to shake.  My hair, to have it, makes me feel more like the old me.  Losing it is quite devastating and ridiculous at the same time.  It is just hair, but it gives the illusion that I am just as healthy as I was before April 1, 2013.  Fortunately, the side-effects of T-DM1 don’t include hair loss.  

After my initial shock, I regained my composure and looked down at my notes.  I was curious if my moving on to a new drug would disqualify me for any existing clinical trials.  Trials sometimes don’t take people if they have been given certain drugs.  Dr. R. said that there were no trials on-going that would offer any drugs any better than this new option. 

Genomic Profile

Also, I inquired about having a genomic profile done of my cancer in case certain characteristics of my cancer could be matched to particular drugs.  My oncologist said yes this could be done.  At UNC there is research program called UNCSEQ .  A sample of a person’s blood and a sample of a person’s cancer cells are taken.  My previously taken cancer cells are in storage so no need to go through another biopsy. Then DNA sequencing is done of the cells from both samples.  Those are then compared looking for differences and similarities in the genetic codes. There would be no cost to me.  The results would be reported to my oncologist including any particular results showing a genetic component that could affect my children.  The entrance into the research program was simple.  I signed some papers and blood was taken from me. I was told that results could take as long as 3 to 6 months.  At least something productive did come from today.

Receptor Status Change

The last of my questions asked of Dr. R. was about testing my tumor to see if there had been any changes in the receptor status of my cancer.  Currently, I am Her 2 neu receptor positive.  There are an abnormal amount of receptors on the outside of my cancer cells.  Because of this, the cell gets its signal to divide and grow from these receptors.  This over-abundance has caused these cells to act abnormally.  Other receptor positive cancers involve the hormones estrogen and progesterone.  Their mutation causes them to behave abnormally when these hormones are present.  There can be any combination, positive or negative, of these three receptors. I discovered something from her explanation of my not needing this testing now that I had not known.  All breast cancers change in various ways overtime – I knew that. That is why treatments must change.  I learned that breast cancers that are positive for a particular receptor can lose these receptors and receive their growth and dividing signals through another pathway.  They can lose these receptors, but the interesting part is once they are negative for a receptor they cannot become positive.  Since I am negative for the estrogen and progesterone receptors, I will never be positive and never have the option of being treated with the drugs used against it.  After thinking about it, I realized this new knowledge has brought me a new layer of fear.  Dr. R. said that if she noticed my cancer becoming highly active, she might suggest testing for the receptor status. If there was a change, my cancer would be TNBC or Triple Negative Breast Cancer.  That has fewer options for treatment. Yup, a new layer of fear added to the mountain of layers already within me.        

My Nurse

Interesting incident occurred as the nurse was trying to organize my appointment with the ENT and to plan for my treatment the following Monday.  Before she spoke to my husband and me, she closed the door of the room then proceeded to tell me she had known on Friday the results of my scan.  (I had requested at my last appointment that as soon as the results were known that she call me.)  She apologized to me, and said she had “chickened-out”.  She did not want to give me the bad news.  I really wasn’t sure how to take this nor do I still. While I do appreciate her thinking enough of me to not want to tell me unpleasant news, I feel that she neglected to do this part of her job.  It really isn’t a question of whether she wants to give the news or not.  If she had not told me, I never would have known.  For that, I appreciate her honesty.  If not for her guilty conscience, I would have continued to believe that the results had not been received until today.  In the future, I will just wait until my appointment to receive news.  It won’t change anything anyway.  

My Rant

I need to rant for a moment . . . I should have been called by phone by someone.  At the very least to readjust my appointment until all the facts were available.  If my treatment was to be changed, I wouldn’t have received treatment on this day anyway.  The insurance company has to approve the new treatment.  Seems it would be more efficient to call me, let me know that the results of the CT scan needed a second opinion, and call me back to schedule a new date for treatment.  Instead, I drove those 2 ½ hours, had my port accessed, only to find out that I have to return a week later.  Time is important no matter who you are, but when you know for sure that you only have a short amount of time left as a breathing/thinking human being, the more important time becomes.  Yeah, I know, my visit allowed people to be paid today allowing them to feed their families. I just hate to think that money is more important than implementing the best and most efficient method of handling a patient’s time.   

The Unexplained Mass

Tuesday, I went to the Ear, Nose, and Throat Specialist.  He examined my scans for the questionable area and read the part of the report that described the fluid-filled mass.  A long tube was placed down the left side of my nose so he could view the mass.  It was located at the base of my tongue within the curve that becomes the epiglottis.  After viewing the area with the scope, he put a glove on his hand and put two fingers down my throat and pressed on the area.  The procedure wasn’t so bad.  He had numbed my sinus passageway.  Amazingly, I did not gag as much as I thought I should have.  In the end, he called the mass a Vallecular benign cyst.  Whew, I can push that worry to the side.

The Second Opinion

This Thursday, the radiologist in Chapel Hill will review my CT scan comparing it to the scan from January.  Then, probably, Friday, I should get a call (or maybe not) to let me know if in fact there has been progression.  It would be nice to hear that there is not enough evidence to say for sure it is progression and that I can remain on my current treatment. I feel really good physically right now and I really hate to see that change.  Plus, I was so hopeful that Perjeta and Herceptin would keep me stable for a long time.  It has been 12 weeks without the Taxotere.  If there is progression, it makes me think the Taxotere was doing all the work to keep the cancer stable.  My doctor said there was no way to prove this.  I think trying Taxotere would prove it, but no! I do not want to do that. Still, I have to wonder if I had not asked to try just the targeted therapies, would I possibly be changing drugs this Monday.  At least my chest tumor pressing on my vocal nerve is still stable.

So, I may be moving on to a new treatment.  Not the kind of news I wanted to hear. 

My next appointment is Monday, May 5^th.  I will post about it next week.

Lisa   

Supernatural or Coincidence

The drugs Perjeta and Herceptin are a wonderful combination in terms of side-effects. I am hopeful this combination will last for some time because I really feel quite well in all things cancer related. Years would be ideal. I have heard for some people, this is their reality.  Maybe it will be for me too.

Supernatural or Coincidence?

In the last two weeks I have had two interesting experiences that caused me to ponder, as I often do, the “whys” of the world. For me, there is either a scientific explanation for the reason something happened or there is no reason at all – it just happened.

I don’t believe in anything supernatural. Well . . . except the supernatural event that made those three guys on the left so darn appealing.  Wait a minute . . . it's not supernatural – it's in their genes.  For those of you who don't know who those guys are, they are actors from a TV show called Supernatural.

Black holes I cannot explain.  My 10-year-old daughter (oops, April 6th she turned 11) can explain it and so can an astrophysicist.  Even though I can’t explain it, I know there is science behind a black hole's creation. It is not supernatural. 

There are some medical events that seem supernatural.  Why does one person survive but someone else with the same treatment and seemingly the same cancer does not.  I would even refer to those instances as miracles although really they are not.  There is a scientific reason found in a cell’s biology. It is not supernatural.                            

The two events that happened to me recently made me pause, for just a brief second, and think -- hmm, that’s interesting. When events happen that seem so out-of-the-ordinary, I can understand how someone might believe a supernatural intervention must have caused it to happen. But, I am too logical. My brain brought me back to my reality that explains these events as nothing other than pure coincidence – happenstance.

One week and three days ago I received flowers.  One week and four days ago I answered my cell phone even though the number was unknown to me, not something I usually do.  The person on the other end said, “You may not remember me”.  Though I had not seen this person since maybe as long ago as 2005, I remembered him immediately. 

On April 1^st it had been one year since I heard my oncologist give me the news that my disease had progressed beyond the breast.  I was receiving the call because word of my illness was reaching people I have not seen in years.  That is pretty amazing really because I don’t go out that much.  I assume someone must have seen me in some store wearing my head covering which doesn’t really conceal what is happening to me.  

Earlier in the day that I received the phone call, my mind had wandered back to the years that I was a member of a dog club, a dog club with individuals that taught me so much about training dogs.  I was a member for 5 years, taught some classes and was on the club’s board as their secretary for 3 of those years.  I had such a great deal of fun training my rescued border collie.  At 8 weeks of age that bundle of fur and I became a team.  Jet and I eventually entered 7 agility competitions and came home with 6 first place blue ribbons. But, then my children became heavily involved in extra-curricular activities so I resigned from my volunteer work with the club.

There are a few not so great memories too. Jet, my canine partner, had some fear aggression issues toward some dogs. His aggression would be a quick lunge toward a dog, and then it would be over. I felt like it made people uncomfortable to bring their dogs around me for fear that the lunge could turn into something far greater -- understandably so. It could have, if not for human intervention.  This was a source of frustration and sadness for me. In Jet’s youth we owned two other dogs so it was possible for him to experience social harmony with other canines. This was again proven over the years with our adoption of 4 other dogs. His unfriendly behavior toward some dogs did not offer me complete social harmony with the club, though.  I always had to be aware of what he was doing. 

As I thought about the club, I also remembered an incident that occurred with one of the members and his dog.  I thought about what I might have said differently to some of the members in that person’s defense. His dog had misbehaved, he reacted.  I certainly was no stranger to having a dog that misbehaved. A few hours later the phone call came.  What a surprise! It was the person I had been thinking about. It was so good to hear that he was doing well along with other members that were still part of the group.  Though this event did seem to exhibit supernatural tendencies with an out-of-the-blue phone call from someone I was just thinking about that I haven’t seen in years.  But it wasn’t, nope, just a simple random coincidence.

Then today, in the waiting area at UNC hospitals, I was forced to sit in a seat I would not otherwise have placed myself simply because I like to sit in places away from other people.  The only seat available was between a woman and a man.  As I sat down the man’s face became familiar to me.  I recognized him immediately. At our initial meeting, I had a conversation with his wife, but today I spoke only to him since she happened to stay at home on this day. In my post of July 29^th, 2013, I referred to his wife as the Godly woman because she spoke mostly of how good God is.  Rengate Austin, I discovered, is doing very well. We had a great conversation only to be ended by the summoning of him to an infusion chair.  I am pretty confident he didn't remember me, but I don't care. It was just nice to see and hear that another cancer patient was doing well in this path in life we did not expect to take. As we talked, he said that we are no different than anyone else in this world because the end result is the same.  We all die.  No guarantees of tomorrows for anyone.  I agreed.  I also learned that he is still in the same clinical trial that he had begun when I first met him. He is paving the way for a new treatment for some lung cancer patients.  Was this a supernatural encounter – an encounter that put this person in the same place as me on this particular day with only one seat available for me to sit in? Honestly, the odds of this event occurring are not very good.  But, no, it was just another simple coincidence. 

Side-Note

My pulmonologist told me just last week when I saw him for my allergy symptoms that when he graduated from college there were 6 different types of lung cancer. Now, there are many many more. That is why it is so difficult to find a cure for any type of cancer.  So many cancers; so many subtypes; so complicated . . .

The Infusion

Once a chair was available for me, it still took a while for the infusion to actually take place.  I was weighed, asked if any of my medicines had changed, my port was accessed, blood drawn, medicines ordered, and food, drink and a warm blanket offered and provided. Today a new question was asked.  Do you feel safe in your home?  I learned that the staff is now required to ask each patient this every time they are seen at the hospital.  That question will be asked along with have you ever smoked?  I was told by a nurse once that the smoking question was asked for governmental statistics.  Why?, she didn't know.  Of course I don't want domestic violence in anyone's home, but somehow such a question seems odd - just a little artificial- or perhaps, I thought, the people running the government must be trying to make sure their programs continue to be operational. In the future who knows what questions will be asked; questions such as are you practicing safe sex, are you eating 2 servings of vegetables each day, do you wear sunscreen when in the sun, do you have guns in your home (my kids’ pediatrician asked that one), and finally do you have alcohol in your home? Well, we have a program for that. Could more questions soon be coming my way before my cancer treatment can even begin?  I know people need or want help for variety of reasons.  A hospital can feel safe, but is this question or better yet is the service necessary?  Aren't programs already available to help in these situations? A scared person could reach out for help and social services could be called without actually having to ask the question. What would the hospital do anyway if I had said No, I do not feel safe?

These questions swirling around in my mind prompted me to ask my nurse.  She was happy to explain.  Apparently it has been protocol to ask all in-house patients this question. Now that the in-house and out-of-house patient clinics are using the same electronic records system, all patients are now asked that question including me, an out-patient. If someone said yes to the question then Beakon would be called. At first I thought Beakon might be the government agency I referred to earlier. The internet educated me.  Beakon is a service provided by UNC Hospitals. They would be called and would come and evaluate what kind of threat the person was experiencing. 

After digesting the nurse’s comment about family members being asked to leave so the person could respond without any inhibition, I began to realize that maybe the abuser, never wanting the secret of what they are doing to be known, may not ever let the person being abused go out into society alone. The hospital might be the first and only opportunity that someone could ask for help. Other questions kept entering my mind.  What are the statistics of how many people are actually helped by this service?  And, once Beakon is called, do they bill your insurance for the service?  Also, if the threat is severe enough, do they immediately prevent you from going home when released?  Is the hospital now a safe-house for people trying to get away from domestic violence?  Is this another way for the hospital to dig into your pockets or at least your insurance company’s or is it a service provided for free by the hospital?  Well, nothing is free. I did see on the UNC Hospitals website that Beakon accepts donations so maybe the money to run the program does not come directly from the people in need of help. But if my treatments are higher than they should cost because it is helping to fund the programs offered by the hospital then that is the point where I say enough is enough. I am not against people looking for ways to make money nor am I against my giving monetary donations, but I don't want to pay for it unless I know about it. Hopefully it is simply a great service that is needed and used by many to prevent abuse and to help people of domestic violence.   

So there you have it.  Infusion #17 is history!

Next time will be scan review time. 

Oh, and I also started going without a head cover around the house.  Eyelashes are starting to appear too, very thin tiny little hairs though.  I can’t wait to put on mascara again.  No eyelashes -- not a good look for me.