A Gift

Treatment #16 went well, but it was an incredibly long day.  Chapel Hill had too many patients scheduled which caused long waits for everyone.

I only had one appointment, the infusion.  Because of this, I thought the time at the hospital would be a lot shorter than prior days.  I arrived at 11:30 despite my appointment time of 1:00.  My early arrival did not move things along any faster. I was not seated in a treatment chair until just after 3:00.  Finally at 4:30, my treatment began.  The whole process really doesn't take that long.  Once I swallow the two Tylenol pills and wait the 30 minutes for those to start working, the infusion can begin.  Each drug is infused for 30 minutes. There are two of those.  Once complete, there is a 30 minute observation period to make sure I don't have an allergic reaction to the drugs.  So, one might surmise that I could possibly be on my way home in three hours since the actual time to be treated is two hours.  This was not to be.

Luckily, I had received a gift from one of my daughters on Saturday.  It was an iPad mini!  I spent the entire time learning how to use it.  I searched the internet and did something I never do . . . played games!  Candy Crush is a game I knew nothing about, now I do.  Temple Run, oh my, what fun!  My husband laughed at me because the game involves a lot of finger swiping across, and tilting of, the screen.  My motions were much bigger than was needed for the game.  I guess if I was watching someone play in this way I would find it funny too.  On the way home I was so into the game I accidentally tossed the iPad right out of my hands. The iPad is fine despite its short trip through the air.

My sweet, wonderful daughter used the money she made working in a restaurant to bring me this technology. She wanted me to have a new computer. The one I have is bulky making it cumbersome to carry around.  Plus it is several years old which for a computer is ancient. Attached to the gift was a poem she had written.  It expressed how she knows how awful it is to be sad and how she wished she could grant wishes. With those wishes granted, she could fix things. Since she can't, maybe with this gift, she could make things for me a little better. And, she did!  While I was playing the games and learning how to use the device there were moments I did forget my sadness and actually enjoyed myself despite being hooked-up to a drug delivery pump.

Her gift to me is so much more than this iPad.  Her gift to me came when she was born.

I love her.

I love all my kids!

How Perjeta/Herceptin work

Herceptin and Perjeta

I learned something new!  The new learning began to unfold many weeks ago and finally peaked on Monday, February 24^th, when I met with my oncologist.  Prior to this day, I had discovered that there are other cancer types that over-express the HER 2 neu protein receptors like my breast cancer cells do.  Not only do some cancers, but normal cells have these receptors too.  It is only when there are too many receptors that the cell becomes dangerous.  With all of this information, I began to wonder about the two drugs that are part of my treatment plan, Perjeta and Herceptin.  Before this new knowledge became part of me, I understood these drugs to be targeted therapies.  The word “targeted” to me meant that the drugs only affected the cancer cells. When I met with my oncologist on Monday, I asked her a question.  Her answer has totally changed my understanding of how the two drugs I am currently taking affect my normal cells.

Let me provide some background information.

There are different types of breast cancers.  The ones I am going to address here are cancers involving certain receptors.  Normal breast cells have three types of receptors:  estrogen, progesterone, and HER 2 neu.  Breast cancer cells can have all three receptors, two types, one type, or none at all.  These receptors are within each cell or on the surface of each cell and give signals to the cell’s nucleus for the cell to grow and divide.  Two different receptors use the hormones estrogen or progesterone to send those signals.  The third type of receptor is HER 2 neu (Human Epidermal Growth Factor Receptor 2) located on the outside of the cell.  It does not use hormones, but still sends signals to the nucleus telling the cell it is time to grow and divide.  (There are other HER receptors, but I am not going to complicate things any more than needed.)

If a cancer tests positive for estrogen receptors then it is considered ER +, estrogen receptor positive.  The same is true for progesterone.  A cancer that is positive for HER 2 neu receptors must have a larger than normal amount of these receptors to be considered positive.  Although it is normal for breast cells to have estrogen and progesterone receptors, some breast cancer cells do not have estrogen or progesterone receptors.  Those are considered ER – and PR – (estrogen receptor negative or progesterone receptor negative).  Others cancer cells are negative for all three receptors.  Those are called triple negative cancers.  I am considered ER -, PR -, and HER 2 neu +.  This information of receptor status is vital in the treatment of these differing cancers.  Specific drugs are used according to the type of receptors present.

The estrogen positive cancers (ER+) are the most prevalent.  One way to control this type of cancer is by reducing the amount of estrogen in the body.  Since the estrogen is needed by the receptors to grow and divide, reducing it reduces the receptors ability to function. 

One way to stop the HER 2 neu type cancer is to intercept the signal the receptors are sending to the cell to grow and divide.  Herceptin and Perjeta attach to those receptors.  Then the cell no longer receives, or at least receives less of, those signals that are causing them to grow and divide abnormally.   The first picture below shows the HER2 neu signals being sent to the nucleus, and the second picture shows the drugs attaching to the HER 2 neu receptor and blocking the signal to the nucleus. 

  

                                                                       

                                                                          

(pictures-  http://www.perjeta.com/patient/receiving/howworks )     

The reason Herceptin and Perjeta do so well together is they attach to different points on the HER 2 neu receptor producing a better blockage of the growth and division signals. 

I can’t remember when I learned that normal cells also have HER 2 neu receptors.  It wasn’t until the last few weeks though that I began to wonder if Herceptin and Perjeta were attaching to the HER 2 neu receptors on my normal cells too instead of just to the cancer cells.  That brought me to pose this question to my oncologist when I was in Chapel Hill to receive my #15th treatment for this disease. 

I asked, “Since the normal cells have the HER 2 neu receptors, like the cancer cells, how do the normal cells continue to work properly if their receptors for growth and division are blocked by Herceptin and Perjeta?”

Dr. R explained that normal cells don’t rely solely on those receptors to grow and divide.  So, though the drugs interfere with the signals from the HER 2 neu receptors it is ok because the normal cells use other pathways for this function. 

After our conversation, I understood a little more about Perjeta and Herceptin.  They are “targeted” therapies, but "targeted" does not only mean that they target cancer cells only.  The target is the HER 2 neu receptor.  Normal cells are affected too.  In the future this learning may change.   For now I understand that since cancer cells are not functioning normally due to the high number of protein receptors bombarding them with signals to make new cells rapidly, the breast cancer cells are responding to those HER 2 neu signals only.  Because of this, the drugs are effective.  Overtime as those receptors are blocked by drugs, the cancer cells in their quest to stay alive, will find ways to overcome the blockage of those HER 2 neu receptor signals.  Other pathways for growth and division signals will be found and the damage will continue.  That is why eventually all drugs will no longer work against breast cancer.

Now that I have this new information, it causes me to wonder about other aspects of how these drugs work inside my body.  With the millions of cells in my body, if the drugs are attaching to the receptors of normal cells too, is there enough of the drugs given to me to attach to the cancer cells too?  So complicated. . .  I am going to hope that the clinical trials conducted long before I received these drugs already determined what amount was necessary to affect the cancer in the most potent way possible.

Another treatment is over for me.  My next one is in two weeks.  I won’t see the doctor on that day but will see her three weeks after that.  At that time, we will schedule a scan.  Oh, the never ending scary scans.  Such is the life I lead.  For now though, I think I am doing well, all things considered.

The above information is based on my understanding of breast cancer and the drugs that are currently in my treatment regimen.  Please check with your oncologist for accuracy.   

Radiation & Incurability

To radiate or not to radiate

On the 13^th of February, I met with a radiation oncologist.  My expectations of this appointment were that the doctor would have reviewed my recent scans and my past radiation treatment file from 2010 before I met with him.  This did not happen.  Instead, I discovered this doctor was acquainting himself with my health history for the first time as he sat before me.  My husband commented later that it was most likely done this way in order to avoid his not being compensated for his time if I did not show up for the appointment.  I see this as a possibility though it did not soften my annoyance. 

He began by starting from the beginning, my 2005 diagnosis.  I was perturbed a bit that we had to start from the beginning.  All of that doesn’t matter now.  Not only was he unfamiliar with my case, he further annoyed me when he said “Tell me about your first diagnosis in 2005 when you were in high school”.  Really, I look that young?  Oh yeah, and I look like a model too.  This type of talk may have at one time flattered me, but no longer.  I know better.  Cancer and its treatment does not make someone look young and vivacious, just the opposite. I have seen myself in the mirror.

With my health history covered, he next wanted to see my scans.  I thought how could he give me a valid opinion today about possible radiation when he is so clearly unprepared to do so?  He did do something no other doctor has done.  He invited me to look at my CAT scans.  I have been curious as to what those scans looked like.  My oncologist in Chapel Hill has never looked at them so I have never asked her to show them to me.  The scans looked exactly like those I have seen on TV or on the internet with one exception.  The radiation oncologist pointed out a black area on my right lung. 

“That is showing where your lung has scarring from your past radiation”, he said. 

The lungs looked great otherwise.  Soon the image of the area where the 1.2 cm tumor is located was reached.  The tumor was not easily revealed, at least in that image.  He did not look any further for a better image.  I guess he decided he had seen enough.  He turned to me and said he wanted to speak to Dr. Z, radiation oncologist in Chapel Hill, before he would give his opinion.  He said that I had had a great deal of radiation in that area.  The tumor would need a lot more than what I have had already to produce the result we would want.   The appointment ended without his opinion on treatment with radiation which was good because he did need some time to think things over, obviously.  I left with the understanding that he would call me on Wednesday. 

I went home with doubt that he would recommend radiation treatment.  There was something about his demeanor and the way he said, “This is a difficult area to treat”.  I also thought about what I would do if he said, “Yes”.  Would I want to take the risk of losing the function of my right arm?  (My tumor is close to the right clavicle bone deep within my chest.  The radiation would pass through motor neurons responsible for muscle movement to my right arm and might damage them permanently.)  Ever since the radiation oncologist in Chapel Hill let me know of the possibility of this particular side-effect I had been thinking about what I would do.  I was leaning toward taking that risk if it was possible to completely eradicate the cancer.

Wednesday came and Wednesday went.  I know I am not the only patient that this doctor sees, but when he said, “I will call you Wednesday”, I expected a phone call.    Late Thursday morning, I called his office.  A nurse said she would contact him and then call me back.  Not too many minutes later the doctor called.

Somehow I imagined that I would be given a choice about my being treated with radiation.  I thought the doctor would call me and tell me about side-effects and what the likely hood the treatment would work with his opinion included. Then I would go home and discuss it with my family and make a decision about this treatment.  This didn’t happen.  I won’t have to make a decision.  The radiation oncologist I saw on the 13^th made that decision for me.  He will not treat me.  The possible side-effects, due to my having had radiation in 2010 to the same area, could be so severe that the doctor felt the risk of damage to me was greater than the benefit.  D---! But, I am grateful that my treatment is about what benefits me and not how much money a doctor can make by treating me.

Incurability 

This life I lead with metastatic breast cancer can be so discouraging.  I am constantly reminded on the internet and in my oncologist’s office of the incurability of stage IV breast cancer.  In talking to the radiation oncologist on the phone, the words that my oncologist has said more than once raced through my brain yet again, “Your cancer is probably in other places, but can’t be seen yet”.  Another way to put what he said is . . . even if we get rid of that tumor in your chest, you are still going to die of breast cancer.  This reaffirms how impossible my situation is.  It explains why once breast cancer metastasizes doctors don’t go after it aggressively.  The goal is stability or shrinkage, nothing more.  According to my oncologist, studies have shown that getting rid of the tumor(s) that can be seen doesn’t save lives-- sneaky horrible breast cancer cells.

I did not truly understand how deadly metastatic breast cancer was until my cells found their way to this point of no return.  I thought that if it ever metastasized to an organ, if it was caught early, there would still be a chance to save me or anyone else.  Apparently, almost 100% of the time, this is wrong.  Nor did I know that 30% of early breast cancer patients will eventually be diagnosed with stage IV.  No wonder so many bloggers with stage IV breast cancer are sick of Pinktober because it creates beautiful images and stories of early-stage breast cancer patients all smiling because they beat the disease.  There is nothing happy in the pink party for people like me.   

OK, so radiation is out for now.  There may be a need to use it in the future if the cancer grows in such a way that it is necessary for my comfort to reduce it.  At least I have Perjeta and Herceptin.  I hope these targeted therapies continue to do their magic. 

Life without Taxotere

Life without Taxotere for this three week cycle of treatment has been wonderful.  I have felt tremendously better. 

·        The neuopathy caused by this drug was starting to make my feet hurt when I stood for any length of time. My feet did swell and pain was felt, but there was a definite improvement. 

·       The scalp sores I have enjoyed (ha ha) at the end of week two after treatment did not appear.   

·        I did not feel anxious by the end of the first week from the steroids taken because I did not have to take those pills.  Those steroids were responsible for lessening any nausea symptoms and reducing inflammation.  My body did not like it.  I could not concentrate on any one thing for very long.  The drug made me feel like I needed to jump out of my skin to find relief from the anxiousness. 

·        Mentally I was and am so much happier.  I didn’t go through the horrible sadness I have felt after Taxotere.

·       My mouth feels so much better. No more destruction to the cells of my mouth. Yipee! I couldn’t taste food very well for the whole week after my infusion.  Salsa would set my mouth on fire.  No amount of milk could alleviate the pain.  Now eating is fun again.  My teeth had even begun to hurt. 

·        I still feel tired at times, physically weak, and sometimes I can’t figure out why I don’t feel right, but overall this cycle has been the best since I started treatment.  There are moments when I feel almost normal – well, almost.

·        Diarrhea still plagues me.

Tomorrow is infusion day.  That will be the time for herceptin and Perjeta to attach to the receptors on the outside of my cancer cells and stop them from growing and dividing. 

Thanks for reading.      

Herceptin/Perjeta ONLY

February 3rd  No more chemo, for a while anyway

Treatment #14 

Good news, no. . . great news!  Best news I have had in a long time.

 

CT SCAN REPORT

The chest tumor is still present.  This scan showed a 1.2 cm mass compared to the November scan that showed a 1.4 cm mass.  This report noted “stable” disease, but as you can see it says the tumor is “slightly diminished in size”.  YEAH!

Notice “no evidence of pulmonary mass”.   That means no lung tumors were seen!  Either they are so small that the CT scan did not pick them up or they are no longer there.  There is also the possibility that the tumors seen in May 2013 where not tumors at all.  They could have been scar tissue from some illness in my past.  Either way, nothing was seen on this scan!

  

Today, I have been freed from the grasps of chemo, at least for a little while.  Now I will only be treated with Herceptin and Perjeta which are targeted therapies and won’t affect my normal cells.  The news gets better as I don’t have to take any steroids or nausea medication with this regimen.  I will feel physically better.   Taxotere works, but it is such a harsh treatment.  I was almost to the point that I was going to ask for a break from it.  This news brings me such relief.

Dr. R. said this is a great time to try to do without the Taxotere.  Eventually I would have to stop Taxotere anyway because the body can only tolerate it for so long.  As I have said in a previous post, Perjeta is new having only been available to patients outside of clinical trials since June 2012.  The use of just Perjeta and Herceptin is also new at least to the doctors treating me.  I am hoping this new treatment plan will work because it has several nice benefits:  a full head of hair again, physically I won’t feel so ill.  I am bursting with happiness about this.  For the next three months, I am free of Taxotere.  Then I will have another scan and hopefully another 3 months of just HP.   

I spoke to a radiation oncologist today about the possibility of radiating the chest tumor.  Because I have had radiation in the past, there are possible serious complications that could occur if radiation is given again, the worst being loss of the use of my right arm.  But before those complications are discussed, my past treatment with radiation must be reviewed to see dosage used in order to see if it can be done at all.  I really want to have radiation because this could actually completely kill the cancer in that area.  The radiation oncologist said he would be fine with the decision “not to” or the decision “to” take this treatment.  The thought of not having cancer in that area any longer is such a strong reason to take the treatment.  Losing use of my arm because of possible nerve damage to the nerves along my neck above where the tumor is located is a strong reason not to, but cancer is way uglier and is a killer where the other is not.  I really won’t know the true risks associated with radiation until my next appointment which will be with the radiation facility that treated me in 2010.  (Date still yet to be scheduled.) They will review my history and will make their recommendation.

Another plus today…I only had to take Tylenol before treatment today.  That is two pills compared to the 8 that I previously had to take.  Also, no Neulasta shot needed to help my white blood cells bounce back.  That is a $4,000 shot out of the financial equation!

Three weeks ago, I had a MUGA scan for my heart function.  It was at 68% which is good and not only is that good, my heart function has improved. 

From the American Heart Association website. http://www.heart.org/HEARTORG/Conditions/HeartAttack/SymptomsDiagnosisofHeartAttack/Radionuclide-Ventriculography-or-Radionuclide-Angiography-MUGA-Scan_UCM_446354_Article.jsp

The test measures your ejection fraction, which is the amount of blood pumped out of the heart during each heartbeat (contraction). It’s usually expressed as a percentage. For example, an ejection fraction of 60 percent means that 60 percent of the total amount of blood in the left ventricle when it is full is pumped out with each heartbeat. A normal ejection fraction is between 50 and 75 percent.

It has been such a good day today.  I still can’t believe the report was so good.  Modern medicine is wonderful. 

Pleading with Cancer

Cancer . . . it’s me.

Come later

when my life

is more complete.

Let me see wrinkles

so deep

and skin

so thin

from elasticity gone.

I beg you,

stop

the lassitude,

the pain

Cancer . . . it’s me.

Let me see

my children grow

to be adults,

to be on their own,

that’s all I want.

Death too soon

is death unfair.

It takes from me

and from them,

too.

Memories missing,

pages empty,

lost to me,

by your bombardment,

hard to bear. 

Cancer . . . it’s me.

Stop this game you play,

out-smarting, outwitting, out maneuvering

us all.

Unfurl your madness

unfurl your mystery

so others will know

and early steps into the darkness

will cease

because your dress

will finally look different

than other dancers

and my body

will see you

and take back what is mine.

Scans show your control, 
reveal your destruction.

Each day

you grow.

Each day

I slow.

Cancer . . .  it’s me.

Stop hurting.

Stop growing.

Stop taking.

Stop stealing

my time.

Rationalization of death

does not exist.

No lessons learned.

Tragedy defines

my one day forgotten life!

Cancer . . . it’s me.

Chemo #13 Scans reviewed in 3 weeks

No news today, really.  The last three weeks were typical for side-effects.  My neuropathy in my fingers improved from my last treatment so that was a relief. 

Somehow I expected to have scans done before today and reviewed at this appointment.  I was jumping ahead too quickly.  The 3 week period I am now entering is the time for new scans to occur.  On February 3, those will be reviewed.  If everything is stable or if shrinkage is seen, a break from the beneficial but evil Taxotere, as far as side-effects go, may be the next plan for me.  Herceptin and Perjeta will act alone.  I am hopeful this is the case.  This scan really makes me nervous though.  I would really like a break from Taxotere.  Anytime I want something badly, the nerves can be troublesome.  It is not a happy drug as far as how it makes me feel.  If the two other drugs can do the job without it then that is a much better treatment option.  If my scans show growth, my treatment plan will change completely.  It is quite unsettling due to the fact that I am currently taking the best drugs available for my disease.    

For this appointment, the usual side-effects were discussed and lungs were assessed audibly.  All is fine.

This morning I had the 3 month MUGA scan to look at my heart function.  Herceptin can cause reduced heart function in about 2% of patients.  I have not had any problems so far and am hoping this will be the same today.  I will not know until my next appointment.

That is all for today.  Thanks for checking in on me.     

Pictures of my finished quilts.

T-Shirt Quilt

I finally sewed the last stitch and have completed my quilts.  The T-Shirt Quilt was the hardest since it was so big, and I couldn't lay it flat enough to sew properly.  I had no idea how hard it would be until after I started.  If I had the money, I would have paid a company to put it together. Those quilting companies use huge stretching tables and machines with long quilting arms to sew the fabrics together.  That would have made this quilt much more durable.  But, I suppose it has the charm of hand-quilting which my son may not appreciate until he is much older. The Star Quilt gives me much more satisfaction.  It is also hand quilted, but was much easier to quilt because I just sewed along each star pattern.  With the T-Shirt Quilt, each square didn't always have a pattern to follow.  I am very happy to have finally finished these projects.
Oh, and I recently started cleaning out my attic.  So much to do, so little time.

Star Quilt