Monday, February 18, 2013

Clarification of trisomy 13


I began the ibrutinib clinical trial in July 2012, so I am now completing Cycle 7. I have a high percentage of trisomy 13 in my blood work that is not found in CLL/SLL. In 2010 I had 23%, January 2012 I had 93% and January 2013 it is 100%. So what does this mean?

Trisomy 13 is a marker and is found in myelodysplastic syndromes (MDS), which in the worst case can develop into a fast-growing and severe leukemia called acute myelogenous leukemia (AML). In the best case can be mild and easily managed.

According to Dr. Farooqui, it is clinically insignificant for me today, because (thank God) my hemoglobin, platelets, and LDH (lactate dehydrogenase) are normal now. My blasts are between 4% and 5%. Through anecdotal observation only (and not statistical data) ibrutinib appears to increase the regeneration of cells in the bone marrow. I am on watch and wait mode and will see what my bone marrow biopsy has to show this June. So according to Dr. Mohammed… not to worry. More easily said than done.

I did, however, breathe a breath of fresh air after that phone call. 

Monday, February 11, 2013

ENDING 6-MONTH CLINICAL TRIAL and TEST RESULTS



I have mainly good news to report, along with some not-so-good news. The not-so-good news is at the end of the blog. I have been running a marathon and I have moved passed the “block wall.” I see the finish line, but I have stubbed my toe and it is broken. I now have to continue the race knowing full well that the broken toe may be my demise.

For weeks I have been waiting for different doctor’s translations of three tests – colonoscopy, bone marrow biopsy, and cytogenetics. I know enough to be dangerous. So I haven’t felt inspirational. I haven’t felt positive. I haven’t felt courageous. I have felt fatigued and introspective. That is why I had to write my blog “Letting Go” posted February 3rd not only for you, but for me as well. I needed to remind myself that it is important to listen to my own words. Many times I have a cognitive understanding of things, but emotionally it takes a little longer to process. I like to get all the facts first, and then I process them emotionally.

The results are in and now I am ready to write this blog.

THE GOOD NEWS
Colonoscopy Biopsy
I had a colonoscopy in January because my GP detected blood in my colon. I was off Ibrutinib for three days prior to the procedure to prevent internal bleeding. The doctor did a biopsy of a small polyps that was found. Somehow the test results did not end up on the doctor’s desk for three weeks. I kept calling and almost felt like a stalker. Results finally came in… No cancer found. No more colonoscopies for 10 more years.

Clinical Trial Continuation
The NIH clinical trial I am participating in is titled “A Phase II Study of PCI-32765 for Patients With Chronic Lymphocytic Leukemia (CLL) or Small Lymphocytic Lymphoma (SLL) Who Need Therapy and Are Older Than 65 or Have a 17p Deletion.” It states that “PCI-32765 (ibrutinib) will be given for six cycles of treatment. Those who benefit from the drug will continue to take it as long as there are no side effects and the disease does not progress. Those who do not benefit will stop treatment and have regular follow up exams.”

As I have mentioned before, I am in the 17p deletion arm of the clinical trial in which participants can be under 65. I like to tease my blood brother George and tell him that he is in the “other” category – the “elderly.” I am sure he chuckles about this as he is zooming across country on his motorcycle. LOL

The trial is non-randomized, which means that there is no placebo. Everyone gets the drug. It is an efficacy study, which means the study produced good results in a prior study (Phase 1) and this treatment provides positive results in a controlled experimental research trial. So now you know I am not as brave as you thought. I did my research.

I celebrate the fact that at the end of Cycle 6 I qualified to continue taking the experimental drug. I have my 2013 schedule in hand and am scheduled to fly back East every three months for my drug run. Hurrah! Hurrah!

Bone Marrow Biopsy
Boy, am I learning from this clinical trial! Dr. Farooqui called me on the phone to help explain how to read the bone marrow biopsy results. This is a lesson in a foreign language. Apparently I have been reading the tests incorrectly. My cellularity has remained at 40-50% during the duration of the study, which is normal for my age (just turned 61).

What I have to look for is the result of the immunohistochemical stains on the CD79a marker. This indicates the amount of CLL in the bone marrow. In the January 2013 bone marrow biopsy, the CLL comprised 15-30% of the cellular marrow. In September 2012 it was 20-30%. In February 2012 it was 40-50%. So the good news is that the amount of CLL in my bone marrow is decreasing.

THINGS TO KNOW
About Oral Cancer Treatment
In this blog posting I thought I would address certain myths about cancer treatment. First of all taking pills orally does not make them less toxic. The patient is still receiving chemicals in their body just as they would if the drug was administered through their vein.

The problem with oral injection of a drug is human nature. There is no nurse to give you the drug. Some people do not follow the instructions. They eat before the 20 minutes is up or they eat a couple hours before taking the drug, so it does not get absorbed correctly. They eat grapefruit, which nullifies the benefit of the drug. They do not take it at the same time each day. Sometimes they even forget to take it. I look at the habit of taking these pills as my lifeline.

About Leukemia Remission
Throughout this clinical trial, I have had good news for my prognosis. I have to keep reminding myself to be grateful for what I have been given. I am only human, however, and humans want more.

Ibrutinib can normalize your bloodwork, and that would be a gift. Some in our study have normalized and I celebrate for them.

Many have said they have prayed for my remission. What most people do not realize is that when a leukemia patient is in remission, it does not mean that the cancer is gone. It means that you have a normal life for 18 months, three years, five years, 10 years or more, but the cancer will return.

Experts don’t know when and if Ibrutinib will stop working for patients. Perhaps there will be other options when and if this happens. Perhaps by then there will be a cure. We can only hope, and continue to support the funding of research.

I have shifted to a paradigm of survivorship. I understand this drug is not a cure, but I am hopeful that it will control my disease and I can have a quality of life.

FISH Test
I am learning every day. One of the first tests I learned about is the FISH (fluorescence in situ hybridization) test, which is a cytogenetic test used to examine DNA on chromosomes. For those of you who glaze over when I use my technical jargon, skip over the next three paragraphs.

I read my FISH test from a year ago (January 26, 2012) and the FISH test showed evidence of the loss of one copy of p53 (17p13.1) in 97% of the 500 WBC nuclei examined, as well as a second abnormal cell population of 13q34 in 92.8%.

Today there are still large abnormal clones. The probes identified a deletion of one copy of TP53 in 242 (86.4%) of 280 nuclei scored, and a gain of one copy (trisonomy) of 13q34 in all (100%) of the 249 nuclei scored. There is no evidence of trisomy 12, any other deletion, or other chromosome abnormality of the ATM gene.

Gene sequencing was not done at this time, because it is three times more expensive, so there are a couple findings that I am tagging as “most likely.” I am most likely one of the 81% who have 17p deletion and deletion of TP53 (tumor-suppressor gene). I most likely have monoalletic inactivation of TP53, which means I have a single deletion without a mutation on the remaining allele. Bialletic inactivation (having a deletion on both alleles) is worse than monoalletic inactivation.

The test interpretation states that “these results are essentially the same as a year ago.” A 6% change is not that much of a difference in the cytogenetic world. I would have liked to see a decrease, but no progression of the chronic lymphocytic leukemia/small lymphocytic lymphoma (CLL/SLL) in my world is good news.

THE NOT-SO-GOOD NEWS
I remember when I was in science class in my childhood and my teacher discussed that some day we will be able to have genetic tests to reveal our tendencies toward the diseases we may have to face in our lifetime. She asked us how many would want to know. There was a great deal of hesitation in the room. I raised my hand.

Well the future is here. When you want to know the truth, you need to be prepared that it may not be what you really want to hear. If you can’t handle it, then be an ostrich and stick your head in the sand. I am not good at that.

The NIH laboratory researchers examined my megakaryoctes. These are the bone marrow cells responsible for the production of platelets, which are used for blood clotting.

What I learned from my conversation with Dr. Farooqui is that trisonomy 13 is not usually seen in CLL/SLL patients. What that means is that instead of a deletion of the 13q34, which is commonly found in CLL/SLL patients, I have an addition of the 13q34. The staining indicated the amount is very low, and he assured me that it is of no concern today. I do not need treatment on this now.

But my inquiring mind wants to know what this infers. Apparently trisonomy 13 is found in myelodysplastic syndrome (MDS). This disorder means that the bone marrow is not producing cells correctly. These immature stem cells that accumulate in the bone marrow die prematurely and are called “blasts.” If a person has 10-19% blasts, he is categorized as a high-risk MDS patient. If a person has 20% or more of the blasts, he is categorized as having acute myeloid leukemia (AML), which is another type of cancer. So the optional bone marrow biopsy I was supposed to have this summer is now medically required, so the medical team can keep the potential for this secondary cancer in check. Not what I was hoping to hear. Now you know why I needed to get my mind right…

FINAL THOUGHT
I need to focus on what is, not what might be. I leave you with this quote:

“(S)He is a wise (wo)man who does not grieve for the things which (s)he has not, but rejoices for those which (s)he has.” — Epictetus






Sunday, February 3, 2013

LETTING GO


A Time for Everything
There is a time for everything,
and a season for every activity under heaven:
a time to be born and a time to die,
a time to plant and a time to uproot,
a time to kill and a time to heal,
a time to tear down and a time to build,
a time to weep and a time to laugh,
a time to mourn and a time to dance,
a time to scatter stones and a time to gather them,
a time to embrace and a time to refrain,
a time to search and a time to give up,
a time to keep and a time to throw away,
a time to tear and a time to mend,
a time to be silent and a time to speak,
a time to love and a time to hate,
a time for war and a time for peace.
     Ecclesiastes 3: 1-8 (NIV)

CELEBRATION OF LIFE
Recently my cancer support group had our first Celebration of Life ceremony for the Cancer Support Group at Chandler Regional Hospital. We wanted to show gratitude and love to the members of our group (caregivers and survivors) who are still with us, and those who have gone to the light. We decided that this circle of light ceremony will be our annual legacy of remembrance.

This is my prayer I shared during the ceremony:
We rejoice in your life and are forever grateful for how your life has touched ours. The good news is that we are all loved and cherished. We have nothing to fear. The moment we are born, we enter the circle of life in which there is a beginning and an end. The end of life as we know it is also a beginning. We are much more than our physical bodies. As Stephen Covey says, “We are not human beings on a spiritual journey. We are spiritual beings on a human journey.”
If tomorrow starts without you, we will celebrate your eternal spirit. We will dance for you. We will sing for you. And we will remember that you will always be with us in our hearts.

This ceremony to me was not only about being grateful, but also about being able to let go.

DEATH & DYING
Death is part of life. The moment you are born, you begin your journey. No one leaves this world alive. Death is inescapable.

Inhale… birth.
Exhale… death

And if you are fortunate enough, in between you will love and be loved.

According to my mother (the German immigrant), the American culture has a taboo on facing death and dying. She said that only when you have come to terms with death and dying, can you truly celebrate life, and life then becomes more precious.

THE CONSTANT DANCE
Living with cancer is a constant dance between holding on and letting go. Ask yourself: What is the kindest thing to do for yourself or for others? Maybe holding on. Maybe letting go.

As a patient, friend, or family member, sometimes the best thing to do is to hold on. If the patient is comfortable and has a decent quality of life remaining, then by all means, hang on and enjoy the ride.

But it is NOT a healthy choice when you are holding on waiting for the impossible to happen, when someone is in prolonged suffering, and when she is in her final stages of the illness and nothing else can be done.

People have often commented on my positive and fighting spirit, but I do not intend to fight gallantly until the end. I am a realist and when the time comes for me, I do not intend to rage against illness and dying, rather I prefer to go peacefully into the light with grace and dignity.
It may not happen. But that is my wish.

You see, after you have done everything in your power, you let go. That does not mean giving up. It means turning everything over to God.

The one thing you should never let go of is hope. Hope remains, but it gets redefined.

Receiving permission to die, relieves the dying person of the grief she has caused the family and friends. Knowing those left behind will be okay is a gift to a dying person.

I know that life will go on without me. I know that material things are inconsequential. You can’t take them with you. Ultimately, when I meet my maker, the most important thing in my life is that I loved and was loved in return.

UNFINISHED BUSINESS
In my life I have seen that attachments to people can be healthy or unhealthy. This leads me to another aspect of letting go… unfinished business with people in your life. I admit I still have a little of that left in my life.

This often brings about anxiety. “Worry pretends to be necessary but serves no useful purpose.” According to Eckhart Tolle, we create and cling to problems because they give us a sense of identity. Maybe this is why we hold on to our emotional pain far longer than its ability to serve us. I have always enjoyed the following quote: “Worry is like a rocking chair; it gives you something to do, but it doesn’t get you anywhere.”

It’s good to know that problems in life don’t define you. There are three things you can do: (1) Remove yourself, (2) Accept it, or (3) Change it.

Perhaps the best decision when taking care of unfinished business is to face the person and throw your cards on the table. Maybe the unfinished business is with your child, your ex-friend, a spouse, a sibling, or your parent. Perhaps the best decision is to forgive them, forgive yourself, and walk away. You can’t always make it right.

MY OBSERVATIONS
There are several things I have observed in my life when people are in the process of letting go.

Cancer gives you a loss of control with physiological realities at the end of life. Those people who have the need to control have a difficult time. I have witnessed both caretakers and patients at this phase struggle with the control issue and the need to be right. Let it go.

I have witnessed the pain caused when a parent and an adult child have unfinished business and the child is dying. All I can say to the parent is to be gentle with yourself. You may not have been the perfect parent, but your adult child’s problems are his own. As an adult, he has a choice to heal, just as each of us have had a choice to heal from whatever injustices have come our way. Let go with love.

Let go of stress, guilt, fear, worry, resentment, sadness, anger, and bitterness.

A CHOICE
Choose instead forgiveness and peace whether you are the patient or the caretaker. Be true to yourself. Be kind to yourself. Love yourself and forgive yourself. Relax. Take care of yourself and come from a place of love.

Be honest with yourself about your relationships. Face the void in your life that will be there when you let go.

Several times in my life I have seen beauty in the process of dying. So it is possible.

WHAT I DO TO KEEP MY HEAD STRAIGHT
Relationships are about making a connection with someone. It is not about being perfect or expecting perfection. I always told my husband that I wanted an imperfect man, because I did not ever want to be required to be perfect. He said he was the man for me, and apparently I am the woman for him. LOL

It is a good perspective to realize that there will never be a time when life is simple. With every moment we have an opportunity to let go of something negative and feel peaceful. It’s worthwhile to take the time to practice accepting that concept. To put it in Darlene’s words, “There’s always gonna be crap in your life, so put on your big-boy panties!” To put it in the words of my husband Carl, “Just deal with it!” (Did you notice I tried to interject a little humor here? LOL)

I try (sometimes successfully and sometimes unsuccessfully) to take responsibility in my life for my life. I find an avenue to rid myself of negativity and keep my head straight during this cancer ordeal. This is what I personally do:
• I laugh a lot. I surround myself with friends and family who embrace my heart. I watch comedies.
• Everyone is always in a hurry to get somewhere. Sometimes we need to just be. I take Tai Chi with my friend Sue to help me live in the present. I meditate.
• I sometimes cry. I cry about what was and what is. It is cathartic and releases toxic chemicals built up by stress in my body.
• I replay that recorder in my head, and replace my thoughts with ones that are healthy for my well being. I forgive myself.
• I spend time with those I love.
• I make a list of my causes of stress and another column on what I need to do to address them. Somehow writing it down helps me face it better.
• I create. I paint. I illustrate. I write. I design.
• I go to the gym. I dance. It gets some of that orneriness out of my system. (I used to beat a rubber chicken on the floor to relieve stress. Ask Dot about that one. LOL).
• I count my blessings everyday. I know what makes my life worth living and I embrace it.
• “La Verne,” I say to myself, “Everything is happening as it should be. Have a little faith. What will be will be.”