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. 

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 3^rd 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

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.”

In the end, what matters most is how well you lived, how well you loved, and how well you learned to let go. – Unknown author

GRATITUDE AND LOVE TO ONCOLOGISTS AND CAREGIVERS

Today I feel the need to send a special thank you for all oncologists and caregivers.

ONCOLOGISTS

The oncologists I know work long hours wrestling with the angel of death, often sacrificing a personal life for their patients or their research. This entwined with the stress of healthcare obstacles of which they have little control, often leads to physical and emotional exhaustion, frustration, depersonalization, and questioning ones contribution. About five years ago, this resulted in about one-third of oncologists facing burnout (HemOnc Today, June 10, 2008). The number has climbed to 56% (EPEC-O Module 15, p.3).

I have met the compassionate and caring oncologist, whose life is based on having an impact on the lives of her patients. She is the angel of life. She has pursued medicine for the right reasons. She treats the whole human being.

I have met the cold and depersonalized researcher, who only sees a patient as a lab rat. His bedside manner is lacking. He is what I refer to as “Dr. Buzzkill.” But strangely, I do understand him and how he must disconnect. But he should not be interacting with cancer patients face-to-face, because he can do unintentional harm. However, he too needs to be thanked for his contribution to medicine. And maybe a little prayer of compassion directed his way might help… Dr. Michael Keating from M.D. Anderson (Houston) once told me that you can teach a bright person about medicine, but you cannot teach him or her how to care. So the key is to find good human beings, who want to be physicians. It’s also important to remember that these doctors are only human.

The remarkable ones are the oncologists who somehow balance their human compassion with their research – the best of both worlds. Thank you so very much.

IN SICKNESS AND IN HEALTH -- CAREGIVERS

I remember a discussion I had with Dr. Chadha, who diagnosed my leukemia. He told me that I was very lucky to have a solid good man as my husband, because an alarming number of spouses cannot handle the diagnosis of cancer, and they leave. I personally believe it is because they are selfish and fear their own mortality. Those that stay, still fear their own mortality, but have an inner strength and love that overcomes that fear.

For those special people that stay, I give my gratitude and love. I never realized that it is often more stressful to be a caregiver of a person you love, than to be the person diagnosed with cancer. It wasn’t until several caregivers visited the Cancer Support Group that I attend, that I actually heard what is going on in their head. It made me appreciate my husband Carl more. It explained why he is often overprotective of me and sometimes stressed. I cannot thank him enough for being the one person whom I can be bluntly honest and transparent, and yet he still remains by my side.

A special hug goes to Dr. Nick, who stays by Pat’s side, who is fighting the cancer battle leaving no leaf uncovered. That kind of persistence is admirable. That kind of love is special.

A special hug goes to Diane, who has a 38-year-old daughter in hospice. The process of death brings out the best and the worst in people. I honor Diane for her unconditional love for her child.

So there is caregiver burnout too. The stress can be physical, emotional, financial, social, and psychological. Caregivers need to take care of their health and sanity by taking time for themselves and not feeling guilty about it. This is one of the best ways to ease the stress. If caregivers don’t take care of themselves, they will not be able to take care of the person they love and they will stress out the cancer patient and make things worse.

Every human being needs others. What I have found that really helps with the caregiver stress is to have a support group of friends and family who give their time and love to the cancer patient. I am eternally grateful for those wonderful friends of mine, and I am so grateful for my family – for each person who takes the time to be with me or talk to me.

PARTING THOUGHT

There are hidden blessings in this life and usually they are the little things that are really the big things that bring joy to our life. It really helps to live in the here-and-now, and forgive people. Be grateful for all your blessings. Tell people how much they mean to you today, how much you appreciate them, and how much you love them.

“Gratitude is not only the greatest of virtues, but the parent of all others.”

-- Cicero (106-43 BCE)

6 MONTHS ON IBRUTINIB

I began the completion of my sixth cycle on Ibrutinib by boarding the plane to the East Coast with my husband Carl to pick up (hopefully) a three month supply, and undergo a blood test, CT scan, and bone marrow biopsy at National Institutes of Health (NIH). As someone who is immune compromised, I am aware of all the people boarding the plane, who are sniffling, sneezing, coughing, and hacking their way to their seat. Their cold could end up being my pneumonia, especially when we are breathing the same air for hours. I wear a mask and disinfect my seat to prevent me from getting sick on the plane. Why don’t they wear a mask to prevent others from catching their cold? I think it should be a health issue, just like not smoking on planes. I think I will have to write a letter…

On another note, I received my medical bracelet and dog tags from http://www.americanmedical-id.com/. Just in case of emergency, any medical team will know that I cannot be given blood thinners or it could be fatal.

The best part of our trip was seeing my cousin Sam and his girlfriend Carole, eating at Japanese and Italian restaurants, and seeing the comedy Capital Steps at the Ronald Reagan Center in D.C. The really good news is that Dr. Farooqui said I will continue to get the drug from NIH until it becomes commercially available, which means even after the last participant reaches completion of Cycle 6. And… Dr. Farooqui said I could drink my red wine again!!! Oh, mercy. Life is good!

The worst part was the bone marrow biopsy. My blood pressure was 147 over whatever when I began the procedure. When it was done, it was 119/46. Guess I was stressed… I had one uncomfortable one at M.D. Anderson in Houston, but the two others I had at NIH were a piece of cake. This one was #4. I had to be shot five times with Lidocaine, a local anesthetic that stops nerves from sending pain signals – usually it only takes one to work with me. That hurts more than the biopsy to me. I really don’t know why this procedure was different. I was wheeled out in a wheel chair, because I couldn’t walk. The PA said that this was the largest sample of bone that she has ever gotten from a patient. She has done hundreds of biopsies. Lovely… Glad I could be of service.

The next day I met with the NIH fellow Dr. O’Sullivan from Ireland, Dr. Mohammed Farooqui, Dr. Georg Aue from Germany, and Susan Soto, R.N.

My white blood count (WBC) trend is downward, which is good. I have moved in a continuous downward trend from 135,000 at peak to 53,000 (last month) to 45,000 (this visit). Goal is to normalize at 4,000 to 10,000. One of my 17p blood brothers, Dr. Matt, has normalized already. His peak was double mine. He is our poster child. This just shows how the physiology of everyone’s body is so different. I will just have to be patient.

One of the most exciting findings is that my neutrophil percentage is now 20.1. It more than doubled from the previous month of 8.5%. It has been below 9 since before I began the clinical trial. The goal is to increase to the normal of 34.0% to 71.1%. Neutrophils aid in fighting infection and disease. They are made by the bone marrow.

I have a continued reduction in lymphocyte percentages, which is good.

Kidney and liver functions are normal.

Spleen size has been reduced from 10 cm to 9 cm, which is normal.

Mineral panel is normal.

Immuniglobulin readings are normal.

Platelet count is close to normal range.

I am deficient in D3 and B12, so I get monthly B12 shots and I increased my quantity of D3 vitamins.

My CT scan indicated no changes since September 2012 in lymph nodes. There is no indication of lymph node enlargement under the arms, under the neck, or in the abdomen. Lymph nodes in neck, underarms, and abdomen are about 0.5 cm. There is a spot on my right lung that Dr. Aue confers must be evidence of benign granoloma tissue -- possible exposure to Valley Fever, which everyone who lives in Arizona for more than two years has. No worries.

I have mono-alleles, which means that the detachment is only on one arm. This is good.

I had questions about next generation sequencing – BIRC3 (which is very bad to have and confers chemotherapy resistance), SF3B1 (which is related to 11Q deletion), NOTCH (which is related to Trisomy 12). Dr. Aue said that NIH does not conduct that testing. He said it is very complex.

It is unusual that I have 17p deletion (poor prognosis) and a mutational status (good prognosis). NIH is in the process of checking my serum sample and double-checking my mutational status.

I will get bone marrow biopsy results and cytogenetics results in about three weeks. At that point I will be able to see if the cellularity in the bone marrow and the deletions in my cytogenetics have changed for the better.

Here are my side effects for CYCLE 6:

I always keep a record of ANY side effects, whether or not the minor irritations are caused by the drug or not. Only the researcher knows when the data from all the participants is collected and analyzed.

1: Nose

All month my nose has been dry. When I wake up, it is often because my air passage has been blocked by dried mucus. When I blow my nose, it is accompanied by a little blood from the tenderness of the inside of my nose. The Ohio State University recommends a bedroom humidifier. Dr. Brian Koffman recommends bactroban ointment to keep the inside of the nose moist. Dr. O’Sullivan said that I should ask my pharmacist about the availability of bactroban (Mupirocin), since it is used in hospitals to counter bacteria. I will be calling my dermatologist to see if I can get a prescription for it.

2: Hair on arms

My forearms and legs have been without hair for years. I noticed that peach hair is now growing on the arms. That is a good sign. That means that my body now has enough resources for my hair follicles.

3: Slight cramping

I have experienced slight cramping that lasts only a few seconds in my thumb, fingers, and hamstring muscles. It often happens if I hold my hands in the same position for a while, or if I move my body in an unusual position. The hamstring cramping occurred in a cold environment.

4: Gout?

Suddenly one morning at the end of the cycle it felt as though I had a cut in the crease of my middle toe under my right foot. There was no cut. I observed that it was a little swollen and tender to the touch. It began Dec. 22 and lasted for several days. My uric acid was slightly elevated in my January 4^th blood test, so this is a possibility.

5: Paronychia

The corners of the lateral nail fold on my fingers (where the skin meets the top of my nail) is tender and does not heal readily. It was diagnosed as paronychia, a splitting of the skin surrounding the nails. This often happens with patients taking chemo. Applying moisturizer on the nails is recommended. Dr. Georg Aue recommends I get rid of my nail polish, as it may cause the irritation. It is probably the acetone that is the culprit. So I will not be doing any hand modeling for commercials. LOL.

6: Traces of GI bleeding

During my annual exam, my G.P. performed a fecal occult test to determine if there were traces of GI bleeding. The test was positive. I am scheduled to have a colonoscopy in mid-January. I will have to discontinue using Ibrutinib three days before, so that I do not have a problem with internal bleeding during this procedure. As soon as there is no indication of bleeding, I will continue using Ibrutinib.

7: Hip bone soreness

For a few days I have had hipbone soreness. It is a dull aching feeling. The vital signs nurse said that several patients have reported this.

Early Sunday morning I was greeted with a headache, nausea, and dizziness. I was thankful that our plane did not leave until the afternoon, so that I could be still and let it pass. This could have been a little vertigo episode with my Meniere’s Disease. Who knows? I initially thought it meant I was allergic to the Lidocaine, but I would have thought the reaction would have been Thursday night, if that were the case.

So that’s it. Overall good news. I hope you enjoyed an insight into my leukemia journey. I want to leave you with one thought: I want Ibrutinib to be available for all leukemia patients, especially those with 17p deletion, who have no options. This beats a bone marrow transplant or heavy-duty chemotherapy any day. My side effects are minor irritations, but I certainly can live with them. I am better than I was six months ago, when I began this clinical trial. And for that I am grateful.

I WILL NOT LOSE HEART

Scripture tells us: "... do not lose heart, but I am heart-broken. It is the unexpectedness of death that causes despair. I think of those sweet little children and caring adults in Connecticut, who lost their lives… such a senseless act of violence. I cannot imagine the pain those families must endure.

Another heartbreak happens when we are blind sighted by the sudden death of a positive person, who is feeling better than ever, who says that life is good, and hope for cancer maintenance or cure is within his reach. When I start to feel really good and a little complacent about my situation, it is then that reality shakes me to the core.

The CLL/SLL community just lost a cancer warrior. Today in Lake Stevens, Washington, was the memorial service of Randy Shirley, who was a participant in the ABT-199 clinical trial. He was 55-years-old when he died. Just like most of us on the kinase inhibitors, on Monday Randy remarked that he felt better than he had since he was diagnosed. Randy’s drug dosage was increased Tuesday. Wednesday he died. This was reported by Dr. Brian Koffman (http://bkoffman.blogspot.com/2012/12/randy-shirley-another-cll-warrior-passes.html).

There are a number of us who have volunteered in clinical trials to be participants in testing kinase inhibitors to manage CLL/SLL (Chronic Lymphocytic Leukemia/Small Lymphocytic Lymphoma). The three drugs that are presently being tested are: (1) ABT-199, (2) GS-1101 (formerly known as CAL-101), and (3) Ibrutinib (formerly known as PCI-32765).

I knew Randy virtually from an interactive site about leukemia. He was an optimistic soul. He did not let leukemia own him. Randy’s motto was “Never, ever give up!” Randy was not supposed to die. The cancer treatment was working for him. So you see, the reality is that life is fragile and you can still die, even if you are upbeat and proactive.

I used to say that anyone can die walking across the street and getting hit by a truck. I don’t say that anymore, because it minimizes the daily struggle of a cancer patient.

Even though I am heart-broken, I have not lost heart and I have not lost hope. I know that a positive and warrior attitude will make my life’s journey a quality one. I will still take my chances and live my life with gusto, gratitude and love. I will not live in fear. And I will thank God for every single day I have on this earth with the people I love.

WHAT IS HOPE?

Esparanza…

“Listen to the mustn'ts, child. Listen to the don'ts. Listen to the shouldn'ts, the impossibles, the won'ts. Listen to the never haves, then listen close to me... Anything can happen, child. Anything can be.”

― Shel Silverstein

According to Merriam-Webster Dictionary, HOPE means “to desire with expectation of obtainment.” Wikipedia contributors state that “Hope is the emotional state which promotes the belief in a positive outcome related to events and circumstances in one's life. Despair is the opposite of hope.”

This weekend the 54^th Annual Meeting of the American Society of Hematology (ASH) is underway in Atlanta, Georgia. My doctors at National Institutes of Health (NIH) in Bethesda, Maryland, and M.D. Anderson in Houston are presenting their findings on the magical drug Ibrutinib (formerly PCI-32765), along with other leukemia experts from The Ohio State University. The phrases “promising,” “has the potential to improve long-term prognosis for patients,” “high response rates,” “durable remissions,” “including patients with high-risk disease (me),” “effective and safe targeted treatment option,” “manageable toxicities,” give me hope.

Let me review what chronic lymphocytic leukemia (CLL) is for those of you who asked. It is a blood cancer that causes malignant white blood cells to gather in the lymph nodes, bone marrow, blood, and other organs of the body. The cancerous cells causes organs to enlarge, bone marrow to be so impacted that it cannot produce red blood cells, lymph nodes to enlarge to the point that it impacts other organs of the body, and white blood cells increase exponentially in the bloodstream, since the malignant cells do not have the message to die.

Ibrutinib, which is the experimental drug I am taking at NIH, is an anti-cancer therapy that specifically targets an enzyme that is important to the growth of CLL. The enzyme is called Bruton’s tyrosine kinase (BTK). Ibrutinib “unhooks” the leukemia cells from the lymph nodes, bone marrow, and organs. The “unhooked” leukemia cells then flow into the blood stream causing a temporary increase in white blood count (WBC). Ibrutinib also gives the leukemic cells the message to die, so once the cells enter the blood, they essentially starve and die. An important thing to know is that unlike chemotherapy, Ibrutinib promotes the death of the malignant cells and does not harm healthy cells.

Today there is no knowledge of the long-term side effects of using the drug. Today there is no knowledge of when the drug stops working. But today for me, HOPE comes in the form of three blue capsules a day…

“I believe that imagination is stronger than knowledge. That myth is more potent than history. That dreams are more powerful than facts. That hope always triumphs over experience. That laughter is the only cure for grief. And I believe that love is stronger than death.”

― Robert Fulghum, All I Really Need to Know I Learned in Kindergarten

P.S.: Thank you Rocky and Liz for naming my granddaughter “Hope.”