HAPPY DANCE

I got my airline ticket to NIH! Doing the HAPPY DANCE!!!

I will post when I return...

OBSTACLE

NOUN obstacle (def) = something immaterial that stands in the way and must be circumvented or surmounted;

For example: "Lack of imagination is an obstacle to one's advancement"; "The poverty of a district is an obstacle to good education"; "The filibuster was a major obstruction to the success of their plan"; “Hurricane Sandy is an obstacle to Dr. La Verne getting her ibrutinib.”

If this wasn’t so serious, I would be laughing ‘til I cried. I not only have to fight cancer, but now Hurricane Sandy is headed right to the DC/Baltimore area, where my plane is supposed to land next week and my cancer treatment drugs need to be picked up. My last day’s supply is Thursday. Stay tuned…

Blog gadget update

I just added a new gadget to my blog called FOLLOWERS. I would love for my subscribers to use that gadget by clicking on the "Join this site" button, so that I can see who is following my blog. I have had over 1,000 people viewing my blog, but I don't know who you are unless you have posted a comment, emailed me personally, or if I have seen you in person. Thank you in advance.
-- LV

WORDS of WISDOM

I had the honor of attending Chaya Venkat’s last meeting at her house in Columbia, Maryland – that is, until she “gets her mojo back.” It was really worth my while staying longer in the East Coast after my medical appointment at NIH (National Institutes of Health).

Chaya, the chief science writer for http://updates.clltopics.org/, is a priceless patient advocate for leukemia patients with all different venues of CLL/SLL. She gives relentlessly to leukemia patients. She has been my personal virtual rock, since I was diagnosed with 17p deleted malignant B-cells that have run amuck. She has been our voice, the layman’s translator of academic medical jargon, and the inspiration for us to take control of our own health. She has been the empress of all dragon slayers, but has grown weary in the battle. Chaya has been wounded too many times with the deaths of friends. She has held thousands of hands, and touched thousands of hearts. Now her heart needs a little R&R and healing, so off to India she goes. There is not enough love and gratitude to give back to that lovely woman. I personally will be forever grateful. I pray every day that she gets her mojo back…

This blog posting is a summary of the meeting topics I found most interesting to me. I am hoping this will inform those who are caretakers, as well as those who are patients.

I. TOPIC 1: DECISIONS ABOUT YOUR CANCER TREATMENT

A. When you enter a clinical trial, be aware of the informed consent.

B. Once you make a decision, “do not look back and second guess yourself, because therein lies madness…” (a quote from Chaya)

C. The buck stops with you the patient. You won’t be handed information. Don’t take it personally. You must be your own advocate.

D. Understand that the suicide rate is the highest in the oncology field. It can’t be fun watching people die.

II. TOPIC 2: FCO vs. FCR vs. BR CHEMOTHERAPY

In summary, FCO appears to work better than FCR, and FCR appears to work better than BR for most CLL/SLL patients.

A. FCO (fludarabine + cyclophosphamide + ofatumumab)

Fludarabine (trade name “Fludara”) is a purine analog that relies on a p53-dependent mechanism for cell kill; therefore, it is not as effective for 17p deleted patients.

Cyclophosphamide is an alkylating agent.

Ofatumumab (Trade name Arzerra, older name Humax-CD20) is a fully human protein that attaches to the CD20 marker. With previously treated patients who were fludarabine refractory and Campath ineligible or refractory, ofatumumab did seem to work better than Rituxan in clinical trials. Ofatumumab hangs onto the B-cell longer.

B. FCR (fludarabine + cyclophosphamide + Rituxan)

FCR is often referred to as the “gold standard.” This frontline treatment has been used successfully for a number of years. This is not a cure, however, and most patients will relapse after seven years.

Fludarabine (trade name “Fludara”) is a purine analog that relies on a p53-dependent mechanism for cell kill; therefore, it is not as effective for 17p deleted patients.

Cyclophosphamide is an alkylating agent.

Rituxan (rituximab) is a monoclonal antibody that is often called “mouse juice,” since it is made from human protein and mouse protein. It attaches to the CD20 marker.

C. BR (bendamustine + Rituxan)

Bendamustine (Treanda) is a purine analog/alkylator hybrid agent.

Rituxan (rituximab) is a monoclonal antibody that is often called “mouse juice,” since it is made from human protein and mouse protein. It attaches to the CD20 marker.

III. TOPIC 3:  INFECTIONS

A. Bacterial infections

CLL/SLL patients get bacterial infections if they do not have enough IgG in their blood work. CLL cells cannot grow up to be healthy plasma cells. Pneumonia is caused by bacterial infections. Therapy will not help IgG. The only drug that has made IGG levels go up is Revlimid (Lenalidomide).

IgG can be replaced with IVIG ($10,000 per dose). Blood from as many as 10,000 donors could be used to make a single batch of IVIG. IVIG is a blood product that is in short supply. IgA and IgM cannot be replaced.

B. Viral infections:

T-cells work with viral infections.

C. Clinical trial eligibility:

If a patient has been exposed to Hepatitis C, he or she is not eligible to participate in most clinical trials.

D. People don’t die of CLL/SLL. They die of one or more of the following:

1. secondary cancers

2. side effects of cancer treatment

3. pneumonia

E. How to prevent infections:

1. Have your Vitamin D3 level checked by you GP. Remember that excessive Vitamin D is also toxic.

2. Chew Trident sugarless gum or any gum with XYLOTOL. It is a sugar alcohol sweetener used as a sugar substitute, and bacteria can’t eat it. It essentially starves your bacteria. Xylitol is actively beneficial for dental health, reducing tooth decay to a third in regular use, and has been shown to reduce the incidence of ear infections.

3. Get inoculated. Get a pneumonia vaccine as soon as you are diagnosed. It works for five years. The longer you wait to get this inoculation, the less chance you have of it working fully. Get a flu shot every year, even if it has less of a chance of working as the time from diagnosis goes by.

4. Break the habit of touching your face.

IV. TOPIC 4:  KINASE INHIBITORS and REVLIMID

A. Ibrutinib (PCI-32765):

This is the kinase inhibitor clinical trial in which I am participating. NIH says that the drug will be FDA approved in 2-3 years. Chaya believes it will be more like 5 years until it is commercially available.

A couple participants have reported iron deficiency and being anemic due to gastro intestinal bleeding. This is a micro leak in the G.I. track – essentially a small almost unnoticeable leak that adds up over time.

B. CAL-101:

24% of the participants on the kinase inhibitor trial are suffering from Grade 3-4 pneumonia, according to Chaya.

C. Revlimid (lenalidomide), a thalidomide analogue (which caused limb abnormalities in babies when used during pregnancy) has proven to be a disappointment in treating 17p deleted patients. Overall, it has caused 80% of participants to have Grade 3-4 hematologic toxicity.

V. TOPIC 5: BONE MARROW

A. Pancytopemia means that the bone marrow is dead. This occurs in late-stage CLL/SLL. Red and white cells, as well as platelets are drastically reduced.

B. The white blood cell count and ALC (absolute lymphocyte count), which is the sum of the B and T-cell counts, are not as important as the infiltration of the:

1. bone marrow

2. spleen

3. liver

4. and lymph nodes

C. These counts are important for bone marrow health:

1. red blood count (normal range 3.93-5.22 M/uL)

2. hemoglobin (normal range 11.2-15 g/dL)

3. neutrophils (normal range 34.0-71.1%)

4. platelets (normal range 173-369 K/uL)

VI. TOPIC 6: HEALTH TRIVIA

A. The basal temperature of a leukemia patient is abnormally lower than the normal person. If a healthy person’s body temperature is 98.6 degrees Fahrenheit, a leukemia patient can have a full-blown fever at 99 degrees.

Take your temperature the same time each day for 2-3 weeks and chart the results. This will be evidence to give your doctors to show your lower body temperature.

B. Dental care is very important for a CLL/SLL patient. Please inform your dentist that you are a leukemia patient. Let him or her know about your treatment and side effects.

C. Types of cytopenia:

1. anemia = a deficiency of red blood cells

2. Leukocytes, leucopenia, or neutropenia = a deficiency of white blood cells

3. thrombocytopenia = a deficiency of platelets

4. leukocytopenia = too low WBC

So these are the notes I wrote down at the meeting. These were the topics that were of particular interest to me. I hope you will find this information helpful to you.

Until my next posting … wishing you love and gratitude, because after all… we are all in this together.

SERENDIPITY

The big news is that as of October 4, 2012 the clinical trial at National Institutes of Health in Bethesda, Maryland (NCT01500733) has been suspended and is currently under review. This research area of the federal government is one of the most valuable resources for people like me who are left with little options. This means that the additional 17p-deleted leukemia patients, who thought they were new participants in the clinical trial, are temporarily on hold and are not allowed to be on the study until further notice. This does not include me, because I am not a new patient.

Professor Chaya Venkat, my patient advocate, met with the research director of Johnson & Johnson to try to get compassionate use of ibrutinib, since these patients will not live long enough for the drug to be FDA approved. She said she would pay her way to California to meet with the drug company stakeholders. She was denied.

It is also unclear whether untreated 17p-deleted patients (me) will be included in the initial FDA approval. The key is to get enough participants in the trial to have a decent enough sample size to warrant inclusion. Suspension of the trial is a big kick in the stomach. We are 5% of the CLL/SLL cancer population.

NIH will continue to follow patients in this trial and continue to provide the drug as long as the drug company provides the drug to NIH. NIH may continue to monitor patients after the trial.

I have written a letter to President Obama letting him know about the importance of the people who provide funding for the research. What is done here at NIH is of incredible value to patients. This is how medicine is suppose to be.

This posting is about my health update.

BLOOD WORK

The good news is that my white blood count (WBC) has dropped another 25,100, which is heading in the right direction. These are normal: electrolytes, kidney, liver, sodium, potassium, red blood count, hemoglobin (which means I am not anemic), and lungs.

These counts I need to keep an eye on:

Lactate dehydrogenase: slightly higher than normal

Uric acid: slightly higher

Platelet function: slightly lower

I have no eosinophils or basophils in my immune system.

Neutriphils are 9.5%, when they should be 34.0% to 71.1%.

BONE MARROW BIOPSY

According to Dr. Adrian Wiestner in the Hemotology Branch of the National Heart, Lung, and Blood Institute (NHLBI) of NIH, I have a very good reduction of malignant B-cells in my body and the experiment is going as expected. My bone marrow biopsy indicates lymphoid infiltration involving 20-30%, as opposed to 40-50% eight weeks earlier. Before the clinical trial, researchers knew that the drug would diminish the size of lymph nodes and eradicate the malignant cells in a patients’ blood through apoptosis (cell death). They were not sure it would help the bone marrow, in which much of the malignant cells hide out. Well, now we have a new scientific finding! It is working on the bone marrow too!

CD3 shows scattered positive T-cells. CD3 is required for T-cell activation.

CD34 protein has slightly increased to 3-5% positive. This is an important adhesion molecule and is required for T-cells to enter the lymph nodes. It facilitates cell migration.

I also have positive megakaryocytes, which are large bone marrow cells from which mature blood platelets originate.

CT SCAN

According to the CT scan, there is a decrease in adenopathy (swelling or abnormal enlargement of the lymph nodes) since June 20, 2012. In the September 7, 2012 report, there is evidence of lymphadenopathy, but the number and size of the lymph nodes on the neck have “dramatically decreased” when compared to several months prior.

The CT scan indicated degenerative disease in my neck of which I was aware. Prior to beginning the clinical trial, I was going to physical therapy at The Barrow Institute in Scottsdale. The attending physician had looked at my scans and thought he had pulled the wrong medical records when I entered his office. He said that if he had just looked at the medical scans, he would have said that I was a patient who had to immediately go in for spinal surgery. He said he was surprised at how good I looked. Surprise! But this is another story for another day…

MORE GOOD NEWS

In spite of the fact that I have had some minor side effects, such as slight bruising, a little dizziness, and occasional tenderness in my mouth, I have no breathing problems, no high blood pressure, no appetite issues, no mouth ulcers. I have had a little more fatigue the past cycle (even though my blood work does not indicate a reason for the fatigue). I think I was so excited that I was feeling better that I overdid it a little.

FINAL THOUGHTS

The researchers at NIH are pleased with my progress on this experimental drug. It seems to be doing what it is supposed to do. I am about as happy as an “egg-suckin’ dog in the middle of a chicken coop” (my husband Carl’s words).

One thing I understand is that even when my WBC is normalized (between 4,000 to 10,000). I will still be immune compromised since the drug does not cure me. It simply manages the cancer. Medicines that interferes negatively with Ibrutinib are the following: anti-fungal systemic pills, anti-depression medicine, acid reflux medicine, and blood thinners (a BIG no-no).

Being immune compromised also means that I cannot ever have inoculations with live viruses, such as a live shingle shot. I also cannot be around people who have had the live virus shot for about a week to 10 days. That also includes live virus inoculations given to my grandchildren, my dog, and people at the Walgreens Pharmacy.

When you are first diagnosed, you should have a pneumonia shot, which should last about five years. A flu shot should be given every year, even though it may not help a patient who has had leukemia for a while, but it might help a little.

Since the number one cause of death for patients like me is pneumonia, the herd mentality is in place here. If you have been inoculated and protected from whatever diseases and you are in good health, flock around me, because you will protect me from the germy people. LOL.

I personally will be eternally grateful for the opportunity I have been given to participate in the NIH clinical trial with Ibrutinib (PCI-32765), regardless of whether this experimental drug helps me in the long haul or regardless of whether I continue to have access to it. I know I am helping others in the future, who can benefit from the findings of this scientific research.

RANDOM THOUGHTS

Well, it is getting close to my next visit to the National Institutes of Health on the East Coast – more tests, more drugs, and then an informative visit with Dr. Chaya Venkat, the most wonderful patient advocate for leukemia. I will be meeting with her and several others in her living room in Colombia, Maryland. This blog posting is about my random thoughts as I am getting ready for the trip.

CRAP IN MY LIFE

Cancer has a way of making me stop and reflect upon my life journey. I realize that I have gratitude for all my blessings – and I have many. I have also come to terms with the fact that I am oddly respectful of all the negative and painful events in my life that have taught me my life lessons. It wasn’t pretty, but it made me who I am today.

When something that I perceive as negative or painful happens in my life, I ask myself:

“What did that teach me? What am I supposed to learn from this in my life journey? How can I make this event transform me into a better human being? Who do I NOT want to be like?”

Do you remember the children’s song “Sticks and stones will break my bones, but words will never hurt me”? Oddly enough, it is usually the words (or lack of them) that are more painful in our adult life. As we get older, it is not the details of the event that we remember, it is how the person made us feel that lingers in our heart and often still causes pain after all these years.

As I reflect back on my life, there are people I hope will forgive me for my real or perceived bad behavior. There are others that I need to forgive – especially for their angry and cruel words directed at my family or me.

WORDS OF MY MOTHER

My mother was one of the most positive people I have ever known. She did, however, hate hospitals and hated to be alone. So one of the nights I spent with her shortly before she died, we were up all night giggling and laughing about the stories of all the guys she dated before she met my Dad. The oncology nurse barged in the room and sternly pronounced, “If I hear any more noise from you two, I will kick you out of the hospital!” My mother, answered back, “You promise?!?” The nurse then realized what she had just said to a terminally-ill cancer patient.

Sorry folks. Having a positive attitude does not cure cancer, but it certainly makes life a lot more bearable for the patient and his or her family and friends. I am not a Pollyanna, but I certainly know that a negative attitude can make you sicker, and it can make life miserable for everyone who loves you. It is such a waste of limited energy. I have learned to avoid toxic people like the plague, and my life has improved substantially.

I have been thinking lately why I am one of the few people that I know who is not on “happy pills.” One of the reasons I believe is because I have such a demented sense of humor and I can find humor even in the most dire situations. I learned that from my Mom. It is definitely a survival tool and a gift she gave me. I thank her every day for teaching me that.

WORDS OF MY FATHER

When I was a child, I was one of those who learned by observing others. My Dad said that was the Japanese part of me. It saved me a lot of pain.

In my life I witnessed the wrenching pain caused by people being cruel to each other, and I learned the importance of mercy and kindness.

In my life I witnessed people stressed out with anxiety, and I learned that I would rather choose inner peace and meditation.

In my life I witnessed the emotional damage angry people have on others and themselves, and I have learned about the importance of gentleness and self-control.

It is interesting that these are also the words of my father. I thank him everyday for teaching me kindness, inner peace, and gentleness. These were teachings from a man who fought in two wars, was wounded, and had his best Army buddy blown up next to him in the foxhole.

THE ULTIMATE REALITY

You do understand that none of us are leaving this world alive? Whether I am blessed with many more years or I die sooner than I like, that is just how it is. As I have said many times before, I am in a win-win situation. I win if I stay alive for years to enjoy my friends, children, and soon-to-be 11 grandchildren. I know where I am going if I die, so I win when that happens. So I don’t care to waste my time wallowing in the quagmire. I like to get on with my life and be grateful for every second.

I am still a work in progress. There is much to be said about a little imperfection. Some times I need to remind myself that I have many blessings in my life. Some times I need to remind myself that there are people in this world much worse off than me.

A SELF-INDULGING MOMENT

Most of the time my blog updates are very clinical. I become the “pigmy nerd mama” that my son used to tease me about when he was in junior high school. This is because that is how I am best able to cope with the diagnosis of leukemia. My friend Nancy understands this well. I take the scientific approach and report the facts, and that has a way of removing me personally from the reality of the stupid cancer. I become the university researcher – a role I have been quite comfortable with for many years, since I left my life as a creative and art director.

The truth is that several women I personally know who have cancer have died way before their time. And moments when this happens cause me to pause and doubt my mortality… But only for a moment, because I only give myself a moment for the luxury to be self-indulgent, and have my self-pity party. And then I must move on, because life moves on.

One beautiful woman with the sweetest disposition died because she forgot to value her life more than the value of her job. She spent hours working overtime to be loyal to her company, and did not seek out cancer specialists who could have saved her, until it was too late. Her family was and probably still is very angry about this.

Another beautiful woman tried every treatment possible, until her body could take no more. She made the brave decision to stop the chemo treatments and die gracefully. I remember giving her a foot massage when she was in the hospital and we laughed about how hospital rooms should be made into spas where sick people could be pampered and powdered. I still think it is a great idea.

And then there was my beautiful friend, who was dismayed because the steroids she had to take made her gain weight and gave her a chipmunk face. “Like to shop?” I asked her. We spent the afternoon trying on all the stretchy and layered clothing that hide imperfections, and smelling different oils from India. It was a girls’ day out and we had a blast. She died the first day of my cancer treatment when I was at National Institutes of Health back East. I couldn’t figure out why she didn’t return my emails and voicemails. In all the chaos, the women in my cancer support group (including me) were not notified until a month after she died.

My friends and my family have been instrumental in supporting my journey. One of the most delightful comments I got was from my friend Laura who told me that she forgets that I have cancer, because I don’t look or act like I do. She asked me if that was a bad thing. I said “absolutely not.” Because you see for that moment in time when we talk and laugh, I am the La Verne she has always known. I am not “La Verne, who has cancer.”

But there are moments when I need the personal confirmation from friends and family that they understand the severity of the invisible face of cancer. I truly value those people in my life who share their time with me, for time is the most valuable gift anyone can give me.

P.S.: I hope this message was not too much of a downer. Sometimes when I write, it gets it all out on the table, and I can move on. The glass of red wine (which I cannot have with this clinical trial) would have really helped. I did buy a bottle of red Zinfandel to send to Dr. Keating; however. He can enjoy it for me…

P.S.S.: This is an anonymous quote about time I would like to share with you. It is a little corny, but hey, what’s new?

Have you been to the bank?

Imagine there is a bank that credits your account each morning with 86,400. It carries over no balance from day to day. Every evening it deletes whatever part of the balance you failed to use during the day. What would you do? Draw out every cent, of course!
Each of us has such a bank. Its name is TIME.
Every morning, it credits you with 86,400 seconds.
Every night it writes off, as lost, whatever of this you have failed to invest to good purpose.
It carries over no balance. It allows no overdraft.
Each day it opens a new account for you.
Each night it burns the remains of the day.
If you fail to use the day’s deposits, the loss is yours.
There is no going back.
There is no drawing against the “tomorrow”.
You must live in the present on today’s deposits.
Invest it so as to get from it the utmost in health, happiness, and success!
The clock is running.
Make the most of today.
To realize the value of ONE YEAR, ask a student who failed a grade.
To realize the value of ONE MONTH, ask a mother who gave birth to a pre-mature baby.
To realize the value of ONE WEEK, ask the editor of a weekly newspaper.
To realize the value of ONE HOUR, ask the lovers who are waiting to meet.
To realize the value of ONE MINUTE, ask a person who missed the train.
To realize the value of ONE SECOND, ask a person who just avoided an accident.
To realize the value of ONE MILLISECOND, ask the person who won a silver medal in the Olympics.
Treasure every moment that you have! And treasure it more because you shared it with someone special, special enough to spend your time.
And remember that time waits for no one.
Yesterday is history
Tomorrow is mystery
Today is a gift
That’s why it’s called the present!!