21 months on Ibrutinib

Dear friends and family,

The overall review of my blood work from the medical team at the National Institutes of Health is encouraging. I have now been on ibrutinib for 21 months. Normal white blood count (WBC) is 4.5K to 10K WBC per microliter (mcL). My WBC was 17.65K in January 2014. It has gone down to 14.82K. This means I am still not in remission, but I am headed in the right direction.

Here is a brief review of white blood cells:

White blood cells (i.e. basophils, eosinophils, lymphocytes, monocytes, and neutrophils) help fight infections in the body. In my case, a large number of white blood cells are leukemic. Leukocytosis is the name of the medical condition of having high number of WBCs. I have at times had very low counts of infection-fighting cells, even though my WBC was extremely high. In my last visit my infection-fighting white blood cells are increasing. This is good.

Lymphocytes are made up of T-cells and B-cells. The blood cancer I have affects the B-cells. That is why it is even more important to get the lymphocyte absolute count than the WBC (which throws in all five types of white blood cells). The normal lymphocyte absolute count is 1.18 to 3.74K/uL. In my last visit my count was 7.27K (still high), but crawling down.

I was initially diagnosed with low B12 and D3 levels. I take monthly B12 shots at my oncologist’s office and additional supplements of B12 and D3. My levels are now in the normal range.

My glucose level, mineral panel, protein test, thyroid stimulating hormone test results are all normal. However, my uric acid level is slowly creeping up, so I have been prescribed Allopurinol daily. Cancer patients in treatment can have increased levels of uric acid from dying cancer cells. We are hoping that is the case instead of the potential for gout or kidney stones.

MEDICAL, DENTAL, DERMOTOLOGY PROCEDURES:

I have to contact the medical team at NIH if I am going to have any medical, dental or dermatology procedures to see if I need to stop taking ibrutinib temporarily to prevent internal bleeding.

SYMPTOMS:

-- VISION

I need to make an appointment to check my vision, which has been getting worse. There are reports of cataracts in some participants in the study.

-- NAILS

My fingernails and toenails were photographed for the clinical trial, since a number of participants have had trouble with their nails. They come in brittle and sometimes bleed at the corners. I have no visible nail beds except on my thumbs. I still have ridges on every finger, but taking the Biotin supplement daily has slightly improved my nails.

-- HAIR

After over a year on the drug, the texture of my hair on my head changed from straight as horse hair to wavy. This is a positive side effect. LOL.

I started losing body hair on my legs and arms before my official diagnosis. I have not had to shave my legs in years (5+ years). I have no arm hair. I have to pencil in my eyebrows, since the brows are so thin I look like an alien when I get out of the shower. LOL.

Maybe this is TMI (too much information), but it is scientific data: I only have to shave my underarms three times a year tops. Oddly enough the only hair that grows on my legs is my toe hair, since I made the mistake of shaving them when I was a teenager. LOL.

My theory is that my body is working hard to get healthy and growing hair on my body is not a top priority. Odd that I have been able to keep my hair on my head healthy.

-- CHEMO BRAIN

If this forgetfulness doesn’t get any better or gets worse, I am going to have to see a neurologist at NIH, according to my medical team. I can’t remember where I put things. I can’t remember dates, names, etc. I have to write everything down in my iPhone or it does not get done.

Oddly enough the MRI of my brain came back normal. Many of my family and friends would argue that this is not possible. LOL.

-- CRAMPING

My daily cramping of toes, fingers, ankles, shoulders, and legs has decreased by 50%. I am more focused on drinking lots of water. I don’t know if this is helping, but nothing else seems to be helping.

-- NOSE BLEEDS

No nightly nose bleeds this winter.  I am using a humidifier in the bedroom and applying Ayr nose ointment as needed. This has helped.

-- MUSCULAR/SKELETAL PAIN

I sometimes have muscular/skeletal pain when I wake and during the course of the day. I also have stenosis of the neck and lower back and need to get another MRI. I had physical therapy and now I am trying myofascial release treatment for the pain. The NIH medical team said I should take Tramadol as needed. I really don’t like drugs (except the one that is saving my life), so I take it very, very sparingly.

-- FATIGUE

I am still fighting fatigue. I can have good days and not so good days. I used to sleep six hours a night and wake fully refreshed (before diagnosis). Now I sleep 9-10 hours per night and often need a 1-3 hour nap. I thought the older you got, the less sleep that was needed?

OVERALL RESULTS of 17p-deleted CLL/SLL participants:

At the beginning of the clinical trial 51 patients with 17p deletions participated in Arm B of the study. This includes me. There are now about 46 participants. Two died and the others had secondary cancers or progressed in their cancer because the drug stopped working for them. The two who died were taking blood thinners.

TRISOMY 13

The last FISH test indicated I have 100% Trisomy 13 – not Trisomy 12 or 13q that are found in many leukemia patients. I thought it was a typo. If you recall, this is an unusual finding. Dr. Mohammed said that when the medical team does the bone marrow aspiration this summer, he will examine the blood to see if it has changed. I want to know what this means. I can only find articles on babies born with this additional chromosome. There is little research done on this type of chromosome addition developing in adults. I can only find a few research articles on this.

BLESSINGS

Now I need to count my blessings. A group of six young men (Rocky Harris, Tyler Breskin, Rory Bullington, Adrian Gastelum, Ryan Whalen, Stacy Williams) are cycling in Lake Tahoe June 1, 2014 in my honor to raise research dollars for the Leukemia & Lymphoma Society (LLS). They are appropriately named Team MaMa La Verne. Here is their website: http://pages.teamintraining.org/az/ambbr14/TeamMamaLaVerne

 and facebook page: https://www.facebook.com/MamaLaVerne

A young man named Scott Harkey, who is a partner in Owens Harkey Advertising, is running for LLS Phoenix Man of the Year in my behalf. http://www.mwoy.org/pages/az/az14/sharkey

So in spite of all the unknowns, I feel the love. That is what keeps me going. That is what puts a smile on my face.

Love & Gratitude,

La Verne

The Laws and Cancer

Those of you who have reading my blog know that I have leukemia and I have been documenting my journey with the Dragon. In my case, I am chemo-resistant (chemo cocktails administered intravenously only have a 5% chance of success). I also have less than a 1% chance of finding a bone marrow donor. A clinical trial was my only hope.

The experimental drug Imbruvica (a.k.a. ibrutinib, PCI-32765) I have been taking the last 21 months has kept the cancer at bay. I am still not in remission, but I am better off than I was before. As soon as I stop taking the drug the cancer will progress.

The FDA approved of the drug November 2013 for the treatment of mantle cell lymphoma and in February 2014 for the treatment of previously-treated chronic lymphocytic leukemia (CLL). CLL patients with 17p deletion (poor prognosis) are supposed to be next on the approval list. That would be me. The good news is that it will be available outside of a clinical trial. The bad news is that I will not be able to afford it unless the laws are changed.

When a patient in Arizona has chemotherapy intravenously, it costs him or her a copay (about $30). When a patient has oral chemotherapy, it may cost him or her $4,000 to $8,000 per month, since the law presently does not include coverage under the umbrella of cancer treatment. The reason is because targeted oral cancer treatment was not invented when the law was written 13 or 14 years ago. The insurance companies have not legally had to cover the costs, so the patient has to come up with the money or stop taking the treatment.

I recently testified before the Arizona Health Committee on the importance of changing the law so that cancer patients have access to oral cancer treatments. Last Thursday night I returned from the National Institutes of Health in Bethesda, Maryland from a visit with my clinical trial team. I was greeted by the news that Arizona’s FACT (Fair Access to Cancer Treatment) Act passed the Senate Rules Committee by a unanimous vote. It is headed to the Senate floor and then to the Governor to sign.

This is good news, but does not affect those patients on federal health insurance. So my son Rocky Harris and I are flying to Washington, D.C. in May to talk to the U.S. Congress about cancer treatment access. He is going as a Leukemia & Lymphoma Society Board Member and I am going as a patient advocate. The bottom line is that cancer treatment is cancer treatment, whether it is administered intravenously or orally.

Update of fair access to cancer treatment bill

Thursday, March 6, 2014 the Arizona State House of Representatives approved of the Fair Access to Cancer Treatment (FACT) HB2078 bill 57 to 0 after a third reading. Today (Friday) it is scheduled to be read in the Senate. Before the bill becomes law, it must be signed by Governor Jan Brewer.

As Diane Mackinnon, FDA patient representative and fellow ibrutinib trial patient, pointed out to me, many of the CLL/SLL patients are over 65 and on Medicare, so they have a need for federal support of a fair access to cancer treatment. The Cancer Treatment Parity Act of 2013 (S.1879), which was introduced 12/19/2013 by Senator Al Franken of Minnesota, has been read twice and referred to the Committee on Health, Education, Labor, and Pensions. Hopefully the group of Leukemia & Lymphoma Society representatives from Arizona can give testimony to Congress the first week in May.

This federal bill will require the same cost-sharing applicable to all prescribed orally- or intraveneously-administered or injected anticancer medications. In other words, there will be the same cost to cancer treatment drugs regardless of how they are administered. It also requires the Medicare Payment Advisory Commission to evaluate how closing the Medicare Part D donut hole affects Medicare coverage for anticancer drugs taken orally with a focus on cost and accessibility.

The Importance of Social Support for Invisible Cancer Patients

Well, I peaked your interest with the term “invisible cancer patients;” didn’t I? Well-meaning friends and family often say to me, “You don’t look sick. In fact, you look really good!” SURPRISE! I really do have cancer. People are judged by what others see in them. If you look good, people have such high expectations, as opposed to someone who is using assistive devices or who is visibly sick. Today there are many targeted cancer therapies (like Imbruvica, a.k.a. ibrutinib, a.k.a. PCI-32765) that don’t cause many of the visible signs of cancer treatment, but it is cancer treatment non-the less.

Many of us with cancer are living with an invisible disease. It could be your neighbor, an old friend from college, or the woman you ran into at the grocery store. They look like healthy normal people, but they are fighting an ongoing illness and living with fatigue, pain, cognitive impairments, dizziness, and other limitations, such as having limited ability to cope with stress.

The invisible cancer patient is left with the residuals of having cancer – both physical and psychological. Cancer support groups and one-on-one counseling can help a cancer patient get through the psychological stress of coping. In today’s blog I am addressing the importance of social support from family and friends for the invisible cancer patient like me.

Usually when someone thinks of a cancer patient, they are remembering the visible effects of chemotherapy with the hair and weight loss. A person standing next to you in the checkout line may have a brain tumor, but it is not until he is treated with chemotherapy that you notice he looks ill.

Cancer changes your life. Along with the physical changes, having a cancer diagnosis changes your relationships, your activities, your career, your role in life, and comes with psychological stress. I have always been the “EverReady Bunny” full of energy. It is difficult for me to admit that I am not the same person. It is frustrating that I cannot do all the things I used to be able to do… that I need help. I used to be the master multi-tasker. Now I have to be realistic and remember that I can schedule one or two things per day before I get really fatigued. The problem is that I don’t look sick to others, so they often forget. And I often forget.

Many of us with invisible cancer are often walking around with a dark cloud over our heads asking ourselves “When will the other shoe fall?” Others find comfort in intermittent ostrich moments of wanting to forget we have cancer at all. On good days we are joyful and then we remember… “Man, I have cancer! This IS a big deal!” Other days we just want to crawl back in bed and dream about our life B.C. (before cancer), because having cancer sucks. We get sick of it and want our old lives back again. I have always been one of those “healthy as a horse” kind of people… B.C. Some days it feels like someone stole something very important from me. Some days tears may fall.

Herein lies the frustration. Because I have always been such an independent woman my entire life, it is difficult for me to admit that life has changed. I do not want to be treated differently, but some days I have no choice. I have a new normal.

Some times it is delightful when a friend forgets I have cancer, because then I know she is treating me like a normal person. Yes, I have cancer, but it does not own me. It does not define me. So those moments are precious to me.

Scientific research has found that there is a direct correlation between a cancer patient’s wellbeing and the social support the person receives (Usta, 2012). If you are family or friends of a cancer patient, know that reaching out leads to positive emotional adjustment to cancer. It lessens the high psychological stress of having the disease.

The National Cancer Institute (NCI) states that cancer patients who are able to cope with stress have a better quality of life. Having a positive attitude does not make a cancer patient live longer, according to NCI. It makes the journey more palatable for everyone. However, I can tell you that the psychological stress (i.e. fighting the insurance company’s drug coverage and benefits, wondering if there is a treatment that will work, leaving a lucrative career before you can collect retirement benefits) takes it’s toll, even on the person who has successfully managed a demanding career. The National Cancer Institute also states that psychological stress alone has not been found to cause cancer, but continued exposure to long-term stress has a direct correlation on health and ability to cope with cancer.

So what can you do to offer social support to your friend or sister or mother who has cancer?

• Let her live as normal a life as possible. Please do not feel sorry for her or be overprotective. It really isn’t helpful.

• If she acts differently at times – maybe a little needy or sensitive, please be patient with her. It soon will pass.

• Understand that especially during medical testing she may be anxious or fearful. This is usually short-lived, so please overlook her stressful attitude and be prepared to be forgiving and understanding. Try not to react emotionally by arguing with her. It makes matters worse.

• Family and friends, you do not have to feel pressured into keeping a positive attitude at all times, because it is just plain unrealistic. When people have major life changes, it is normal to feel some sadness, fear, anxiety, depression or guilt in order to learn to cope with the diagnosis. It’s okay.

• Please do not blame yourself or blame her. Try not to feel guilty, but if you do and feel the need to explain your regrets to her, go ahead. Then just move on with her.

• Please do not always talk about the past, unless it is something that will make all of you chuckle. She needs to live in the here and now. She also needs hope that she has a future.

• Most importantly, listen to your heart. When she talks about cancer, do not change the subject. Please listen to her. Do not be silent and worry that you may say the wrong thing. Knowing that she is not alone and that you care is what is really important to her. When she doesn’t want to talk about it, offer to talk about it at another time.

I am blessed and filled with love and gratitude, but that does not always stop the blue funk from coming my direction. Remember that showing you care is good medicine. Remember, I need you more than ever. Do not wait for me to reach out to you. Sometimes the simplest thing just makes my day.

Fair Access to Cancer Treatment bill (or FACT Act) gets a vote in Arizona

Wednesday, Feb. 12, 2014

Reference title: Cancer treatment medications; equivalent cost-sharing

This afternoon at 2 p.m. the Arizona State Senate, 51^st Legislature, Committee on Finance met for the second regular session in Room 3 to discuss the SB 1247, the Fair Access to Cancer Treatment bill (or FACT Act). The hearing was live-streamed and introduced by Senators Driggs, Tovar; Representatives Brophy McGee, Campbell, Carter, Gonzales, Gowan, Meyer, Townsend; Senator Barto; Representatives Boyer, Steele.

The current Arizona state law, enacted in 2010, allows insurance plans to charge cancer patients treated with oral cancer drugs much higher co-pay rates than those treated with other forms of chemotherapy. This has resulted in higher mortality rates than in other countries that have health systems with easier access to oral cancer treatments, according to Pat Elliott, e-patient advocate. “Cancer treatment medications” means prescription drugs and biologics that are used "to kill, slow or prevent the growth of cancerous cells.”

The vote was seven for and zero against. There were testimonies from two committee members on the difficulty for patients getting through cancer treatment. One spokesperson said that being against this bill is similar to saying that dentists should use hand drills on teeth, because electric drills have the extra utility expense.

Bill’s text: http://www.azleg.gov/legtext/51leg/2r/bills/sb1247p.pdf