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