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.