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.”

BEGINNING CYCLE 6: I HAVE NOTHING TO COMPLAIN ABOUT

My “drug run” was successful. Just got back from National Institutes of Health (NIH) in Bethesda, Maryland at midnight. Couldn’t get a direct flight back to Phoenix, so I had to fly to Las Vegas and then wait for a connection to Phoenix. Never-the-less, it was worth it. The experimental drug Ibrutinib (PCI-32765) has caused my white blood count (WBC) to continue a downward trend to 53,000, which is the WBC I was at exactly two years ago. This is a very good thing. This makes me feel like I have been gifted those two years. One of my clinical brothers (Matt) has actually normalized, and his WBC is now in the high normal range. I am so happy for him.

I met more participants in the trial on Friday and we exchanged lots of information about our progress on the drug. Many of us don’t shake hands. Many of us have even moved past the Obama knuckle bumping. We decided for health reasons that we will do elbow bumping when we greet and leave each other. I – on the other hand – carry antibiotic gel with me, just in case I need to touch someone’s hand. I’ve still got my mother’s European need for human contact in me.

OUR COMPROMISED IMMUNE SYSTEMS

One of the clinical trial participants continues to have Immunoglobin infusions (IVIG), even when her numbers are above the recommended number to receive infusions, in order to prevent bouts of pneumonia. Her WBC is almost in the normal range and she has been taking Ibrutinib three months longer than me. Even though we have been getting positive results from Ibrutinib, our compromised immune systems will probably always be susceptible to viral and bacterial infections, so extra care must be taken so that a common cold does not transform into deadly pneumonia that lands us in the hospital.

Saline solutions and a room humidifier (Honeywell was recommended by a participant) are helpful to prevent the bloody noses and/or the breathing problems. No Neti Pots, according to some of the participants, because the nostrils are a direct passageway to the brain. Not using distilled water, or not properly cleaning the Neti Pot can cause death through brain infections. See

http://well.blogs.nytimes.com/2012/09/03/rare-infection-prompts-neti-pot-warning/

http://www.forbes.com/sites/daviddisalvo/2012/08/27/how-not-to-die-using-a-neti-pot/

DRUG COMPANY DISCUSSION

NIH had a discussion with the drug company, based on the ordeal we all went through with cancelled flights to the East Coast due to Hurricane Sandy. They gave us extra pills to tide us over in case of another weather crisis. We are all thrilled.

SIDE EFFECTS

My side effects this month have been nothing to write about. I have just noticed that it takes longer for me to heal from even a mild scratch. I still get slight stiffness or cramping in my hamstring muscles and my thumbs, especially if I am exposed to cold or hold a position too long. Because the drug often causes internal bleeding, I am not surprised that blood was found in my colon, so off to the colonoscopy doctor I go. What a pain in the butt! LOL.

I have gotten over my fear of needles and am no longer as ticklish as I have always been. When you are poked and prodded so many times, it becomes your new normal.

BLOOD TEST

• My morphology report indicates that I have giant thrombocytes (platelets). According to the experts, this could be fragments from the CLL cells, and should be of no concern.

• I also have a rare teardrop-shaped red blood cells, which is a technicality, and have more than likely been caused my the CLL cells.

• I have mild hypochromasia, which means I have a mild anemic condition due to a deficiency of hemoglobin in the red blood cells.

• My LDH is normal, which is great.

• My kidneys and liver are normal.

• My GP discovered that I am Vitamin D3 deficient, so I have increased my Vitamin D3.

• My local oncologist/hematologist continues to give me monthly B12 shots, since I was diagnosed B12 deficient when I first was diagnosed with leukemia.

AND IN SUMMARY

The research team met with me and were pleased that I wrote a letter to President Obama about the value of the NIH funding. NIH and this clinical trial has been my lifeline. So I have absolutely nothing to complain about.

Reposting of Dr. Brian Koffman's post on Ibrutinib Creators

Thank you, Dr. Brian, for this wonderful post about the inventors of our miracle drug.

Now a Word from the Creators:
The Team who Designed and Synthesized the Molecule now called Ibrutinib

http://bkoffman.blogspot.com/2012/11/now-word-from-creators-team-who.html

MORE LEUKEMIA RESEARCH TO SMILE ABOUT

Well  Thanksgiving is over, but my gratitude is not. I am grateful for my family, my friends, my online CLL friends, and the amazing researchers and staff at the National Institutes of Health. How very blessed I am to have the opportunity of being in the NIH ibrutinib clinical trial. I am grateful to have my 15 minutes of fame on this earth by being a participant.

Dr. Mohammed Farooqui will be presenting some of his findings from our clinical trial at the American Society of Hematology in Atlanta, Georgia in December 8-11. One of his findings is that platelet function does not seem to be affected negatively for participants on the experimental drug ibrutinib.

His abstract can be found at this link:
https://ash.confex.com/ash/2012/webprogram/Paper50250.html

My friend Michael Novak also alerted me to a new finding in the leukemia world. Dr. Robert Weinkove is a Clinical Research Fellow at the Malaghan Institute of Medical Research in New Zealand. His research focuses on vaccinating leukemia patients through stimulating the activity of an immune cell called invariant natural killer T (iNKT). This is another targeted immune therapy.

Here is the link, if you would like to read the entire article:
http://www.malaghan.org.nz/news-and-events/boosting-immune-responses-against-leukaemia/
http://sciencealert.com.au/news-nz/20122011-23865-2.html

We are at the brink of discovery. The maintenance of leukemia for high-risk patients, and perhaps even the cure are right around the corner.

I am headed out to Bethesda, Maryland next week. I will be posting the results of my tests after I return.