The Will of God

The thoughts in this posting are my personal beliefs about the will of God. Read them with an open mind or don’t read them at all. It is your choice. I do not wish to get into a religious or philosophical debate. I respect that other people may have different beliefs and that is fine. I only wish to express my feelings. I am writing about this topic because it has helped me in my journey as a cancer patient and I am hoping this will help others.

When I meet a new group of people, I like to wait as long as possible before the topic of leukemia comes up in the discussion. I like people to know who I am first, before they label me as “the cancer lady.” Yes, I have cancer, but cancer does not define me.

God did not give me cancer. I was not a bad person and given cancer as a punishment. It just happened. It is a consequence of one crazy cell in my body that went array with DNA damage and did not repair itself or die like a normal cell. Instead this cancer cell continued to grow out of control and form new and abnormal cells. With the trillions of cells in the human body, it is more of a surprise that this does not happen more often. According to the American Cancer Society, half of all men and one-third of all women in the United States will be diagnosed with cancer in their lifetime.

When someone in your family develops cancer or dies, I often hear the words “That is the will of God.” I am sorry my friend, but that is NOT the will of God. I know it may comfort some to hear that it is the will of God, but I personally get no comfort from a lie. I want the truth. The intentional will of God is for perfect health and goodness.

The battle against cancer is the will of God. I give so much gratitude and love to those wonderful researchers and physicians who have made it their life purpose to find a cure for cancer.

Getting back to the topic of when bad things happen:

What happens is that either the free will of man (or woman) or the natural laws of the universe lead to consequences. Let’s say that a person with a gun makes the decision to shoot another person. That is free will. The bullet penetrates a part of the body that is required to sustain human life and the person dies. That is natural law. God did not will this act.

Here’s another example: A soldier is exposed to Agent Orange fighting for his country. Later he develops cancer. God did not will this. This is natural law.

There is a mystery about why things happen. The longer I live, the more questions I have unanswered. I have come to understand that is because I am not all-knowing. As a human being I do not have all the answers. I just have to have faith and trust that some day in my afterlife I will come to understand.

What I do know is that it is important to take the circumstances in which you have found yourself (either by your own free will or the laws of nature) and make something good out of it. God can use a healthy person more effectively than a person with cancer; however, if you have the right attitude toward your circumstances, you can do as much good or more than a healthy person. That is where the spirit comes in.

“In the end, only three things matter:

how much you loved,

how gently you lived,

and how gracefully you let go of things not meant for you.”

- - Buddha

Fair Access to Cancer Treatment (FACT) Act

Today I am going to discuss oral cancer treatment insurance coverage and what we do and do not know about Ibruvica (formerly ibrutinib, formerly PCI-32765).

The Fair Access to Cancer Treatment (FACT) Act addresses outdated insurance company benefits that have not kept up with the times. Cancer treatment is cancer treatment – whether it is given intravenously or orally. Physicians and patients should be given the choice of cancer therapy based upon their best chance of survival. Today patients are forced to choose a less appropriate treatment option because of insurance coverage.

The Leukemia and Lymphoma Society is working to communicate this message to state legislators. I am asking those who understand the benefits of drugs like Ibruvica and Gleevac (which was FDA-approved years ago for CML patients) to call their representatives and senators to educate them on the FACT initiative.

As you recall, I began the clinical trial with Ibruvica 18 months ago at the National Institutes of Health. I was untreated, 17p deleted, chemo-resistant, symptomatic, and having less than 1% chance of finding a bone marrow donor. The risks of taking the drug outweighed any other cancer treatment for me personally. What are the long-term risks? How long before the drug stops working? What then? These are questions in which we have some answers based on educated guesses and scientific knowledge, and no definitive answers for others.

This is what we do know:

1.    1.  Ibruvica is a kinase inhibition drug that permanently and irreversibly blocks Bruton’s Tyosine Kinase (BTK) and Interleukin 2 Inducible T-cell Kinase (ITK) for specific cells daily. Translation: BTK is hijacked and T-cells are altered. Kinases are used in the normal cell functioning. The cancer cell that won’t die gets the message to die, regardless of prognostic markers (17p, 13p, trisomy 12, 11q).

2.     2. The drug begins to shrink lymph nodes within 24 hours.

3.     3.  Frontline patients on Ibruvica fare better than frontline patients on chemotherapy, because healthy B-cells are not destroyed in the treatment.

4.     4. The drug must be taken on a daily basis in order to work.

5.     5.  Ibruvica will probably cost over $100,000 per year.

6.     6. Insurance companies provide less coverage (if any at all) for cancer treatment drugs administered by mouth than they do for cancer treatment administered intravenously.

7.     7. Ibruvica is not a cure, but after four and a half years of clinical trials, many frontline patients have received partial remission. A few have received complete remissions, but there is not 100 percent progression free survival (PFS).

8.     8. The good news: There are several new oral drugs in the clinical trial pipeline that will offer options for patients who relapse.

What we don’t know:

1.     1. We do not know how this drug affects one’s ability to make novel antibodies to new health threats or what it does to one’s adaptive immune system on a long-term basis.

2.     2. We do not know how long the drug will continue to work before the cancer finds a new path.

3.     3. We don’t know what the health insurance companies will do with the payment of this drug.

In summary, taking a cancer treatment by mouth or intravenously are both viable options. So let’s offer access to cancer patients.

The Miracle of How a Book Wrote Itself

 I just wrote a book titled Idea Engineering: Creative Thinking and Innovation. Yes, you are probably just as surprised as I am. The real surprise is not that I wrote a book, but how the book got written.

Because of the research I had done as a professor, I was approached by a publishing company in New York to write a book about creative thinking and innovation for engineers and technologists. They wanted me to organize some of my prior research on the topic and said the book could practically write itself. LOL. That would be a fairly easy feat B.C. (before cancer).

I paused. One of the things that happens when faced with the Grim Reaper poking at you is that you think about your bucket list and your legacy and what you will leave behind. Will anyone remember you? Will your life have counted for something good in this world? I decided to take the chance.

I said that I was not interested unless I could put my own spin on it. I wanted to add personal anecdotes so that the book could be read by people outside of the academic realm. I wanted to add some of “life according to Dr. La Verne” moments.

Privately I explained to the editor that I had been diagnosed with cancer and had entered a clinical trial. I was dealing with some side effects, but I believed that the process would be a wonderful diversion from thinking about leukemia. He was willing to take a chance.

I gathered my research and then started organizing it and rewriting it. I thank God every day that I could write this book at my pace and my way. Some days I could not do anything. I was fatigued. Some days were good and then I would have to pay for it later. Some days I could only sit for short amounts of time on the computer, because of my spinal stenosis. So some days I worked on the computer, then got up and walked around the room. Then I was horizontal in bed and read a little, then sat back down at the computer, then took a nap. The entire process was exhausting.

The interesting parts of the journey were the times I began to get the symptoms of chemo brain (Refer to my past posting). I couldn’t remember what I had done or not done on the manuscript. I know this must sound horrific to most people, but because my demented sense of humor saves me, I found it quite amusing. I would reread parts of the manuscript and say to myself, “ Wow! This is great! Did I actually write this?” Then there were days I would read what I had written and say, “This is crap! What on earth was I thinking? This doesn’t even make any sense at all!” Then I would trash it.

On a few occasions I couldn’t remember where I put my handwritten notes. “Well, you old senile bat,” I would say to myself, “Time to do something else.” Then I would meditate for a while, do something else on my list, and try again another day.

The process continued throughout all the feedback from my reviewers and the copy editors. I wish I had a fast-speed version of me. It would have made great entertainment on YouTube.com.

So now the book is being printed. It is available from Amazon.com, as well as the publisher’s website momentumpress.net. It truly is a miracle that the book got finished. Somehow it must have written itself.

Ibrutinib stopped working for Dr. Matt

George, Matt, and I began the National Institutes of Health clinical trial with ibrutinib (PCI-32765) the exact same day. We decided we are blood siblings. George and Matt will be forever my “blood bruthas.”

Ibrutinib is now called “Imbruvica” and is available to cancer patients with mantle cell lymphoma (MCL) who have received at least one prior therapy. Soon the FDA will approve it for 17p deleted CLL/SLL cancer patients.

My last visit to NIH in Bethesda, Maryland was in October. I had hoped to meet up with George and Matt, but I did not hear back from Matt. I thought that either he was a poor communicator or something was wrong. Well, something was wrong. This is what Matt emailed to me:

Hi La Verne and George,

I’m sorry I’ve been out of touch, but I had a dramatic reversal of fortune in late September through October and was unable to communicate well. 

In summary…My June 2013 ibrutinib checkup went beautifully, with what they called a complete response to the experimental drug.  There was no sign of CLL in my bone marrow biopsy and only 2-3% of my blood cells were CLL compared with about 90% CLL when I started the NIH trial.  All was looking rosy and very positive. 

               On my 15-month checkup on 27 September 2013 things changed.  My white cell numbers were up a bit, but the NIH team was not concerned at that time.  They said they had seen some fluctuations like that and not to worry.  However, they wanted me to get another blood test sooner than the usual 3 month test, so I went to my primary care physician a couple weeks later and found that the white cells had doubled in just under two weeks. 

               The NIH team asked me to visit again on 16 and 17 October for further testing.  At this point they confirmed that the CLL had “broken through” the ibrutinub treatment and that the drug was no longer working for me.  Such a promising start turned in a total bust by mid-Oct 2013.  They suggested I return to Dr. Michael Grever and the rest of the OSU team in Columbus, OH for alternative treatment. 

               I saw the OSU team on Friday, 25 Oct 2013, and got some options for alternative treatments.  That is the day my time with ibrutinib stopped and I was no longer on the NIH trial.  We were planning to begin the new treatments at OSU soon after, but I had a series of major complications that led to three hospitalizations, two for two days each by my home and one for four days at OSU.  I retrospect all the troubles and pain were due to a Richter Transformation of my CLL into a very aggressive large-cell lymphoma.  So I turned into an even more complicated case than I could imagine.  The other thing the OSU team said is I have many more mutations than most people, making things very complex. 

               Below I have copied my latest upates to family and friends.  I’ll ask that you two distribute this to the NIH trail group as you see fit.  Ibrutinib worked well for me for quite a while, but then it stopped.  I think my case is unusual, so everyone else should stay encouraged. 

               I’m sorry I won’t be seeing you at NIH anymore.  It was great to have you in my cohort!

               As always, I wish you all the best with ibrutinib and hope all continues to trend well.  I’m taking it one day at a time, using a tremendous network of family, friends, and colleagues in Hiram and beyond.  Enjoy each day and worry about nothing but having fun! 

All my best to you both and the rest of the NIH crew,

Naturally Yours,

Matt

As I mentioned in my previous posts, Ibrutinib is a BTK inhibitor. That means it blocks a pathway used to develop leukemia cells. In Matt’s case the drug stopped working, because the leukemia found another pathway and then transformed into a very aggressive Richter’s transformation -- large-cell lymphoma. This affects about 5% of CLL/SLL patients at some time. It can appear suddenly, even to patients in remission. It has a poor prognosis with survival of five to eight months, according to the experts.

In summary Matt is at Ohio State University in another clinical trial with another experimental drug (IPI-145), an oral inhibitor of phosphoinositide-3-kinase (P13K)-delta and P13K-gamma. Matt said that the new drug is not a cure but rather a stopgap measure to get the aggressive disease under control.  

The only way he will be cured of all this is through a stem cell transplant (aka bone marrow transplant).  Unfortunately he has no matching donors in the system.  The medical team is looking into using umbilical cord stem cells or using a half match donor. No transplant can happen until the lymphoma is under control. Anyone with a fully matched donor and who has the cancer under control is in the best situation for success. Matt will be my guinea pig so that I know what to do if the same thing happens to me.

I got this news about Matt at the time I came down with an upper respiratory infection with laryngitis. I also had a severe drug-related cramp in my right ankle which tore my ligament. So I was hobbling around with a brace and cane, but the most difficult part was not talking. LOL. This is a ripe setting for a pity party. Lucky for me my friend Sally was visiting from Santa Barbara/Houston and there was no time for anything but laughter. Then Carl and I visited our friends Janis and John and the laughter continued.

Then on Thanksgiving my children and my baker’s dozen grandchildren came over to share our turkey dinner with Carl and I. That is when I was reminded again how very blessed I am for every single day.

I have kicked the pity party to the curb.

Ibrutinib is now available for MCL patients!

Ibrutinib now has a new name -- "imbruvica." It has been FDA approved to treat patients with mantle cell lymphoma (MCL) who have had at least one other treatment. 

Pat Elliot sent me these links:

http://www.onclive.com/web-exclusives/FDA-Approves-Breakthrough-Ibrutinib-for-MCL

http://www.latimes.com/science/sciencenow/la-sci-fda-treatment-imbruvica-lymphoma-20131113,0,2297063.story

http://www.nytimes.com/2013/11/14/business/drug-to-treat-blood-cancer-gains-fda-approval.html

http://news.avella.com/news/avella-chosen-as-specialty-pharmacy-partner-for-new-cancer-treatment-medication

Chemo Brain

I have always been a little on the absent-minded side. I blame that on my creative nature and my propensity to daydream.

What I did not expect to happen was a frightening fogginess that prevented me from remembering the names of a few people I have known for 30 years. I also recently had some short-term memory loss. I have had moments where it was just empty upstairs.

I talked to my GP about the problem and was given the Montreal Cognitive Assessment (MOCA) to check for dementia and cognitive impairment. The part I had the most difficulty with was the mental numeric calculations. I did not pass the MOCA test. I had to reassure the brand new GP that I honestly did have a PhD.

I kept this whole scenario from my family (all except my husband), because I didn’t want to cause them additional worry. As a university professor, my brain is my life source and this could be devastating to me.

The GP ordered an MRI of my brain to check to see if I had a secondary cancer (a tumor in my brain) or large plaque burdens, which is indicative of early Alzheimer’s disease. Then my demented sense of humor took over. I thought to myself, “ Well, if I don’t have my cognitive ability, at least I have my body.” I busted out laughing when I realized that I don’t have that either with my leukemia diagnosis. Oh, life… What have you thrown my direction again?

My brain scan turned out normal with no vascular plaque buildup and no tumor. So what is the problem?!? Why was I having so many blonde moments? (Apologies to all my real blonde friends.) I thought that the impairment could be caused by stress.

When I mentioned the cognitive issues to my hemotologist/ioncologist at my appointment – almost as an afterthought – she had an answer. “La Verne, you’ve got chemo brain.” It doesn’t matter if one takes cancer drugs by vein or orally, the results are the same. This is known as PCCI (post-chemotherapy cognitive impairment) – changes in memory, concentration, and the way you think. Sometimes it is temporary. Sometimes it is long-term. Some symptoms of chemo brain are:

• Confusion

• Difficulty doing more than one thing at a time (multitasking)

• Forgetting things you normally remember (memory loss)

• Fatigue

• Difficulty finding the right word

• Difficulty calculating in your head

• Difficulty remembering or following the flow of a conversation (verbal memory)

• Difficulty recalling an image or a list of words (visual memory)

• Difficulty concentrating

• Difficulty learning new skills

• Short-term memory problems

• Taking longer and having to work harder to complete routine tasks

• Short attention span

• Mental fogginess

• Being unusually disorganized.

• Spatial ability (mentally rotating objects in space): I add this problem to the list, because engineers and technologists will be affected by this symptom in order to function at work.

Not everyone has all the symptoms.

A notable percentage of people who undergo chemotherapy experience some amount of cognitive impairment. Cancer research in the UK (http://www.cancerresearchuk.org/cancer-help/about-cancer/cancer-questions/chemo-brain) show evidence that 17 to 50 percent of women with breast cancer treatment and 47 to 69 percent of men having prostrate cancer treatment have reported chemo brain. Research has indicated that symptoms improve within a year of ending cancer treatment, but for others it is long term. Scientists are also looking into how factors such as stress contribute to cognitive impairment. Another group of researchers is examining why an increase in cytokines, which are proteins made by the body during an immune system response, are higher in people with cancer treatment. They are also researching why the highest cytokine levels are found in patients reporting thought and memory problems.

This is what I have had to do to deal with chemo brain:

• Simplify my life

• No multitasking

• Function using TO DO lists

• Put events on a calendar

• Try to get enough sleep

• Do something physical

• Keep my mind active by writing, doing puzzles, etc.

• Paint and listen to music

• Reminder notes on my iPhone

• Repeat details back to people when arranging to meet with them and write it down.

This truly was one of the hardest blogs I have written, because it has to do with my brain. I like my brain. That is the one organ that has given me opportunities to teach at the largest and best research universities. It has given me meaning to life.

I often wonder if we are faced with all our fears before we kick the bucket. I have been afraid of needles since I was four years old. Two or three doctors in a German hospital tried to hold me down for a shot, after I screamed and gasped when I saw the HUGE needle they were going to use on me. I had just been diagnosed with pneumonia. I fought them off. I remember the IMMENSE Army nurse they called into the room. She wrestled me on the hospital bed and gave me a shot in the gluteus maximus. With a leukemia diagnosis, I am poked and prodded with needles more often than I care to be. I have just learned to deal with it.

Maybe this is another life lesson I will have to learn to deal with – chemo brain. I guess I will have to rely more on my heart, since that seems to be still ticking most days. :-)

Government Shutdown, Your Health, and American Innovation

NIH 7th floor lobby

NIH clinical trial waiting room

This is where I get my chi tea latte.

Main NIH lobby and gift shop

The main National Institutes of Health campus is home to the NIH Clinical Center, which is the largest hospital in the world completely dedicated to clinical research. About 6,000 scientists work in NIH’s Intramural Research laboratories mostly on the NIH campus in Bethesda, Maryland. More than 80% of the budget of NIH goes to innovative federal grants to over 300,000 researchers at over 2,500 American universities and research institutions. Federal grants for university professors and scientists have now been put on hold.

My blood brother George contacted me and was concerned that I would have a problem with my appointment at NIH, because I was scheduled to fly in last week during the beginning of the government shutdown and 75% of the NIH is furloughed or on forced leave. That means 18,646 employees got sent home with no pay. He was worried that I would have no nurse, no medical team, or no cancer drugs.

I went anyway. Wednesday, October 2nd, the NIH campus at Bethesda, Maryland looked like a ghost town. The lobby on the main floor was empty when I came in for my blood work. The café I get my chi tea latte non-fat vente was gated up, and the gift shop had no one working. I went up to the seventh floor lobby and it looked deserted. The waiting room for the clinical trials looked empty for quite a while. The only place on the entire campus that was open was the small second floor lunchroom. I was thankful that my furloughed nurse came in for my appointment and thankfully so did the medical staff.

Because I am enrolled in a clinical trial, I have the good fortune of being treated for the leukemia and having access to my drugs. Not so fortunate are those hundreds of patients finally entering the clinical trials, who are turned away every day at NIH during this government shutdown. In a week’s time there will be 200 sick patients turned away from clinical trials that could save their lives. About 30 of those patients are children with about one-third being children with cancer, according to an NIH spokesman.

This may help to make this point more poignant: 10,000 new patients enroll in clinical trials at NIH each year, because they are usually out of options. They are willing to take their chances with being a little white lab mouse and being exposed to experimental drugs and treatments, because standard medical treatments have failed. Now think about how they must feel being turned away.

I had dinner on Wednesday night with my cousin Sammy, who is an engineer working for NASA, and he just filed for unemployment. NASA has furloughed 17,451 employees leaving 549 working in the international space station and the Mission Control in Houston. HAVEN, a new robotic Mars probe is scheduled to launch November 18^th of this year at Kennedy Space Center. If the deadline is missed, the Earth and Mars will not orbit into the proper alignment again until 2016.

Oh, by the way, my white blood cell count has dropped from 29,000 to 19,000 – heading in the right directions. My platelets are a little lower than they should be, but not to worry at this point.

I am patiently waiting for FDA-approval of ibrutinib, which could save so many lives. I guess I will be waiting a little longer, since FDA just furloughed 45% of its 14,600 employees (6,620).

When I emailed my doctor when I arrived home to tell him about a side effect that I forgot to mention at our appointment, I received this email: