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:

Day of Celebration for Dr. Matt

I have chosen to play my cancer card in the transparency of an Internet blog – accessible to anyone in the world. Was this a good decision for me or not?

There are days that this decision has cost me unnecessary stress, when desperate people believe that I can cure their loved one because I happen to have a blog on leukemia. When I explain to them that I am a cancer patient in a clinical trial, trying to share my experience with others, so that other patients can become more informed about the decisions in their life, it does not always matter. When I explain to them that YES, I have a doctoral degree – a Ph.D., not an M.D. -- so I can help with cerebral research matters, not medical matters, it does not seem to matter to them. My heart goes out to them.

This, however, is a good day. I am dedicating today as a celebration day for my blood brother Dr. Matt, who is also 17p deleted – the poor prognosis guys and gals. After one year on ibrutinib, his white blood count remains in the normal range, and his bone marrow biopsy shows no evidence of cancer. The flow cytometry blood test indicates that leukemic-type cells in the blood stream have gone from 100% to 2.4%. So he is as close to remission as he can be. He is “happier than a pig in slop” (his words). LOL. I celebrate his life!

My Dog Mac

If you are one of those people who has never had a pet or loved an animal, this is probably a posting you can skip. For all the others, especially cancer patients with pets, you will understand.

MacGregor -- or “Mac” as we fondly call him -- is my dog. He is a rescue Westie and was supposed to be unadoptable for several reasons. He was at least 10 years old, wasn’t housebroken, and apparently did not relate well to people – at least that is how the story goes. He had been left in a kennel for six months. His owners had gone to assisted living. Apparently the dog belonged to the husband, who was a banjo player. Mac wasn’t into female owners. Mac had stitches running diagonally across his belly from when he was attacked by an Australian Shepherd. He would not make eye contact. He was not a trusting dog.

I had several colleagues at the veterinary school at Purdue University. They found Mac and his longtime friend -- an 8-year-old Bichon Frise named “Buttons,” who used to belong to the wife. I agreed to “test drive” (dog sit) both dogs during the Christmas break in 2008. Buttons was definitely a lap dog and quite friendly. Mac was a grump. Carl was not too happy about the dog-sitting situation, but he could see that I was determined to care for the dogs and that was that.

First task completed… Both dogs were housebroken in two weeks – even in the freezing Indiana snow. I was a professor at Purdue University at the time. That’s the only reason I would be living in snow.

As time went on, I noticed that Mac began to quietly growl under his breath at Buttons, when Buttons would jump in my lap. Mac would then scoot closer and closer to me on the sofa. He still was not making eye contact or letting anyone touch his ears or belly.

By the time Carl and I went to our Midyear Conference in California in January, I decided that I wanted to adopt both dogs. Carl was still not over losing our Corgie Sophie and said, “No.” So I negotiated for one dog instead of two. He said I tricked him. LOL. “Which one do you want?” Carl asked. “I want the Westie,” I said. He looked surprised. “That ugly, grumpy dog with the stitches and bloody ears?! No one would want him!” “Exactly!” I said. “That is why I want him,” I replied. And that was that.

Buttons went off to a great home in Chicago to live with the father and sister of my friend Judy. He is happy as pie.

When I was diagnosed with leukemia, I was very fatigued. I remember lying on my back on the sofa and not feeling well. When I woke up, Mac had climbed up on the sofa and was lying on me with his belly touching my torso and his head under my chin. Ever since then he followed me everywhere. I could not even go to the bathroom without him waiting outside the door. We were friends for life. And that was that.

Last Monday Carl and I were packing and getting ready for our vacation in the White Mountains. Part of the ritual was dropping Mac off at the vet’s boarding facility Monday late afternoon. The alarm was set for 5 a.m. on Tuesday, so that Carl could make his golf tee time. The fishing poles and gear were ready for some trout catching.

I woke up suddenly at 4 a.m. with a bad feeling in the pit of my stomach. For some reason, I started to cry. I was worried about Mac. I asked Carl if he would be terribly upset if I did not go, because I had to get my dog. This was not like me. Carl was surprisingly understanding, even though he probably thought it was strange.

I waited for the vet’s door to open, and I asked to take Mac out of boarding. They looked a little surprised at my request. I wanted the vet to take a look at him. The vet felt a lump in his belly. The x-rays showed that Mac had recently swallowed 50 stones (30 in his belly and the rest in his intestines). The vet said he was too old for surgery. The only chance he had was to get rid of the stones. I spent the last three days and nights helping him expel the stones from both ends. We were exhausted.

By Thursday the last one came out. Mac was a tough dog, but the ordeal was too much for his old body. I wrapped him in a towel and rocked him. Mac passed away on Friday with me petting his beautiful head and body. Such a truly loyal and faithful friend. May you rest in peace, you old grumpy sweet boy. I will forever be grateful for all the love and happiness you brought to my life. You will be missed more than you know.

Love & Gratitude,

Your MaMa

One year on ibrutinib

Carl and I recently returned from NIH on the East Coast. The highlight is always being able to have dinner with my cousin Sam. This time we managed to also squeeze in a pancake breakfast. He works for NASA and has decided to retire in a year or two to Arizona. Sam, Carl, and I are very close, so it will be wonderful having more family close by. The three of us took some time to go to the Hungarian Festival for a little R&R. We saw George at the hotel (one of my blood brothers, who started the trial the same day). We missed seeing Matt. :-(

I cannot believe it has been a year since I entered the clinical trial with the experimental drug ibrutinib. My visit to NIH began with donating 17 viles of blood to Count Dracula, the lab technician. The good news is that my white blood count has decreased from 35,000 to a little over 29,000 (approximately 4,000 to 10,000 is normal). This is where I was five months after I was diagnosed. I am moving slowly, but headed in the right direction. I would be thrilled to be normalized.

I was then pumped full of radioactive juice so that my insides could be viewed by the medical team. My lymph nodes have not increased and I have remained the same since last January. This is also good news.

If you recall, last time I had a bone marrow biopsy I was wheeled off in a wheel chair. I could not walk due to the fact that I was stabbed five times with the Lidocaine, because my nerves kept feeling the needle. My bone marrow biopsy went better this time. Thank God for that one. I walked off the operating table on my own. I will not get the results of the bone marrow biopsy for several weeks. As soon as I do, I will post the results.

There are only a few side effects I reported.

1. The first is that the fatigue has returned the past few months. Rats! Sometimes the fatigue is more like complete exhaustion. Yesterday I took a 4.5 hour nap. I am hoping this will ease up. The medical team said they may have to take me off the drug for several months, if this continues. This freaks me out a little. I am keeping a journal for them.

2. The second side effect is my brittle nails. I have always worked with my hands, so I never had the luxury of having girlie–girl nails, so that is not a big thing for me. It is just a little annoying. The doctors suggested I take biotin.

3. The third side effect is sort of a silver lining one. My hair has changed texture. It used to be straight with no body. Now it has curl and body. I can’t wear a bob cut without using a flat iron! Amazing! Apparently, I am not the only one who has this side effect. I am not complaining about this one. LOL.

I have also signed up for another clinical study to help Dr. Richard Childs and Dr. Adrian Wiestner at NIH. This just involves donating my blood, bone marrow, tissue, etc. for further genetic research. This will help me get more scientific information to help me understand my situation.

I just got through reading Dr. Wiestner’s paper on the clinical study that was presented at a conference and found out that two people in our trial have died, but thankfully not from the experimental cancer treatment. Looks like they had problems with infections. I can’t let things like that get me down. I don’t have time to wallow in the mire and waste my time belly-aching.

My family and friends keep me excited about living. My son-in-law Steve is in Africa now and will be bringing home Ian, a new son. He just turned two years old and he is blind. I am excited about meeting him.

My son Rocky just completed another marathon in Portland. That makes two marathons in four weeks. Crazy! My daughter-in-law Elizabeth, who is five months pregnant, walked a total of eight miles to meet him at his milestones. What animals! It puts a smile on my face.

Love and Gratitude to my marathon runners and Man-of-the-Year

I need to take the time to send a ton of love and gratitude to three young men in my life: my son Rocky, and his childhood friends Tyler Breskin and Adrian Gastelum. They did a ton of fundraising for leukemia and lymphoma research the past few months. 

Rocky and Tyler ran the San Diego Rock’n’Roll Marathon on Team La Verne, and were third place and eleventh place respectively in the United States in fundraising. Rocky and Tyler dedicated their efforts in honor of me.

Adrian just got second place last night for Phoenix Man-of-the Year raising funding for research. Adrian dedicated his fundraising in honor of his brother, who died of leukemia, and me. Wonderful, wonderful men.

Tyler and Rocky at the finish line.

Adrian