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I do not pray for success, I ask for faithfulness.
- Mother Teresa
May 14

Chemotherapy Update

Chemotherapy, Medical Updates 2 Comments »

Sorry I haven’t posted for a while. This has been one of the most difficult weeks we’ve had in a long time. As you may have seen by my prayer request, Rachael threw her back out last Friday. She has slowly gotten better but is just now starting to get back into the swing of things.

Thank God for family and friends. I have said time and time again that at the end of the day what really matters is family and friends. Have you ever really stopped to think about what truly matters in life? Certainly after a diagnosis like this I have had many questions including what really matters. Frankly, we don’t need all the things we have. We are blessed to have a nice home, transportation, food to feed our family, good schools and other essentials that many people in the world just do not have. I still remember when Pastor Rick Warren at Saddleback church in Southern California said “if you have a roof over your head, food in your refrigerator and a checking account you are wealthier than 98% of the world”.  This is a fact.  So when things go sideways, like this week when Rachael was out of commission and I’ve been out of commission in terms of being a major contributor to our household I really try to remember this.

This morning I’m feeling the full effects of the first-round of chemotherapy hitting me.  Up till this point it’s been pretty easy. And by all other accounts I’m doing just fine so I’m very grateful. I’m just extremely tired. Hard to get from place to place, give myself organized, etc. I find that when the chemotherapy starts stacking up my mental acuity is impacted in this adds to the fatigue. Between cognitive endurance and simple physical endurance with the issues I have with shoulder and leg etc. I guess I hit that wall.

But guess what? I have hit so many walls in the last three years fighting brain cancer that I can’t begin to remember them all so this is no different. I have to put 1 foot in front of the other. Sometimes, I just think about my kids and I do it for them – not only to be here but to show them not to give up. Of course they’ll realize this now but they will later and that’s important to me.

I will finish this round, my first-round,  tomorrow and then I’ll have next week off during which I’ll have an MRI.  Then I will begin round two and will keep going from there. The MRI will give us good information as to whether I should stay on my current chemotherapy regimen which is the Avastin every two weeks and Temodar every day for 21 days a month. If the MRI isn’t moving in the right direction we may switch out Temodar another IV-based chemo or perhaps an oral search as VP-16.  As always I’ll post results here. 

We are praying that Rachael will continue to get better. I think it’s been tough for the kids too, particularly Aidan.  He had a real serious talk with me last night and wondered if mom was it be okay he started drawing parallels to the problems I’m having with my shoulder and leg and I could see where he was going. I told him that mom just picked something up and hurt her back a little bit, she’s going to be better and that my shoulder and leg problems are from my brain tumor – that mom doesn’t have one.  A huge look of relief appeared on his face. He said he was fearful something was happening to her.  I felt so much for him.  Just shows how much kids take in and you just dont know how they will process everything.  He’s doing better today!

When you go through deep waters and great trouble, I will be with you. When you go through rivers of difficulty, you will not drown! When you walk through the fire of oppression, you will not be burned up –the flames will not consume you.” Is. 43:2 (LB)

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Apr 22

Treatment Plan

Brain Tumor Treatment, Chemotherapy 1 Comment »

After a long discussion at the Neuroscience Institute this morning, we have decided to go back to Avastin as the staple and use a rotating system of an additional drug month to month that will be switched out potentially – depending upon how I’m doing. For starters I will go back on Temodar. 21 days on, 7 days off with IV Avastin every other week. Temodar can be switched out for VP-16, Carboplatin or a host of other drugs. These are viable options that we think a) strike a good balance between quality of life and length of life, b) provide freedom in making choices to fold in other medications and c) hopefully provides us with a window of time to research and find a trial/treatment that is worthwhile pursuing. Even trials have drawbacks – the most significant of which to as a patient is the acceptance criteria. For me that would mean the trial would have to accept patients who have had:

  1. Recurrent GBM
  2. Previous use of Chemo agents (Temodar, vp-16, etc
  3. Previous Surgeries (including stereotactic radio-surgery such as Gamma Knife)
  4. KPI score +or> X

The problem with some trials is that you lose a lot of your lattitude, meaning you are locked into their guidelines so it’s not exactly all rosey there in the land of drug trials. Some only allow newly diagnosed, or that you cannot augment the trial with other drugs of your choosing for example.

I’ve been through 8 rounds of Temodar but I was on a 7 days on, 7 off regimen. I posted about this back in October, 2007 when I described how those first five days on Temodar went and the routine I developed. Because I’ll be on it a week longer each month, I will only be taking about half the dose. That will help in reducing side effects, mainly upset stomach. I should be able to handle this just fine. It wll be interesting to see if the cumulative effects of treatment come into play at all.

For now that’s it.

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Apr 20

MRI Results – April 20 2010

Medical Updates 7 Comments »

I spoke with my neuro-oncologist last night after leaving a message for her. I always ask for a CD with all of the images and know enough to be dangerous. I certainly know enough to catch certain things and I called her after seeing a particular area that looked like a new tumor.

Two new tumors! Sheesh. Come on now. When it rains it pours. When it pours, get a larger umbrella, right? Still. VERY disheartening and disappointing – Rach and I had a tough night.

There is progression with what was a small area to what is now a lesion measuring 4.5 cm by 3.1 cm by 4.6 cm. Particularly troubling to me is that there is increased involvement of the left corpus callosum. If it jumps to the left hemisphere then I can start having deficits on the right side of my body.

This behavior, not to sound unemotional and all clinical, is typical of an aggressive glioblastoma so we haven’t ever buried our heads in the sand regarding the potential reality here. However, there is a ton of fight here, it’s one day at a time and none of us are ever alone in this.

I personally walk with God. How people go about it is a personal choice. For me God is in the middle of everything – the air we breathe. He decides when it’s time. Until then, each day is a gift to spend time judiciously with my kids, family, friends and doing things that are fun! Next is a new search for trials/treatments for recurrent GBM. Starting back on Avastin in the meantime. Going in tommorow to talk strategy.

Here’s an image of the MRI. I made some notes to point out a few things related to one of the new lesions. Just click the image below to blow it up. The large area is the original tumor site. There is progression as it has recurred and grown in size based on what I know right now. I will have much more concise info tommorow

More to come. Prayers are appreciated – especially for the kids.

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Apr 14

Last Brain Tumor Vaccine Injection

Brain Tumor Treatment, Brain Tumor Vaccines, DCVax No Comments »

On Friday I will use the last dose I have left on the shelf of DCVax, a personalized, experimental vaccine I have been using since last April.  It’s a little unnerving knowing that a vaccine that is with a 10 month recurrence free  has been exhausted. Where a door closes a door opens. This treatment served its purpose and I was very fortunate to have been given the opportunity to be a part of the trial. I have actively been looking at other emerging treatments. In the interim, we will continue to use MRI to monitor and go back to a cocktail of IV+ oral medications. This regimen is not hard to handle for me. It will be no problem.

As difficult as it’s been at times missing my career, this was the best decision I could have ever made given the circumstances. I’m still adapting and I very much miss applying my skills on a daily basis. I miss the most are the people. The people in the culture of the organization I worked for was amazing. On this of course doesn’t compare to what I’m experiencing with my family.

Back to the vaccine – for those that are unfamiliar with DCVax, I’m embedding a post from last year that includes a newspaper article and does a fantastic job at explaining how the vaccine is made and how it battles a brain tumor.

Sacramento Bee Article

Last modified on 2010-03-05 21:37:03 GMT. 13 comments. Top.

041109sacbee1_sizedfrontblog.jpgThe Sacramento Bee article came out today and I was surprised to see it was on the front page – “Cancer vaccine offers hope to family”.  The writer asked me my perspective on what I hoped that this article would achieve and I said a) exposure in the form of hope for brain tumor patients, that they would see that other emerging treatments were becoming available all the time that were showing promising results and b) communicating to brain tumor patients, family members and others touched by this disease that they aren’t alone.  There are others going through this.  Finally, I wanted the Sutter Neuroscience Institute and my medical team to receive as much recognition as possible because they have stood by me and fought every step of the way.

Well, the front page certainly provides that exposure.  I have placed a few thumbnails below to larger blowups of the front page and the second page back on A7.  You can read the entire article online at the Sacramento Bee’s Web Site.

I don’t have much time now but will write more later.  At my next series of shots on the 21st, KCRA, the NBC affiliate here in Sacramento will be there.  I think it’s great this is receiving so much press coverage.

041109sacbee1_sized.jpg  041109sacbee2_sized.jpg 

Image Below:  How DCVax Works

dcvax-model.jpg

Sources:  Northwest Biotherapeutics, The Human Body Atlas, Molecular Cell Biology, McClathy Tribune (Robert Dorrell – rdorrell@sacbee.com)

I will update later when I have more info on the treatment plan and upcoming MRI ( probably next week or two).

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Apr 06

Medical Update

Brain Tumor Treatment 1 Comment »

Vaccine injections went well last week. Next Friday I will use the last dose of the vaccine, called DCVax Brain. The vaccine was made, in part, from my brain tumor tissue that was harvested during my second surgery in 10/08. So I will continue to track this via MRI, go back on some meds that are light on the …bone marrow and keep pressing. Next is finding another emerging treatment. UCSF has a few options and we are looking at some other ways to attack the problem.

It’s really a never-ending search. It’s about getting more time, adjusting to life’s challenges and moving on even when I feel like I’m sliding backwards. Walking up the down escalator as it were.

Through it all, never give up hope!! I’ve had some up and down days  in the last three weeks that haven’t been great mainly due to joint pain on the left side that has resulted from surgery/treatment and some focal seizures.  But I have much to be grateful for. 

Through it all, never give up hope….and never give up.

Hebrews 11:1 (King James Version)
 1Now faith is the substance of things hoped for, the evidence of things not seen.

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Apr 01

Combinatorial Therapy Allows Viruses to Destroy Tumors

Brain Tumor Treatment, Research No Comments »

Web address:
     http://www.sciencedaily.com/releases/2010/04/
     100401173713.htm
  

Combinatorial Therapy Allows Viruses to Destroy Tumors

ScienceDaily (Apr. 1, 2010) — For several years, researchers have been developing a new approach to treating cancer that uses viruses to infect and kill cancer cells while leaving normal cells unharmed. Recent data have indicated that this approach, which is known as oncolytic virotherapy, has potential.

Now, Richard Vile and colleagues, at the Mayo Clinic, Rochester, have found that this approach can be combined with a standard clinical therapy to provide substantial regression and cure of tumors in mice, leading them to suggest that this combinatorial approach could be of tremendous benefit in the clinic.

Tumors that grow to a certain size need to form new blood vessels if they are to continuing growing and spread to other sites. One of the molecules that controls this new blood vessel growth, VEGF, is the target of drugs used to treat several forms of cancer. In this study, the authors found that modulating VEGF signaling, for example by transiently stopping anti-VEGF therapy in mice harboring cancer cells expressing high levels of VEGF, allowed the cells that line tumor blood vessels to be targeted and killed by viruses.

Importantly, as this approach targets the cells lining tumor blood vessels, rather than specific types of tumor cells, the authors suggest that this combinatorial approach to therapy could be used to treat a wide range of cancers.

The research appears in the Journal of Clinical Investigation.

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Apr 01

Targeted Agent Blocked Growth of Deadly Brain Cancer in Preclinical Studies

Research No Comments »

Web address:
     http://www.sciencedaily.com/releases/2010/03/
     100330142426.htm
  

Targeted Agent Blocked Growth of Deadly Brain Cancer in Preclinical Studies

ScienceDaily (Mar. 31, 2010) — A drug already in clinical trials to treat a variety of tumors shows a remarkable ability to shut down growth of glioblastoma in both laboratory cells and in animals, say researchers from Georgetown Lombardi Comprehensive Cancer Center and the University of California, San Francisco (UCSF). In their experiments, the agent put a brake on growth of laboratory cancer cell lines, and no mice with glioblastoma in their brain died as a result of their tumor while on therapy.

They say their findings, reported in the April 15 issue of Cancer Research, provides hope that the drug, PD-0332991, could offer a new treatment option for glioblastoma, which is the most common as well as the deadliest form of brain cancer. A clinical trial testing the therapy in patients with recurrent brain cancer is under development.

“We have had just amazing results in these preclinical studies,” says Todd Waldman, MD, PhD, an associate professor of oncology at Lombardi. “We are hopeful it will prove to be effective in brain cancer patients for which there is little effective therapy.”

Waldman is the study’s co-lead investigator, along with C. David James, PhD, professor of neurological surgery at UCSF. “What is especially encouraging about this agent is that we found it can easily pass through the blood-brain barrier and access glioblastoma, and that there is already a simple test available for screening glioblastoma patients in advance to see whether or not they should be responsive to this therapy,” James says.

Given the molecular data from a recently published study by The Cancer Genome Atlas Research Network, about 90 percent of glioblastoma patients have a molecular profile that would make them candidates for the drug, the researchers say.

The drug is currently being tested in clinical trials for otherwise untreatable teratomas, as well as multiple myeloma and breast cancer. It is designed to shut down the activity of molecules, cyclin-dependent kinases 4 and 6 (cdk4/6), that drive cell division. “In normal cells, these kinases are kept under exquisite control by a gene known as p16,” says Waldman. “But in glioblastoma, and other cancers, p16 is frequently deleted, and these two kinases are uncontrollably activated, which drives the cell to divide and form cancer.”

The agent, however, does not work if the cancer is missing expression of a tumor suppressor protein known as retinoblastoma (Rb) because Rb is needed to control growth in these cells even if cdk4/6 are inhibited. A test to determine if RB is present is already being used to screen patients for use of PD-0332991 in the ongoing clinical trials.

A research team at Georgetown led by Waldman, conducted laboratory studies on 21 different cell lines derived from the tumors of patients with glioblastoma. They tested PD-0332991 at various concentrations to see if it could stop growth of the cancer cells, and found it to be effective in all 16 cell lines with a functioning Rb gene, but it did not work in 5 cell lines missing Rb. “The agent was very potent in stopping cancer growth, but it was also quite clean in that it only seemed to inhibit the two molecules it targeted, and no other,” says Waldman. “Most drugs are dirtier than that — they hit multiple unintended targets.”

What intrigues Waldman, he says, is that no one has discovered what the “normal” function for cdk4/6 is. “Mice lacking either cdk4 or cdk6 grow up to be relatively healthy, so it may be that these kinases are really only important for cancer growth,” Waldman says. “That would be an exciting development, if true, but no one knows yet.”

James led a team of scientists at UCSF that implanted three different kinds of human glioblastoma directly into the brains of mice, and then they treated them with PD-0332991. They discovered first that the agent effectively reached intracranial tumors — “and it wasn’t known beforehand that it would, so this was very good news,” says James — and that the cancer did not grow as long as the mice continued on the drug, but that they quickly died from the cancer when the agent was withdrawn.

Because PD-0332991 itself does not kill cancer cells — just arrests their growth — the researchers then combined the agent with radiation and found that outcomes were superior to use of PD-0332991 alone. They further successfully tested the agent in mice in which glioblastoma had come back after treatment with temozolomide, a chemotherapy that is the standard-of-care for many patients.

“We don’t know how well this agent will perform in patients with glioblastoma, but in the mice we studied, we saw very impressive, durable effect that was sustained as long as therapy was administered,” says James.

The study was funded in part by grants from the National Institutes of Health and the American Cancer Society. Pfizer Global Research and Development supplied PD-0332991, and a researcher from that company also participated in the study.

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Mar 28

Healthcare Conundrum

Press 2 Comments »

This situation is the heart-breaking reality of today’s state of affairs with regard to healthcare. She has the same tumor I have – a GBM. It kills. Most times quickly. I can’t imagine using a treatment modality that has been effective only to have it pulled because of some beaurocratic, arbitrary rule.  I have had a cocktail of drugs and an experimental… treatment. I had stability on DCVax, a brain tumor vaccine and temodar but most have failed. This is unconscionable.

I think many of us in America aren’t happy with what has happened over the past several weeks in Washington D.C..  All we can do is look to God and know with complete faith and abandon that  He is the rudder.  We have too many God-given skills and knowledge as a people, coupled with compassion and an instinctual need to save lives, for politicians to destroy the human spirit’s drive for sucessfully treating people, performing research and driving for a cure.

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