Treatment Update

Friends, family and colleagues,

My blood test results reached the values needed for me to take my 12th and final 5 day dose of chemotherapy (Temodar). Night number 1 was last night (Monday, 8/5/19) and things went fine. I will finish Friday night. After that 102nd dose, my treatment will shift to monitoring bi-monthly MRI images and determining any new options based on what is seen therein. Looking forward to an 8th clear and stable scan on 9/3 (review with Neuro-oncologist will be on the 4th or 5th most likely. I continue to feel well, stay active, eat well, and have a positive outlook. I wish all of you peace, health and prosperity for you and all of those you hold dear.

Update as of 7/11/19

After a few week delay waiting for my white blood cells to regenerate again, I have completed 11 of 12 cycles of chemotherapy. Cycle 12 should happen around the end of July/early August. Today, 7/11/19, I received the results from my 7th bi-monthly MRI and I am still clear of any regrowth and everything is considered stable! 7 for 7! FYI, GBM recurs, period. With the bi-monthly MRI schedule, we will find anything concerning at an early stage. There is no remission for GBM, and I have no anxiety about the bugger rearing its ugly head again. When it does, a new plan will be devised to treat it. That could mean back to the operating table for another craniotomy, more radiation, and a different chemo drug. I continue to have complete confidence in my care team, and know I am in good hands medically, and good hands spiritually based on my faith and on the ongoing support I receive from so many of you whom I have been blessed to know.

As for the chemo, the 12 cycles are all I will receive at this point as it has been shown that additional cycles provided no benefit in terms or progression free or overall survival and 12 cycles of essentially fighting off the impact on my blood cell counts is considered to be enough to achieve the full efficacy of the treatment.

So, the plan remains the same: eat well, rest, stay active, and stay positive. Check, check, and check!

Thank you for your support and may peace, health and prosperity rain down upon you now and forever!

Bay Area Brain Tumor Walk with the National Brain Tumor Society (NBTS)

First, a quick update on my treatment. Cycle 11 of 12 of chemo has been delayed while my white blood cells restore to acceptable levels. Hoping for a June 26th start. Next MRI remains scheduled for July 9th with the read out on July 10th.

This Sunday, June 23rd, 2019, I will be joining with thousands of patients, caregivers, and health care providers who have been touched in some way by a brain tumor, to increase awareness and raise funds for critical research to advance related to brain tumors and brain cancer, such as Glioblastoma Multiforme Grade 4 (my particular variety). For more information on the event, please see my last blog post. I am grateful for every donation, prayer, and positive thought that has been made on my behalf and/or for me. Together, we will find a cure!

FYI: NBTS Bay Area Brain Tumor Walk: Team name: Frosty’s GBM Friends.

http://www.braintumorcommunity.org/site/TR?px=3785507&fr_id=3202&pg=personal

Event website: www.brainTumorWalk.org/Bay Area

Scan 6 Update, a prediction, and an important request

On May 14th, I had my sixth bi-monthly MRI scan. And, again, the scan was considered stable and clear meaning there is no sign of tumor regrowth (no cell groupings or new blood vessels to feed any regrowth activity). So, again, I could not ask for better news.

My beloved San Jose Sharks (ice hockey team) were eliminated from the Stanley Cup playoffs by the St. Louis Blues tonight, blowing up my dream of a Sharks vs. Boston Bruins Stanley Cup Final for this season. So, I’ll jump back on the bandwagon of my New England roots and go all in to pull for the Bruins. My prediction: The Bruins hoist the cup at the end of game 6.

On the GBM front, I will be walking with a (currently) small team of people in the Bay Area National Brain Tumor Society walk in San Francisco on June 23rd. This a fundraising and awareness building event that includes a 3 mile walk beginning at Crissy Field in SF. The views of the Golden Gate Bridge will be impressive. If you are able to join me, I would be honored to walk with you. If you cannot attend in person, a donation on behalf of team Frosty’s GBM Friends would certainly be appreciated. For more information about the walk joining my team, and/or donating, please visit this site. Every dollar raised will help the NBTS continue its efforts to find a cure for this difficult ailment, as well as, other brain tumor types that afflict people of all ages, genders, and ethnicities often without any hereditary or other genetic predispositions.

Bay Area BT Walk in June

The walk is on Sunday, June 23 with check in at 8-9:30AM and the walk from 9:30 to 11AM. The start location is Crissy Field in San Francisco (the views of the Golden Gate Bridge will be spectacular). The event ends at 12:30PM and the walking distance is a little over 3 miles. Team name is Frosty’s GBM Friends. To register, join my team, and/or make a donation to the National Brain Tumor Society, please use this link:

http://www.braintumorcommunity.org/site/TR?px=3785507&fr_id=3202&pg=personal

If you plan to participate in the walk, please let me know.

Status Update, Milestones, and Fundraising Walks

Scan #5 remains stable and clear of regrowth/activity! Cycle 9 of 12 of chemo finished. Next MRI will be on May 14th with the readout on May 15th. Peace, health and propserity be with you all!

I celebrated my 1 year from surgery anniversary on Friday, May 3rd and 1 year from diagnosis on May 7th. My spirit remains positive, my diet is healthy and I am staying active playing golf and ice hockey, riding my bike, and working out at the gym. If you have time and are so inclined, please drop me a note about how you and those you hold dear are doing. Thank you all for the love, prayers, positive thoughts and energy, and for your offers of support and help. 

Bay Area BT Walk in June

I am putting together a team (and soliciting donations) for the Bay Area Brain Tumor walk. It would be my honor to have you join me for this fundraising and awareness-building event. The walk is on Sunday, June 23 with check in at 8-9:30AM and the walk from 9:30 to 11AM. The start location is Crissy Field in San Francisco (the views of the Golden Gate Bridge will be spectacular). The event ends at 12:30PM and the walking distance is a little over 3 miles. Team name is Frosty’s GBM Friends. To register, join my team, and/or make a donation to the National Brain Tumor Society, please use this link:

http://www.braintumorcommunity.org/site/TR?px=3785507&fr_id=3202&pg=personal

If you plan to participate in the walk, please let me know.

CSC Hope Walk in May

Cancer Support Community provides education (research developments, alternative or complementary treatments and side effect management, yoga, meditation, crafting, nutrition, etc) and support group services for cancer patients and their caregivers and families. I participate in a Brain Tumor Support group and a general cancer patient support group, both of which have been helpful and completely free of charge. 

It would be my honor to have you join me for this fundraising event. The walk is on Saturday, May 18 with check in at 8:30AM; Opening Ceremony at 9:00AM, Walk begins at 10:00AM and the event ends at noon. The start location is Heather Farms Park in Walnut Creek. The distance is about 3 miles. Team name is “Frosty”. To register for the event and/or to join my team, please use this link:

https://cancersupportcommunityhopewalk.rallybound.org/TeamFrosty

If you plan to participate in the walk, please let me know.

Choices and Decisions (and a little bit on my Faith)

If anyone would have told me I would enjoy my journey with GBMG4 as much as I have, I might have told them they were nuts. But it is true, I have thoroughly enjoyed my journey and hope that in some small way my story can inspire others. A word about “journey”: When it comes to cancer, we hear about a fight and a battle. So far, I know I am in a fight, and battles will need to be fought, but thus far, I have not needed to dig that deeply other than to deal with the emotional aspects of what I can most accurately describe as my journey. Although I do not believe in scorecards, I do know so many who are dealing with other cancers and/or treatment protocols that are more demanding than mine. They are my inspiration and they are warriors!

Along my journey, I have discovered the need to make certain decisions. I offer them here in hopes that others might use them as a checklist if they find themselves in a similar situation. And, by similar, I do not mean an incurable (today) brain cancer; I mean any health related, or life, challenge. Again, and maybe Soapbox 1.5, I look at life through a lens that we all have our crosses to bear. The challenges parenting causes one person are no more or less than the challenges of dealing with a terminal disease. For me to say otherwise would be unfair. I recall the days from not so long ago where the paths my sons are taking/might take were of great concern. There may be no greater challenge today than setting our children on the right path. Likewise, relationships present significant challenges, be they personal or professional. The stress of a job is real, and I have 30 years experience to back that one up. My situation is just different, not bigger or smaller than any of yours. 

Decision 1: Given my uncontrollable diagnosis, what can I do? Well, I cannot change the past, but I can control my future to ensure I am fighting as hard as possible. So, I have started to honor the mind-body-soul connection more than I ever have in my life. (Word to the wise, do not wait on this one.!) So, I changed my diet based on the reading I did. Plant first, lean protein, low to no sugar and white flour, new spices, and hydration focused. (What I should have been doing all along.) I also have essentially given up my favorite beverage, India Pale Ales.) After 20+ years working on my beer belly, I am 30 pounds lighter and am up to a 5 pack in abdominal muscle tone, splitting #5 into #s 5 and 6 will take a bit more time. :) I can (and must) control my activity level and my stress leves. Since diagnosis, I have traveled, skied, played ice hockey, walked miles upon miles, restarted weight training, all while wearing my Optune device and managing ongoing chemo treatments. 

Decision 2: Do I trust my Care Team? Yes, I do. The doctors, nurses, technicians, and pharmaceutical company representatives I have supporting me, deserve the utmost respect and appreciation. I cannot express enough how amazingly competent and supportive they have been, nor how it is only through Christ that they are able to carry out their jobs on a daily basis, not knowing which patient will ascend into heaven on any given day. (I will spare you Soapbox #2: Cancer Cure Conspiracy Theories...for now at least.)

Decision 3: What is my purpose? Got it. God’s plan is for me to have this specific variety of brain cancer. And now that I have it, His plan for me is to advocate for myself, to control what I can control, and to keep the long term in mind: high school and college graduations, careers, marriages, house purchases, grandchildren, flourishing new relationships, and the opportunity to pass along the wisdom I have acquired through God’s grace to my children and the humbling number of friends and colleagues I have been blessed to come to know throughout my life. 

Decision 4: Why me? I have spent no time asking why me, or wishing someone else had gotten this tough version of brain cancer. Many have, and that is also God’s plan. Rather, I find myself asking myself, why NOT me? I am ready to participate in the research for a cure in whatever way I can physically and emotionally sustain. I have also gotten past the point of wondering if I deserved this, given some of the missteps I have made in my life. Rather, I see this journey as a revelation of my true purpose in this world. I have been reminded by a very close friend and his new wife, the forgiveness and salvation we receive as Christians. I’ll admit the practice of my Faith has ebbed and flowed with the events of my life. I needed a reminder that my sins have been forgiven and that , no matter how broken we feel, we are always welcomed by our God. (I know I might be treading into controversial territory, but I have Faith and believe God has a plan for me. I turn myself over to the Holy Trinity, and through this, I am completely at peace with the hand I have been dealt. (I am just trying to figure out if I have been dealt a straight flush, a full house, or pair of deuces I need to bluff my way through to continue playing.)

Decision 5: What attitude will I adopt? 

I had a few days following diagnosis when the reality of my diagnosis made me tell my loved ones that I was just flipping scared. Then, I thought I had a conscious decision to make about the attitude I would carry forward. So, remembering what my oncologist told me, I decided to adopt a positive attitude. Positive that I would beat the numbers, positive that I could be the first person ever cured of this tough ailment. Positive that I want my legacy to be one of hope and reconciliation. So far, I think this decision alone has completed the mind-body-soul circle in the best possible way for me. I have asked myself if I am being delusional and I have concluded that I am not. I know exactly what I am up against, but there always needs to be a first to be cured. So, why not set that as my goal? 

Decision 6: How wil I spend my days?   

I walk a lot. And, while I walk, I talk to the humbling number of friends and colleagues I have been blessed to have in my life. Telling my story, and jumping up on a couple of soapboxes from time to time, keeps me positive and energizes me. While hearing that my attitude and positivity is inspring for some is nice, I realize it is God’s plan for me to impart that feeling to others. I also ensure I follow my treatment protocol to the T, knowing that the longer I can survive this disease, the longer God will work through the very smart and talented scientists in the world to find a cure for those whom He has chosen to endure this ailment. 

I “live every day to its fullest”. My definition of that may be different than that of some of God’s other children. I have a “bucket list” as they say. It does not include jumping out of an airplane or bungee jumping in New Zealand. It does not include traveling to the far corners of the Earth. It includes having positive conversations, showing strength and positivity in the face of potentially daunting statistics, counseling and mentoring, and working to deepen my Faith. And, it includes playing in as many adult hockey tournaments as I can with my hockey mates, and maybe playing golf at a few US Open courses across the country. 

Next up...results of 3/19/19 MRI scan. 

Standard of Care (up to date), Reading and Research

While in the hospital recovering, my oncologist planted the seed that if my tumor turned out to be malignant (i.e., cancer), there was something that they refer to as Standard of Care (SoC) that would be started. Again, she reiterated that I should be careful when researching GBM to not get hung up on the statistics I would see. She said every instance is different, and that I was starting the journey at a good place (good overall health, no other diseases along for the ride, etc.). And, she told me if SoC did not have the results she expected, then we would look into all available clinical trials and alternative approaches. She did a very good job keeping me focused on the long term, regardless of what I would find when I started searching for information via Google.

The start of SoC turned out to be 42 straight days of an orally administered (capsules at night by me wherever I was) chemotherapy named Temodar or TMZ concurrently with 30 doses of precision radiation aimed at the tumor cavity and the remaining cancerous cells in the fingers that the neurosurgeon could not safely remove (my understanding based on the radiation plan/map that my radiation oncologist showed me). I began the 6 week cycle of both on 5/28/18 for the chemo and 5/29/18 for the radiation, completing the cycles on 7/8/18. Some of my best memories of that time are the days (all 30+) I walked down the stairs (in the middle with no need for any handrails) into the radiation clinic for what turned out to be roughly 15 minute sessions. At the bottom of the stairs, every day, I was amazed at how my balance had returned. And, I did my best to share my exuberance with the clinic staff (who, by the way were phenomenal...perhaps more on that later). For radiation, I was fitted with a mask that was used to lock my head down to the table to ensure I was in exactly the correct position for each dosage.

A few weeks after the end of the 6 week cycle, I had my first MRI, and it was very clear/stable! I could not have gotten better news. Since then, I receive an MRI every two months and have switched to a chemo schedule of 5 days of higher dosage TMZ followed by 23 days off, so 28 day cycles, still all orally administered by me at home. Thus far, I have completed 6 chemo cycles and 4 MRIs. All MRIs have been stable, there are no signs of tumor regrowth activity. (I get two MRIs, one without a contrast dye and one with contrast. The contrast image is the one that would show tumor growth, swelling, necrosis (dead cells grouped together) from the radiation (which apparently can occur months after the last dose), or new blood vessel growth (also referred to as angiogenesis) which is a sign the cancer cells are gathering and working together to form a new tumor. So, again, so far, I could not ask for better news.

In July, I also started wearing a device called Optune which was FDA approved as a part of the SoC a couple of years ago. The device consists of a power source connected to transducers placed on my head (pictures and usage experience available if you are interested) which establishes an electromagnetic field in my brain which turns out to slow down the mitosis of the glioma (cancer) cells. So, it is a delay tactic to stall the recurrence of the tumor, which to date, is inevitable. It fits into my goal of delaying the recurrence as long as possible so the crazy-smart scientists can continue their efforts to discover the ultimate cure.

Throughout all of this, I have read many books about diet and cancer prevention. I have adjusted my diet to be plant first, healthy fats, lean protein, and whole grain. I have incorporated much more turmeric/curcumin, cinnamon, and ginger into my meals. I eat very little processed food and consume as little added sugar as possible. I refrain from eating what I call white flour products.

I have read many journal articles and about many clinical trials, also. The science behind the brain, its micro environment, and the challenges of delivering treatment that can cross the blood-brain barrier is fascinating. Over time and in consultation with my NO, I dialed back my research. With nothing to treat following surgery, months of stable scans piling up, and a recurrence that would present a new genetic profile, qualification for any clinical trials was highly unlikely. We agreed to do deep research when we had something to address. Plus, I figured out early on that I could skip the first two paragraphs of any articles or trial descriptions because all that was mentioned there was the dire state of GBM treatment and the median survival times. I only needed to read that once! In my case, we are focused on PFS (Progression Free Survival), monitoring for inevitable recurrence, and then OS (overall survival) which may send me back to the start of the surgery, radiation, chemo protocol and a new clock on PFS.

Update as of 2/27/19: I have had 4 clear/stable MRIs. I have completed round 7 of 12 high dose Temodar cycles. I could not ask for better news and I am grateful for the support of my family, friends and colleagues.

My next MRI will be on March 19th and I will post the results on or just after 3/20 on this blog, so please subscribe if you are able. :)

PS - In case I did not mention this in an earlier post, my tumor was MGMT methylated. This is important because methylated patients tend to respond better to radiation and chemo. That is, more cancer cells are removed via these two treatments when the MGMT genetic marker is methylated. Seems to be true so far for me! I have also had my tumor’s genetic profile assessed. That could be helpful to establish a starting point for clinical trial research upon recurrence, but again, the profile will be different, partly based on the glioma cells’ ability to mutate to hide from the Temodar.

Next up: Choices, Choices, Choices...