Well, I have figured out being a professional blogger is not in my wheelhouse. But for those you who are subscribed, I wanted to give you an update on situation. I have my next MRI coming up on 9/1 with a readout with my oncologist on 9/3. Everything remains clear and stable with my brain tumor, so I still could not ask for any better news. I have passed the two year mark since diagnosis, and while my oncologist helped me to think beyond the median survival numbers, I am happy to say that I am well beyond the 14 month median survival interval and expect another clear scan in September. I am staying active (COVID-style of course) and my attitude is still positive and hopeful. Reach out if you want (Craig.frost99@gmail.com or 908-448-6068). I hope you are all doing great! Peace be with you and all those you hold dear.
Sunday, August 16, 2020
Sunday, November 24, 2019
Happy Thanksgiving and an Update
Sorry for the time between updates. I’m planning on more regular entries in 2020. You can also follow me on Facebook (I’m the Craig Frost wearing hockey equipment :) ). As we enter the holiday season, I’d like to wish all of you and your families a Happy Thanksgiving.
I had my 9th clear and stable MRI in early November and will have my next MRI on 1/2/20. I will post the results of that scan shortly thereafter. The Optune device remains my only ongoing treatment and I have kept busy attending Optune Ambassador conferences, open houses, and conducting buddy calls for patients that are considering the treatment. I have also been fortunate to share my story during a National Brain Tumor Society fundraising event called Dancing for a Cure that was held in San Jose. No, I did not dance, I left that to the pros. It was a very beautiful event and a great honor. This week, I have been at the Society of Neuro-Oncologists (SNO) conference in Phoenix where I shared my story with doctors and health care providers and manned the Optune booth on the conference floor. Last night, I shared the patient experience with a delegation of neurosurgeons and neuro-oncologists from China, complete with an interpreter. Interesting experience and a reminder that the effort to find a cure is worldwide and that cancer does not discriminate based on any factors.
So, stay healthy, stay present, live in the moment, and hug your dear ones just a bit tighter for me today.
I am so very thankful to all of my family members, friends, and colleagues who have supported me along this journey. May peace, health, and prosperity shine down upon you and all those you hold dear. Peace be with you all.
PS - I will be interviewed on a public radio station (FM 94.1) for a show called Health Matters (I think) on Monday, November 25th from 2 to 3 PM PT. I’m told the broadcast is streamed and the interview will be available in their archives. Tune in if you can and please feel free to provide feedback of all kinds.
I had my 9th clear and stable MRI in early November and will have my next MRI on 1/2/20. I will post the results of that scan shortly thereafter. The Optune device remains my only ongoing treatment and I have kept busy attending Optune Ambassador conferences, open houses, and conducting buddy calls for patients that are considering the treatment. I have also been fortunate to share my story during a National Brain Tumor Society fundraising event called Dancing for a Cure that was held in San Jose. No, I did not dance, I left that to the pros. It was a very beautiful event and a great honor. This week, I have been at the Society of Neuro-Oncologists (SNO) conference in Phoenix where I shared my story with doctors and health care providers and manned the Optune booth on the conference floor. Last night, I shared the patient experience with a delegation of neurosurgeons and neuro-oncologists from China, complete with an interpreter. Interesting experience and a reminder that the effort to find a cure is worldwide and that cancer does not discriminate based on any factors.
So, stay healthy, stay present, live in the moment, and hug your dear ones just a bit tighter for me today.
I am so very thankful to all of my family members, friends, and colleagues who have supported me along this journey. May peace, health, and prosperity shine down upon you and all those you hold dear. Peace be with you all.
PS - I will be interviewed on a public radio station (FM 94.1) for a show called Health Matters (I think) on Monday, November 25th from 2 to 3 PM PT. I’m told the broadcast is streamed and the interview will be available in their archives. Tune in if you can and please feel free to provide feedback of all kinds.
Tuesday, August 6, 2019
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.
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.
Thursday, July 11, 2019
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!
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!
Wednesday, June 19, 2019
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.
Event website: www.brainTumorWalk.org/Bay Area
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.
Event website: www.brainTumorWalk.org/Bay Area
Wednesday, May 22, 2019
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.
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:
If you plan to participate in the walk, please let me know.
Friday, May 10, 2019
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:
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:
If you plan to participate in the walk, please let me know.
Subscribe to:
Posts (Atom)