So this whole tumor thing and the internet sucks. Just google glioblastoma (GBM) and average life span and you might want to start shopping for a casket. I had not spoken to any of my Doctors about my “odds” just because it is a pretty difficult conversation. And I sorta did not want to know. Well we had a great conversation with my Radiation Oncologist Dr Jerry Joboin and he said I am not a typical GBM patient. I have everything positive I can hope for AND it might not be a full blown GBM. That is extremely positive and may indicate we caught it early or during a transformation from a lower grade tumor to the higher grade. He was very encouraging and said I would be a desirable candidate on almost any trial. When you hear your chances are more in the 5-6 year range and that is because the technology has not been around long enough to have results better than that it is a good start. Plus the amount of research and technology is booming so often the best defense is just being around long enough for the next breakthrough to occur. It is very uplifting knowing you have someone in your corner like that. I actually feel like I can look forward to a full life. It is still going to suck most of the time but it is a better start than the data we initially thought.
A quick clarification on Tom’s treatments-The chemo is a pill he will take an hour before the radiation. He will take that pill 7 days a week for 6 weeks for this round.
The radiation is a short visit to the Beaverton campus 5 days a week for 6 weeks where they will target a small area of his brain for 10-15 min with the radiation. He’ll have to get labs done there once a week and we will meet with Dr. Jaboin every Monday after it starts. While we appreciate the offers to sit with him through the treatments, they don’t allow anyone in that radiation room for safety reasons. Thanks everyone for your continued offers of support. We are so lucky to have all of you!
Today we started the all trails challenge. The goal is to hike all 80 miles of trails in Forest Park. We did about a mile of the Wildwood Trail (a popular trail that runs the length of Forest Park for 30 miles) and explored the Oregon Vietnam Veterans Memorial. It was a very pleasant evening for a walk.
The all trails challenge is a fundraiser to help support Forest Park. If you are local think about joining our team – Team Food Baby or donate to the cause. If you are a hasher think about donating a weeks Hash Cash. As you know we run in here all the time. If you have no idea what Forest Park is you probably don’t live here.
Forest Park is a 5200 acre park right in the city of Portland filled with trails and unfortunately invasive species. The Forest Park Conservancy is a local non-profit trying to help protect and restore Forest Park. They have a 20 year plan with a wholistic view integrating Forest Park with the surrounding acreage so wildlife can move throughout the area.
Forest Park is a key contributor to making Portland an amazing place. Help keep it that way. And don’t move here. We are full.
Info on All Trails Challenge: Link
We have a great doctor ( Jerry Jaboin ). He focuses on research and knew about all the latest stuff we have read about on the internet. One comment he made is that not much progress was made on brain tumors a few years back because there was no money for research. That has changed recently and now lots of new developments are starting to happen. He is following clinical trials closely. His specialty is treating Glioblastomas so we feel like we are in the right hands. Plus he is a lot of fun to talk to and as Jessie said, gave us cheese.
I was fitted with a mask to hold my head in place so they can target the tumor area. They can shape the beam now and he feels the tumor was away from all the “vital” stuff so I should have a good treatment with very few side effects.
My first radiation treatment is scheduled for Tuesday next week.
This is NOT my mask but one I found on the internet to show what it looks like. I will see if I can get a picture of mine. I know they took a couple.
I have also made it into a study using a new contrast agent in MRI’s to using Ferumoxytol on Glioblastomas to highlight the cancer cells. Fermoxytol uses iron particles to show up differently in the tumor cells via an MRI. This is important after treatment as the area treated can be swollen and look as a false positive for tumor regrowth. The hope is this new view will give us a more accurate picture of the tumor blood supply and how much actual tumor there is.
And of course it would have been better if I could have had an MRI done with this new agent before surgery but we did not know it was a Glioblastoma before surgery. Everyone thought it was an Oligo and this study is not being used on Oligo’s.
So Wed, Thur, Friday I will have MRI’s done with various contrast agents and then Chemo and Radiation starts Tuesday next week due to 4th of July being on a Monday and delaying my start one day.
So my Fireworks will be a day late this year.
Overall doing well and everyone has been so positive given my age, fitness, and how well the surgery went. I cannot say enough how important it is to stay fit and eat healthy. You never know when you will REALLY need that fitness to kick in. I never would have expected that going to the gym every day would have resulted in me doing so well coping with a brain tumor. Dr Jaboin even made a comment how well a patient he had did as he started a fitness program once he went into radiation therapy and ended up in better shape than he started in. It is never too late to start!
Oh and Jessie and I have started on the Ketogenic Diet. It is supposed to be beneficial to cancer treatment. It goes completely in the opposite direction of what I normally ate as it is much higher in fat but it has a emphasis on vegetables and I can live with that. The bulk of the diet is fat with moderate protein and little to no carbs. I was really eating more protein with moderate carbs and little fat so maybe I will get lucky and die of heart disease in 30 years.
I would be happy with that!
In the race for favorite doc we have a winner! Meet Dr. Jerry Jaboin-the radiation oncologist. https://www.ohsu.edu/xd/health/services/providers/index.cfm?personID=3427
This guy is wicked smart, charismatic and really gives us a lot of confidence in his skill and this treatment. Plus he gave me cheese. Tom and I are going to adopt him. ❤️. Longer update later.
Well the most interesting news was that it was never a different kind of tumor and eventually changed into what I have. Due to the testing they did on it they think it has been a Glioblastoma all along. Also they don’t think I have had it very long. Possibly 3-4 months?
My tumor was considered a grade IV and that is due to the number of cells dividing under the microscope.
So that is the one bad strike, if it morphed from something else then it may be susceptible to treatment for that something else.
What he did say as far as advantages go:
- It does have a MGMT hypermethylation and that makes it more susceptible to treatment.
- My age is an advantage
- The surgery went well and they got a significant portion of the tumor out. (they call that a gross total resection)
- My KPS is good – that is a functional neurologic test that basically says I am a fully functioning adult.
All of that adds up to I should Tolerate treatment well.
As for treatment it will be like this:
- 6 weeks radiation therapy: they will do another MRI to map out the exact location they will radiate. Because the tumors have little tendrils of cells they cannot cut everything out. Cells are always left behind. The radiation blasts the tissue around where the tumor was to try and kill those cells. The radiation is M-F for 6 weeks. Every day I will have to go and have my brain blasted for about 15 minutes or so.
- In addition to the radiation I get 6 weeks of chemo. It is a pill I need to take before the radiation to make the cells more susceptible to the radiation called Temodar or Temozolmide. I take this 7 days a week.
- After the 6 weeks I get a month off to recover.
- After my month off they will scan again and that becomes my new base line. I will continue to get scanned every 3 months after that.
- After my month off I do chemo again where I take a high dose of Temodar for 5 days then have 23 days off. I will continue on that cycle until they decide to take me off. I could be years.
Now for the side effects:
- All the typical ones…
- Fatigue (everything causes fatigue) counter act with exercise.
- Nausea (everything causes nausea) counter act with zofran (i.e anti nausea pills)
- My blood will need to be monitored for a decrease in white blood cells, a decrease in platelets and any allergic reactions.
- I have an increase risk of blood clots in my legs that can move to my lungs
- Increased risk of seizures from the swelling due to radiation treatment.
I have very few real restrictions while on chemo/radiation. Just have to watch out for infections.
This is the standard treatment for these types of tumors since 2005 with good results. If this does not work (and often these things do grow back) they have additional options such as more surgery or some trials. They don’t like to start anyone on trials as they want to make sure the standard treatments work before going onto something else that has not been established yet.
We are going to try the Ketogenic diet as we have read about it as being helpful but the Dr did not feel it would make much of a difference. He felt a good “healthy” diet is what we need with lots of water and exercise.
That is our plan. Jessie liked him (Dr Ambady – from the National Cancer Institute and Johns Hopkins) and she hates all my doctors. He answered our questions quickly and never really stumbled on them. So he appears to know what he is doing. He was not a cheerleader but gave us no cause for concern.
Dr Neuwalt, the head of the department, was not there so we have not met him yet. He has several trials going so we always have those to fall back on.
Do you know what’s incredible??? We have had a visitor everyday since we brought Tom home. Thank you all so much! You have no idea how much it means to us just to have visitors each day. And we LOVE when you bring your kids and pets. The biggest blessing out of this has really been getting to spend so much time with friends and loved ones. Let’s keep it going! I don’t think we have anyone scheduled for this coming Sunday going forward. No need to bring anything except your lovely selves! And since Tom is doing so great, we can definitely come to you!!!
Oncologist is this Wednesday and after discussing with him, we are likely going to go on the Ketogenic diet after this weekend at least for 28 days .It has shown to have good results with those doing chemo and radiation, particularly with brain tumors. It is pretty similar to what we eat already BUT no sugar. So we are going alcohol free after this weekend (Tom is pretty much already there). So maybe hold off on gifts of alcohol until we are drinking celebration beverages when he beats this. This is also why I cut off meal train after this week, but if I feel overwhelmed I will definitely ask! Cooking is one of the ways that Tom and I connect, so we are looking forward to getting back in the kitchen to try some new recipes. Here’s some of the books we are trying out:
The Ketogenic cookbook by Jimmy Moore and Maria Emmerich
Keto in 28 by Michelle Hogan.
If you do want to bring Tom snacks- nitrate free jerky would be a great choice!
Also huge thanks to everyone who has joined Team Food Baby and/or donated. Don’t forget to ask your employer to make a matching donation! We have already raised$1050!!!!!
I’ll be setting up a separate FB group for the walking team so we can plan a kick-off bbq with Juno screening thanks to Katy Moyes’s great idea for team to dress like characters from the movie and maybe plan a fundraiser. I’ll try to get that group together in a day or two. Here’s the link again:
I’ve been trying to upload the pic all day and it’s not working. 4.4 mile flat hike at Dry Creek Falls. (This is where you use your inagination to picture a very happy and healthy looking Tom standing in front of a waterfall with our dear friend Torgy).
Yesterday was a serious blow to our morale when we received the diagnosis of grade IV glioblastoma. The surgeon repeated what he said after the surgery-they got all of it -which actually means 95% or better. It is impossible to get it all, so now we meet with the oncologist and radiologist next week to determine the chemo and radiation he will undergo. Personally whatever # the oncologist gives us next week I don’t really care because we will beat it.
Yesterday was tough but the pity party is over. Last year when I was going through a tough time someone told me, “You are strong.” It became my mantra and helped get me through one of the toughest years of my life to date. Yesterday I shared that mantra with Tom. He is strong, even stronger than I am. WE-everyone reading this now is strong and we will get through this. Tom comes from a line of some of the most stubborn people I have ever encountered (love you Birds!!!). He is going to fight and we need you to fight with us.
Here’s the part where I get selfish-I want this incredible man to live a long life with me. On August 7, 2016 we are participating in the Portland Brain Tumor walk. We would like you to join Team Food baby or consider making a donation. Here’s the link to join.
I spent the morning researching this group and they appear to be legit and use their funds well. Feel free to donate to Knight Cancer institute or any other cause near to your heart. Today is a day where we can start making a difference!