We got the pathology report on Friday. It’s missing a few things that we should have in the next week or so but there was enough info to move forward and meet up with his oncologist earlier than planned, so we met with him today. It’s odd to pray for a genetic mutation, but we had been hoping that the sample would contain the IDH1 mutation that his prior tumor had which made it susceptible to chemo and thankfully it does have that again. It appears that it is very genetically similar to his last tumor. Therefore his oncologist has proposed the same treatment as before, radiation and chemo. He will also likely wear the Optune device again when he finishes radiation. He would also continue the chemo cycles he did before likely 9 mos to a year post radiation.

The chemo that Tom would take is Temodar, it comes in pill form and is shown to be effective used in conjunction with radiation and again the IDH1 mutation makes it more susceptible.

We also learned something new. They continually change the classifications of these tumors as they learn more about them and right now genetics drives the classifications. Because Tom has this IDH1 mutation, they now classify tumors with that mutation as astrocytoma grade 4. It’s still genetically the same tumor he had before, but a different name and also carries a higher median survival rate, moving from median 18 mos to 3 years. We all know Tom will be an outlier again and while it seems like we have a long road ahead, Tom is healthier than last time and doesn’t have the heavy surgery recovery and vertigo he had last time.

Finally, there is one additional drug that may be an option because of the IDH1 mutation. It has had good success and was just approved by the FDA for grade 1 and grade 2 tumors last month: vorasidenib.

We hope to get going with the chemo and radiation as soon as possible. Ideally we will meet with our new radiation oncologist next week, get their treatment plan (radiation would be either 3 or 6 weeks long) and get started.

This is still somewhat hard for both of us to reconcile as Tom is doing so well physically and has no symptoms. We are doing our best to keep him active at a heart rate of 120 or less until his surgeon clears him in 3 more weeks.

As always, thanks to all of you who have shown support and reached out.

Had two week post surgery follow up today. Incision and healing is good there, still want me to restrict activity for another 4 weeks. At least I can get back on the trainer if I keep my heart rate low. They don’t want any increased activity or pressure in the area trying to heal. Any high intensity activity will do that and could cause additional problems. AND no weight training ☹

So low and slow HR training for me.

First race goal will be Cross Crusade – Coyote Run!

Hey y’all. Just wanted to post an update since we are getting inundated with texts 🤣. No news is good news. Tom is doing very well one week post op. He is restless from the lack of exercise. We will be waiting a few more weeks for the pathology and will know his treatment then. We are so lucky to have so many people looking out for us. Thank you!❤️

Finally got around to getting a picture up. As you can see much smaller than before and in the resection pocket. From what I understand, it was a straight shot right into the tumor so not other brain tissue to go through. Still feeling great, minimally invasive was true!

We’ve had Tom home for about 24 hours and everything is going really well! He does not have any pain and is already frustrated by his activity restrictions. We are thrilled with how much easier this part has been than last time! He is okay for visitors and if you come by don’t feel pressured to bring food or anything other than your walking shoes as he may want a walk!

Huge thanks to Torgy for meeting me yesterday with a latte and food the second they took Tom away 🥹. Suzanne came by too and the time flew by with the good company I had with me. Thank you both!

What’s next? We have two weeks (no strenuous activity!!! Tom are you reading this part???) until his follow-up appointment but that is just surgical and we likely won’t have any news on the pathology yet. He is on steroids for 10 days and anti-seizure medication for a week. Once they have the genotyping done on his tumor we can discuss treatment options. Likely this will involve immunotherapy but could also involve other things like more chemo and radiation, perhaps the return of the new and improved Optune he wore 8 years ago. He also told me he still wants to race the Cross Crusade series again this year!

If you want to read more about the pathology they are doing, this is a great article!

Q&A with a Pathologist (Part One): Keith Ligon, MD, PhD

Thanks for all your messages of support!

Brain Surgery at 8:30, going home at 3:30. Modern medicine is amazing. Oh, and staff are Providence StV is awesome.

Tom’s surgery is complete. All went well! He should be awake in 45 min to 1 hour.

Hi everyone! Just waiting for Tom’s surgery to start! We keep getting requests on how folks can help. We love food! Here is our meal train:

https://www.mealtrain.com/trains/872191

We got a call today that Tom’a surgery was moved up to this Thursday morning(!). We are almost ready but still a little shocking. Tom is happy because now he won’t have to fast for 16 hours and we are optimistic with an early am surgery he won’t be kept overnight. Stay tuned.

On August 15, 2024 Tom had his three month MRI and it revealed a 1.2 cm mass at the site of his original brain tumor. This mass was not detectable at his previous scan in May. It is his doctors’ professional opinion that this is a recurrence of his glioblastoma (GBM) brain tumor and they are united in their advice that we remove it as soon as possible. 

His oncologist is recommending a LITT procedure. From Mdanderson.com:

“Laser interstitial thermal therapy (LITT) is an emerging technique to treat primary and metastatic brain tumors that can be hard to reach with conventional surgery. LITT is performed by implanting a laser catheter into the tumor and heating it to temperatures high enough to kill the tumor.

The catheter is implanted using advanced computer imaging techniques. The laser is guided through the catheter with real-time MRI, allowing neurosurgeons to limit thermal energy delivery only to the tumor. Most patients can go home the day after treatment and can quickly return to normal activities.

Laser interstitial thermal therapy is minimally invasive. It typically requires only a 2-millimeter incision in the scalp, and takes only a few minutes to perform.”

You can read a lot more about the procedure and its other applications here:

https://www.hopkinsmedicine.org/health/treatment-tests-and-therapies/laser-interstitial-thermal-therapy

On Wednesday 8/21 we met with a surgeon through the Oregon Clinic (inside Providence St. Vincent clinic) who will perform the procedure. Today we received a confirmed surgery date of Friday 8/30. His surgeon is experienced and works closely with Tom’s oncologist. We love that this will be lower risk and a lot less invasive than the craniotomy that Tom underwent 8 years ago. At most we expect an overnight in the hospital and a quick return to normal activity. His surgeon shared that he typically does more complicated procedures and Tom’s tumor placement is in an easy spot and has a good round margin. His scan last week showed that the tumor is not collecting a lot of blood at this time which is a favorable indicator. At the same time of the laser procedure, they will also take a biopsy of the tumor for testing. We need to confirm what type of tumor it is and what genetic markers it had. 

In 2016, Tom’s tumor had the IDH mutation and was MGMT methylated which made it more receptive to treatment, particularly chemo. We are hopeful that if it is the same tumor it will also have these same treatment receptive markers. Since 2016, additional genetic markers receptive to treatment have been identified and we hope to see if Tom has any of these additional markers that will help him fight the tumor. Doing this particular procedure will also help breach the blood barrier in his brain, allowing potential treatment. We are considering immunotherapy if we can get it in time to be effective prior to his surgery. It may also be considered after. There is no standard treatment for a recurring GBM, so options could include more chemo and radiation, Optune, immunotherapy or other drugs and trials pending what we find with the pathology. 

As you may recall Tom’s neuro oncology team moved from OHSU to Providence a few years ago. We have reached out to OHSU as a second consult because Tom’s original surgeon is still there but we have not been able to get a date to meet with him until about another two weeks. It would be our hope that Tom will have already undergone his surgery at Providence by then or shortly after. We feel very confident in this plan to move forward without the second consult given the urgency of addressing this. We have also adopted Dr. Jerry, Gauri and their kids into our family. Despite their move to Oklahoma we keep in touch and Dr. Jerry has been in regular contact with us since we first got the news and always provides his valuable feedback. He likes and supports our plan. 

It’s important to note that this tumor was caught early and was asymptomatic like last time. It is much smaller than it was 8 years ago and not in a critical area of the brain. We expect a great surgical outcome. Tom is in better health than he was 8 years ago. We have a strong team of providers around us. There are more treatment options and better technology. It is hard and shocking to be back here again, but we remain optimistic. Fighting this disease has been a marathon, but at times like now we must sprint. We are thankful our team of providers is treating it with the urgency it deserves. We all know that Tom is special, an outlier. He has defied the statistics before and we believe he can do it again.

Thanks for your love and support,

Jess and Tom