It’s been awhile since our last update on Tom. He has been feeling good and hitting the gym! He had a scan last week and it looked stable! Today we met with his oncologist and planned out the next six months. Tomorrow night he will start chemo again for 5 days and repeat that for 5 days a month for 6 months with scans after each two rounds of chemo. Be sure to wish him a happy birthday on Thursday!

Hi everyone! Tom finished his chemo Tuesday night and radiation yesterday. It was supposed to be Wednesday but the cooling machine broke and he ended up missing his Tuesday radiation. It worked out okay because we got to meet the couple who had been working on the puzzle in the waiting room. They usually worked on it in the mornings and we worked in it in the afternoons and each was wondering who the other puzzler was. They ended up with an afternoon appointment and we got to meet and also see the puzzle completed. Felt like that was a good omen. Tom has a month off now and then will have a new scan and meet with his oncologist again but the current plan is he would then start taking chemo 5 days a month for the next 6 months. His stomach has returned to normal and we celebrated the heck out of Halloween!

Just a quick update! Tom continues to do well with his treatment. The anti-nausea meds still make him uncomfortable/cramping but otherwise his energy, sleep and appetite are all good. Over halfway done with the radiation now! His race went well on Sunday and he had the best cheering section. We are so thankful for our friends that came out! Lots to be thankful for, our friend Frank came and spent time with Tom Tuesday night and brought a delicous stew! We have also been spoiled with delicious soups from Mike Bedney Jr and Kayla Barnes. Thank you all for your love and support! ❤️

Tom wrapped up his first week of treatment (short week). So far energy is good but having some issues with the anti-nausea med he has to take before the chemo. Hopefully we will have that sorted out soon. He is feeling well enough to race tomorrow morning! We will be at PIR and his race starts at 9am!

It has been weird starting this process all over again. Funny the things you remember and the stuff you don’t.

Chemo started last night so this morning was not fun. The Doctors are very concerned with nausea so I am required to take an anti nausea medication prior that causes constipation thus requiring additional meds to alleviate the constipation. Hello cramps and feeling bleh. Going to be working on a solution to that problem seeing how chemo will be continuing for a while.

Radiation was quick and the staff was nice. My mask is not as tight as last time. With only 10 visits this is going to go be done about the time we get into the rhythm of going every day.

Time for some lunch…

Tom will start his radiation on Thursday paired with chemo. Chemo technically starts Wednesday night, he takes the pill before bed. Chemo will be every day for two weeks and radiation will be each weekday, so 10 days. We had a nice weekend. Got lunch with our nephew today and went out for some treats this afternoon/evening. Tom is still contemplating the cyclocross race on 10/20!

Just a brief update. We met with Tom’s radiation oncologist today. We liked him and he handles most of the radiation for recurrence for Providence. Tom’s scan from Friday shows that the LIT procedure was successful and likely had a complete resolution of the tumor but we all agree we should still proceed with radiation and chemo given how aggressive this tumor can be and that this is a recurrence. He will only have to do 10 days of radiation paired with chemo and then will do just chemo cycles for 9-12 months after that. He will get fitted for his radiation mask this week and start late next week or early the week after. Thanks for all your good vibes and prayers. They are appreciated!

We’ve been busy waiting since Tom’s surgery. Waiting for Providence to get it together and get a treatment plan together for Tom. They refused to do it without another MRI but did not have any type of priority scheduling for it. So his MRI is today and we can FINALLY meet with the radiation oncologist next week and them hopefully he will start his chemo and radiation the week after but we have no idea for how long. Tom is feeling good and anxious to exercise hard again. He should be released back to regular activity the week of the 14th as well. He wants to race on 9/20 at Coyote Run, a new course at PIR, he may have just finished his first week of treatment but wants to race anyway. We’ve also been busy living: anniversary dinner(s), planting a tree, hiking, biking slowly, dancing with Zumba celebrities, spending time with friends and a fun Pitbull concert!

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!