Hi all,
Had a couple people ask how I am doing and haven't really talked about it too much. Was diagnosed early November with a very aggresive brain cancer. Initially the doctors thought it was Glioblastoma, but is actually Gliosarcoma.
Surgeons were able to remove the tumor from my brain. Currently have 4 more days of radiation and chemo. After the chemo and radiation, the doctors want me to wear a device called "Optune". Little hesistant to use it at this point since it's 18 hours a day and would seem like it would take away my quality of life.
I will just quote my wife with her words that are much more detailed.
Thank you all that reached out!
"Hi Friends and Family,
I just wanted to give an update and would like all of you to keep the thoughts and prayers coming! We will take everyone we get! Thank you so much to everyone who is keeping us in mind during this time. We are beyond thankful for all the constant love, messages, prayers, donations, and support! I’ve posted some pictures of our good days this past month!
We have had some bumps in the road with Tyler's treatment. Thankfully nothing serious other than a few viruses, expected treatment side effects, and a bad sinus infection that ended us in the ER. He is in the peak of the treatment series and hopefully we have already seen the worst it will do. Overall, he has been tolerating the chemo and radiation quite well considering everything. We are definitely on a roller coaster with symptoms, emotions, and trying to keep the routine as normal as we can for Preston and Levi.
We met with three of his doctors this week, and are being told that he should be finished with the first round of treatment the first week of February. He will have some extra radiation treatments to really target the area due to the sarcoma part of the diagnosis. After a few days of downtime, he will begin the Optune device. He is going to give it a try and then determine if it is the best course of action. He will also continue chemo for the next six months and most likely the next year with the cycle of 23 days off and then go on a double dose of chemo for five days in a row. This cycle will keep repeating as long as he can tolerate it. The goal will be to keep the cancer cells under control from dividing and multiplying.
We have been doing a ton of research, dietary changes, and constantly trying to remain as optimistic as we can. Teladoc, my extra educator insurance has been truly amazing, prompt, and attentive to Tyler’s case. They have sent all of Tyler’s medical records to a panel of experts at Harvard. I just received a phone call a few days ago that his pathology is being retested at Massachusetts General Hospital. We just received his DNA Caris report on Monday which also showed us which clinical trials he would respond well to. Since his diagnosis is extremely rare, they are making an effort to get this second opinion completed as soon as possible. Once the results are back, Teladoc will then identify the best doctor and facility in the United States who has experience treating Gliosarcoma.
I have been attending the San Diego Brain Tumor Foundation support groups. I have found this to be very informative and supportive. I found out a few days ago that there is a facility in Arizona that is willing to give us a third opinion once we get the results back from Harvard.
I feel like we are in good hands and that he is being well taken care of with his doctors from Kaiser and UCSD. He’s become good friends with the radiation doctors and nurses at UCSD in La Jolla and during his daily treatments, they have his favorite band playing in the room so he can rock out to Tool!
We have a few more weeks left, and I would like all of you to please keep us in your thoughts and prayers. Since 11/6/23, it has been a blur and completely overwhelming. We are holding on to hope that he will get through the rest of treatment with no more bumps in the road, so we can get back to some normalcy soon. This road has been rough but we are holding on! I am so beyond thankful and grateful for our army of support!
Love Desirae, Tyler, Preston and Levi"
Keep up the treatments and good luck!
Damn 229… that’s a tough reality you’re battling and damn sorry to hear it! Sending all the positive vibes, good thoughts & prayers your way! Cancer is an absolute shit sandwich that needs to be eradicated from the face of the earth sooner than later!
Keep fighting and KICK CANCER’s ASS! 🫡 🙏 👍❗️
PM sent Tyler.
I’ll be praying for you. So sorry to hear about this. Stay strong!
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Thank you everybody! Had to do a few extra treatments due to the sarcoma being more resistant to radiation. But made it through 7 weeks!!
Congrats man! I don't know if Darin still works there but he's the best spinal tap guy ever and pretty sure you've had many! Here's to better days!
TM
Wishing the best
Holy shit! That mask looks familiar. Too familiar. It's what they used to hold my head still when I was getting radiation on my throat.
Don't mean to make this about me but It kind of hit home. Please keep us up to date.
Better days ahead Tyler.
Glad to see you in good spirits.
Keep in touch and, don’t be a stranger. 👊🏼
Good luck! I wish the best for you!
After seeing your pictures, I have to say, it takes a strong person to face adversity with dignity and grace.
I hope when it’s my turn, I can be as strong as you.
Same.... Just finished my 1st week of Chemo & Radiation. Hope you are doing ok.
I don't personally know you, Yz229, but sending prayers for a positive outcome. I'm just getting started on my treatments. One week down, 6 more to go. Mine is squamous cell carcinoma. Keep us posted and PM me if you ever want to talk.
Thanks! Not sure who Darin is, I was going to the Moore cancer center.
I think it's probably the same thing. My neighbor had throat cancer as well and was telling me about the mask he wore. How are you doing now?
Thanks, Gworm. It's a tough battle for sure. Luckily, I have an amazing wife and a lot of support from friends and family. My doctor told me I've handled this extremely well so far and want's me to go back to work in about a month. Not sure if I'm ready yet...I can still feel my brain sizzling a bit from radiation, it's a strange feeling. Also missing 1/8th of my brain, so that explains a lot
But I will make it work.
You got this!! Where are you getting treatment at? Let me know how it goes. Praying for you!!
Darin was one of the PAs that did the spinal taps at Moore's. Maybe I'm wrong, I just figured you've had a few to get the chemo up to the brain. I've had my share. Glad to hear you're done and doing well.
TM
Pit Row
I gotcha. Never had a spinal tap, I'm taking a chemo called Temozolomide and it's just a pill form. Starting a double dose of it a couple weeks, so will see how that goes.
I'm getting treatments @ the Mayo Clinic / Cancer Research Hospital in Jacksonville, FL. So Far, so good. Mid 2nd week, starting to feel some of the side effects of the radiation and chemo. Dr's seem to think I'll be good to go after all of the treatments. Thanks for the prayers, I'll take all I can get!
Prayers coming your way from TM
How are you hanging in there? Hopefully everything is still going well for you!
Little update for everyone -
2 days after the 66Gy total of radiation, my wife and I flew out from San Diego to Miami for a Royal Carribean cruise! It was fun even though the weather was not cooperating at all. We went to Coco Cay and the Bahamas! Although they evacuated Coco Cay due to 70 knot winds and 20 feet sweels. It was a fun ride
Been feeling very tired lately, not sure if it's because my wife told me to rest and have become super lathergic or it is actually because my brain is still very irradiated. I'm actually still losing hair on the other side of my head now. I told me doctor that it feels like my brain is inside a pressure cooker. I was doing carnivore diet, which I am a huge advocate for a long with a lot of excersice but have been spiraling down a path from a slight depression most likely due to the gravity of the situation. Average life span of someone diagnosed with what I have is 11-18 months. Pretty grimm, but I already told my self that I am a special unicorn and already made the choice for my 2 little boys and wife I will live forever for them.
My doctor also said he has never seen anyone recover from something as severe as Glioblastoma or even Sarcoma (which is impossibly rare it seems) and already is pushing me to go back to work on March 14th. I will need to push back on that since I've been feeling "irradiated" and I started a double dose of chemotherapy in a few days AND I start wearing "Optune".
But enough rambling,
Prayers to anyone living with cancer. I really do believe mindset will beat it everyime. There are ups and downs just like life itself, but stay positive, do what you can to stay healthy and surround yourself with the people that matter most to you.
"I really do believe mindset will beat it everyime"
lost my 34y old brother to the big C, and no, mindset doesn't always win. but I appreciate your positive comments and direction you're taking in life, amigo. Godspeed.
I'm hanging in there... been some tough days. 3 weeks down, 3 more to go. Everything is going the way they said it would... the more treatments of radiation & chemo, the worse I would feel. My biggest concern is being able to keep the weight on. I've lost 20+ pounds over the last couple of weeks. Dr.'s want me to "put on weight", but that's nearly impossible when it feels like you have an acetylene torch in your throat every time you try and swallow. And no taste buds anymore doesn't help either. Nausea from the chemo just exacerbates the problem. Even drinking water is a chore. And I'm supposed to stay super hydrated so my kidneys don't start shutting down. White blood cell count is low, so now I have limited contact with friends and family due to immune system is weak. Fatigue has set in on me as well, mostly due to not eating and limited movement. We got into a place on the Mayo Clinic campus called Hope Lodge, funded by the American Cancer Society. At least now I don't have to drive 1.5 hrs one way to Jacksonville every day.
Keep fighting Yz229! I know it can be hard. Sounds like you have a great support system, they will get you through it. My awesome wife has been my rock, sounds like yours is too. Sorry your cruise wasn't as good as you had hoped... It's good to get away from it all and try to enjoy a normal life, even for a little while. Prayers to you and your family.
Sorry to hear 229, but you got to keep fighting. Strength and prayers to you and we are all pulling for you to kick this things ass properly.
Well my neuroncologist said I would succumb to this disease a few months back and to just enjoy the time I have. I told him I don't need his negativity.
Got results of my MRI post 7 weeks radiation 5/23 TMZ, everything looks great! Scar tissue and radiation is minimal and getting better. Zero signs of tumor after 4 months. Considering most don't survive beyond 11-18 months for GBM and my GS could be worse, doing very well!
Positive energy, exercise, fasting, carnivore diet. Stay beast mode
Thank you all for the prayers, it really helps!
hey 229 - I don't want to misunderstand, but did your MD tell you to go home and "enjoy your time" or were your results great and there's no sign of tumor. Your statement was kinda confusing to me and I just wanted to really understand. Hope you're hanging in there...it's all a rough road.
He said I would succumb to this a long time ago. I should have clarified. Results came in yesterday and look very good.
Give it hell Yz229, and may God bless you and your family!
aw man, that's wonderful!!! Hug that pretty lady in your avatar and squeeze everything out of this life. God bless.
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