Hi all,
We've been missing in action as things have been happening quickly. I think I already told about the progression(s) before Chance could even take the Toca 5FC pills. And it continued after taking the Toca 5FC.
They added Avastin, then at last MRI in February there was further progression, so they dropped the Toca 5FC and added CCNU. He has only had one round so far.
He experienced a loss of right field of vision, but to him it wasn't a right side problem, he was seeing blurry out of both eyes (which of course made reading, emails and text problematic).
Our NO, suggested Optune. Chance is taking his daughter to Hawaii in April and he wanted to wait until after the trip. Seemed perfectly logical to all, but his right vision has diminished dramatically in the last couple of weeks. Dr. Taylor said not to postpone the Optune, so we're moving forward.
I wondered if we could have a discussion of tips, dos and don'ts for Optune use. I read somewhere that a cooling hat was really helpful in hot, humid weather, but when I tried to find one, they were all one size and reviews revealed complaints that the hat was too small (and that of course wasn't considering those arrays). Others required water to create the cooling effect, but I didn't know if that would cause irritation.
I know we'll get lots of info when they actually bring the unit, but I thought hearing what works/what doesn't from users would be very helpful - especially in relation to traveling or athletic endeavors.
Thanks and appreciation - Jude
Hi,
ReplyDeleteIs he is taking under 4.1mg of dexamethosone? The studies report adverse effects on higher steroid dose. We had Optune and the representative who came to our house Kaelli was very creative and helpful to meet our needs. I would explain your situation to them and they will really go the extra mile to try and help make it work within your lifestyle. For us they only recommended a fan pointed at the head to disperse heat. It was more challenging at night when your head is on a pillow and the pillow traps the heat so alarms go off. Sweating is also an issue if you are in a humid climate. It just means you may have to change the arrays every day or 2 days. They send you whatever you need so it isn't an issue how often, just more work for you. Hope it helps! Good luck.
Sorry I don't know anything about Optune but wanted to wish Chance well and hope that CCNU shrivels the tumour down to nothing. x
ReplyDeleteMy son has been using Optune for over a year. He has managed to maintain an average of between 21 and 22 hours per day of use even though he will remove it for sports activities. The issue of sweating when in warm environments or with physical activity is a frequent problem in the summer even though temps average in the 60's up here. If we go fishing, we limit the hours to the early mornings unless its an overcast and cool day. When he plays baseball with the adult league he wears optune right up to the time he gets to the field and then removes it. After the game he showers, shaves his head and starts wearing the device again. We have talked about how sensitive the device is to sweating and how difficult it would be if we lived in someplace like Florida or Arizona. In general he has adapted well to bringing the device with is when he travels and its a lot of gear to haul around. When at home he will go about his daily life with the device and has adapted well. He is a teacher, he works around the house, does repairs, mows the lawn, etc. He has a good attitude about hauling the device around and just accepts it as part of his life. If that acceptance is not their, I wound think it would be constant battle to integrate it into his life. I am sure he would be willing to talk or email his experience and tricks in dealing with the device if you or chance want to discuss it with him.
ReplyDeleteHi Michael! Question. Is Jeremy taking Avastin or chemo? Chance is doing fine with the Optune but doesn't want to do further Avastin or chemo. We cancelled an Avastin appointment today and his doc was agreeable. I told her we wanted to make further treatment decisions after his next MRI (June 14th). Just curious how Jeremy is doing it. Our NO already stated she would not recommend Optune without chemo. Thanks!
DeleteHi Jude. I am 3 months plus on the Optune. I am using it 23+ hours a day. I suppose I am anxious about it working as no other therapy has for me hence the high usage rate. I had my first stable MRI a couple of weeks ago. Very Exciting! So yes, I'd get Chance on it quickly. It takes a while to start working. Maybe we can talk about how to get to Hawaii and back with our daughters. I'd like to do that too.
ReplyDeleteLet's bring in the tips on using this device!!
-If it is mildly worm and sunny, the device will alarm. Any hat takes care of this.
-On the couple of hot days I've been out, an evaporative cooling towel helped tremendously.
-I mounted a 4" fan on my headboard opining down at my head for 2 nights now. I use this in combination with a cooling pillow and it works rather well.
Now I have a dozen little sores on my scalp where the radiation passed to access my tumor. Has anyone else had this happen? How did you get them to heal?
Wonderful news Seth!!!!
DeleteMike B
I just realized when I wrote this I overlooked the "Notify Me" checkbox, so I didn't know there were comments here. Thank you! Katsuma, he is on less than 4 mg Decadron - thanks for mentioning. Thanks, Linda! Mike, I appreciate your description of Jeremy's usage. Very helpful. Sethman, I'm jumping up and down with your news! That is great. We're in the same bag re nothing seeming to work very well, so it would be such a charge to get good effects. After writing this post, I found these tips on Inspire: https://www.inspire.com/groups/american-brain-tumor-association/discussion/tips-about-novo-ttf-optune-brain-cancer-treatment/ - Some of the above tips are included. The treatment is approved and we meet with our NO Tuesday.
ReplyDeleteWishing you and Chance well with Optune
ReplyDeleteThose tips are great Jude! Just what I needed. Thanks.
ReplyDeleteUpdate: Chance will have Optune tomorrow. Dr. Taylor suggested he wear it until as much as possible until April 12th - his next MRI, and then leave it off until he returns from Hawaii, April 17th. We'll reapply on the 18th and he'l have to wear it a lot to meet compliance, but he's totally agreeable to this solution.
ReplyDeleteUpdate: Chance has had Optune a week and his right peripheral vision is improving. He's wearing it constantly as next week is his MRI and trip to Hawaii. All is well and I hope the same can be said for you.
ReplyDeleteOh Jude, I am so glad to hear that Chance has found some improvement. I hope that he has an amazing trip to Hawaii!
DeleteJaki
Have you had any problems flying with the optune?
ReplyDeleteNo, Chance is not going to travel with it. Optune told us that you have to make advance arrangements with the airlines. Some airlines allow the lithium batteries to fly with you, some do not. If you cannot take the batteries, Optune will deliver batteries to you at your destination.
Deletefor what its worth my son has never had an issue with airlines. homeland security somtimes makes an issue of optune though
ReplyDeleteChance had his MRI Tuesday. 25% tumor growth. The Optune is off for the trip to Hawaii. He returns Sunday, and on Monday, it's back to Optune, Avastin and Carboplatin in place of CCNU. His Optune compliance was 95%, and we'll hope to see some tumor stability at next MRI in a month.
ReplyDeleteJude, keep in mind Optune can take 4 to 5 months before showing signs of efficacy. its important to continue with optune even when there is tumor growth. 95% compliance is fantastic.
ReplyDeleteAnother MRI and this time - finally - I'm happy to share some GOOD NEWS. Chance's tumor is stable (for the first time since January). He, his fiancee and daughter had a great time in Hawaii. He got back on the Optune right away when they returned and then a week ago Saturday he had four seizures in one day and spent two nights at UCSF. To say we were dreading the MRI Monday would be an understatement. To say we were dancing in the streets afterward...! The Novacure tech came today to download the info and we found that after ignoring the time in Hawaii, he still had more than 75% compliance. Michael, I'm thankful for your message about taking 4-5 months before showing signs of efficacy, but my question now to you and Sethman is after those few months might we look forward to some signs of reversal of deficits? The loss of right side peripheral vision is probably the worst, but the word finding is very frustrating for him. Sethman, if you are only going to Hawaii for a few days, it might be quite liberating just to leave the Optune at home. Chance really appreciated not having to deal with in on vacation. When I talked to Novocare about Chance taking it off for a few days, they said there was no problem, people remove it for a few days for a variety of reasons without a problem.
ReplyDeleteJude
ReplyDeleteI am thrilled to hear the tumor is stable. I don't know the answer to the deficits questions, as Jeremy has not had any other than short term memory issues and difficulty coming up with words from time to time and this has been present even when there was no evidence of tumor. So when Optune was added, there was no evidence of tumor regression since there was no tumor. With regards to wearing Optune in Hawaii, unless someone remained indoors, in an air conditioned room, the device would be beeping all the time due to sweat on the forehead from the Hawaiian heat.
Jude,
ReplyDeleteCongratulations on the wonderful news! I'm so happy for you, Chance, and everybody else in your lives!
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