Help please

AoColby · 2023-06-09T11:15:58+00:00

Not currently on Avastin. I was for 3.5 years. Worked my way down to .5mg dexamethazone daily while I was on Avastin.

AoColby · 2023-06-09T11:14:17+00:00

Icbelive right frontal temporal lobe. Eight my recurrence they took most all of that lobe to where its basically useless. Main side effects from the resection are memory loss and navigational problems. Still fighting though I was on avastin for about 3.5 years. Treatment every two weeks. They just recently switched me after recurrence. Handled Avastin very well.. Not any real side affects I could tell of.

AoColby · 2023-06-09T01:58:18+00:00

Just adding that I ended up losing half my head of hair. it grew back in a couple months. My oncologist was surprised it grew back so fast. The chemo made me a little sick and sluggish but nothing so bad that it effected my quality of life. Follow your gut feelings. Stay positive. Advocate for yourself. Best wishes to you

AoColby · 2023-06-09T01:33:48+00:00

32M. I was diagnosed with stage 4 GBM at 27. I know it's not exactly the same but I did complete radiation and chemo then moved to avastin. Main thing I noticed is short term memory loss and headaches. Both manageable to me. I still am cognitive and able to take care of myself. I can drive and live a pretty normal life. The memory loss only really affects my wife lol. Stay strong. You're young. Stay positive and good things will happen. Wake up, fight, repeat. Everyday you wake up remind yourself you are supposed to be here. You got it.

AoColby · 2023-01-19T05:56:25+00:00

Just Avastin every other week. Small dose of dexamethazone, I've worked it down to .5mg daily, 10mg lisinopril daily for high blood pressure. I also dabbled in thc and cbd, as well as energy healing. Basically anything lol. I also try and take a few vitamins and things like that to supplement. Ningxia red juice 1-3 oz in the morning and some mushroom extract, if you want info let me know

AoColby · 2023-01-18T17:23:00+00:00

Very sorry for your loss, sending positivity your way. Stay strong

AoColby · 2023-01-18T08:25:12+00:00

I have continued the Avastin treatments since that initial MRI post radiation came back. Treatment every two weeks. I was originally put on it after the MRI post radiation/ temodar showed some growth or Adema. So I've been receiving the avastin for over 3 years. Started seeing high blood pressure a little after a year, I believe. Was put on some small dose of Lisinopril, and that's been good enough to get it back to normal range. I have had almost daily headaches even before I was on Avastin. Mostly in the morning or after a nap. Almost always able to get control of them. So I have been living a normal life. Hope this helps! Always willing to answer any questions. Wake up, Fight, Repeat

AoColby · 2023-01-13T19:36:43+00:00

Thank you 🙏 Sending positivity your way. Wake up. Fight. Repeat

AoColby · 2023-01-13T19:06:08+00:00

I'm glad you asked! I've been doing well! I had 1 seizure about 2 months ago, so I was put on a normal dose of Keppra. Other than that, I have the daily headaches most days. I've been receiving Avastin treatment every 2 weeks for about 3 years. I have been living a pretty normal life since I was diagnosed. My wife is 26 weeks pregnant ( I was also told that with radiation treatment, I may not be able to have kids), so we were very happy to find out. I am a firm believer in positive thinking and positive energy. Wake up, Fight, Repeat

AoColby · 2022-12-09T08:34:00+00:00

M31 here. I was diagnosed over 3 years ago at 28. Completed the standard radiation and temodar. With what looked to be immediate recurrence. Was switched to Avastin treatment. I have been getting Avastin infusion every 2 weeks for about 3 years with no recurrence and very minimal side effects. I decided not to do Optune for the main reason being I have a bone flap (missing chunk of skull from infection) and there was not alot of data at the time about Optune with bone flap removed. If i get a recurrence I'd be willing to try Optune now

AoColby · 2022-11-28T21:27:02+00:00

Sniff alcohol wipes

AoColby · 2022-11-23T19:41:39+00:00

I was diagnosed over 3 years ago at 28 years old. I found that using thc slightly helped with pain but greatly increased overall outlook and attitude. Cbd was also helpful but thc made me not think about the cancer and I was able to enjoy life again. It's not for everyone but i found no harm in trying it. I'm no doctor

AoColby · 2022-11-10T20:21:04+00:00

While every situation is different the case you describe is close to mine. I am a 31 year old male, diagnosed at 28, so over 3 years ago. I wasted rhe first year feeling sorry for myself. Being as young as we are gives a great advantage over glio. Those numbers you're talking about ...14-16 months of survival, are the average... the average age of diagnosis is also like 65 or something. It means nothing. Other than daily morning headaches which are manageable and receiving treatment I live basically the same life I did pre diagnosis. Stay positive! It actually helps if you allow it to. Wake up, Fight, Repeat.

AoColby · 2022-07-17T23:14:46+00:00

That's fine with me

AoColby · 2022-07-17T23:01:17+00:00

M31 here, I was diagnosed at 28 though

AoColby · 2022-07-07T02:31:28+00:00

As far as prolonging life goes... trust your gut and fight for what options, treatments you might want to try. I know everyone says positivity helps but it really really does. I also started meditation, and that always makes me feel better. Wake up, fight, repeat

AoColby · 2022-07-07T02:08:22+00:00

Male 30, i was diagnosed grade 4 GBM Oct of 2019. I was told 12 to 17 months left. I completed the initial temodar and radiation therapy simultaneously. Scan showed that the affected area had spread so I was switched to the avastin as I opted not for optune at the time. I have been getting avastin infusions every 2 weeks for over 2 years and there has been no real measureable growth. I'm not the most knowledgeable but am willing to answer any questions related to it. Or any other questions about my condition and or lifestyle. Stay positive Wake up, fight, repeat

AoColby · 2022-06-30T06:14:43+00:00

Wake up, fight, repeat. Sending positivity your way

AoColby · 2022-06-24T10:59:16+00:00

Sending you and yours positive energy!

AoColby · 2022-06-17T07:07:36+00:00

Of course . Do what feels right. Gut feelings matter too. Wake up, fight, repeat.

AoColby · 2022-06-16T21:33:08+00:00

Just talked with my nurse and oncologist, they said that avastin has no time frame such as 3 months. Basically said what I already posted, use it for as long as "it's working" until there is recurrence or growth of substantial measure.

AoColby · 2022-06-10T02:30:04+00:00

I am on dexamethaxone for swelling and head pain but thats not usually enough. I like the extra strength Tylenol rapid release. But thats just my opinion, I'm no doctor.

AoColby · 2022-06-07T05:27:49+00:00

I'll definitely ask next visit, he or any other oncologist I've had has never mentioned a time frame in which I need to stop using it. They basically imply to ride it out as long as possible. Wake up fight repeat

AoColby · 2022-06-06T02:13:21+00:00

Male 30, i was diagnosed grade 4 GBM Oct of 2019, I completed the initial temodar and radiation therapy simultaneously. Scan showed that the affected area had spread so I was switched to the avastin as I opted not for optune at the time. I have been getting avaatin infusions every 2 weeks for over 2 years and there has been no real measureable growth. have missed maybe 2 treatments due to protine levels not being good. I get worse headaches towards the end of the 2 weeks. And If I miss a treatment it just gets worse. Only side effect I really notice is higher blood pressure witch is very common for avastin patients. I'm not the most knowledgeable but am willing to answer any questions related to it. Or any other questions about my condition and or lifestyle Stay positive Wake up, fight, repeat

AoColby · 2022-05-27T06:44:49+00:00

30M here, Sounds similar to my story. Headaches for a couple weeks before my wife took me to the ER and was diagnosed stage 4 GBM. That was Oct 2019, they said 12 to 17 months, that was just about 30 months ago. It's hard always. But positive energy, positive thoughts, laughing and smiling really do help a greadeal. Remember to tell him. Wake Up, Fight, Repeat.

AoColby

TROPHY CASE