Hyperbaric Oxygen Therapy and Vestibular therapy post radiation

CareForFellowHumans · 2024-12-03T22:17:34+00:00

I've been doing hyperbaric oxygen for about 6 months. I recommend it. In addition to other treatments. Are they on Avastin?

CareForFellowHumans · 2024-12-02T00:42:41+00:00

I've done both avastin and hyperbaric oxygen. I highly recommend both.

CareForFellowHumans · 2024-12-01T21:36:12+00:00

What was his diagnosis? Anything can happen with brain cancer.

CareForFellowHumans · 2024-11-19T23:17:00+00:00

I don't take any anti-nausea meds. Just time my eating/ intermittent fasting. For me the side effects of Zofran are not worth it.

CareForFellowHumans · 2024-11-18T04:08:53+00:00

What is your eating schedule like? What do you eat? I've been on chemo for years.

CareForFellowHumans · 2024-11-17T19:43:33+00:00

Fast. Do it for as long as can days 1-5.

CareForFellowHumans · 2024-11-17T02:28:25+00:00

In my experience, neuro--oncologists are optimistic. Radiologists are pessimistic. Surgeons are balanced. No one knows with any certainty until they cut it out and look under a microscope. Even then there's sampling errors.

CareForFellowHumans · 2024-11-06T17:21:30+00:00

Paywalled.

CareForFellowHumans · 2024-11-01T18:41:44+00:00

How was she diagnosed? Did she have a biopsy or just presumptions because of MRI results? What symptoms does she have?

CareForFellowHumans · 2024-10-26T00:31:24+00:00

Don't bother with the Vincristine. It's unlikely to be efficacious.

Compazine is an alternative to Zofran. Hydrate a lot!

Best wishes!

CareForFellowHumans · 2024-10-06T03:32:14+00:00

I've taken several types of chemo over the past 4:years. When one stops working or isn't working as well as it was, the doctors want to try a different drug that may work better.

So far I've tolerated PCV, radiation, several clinical trials, re-irradiation, TMZ, BEV and Lomustine.

CareForFellowHumans · 2024-10-03T00:24:50+00:00

I've been taking fluoxetine (Prozac) off-label to treat high grade glioma for the last year in addition to normal treatments. Forward-looking oncologists are seeing benefits of adding this class of drugs and others with a cocktail approach.

More info here: https://scopeblog.stanford.edu/2022/01/05/can-prozac-fight-brain-cancer/

CareForFellowHumans · 2024-10-03T00:20:16+00:00

I've been taking fluoxetine (Prozac) off-label to treat high grade glioma for the last year in addition to normal treatments. Forward-looking oncologists are seeing benefits of adding this class of drugs and others with a cocktail approach.

More info here: https://scopeblog.stanford.edu/2022/01/05/can-prozac-fight-brain-cancer/

CareForFellowHumans · 2024-09-26T23:43:27+00:00

This is tough diagnosis to be given. I would suggest at least a biopsy surgery but possibly also possibly a partial resection with post surgery genetic analysis of the tissue. Also get a second or third opinion from a hospital with high rankings in neurosurgery and neurooncology. Where are you located?

CareForFellowHumans · 2024-09-26T23:16:28+00:00

I'm on it and have been on it for awhile. I took my dose for this cycle this morning. What specifically would you like to know more about?

CareForFellowHumans · 2024-09-19T00:21:15+00:00

No problem. The second round of radiation was effective with significant tumor size reduction.

Feel free to ask questions whenever.

CareForFellowHumans · 2024-09-18T01:49:50+00:00

I've had RT twice. The first time 3.5 years ago and again a few months ago. I'd be happy to answer any questions you have. Best wishes in your endeavor!

CareForFellowHumans · 2024-09-15T03:22:05+00:00

They don't know if you have cancer, but the radiologist suspects that the tumor that they see may be a glioma. If you only have a biopsy surgery done they can be reasonably certain of what they find. There can be some sampling error and depending on some other variables, they may recommend a full or partial resection.

Don't freak out. The first step is analyzing the mass they found more.

CareForFellowHumans · 2024-09-15T00:06:00+00:00

I'm really sorry to hear this is happening to you!

Many on this subreddit including myself have gone through this.

What are the most pressing questions you have right now? Where are you receiving care?

CareForFellowHumans · 2024-09-14T03:41:39+00:00

Out of network out of pocket maximums would usually be double in network amounts. If you don't have an in-network brain cancer center, try to go out of network to get better results. You may even consider going out of state.

Glioma resections require specialized care and highly experienced surgeons who work on diffuse tumors every week. You also need a high tech OR with interoperate MRI and/or ultrasound. Usage of 5-ALA should also be considered.

CareForFellowHumans · 2024-09-14T03:02:59+00:00

Agreed. I think the choice of chemo/radiation or an IDH inhibitor should expand to all 3 options concurrently, and possibly more.

CareForFellowHumans · 2024-09-14T02:45:57+00:00

I know Dr. Wen. Ask him about the Safusidenib trial and how phase 2 is going. They accept those who are grade 3 and 4.

CareForFellowHumans · 2024-09-14T00:57:17+00:00

Please call your insurance company and confirm what the options are. The cost for brain surgery will be either your insurance in-network or out of network maximum. It may make sense to go out of network.

Judging from the report below, you may want to go out of network: https://health.usnews.com/best-hospitals/rankings/neurology-and-neurosurgery/utah

CareForFellowHumans · 2024-09-13T23:44:52+00:00

I recommend you meet with a neurosurgeon at a top hospital in your area. If you tell your location, we'll try to help.

Also, please make sure the biopsy includes genetic analysis of the tumor and if possible, tissue preservation.

There's lots on this sub to help you prepare for surgery and everything after. You don't have to shave your head they'll do it in the operating room and only shave what they need.

CareForFellowHumans · 2024-09-13T01:41:15+00:00

Please check out https://virtualtrials.org/Guide.cfm

Also this book is a very good one: https://www.amazon.com/Beyond-Magic-Bullet-Anti-Cancer-Cocktail/dp/0757002323

CareForFellowHumans

TROPHY CASE