What are /r/braincancer's favorite Products & Services?

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https://smallpdf.com/shared#st=dfd284ec-b271-4be1-96c9-812ad86e0995&fn=1-s2.0-S1470204521000905-main.pdf&ct=1623152590461&tl=result&rf=link

link good for 2 weeks. Article published last month.

First of all, run to the bookstore and buy this book: http://www.barnesandnoble.com/w/radical-remission-kelly-a-turner/1115554737?ean=9780062268747 It's one thing to hear about hope as an abstract concept, and entirely different to read actual stories (a.k.a. qualitative research) from survivors.

Secondly: I had brain surgery three years ago and during raidiation therapyI had an a-hole chemo doctor tell me I would be dead by now. Well, here I am...so f*** him

....and perhaps most importantly: You will hear a lot of scary statistics, but remember they are based on a bell curve, which means that 50% of the people on that curve survived longer than the average. If you look, you will find a lot of stories filled with hope.

Obviously, there is only so much we can control, so the question becomes where does a survivor focus their attention. The law of attraction is about what kind of "energy" you are attracting to yourself (it's commonly thought of as materialistic, but it isn't) So if you put your attention on positive things, you see the world in a better light. There will be plenty of hard moments....sometimes the best we can do is grab on to the rope and hold on for dear life. There will be ups and downs, so be ready for a wild ride.

I have found curcumin supplements helpful and do research on medical marijuana oil...it has a lot of promise (as does immunotherapy)

I hope things get better.

Hell yea. However, that dude (Ambrož Bajec Lapajne) is still singing today - i actually checked and he was in a concert in January. So it's actually an example of an awake craniotomy working exactly as intended. Sorry, should have given the context, I apologize for scaring you, it's scary enough as it is.

I also found this interview of him talking about it some more, and also about how he prepared himself psychologically for it.

I'm wishing you good luck too, all of it, in the world.

Yes, grade is correct. Not a mistake, so much as just typing/thinking too fast before leaving for work this morning.

I should tell you, he was diagnosed with an Astrocytoma, but WHO reclassified tumors after his diagnosis and he was later re-diagnosed as an Oligodendroglioma. For 6 years we thought it was an Astrocytoma. When he had a reoccurrence last year they had to do a second biopsy and we found out it's an Oligodendroglioma. Grade 2.

Regardless, you have every reason to have hope. A positive attitude and believing that you still have life to live is just as important, if not more so, than chemo and radiation. This book got us through the first few years which are the hardest. https://www.amazon.com/Anticancer-New-Life-David-Servan-Schreiber/dp/0670021644

Hopefully that link works. I'm new to reddit and don't post very much.

You can get tracking decives on Amazon, like this one. People use them for keys, pets that run off, elderly that wander, that sort of thing.

There are other brands, just don't get the Apple one if he uses Apple devices - that one will notify the user it is there.

I could be pretty hard to take the step to do this, and it can sound creepy, so make sure of your intentions ("I'm doing this to find out the truth. If dad is honest, no harm done. If dad is dishonest, I know for certain to not trust him on anything.")

If your dad drives, it would be easy to place under a mat in his car. If not, place in a seam in a coat at the back center - you'll have to carefully open the seam, place tracker, then sew seam back up.

When done tracking, remove these trackers. Or, leave and forget about them and never admit they are yours if they are found. He probably wouldn't know what they are anyway.

Surviving "Terminal" Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You About

I can't suggest this book highly enough. The author, Ben Williams PhD, was a professor at UCSD and very generous and accessible. From my limited perspective, he lived a meaningful life decades after he was given a very grim prognosis.

I believe it can also be obtained online as a PDF at no cost.

In my experience it did grow, but not rapidly. Mine only did because I grew due to puberty. In the last seven years it has changed, but not it a way that causes for alarm. My neurosurgeon stays it's stable.

Think of it like a warped silicone mold. Still the same thing, but not exactly the same place it held.

So mine is considered benign.

Here is this article saying that cyst are don't really become cancerous, but tumors can form cysts.

But I suppose if you fell hard enough from something you could jostle it around, so always go to the ER even if you feel fine to be extra sure. It can't happen from day to day activities though.

Puzzles have been my favorite. I can start & stop as much as I want. I don't need to worry about falling asleep and missing part of a movie, or listen to loud noise when I have a migraine. The other gift I use much more than I thought I would was my spill-proof travel cup . It keeps my drinks warm or cold, it won't leak if I knock it over or fall asleep with it in my hand. I also have a soft fuzzy throw blanket that my friend got me for my most recent craniotomy. I use it daily. After three brain surgeries, these are the things I always ask my husband for. If I forget to ask, he makes sure their waiting for me in my bedroom so I won't have to walk around.

In LA I had my 3 surgeries with Dr. Black at Cedars Sinai and while he lacked the bedside manner of my oncologist there, I still really liked him and he did an excellent job!!! He literally wrote the book: Brain Surgeon

Weight transfer/gait belt, very helpful to support him while moving about.

One-handed walker, good for stability if an arm isn't quite working yet. Like this Drive Medical Side Style Hemi One Arm Walker, Chrome, Adult https://www.amazon.com/dp/B002VWK064/ref=cm_sw_r_apan_i_WNT39292N70BKEDEAT20

Lift chair/recliner. Rockers/swivel chairs can be tough to get out of.

Have you tried queasy pops or drops(link here)? In the category of things you may already have, apple sauce can be really helpful, as can something plain but fizzy, like ginger ale or seltzer.

II ordered these

Memory Foam Pillows Queen Size Set of 2 - Bamboo Cooling Bed Pillows for Sleeping for Stomach, Back and Side Sleeper - Firm Cool Shredded Memory Foam Pillows 2 Pack Queen Pillows Sets - Memory Pillow https://www.amazon.com/dp/B076FGRHRV/ref=cm_sw_r_cp_api_glt_i_6ABKCJ379K6QWN4JA4ZV?_encoding=UTF8&psc=1

I don't want to be a dick in this kind of sub, but a benign tumor is not brain cancer.

"A tumor is an abnormal growth of cells that serves no purpose. A benign tumor is not a malignant tumor, which is cancer. It does not invade nearby tissue or spread to other parts of the body the way cancer can. In most cases, the outlook with benign tumors is very good. But benign tumors can be serious if they press on vital structures such as blood vessels or nerves."

No you don't need to wipe off the skin prep. Put it in about a half hour before you put arrays on. I ordered my brother this ice head wrap he uses when he's too hot with the arrays. Maybe this will help? Arctic Flex Head Ice Wrap -... https://www.amazon.com/dp/B089B4RM3S?ref=ppx_pop_mob_ap_share

https://www.amazon.ca/gp/product/B000QIY5GG/ref=ppx_yo_dt_b_asin_title_o01_s00?ie=UTF8&psc=1

Ben mentions Life Extension as the brand in his literature, I found this one on Amazon and have been taking it for a bit now. I'm pretty sure this is the one he takes.

Dark colored pillow cased. They are going to get stained. Depending on how much the incision oozes, you may want to change it every day or 2x daily.

Easy things to wear - maybe a couple of shirts that snap or button in front so he doesn't have to pull them over his head.

I bought a projection clock that shines the light on the ceiling, so if he wakes at night he doesn't have to look for the clock.

Maybe an overbed table like this one. Everything I've gotten from Drive has been well made and easy assembly. https://smile.amazon.com/Drive-Medical-Overbed-Table-Silver/dp/B002VWJZ8S/ref=sr\_1\_3?dchild=1&keywords=overbed+table&qid=1634948935&rdc=1&sr=8-3

This book is good. It’s science-based and written by someone with a brain tumour.

https://www.amazon.co.uk/Glioblastoma-patients-glioblastoma-anaplastic-astrocytoma/dp/095536955X

He also has written one about low grade tumours but that is more for patients (although it would be informative for relatives too): https://www.amazon.co.uk/Brain-Tumours-Living-low-grade/dp/0955369576

It will grow back most likely :) Although it might grow back slower than the rest of your hair. I used to put this product in my dad’s hair everyday and it grew back beautifully: Biotin Hair Growth Serum Advanced Topical Formula To Help Grow Healthy, Strong Hair Suitable for Men and Women of All Hair Types Hair Loss Support By Pureauty Naturals https://www.amazon.com/dp/B076TYGMYQ/ref=cm_sw_r_cp_api_fab_TiLEFbBV61T71 Wishing you the best, keep fighting!

The webpage isn't loading for me (inb4 overloaded with traffic from 3 whole redditors smh).

But that does remind me - one of the nurses got us this book which I assume is very much the same: Gone From My Sight The poem was really sweet, and the "what to look for" timeframes were good to crossreference with what I linked above.

It's just crazy how different GBM is from person to person. My mom was inoperable (it was golfball size in the thalamus by the time we found it). Some people only get 1 week with their loved one, others up to two years.

And yeah, same here. Still feels like she's going to pop out of a room and be like "jk guys it was a joke" since we didn't want to hold a funeral at this time. Ugh :/

There is also a better version of Keppra called Briviact that I would ask the docs about. Maybe a low dose of that in combo with vimpat would help. Also, drink some electrolytes everyday. I know imbalances of it can cause seizures in brain tumor patients Ultima Replenisher Electrolyte... https://www.amazon.com/dp/B01IIGHS0W?ref=ppx_pop_mob_ap_share

Another thing I would ask the doc about is a perfusion MRI and whether or not there could be growth that is not visible in the scan. Good luck, I wish you the best results and that the seizures stop, keep fighting

Hi there. Sorry that you're going through this. I've had to deal with this too, but thankfully nothing as large as that. I'm not too familiar with pituitary tumors specifically, but I think that they can be treated pretty well. If she's lucky, they might only have to go in through her nose and not open up her skull. Right now, you need to do THREE things 1) DO NOT PANIC. You don't know if it's growing. You don't know how fast it's growing. You don't know the grade, or type (there are 200+ different types of brain tumors). 2) DO NOT GOOGLE SHIT 3) FIND THE BEST HOSPITAL WITHIN 500 MILES FOR THIS KIND OF SURGERY. You know how we have that saying"it's not rocket science / it's not brain surgery"? Well, that's because brain surgery is really fucking complicated and you don't want just any spine/brain surgeon working on this. You don't want some asshole who says "oh yeah I can do that" you want the bitch who TEACHES other doctors how to do this in a CLINICAL setting. If you're in Colorado, like me, the nearest place would be Anschutz. If you're near Texas, that would be MD Anderson. If you're on the west coast it would be the cancer center at UCSF. IF THIS IS AN EMERGENCY AND SHE NEEDS TO BE OPERATED ON SWIFTLY THEN THE DOCTORS AT THESE HOSPITALS WILL ACCOMMODATE.

Some other tips

Begin at ONCE getting copies of ALL medical records VERY neatly organized.

Help her understand her maximum out of pocket with her insurance

If you or her are worried about the prospect of death I HIGHLY RECOMMEND THIS BOOK

Keep asking questions and feel free to PM me. YOU ARE HER BIGGEST ADVOCATE AND ARE PROBABLY THE CLOSEST TO HER RIGHT NOW. SHE NEEDS YOU TO BE STRONG!

My father-in-law has stage 4 GBM and he really seems to like electronic football. Brought back lots of good memories for him.

http://www.amazon.com/Mattel-Classic-Football-Handheld-Game/dp/B00005BULI