+ Reply
Log in or Register to participate in these discussions
Brain tumour
Aaron
4 Posts
How’s every one that coups with brain tumour and did the recovery go well and how long 
I was diagnosed with Brain tumour 
15 Replies
Whitelilies
2272 Posts
Aaron‍ Hello Aaron and welcome to our caring community.....I am sorry for the reason you found us; but glad you did.
There is a lot of helpful info on this site.....please have a look.
Here is a link to start you off::
https://cancerconnection.ca/discussions/viewcategory/61

How are you feeling?  Where are you, on the journey?

I will tag other members, and hope they can soon chime in, and share their experiences, here, with you......I checked the site and found only a few members, some not as active as others...but I hope they will share their journey.

Thank you to:
JCor403‍ 
markschelter‍ 
gr8ful2b‍ 
Rachel - DM‍ 
Much appreciation, to share your experience, and support, for a new member.

Aaron; we are here, to listen and support and more.

Regards
Whitelilies

ps to tag another member, type "@" and screen name.....tap at name you wish; turns to blue-box, and only they will receive your message.
Aaron
4 Posts
From burns lake bc 
Lotta headache lost of taste left side numb face eyes get tired fast and sharp pains top head like knife twisting pend on what I eat would throw up 
4Rider4
4 Posts
Hi and welcome.

 I have glioblastoma and had my first surgery November 2019. It went well. I have another one January 15 booked. Recovery is tiring so listen to your body. Rest is healing.

What tests have they done? I f there is swelling you need steroids to bring it down.   Swelling can make headaches worse. I’m on Dexamethasone.
Aaron
4 Posts
If had many mri done and soon pet scan and 3week ago had surgery threw my nose and they aim to do radiation and kemo after pet scan in the next 2 weeks or so and ya notice rest was a big thing after the nose surgery was done 
Aaron
4 Posts
I was given many pain meds but so far ov done everything natural and only taking lotta vitamins such as turamac oil of oregano vitamin d and eating and drinking fruit and juice all no suger
4Rider4
4 Posts
Do they know what kind of tumour you have? I had 6 weeks of radiation and oral chemo every day for 6 weeks. After a month to recover (radiation is exhausting) I had a higher dose of the oral chemo once a month for 5 days. I did that for 6 months and then it was just MRIs to monitor things.

How are you feeling?
SandiG
23 Posts
my hubby is on Dex as well , mostly some minor confusion and memory issues ' He just started having nerve pain in foot , MRI scans good for past year even thou they gave us 14 months prognosis  Stay well and lets talk it out 
Angelal
8 Posts
@4Rider4

From what you posted here, you responded pretty well to the treatments (Surgery, Radiation and Chemo) for GBM patients.

My friend has GBM stage IV last Nov. Surgery went quite well, but not the radiation and chemo. He just had a second surgery 3 months after the first one.

The only hope left for him is clinical trial, but nothing is going on in Toronto, only U.S.

May I ask where you are located and if in Toronto, where did you get your treatments done?

Thanks and Best to you!

Angela

Angelal
8 Posts
4Rider4
Hi
How was the second surgery going? Hope everything is fine.

Dexamethasone is good for swelling of brain after surgery and swelling during Radiation Treatment, but not a good idea to take too long.

God blesses you!

Angelal
8 Posts
SandiG

When doctors, scientists even have no idea how to treat GBM patients, our own mind and strength count more than anything else.

God blesses your husband and you!

Angela
4Rider4
4 Posts
My surgery went well and I’m doing well thanks. I’m in Toronto and go to Sunnybrook. There doesn’t seem to be any trials going on and there are some I’m interested in that they’re looking into in the States but that’s probably expensive. It’s also very tricky because this cancer affects people very differently depending on the tumour location and personal genetics. It’s so frustrating.

Angelal
8 Posts
4Rider4

Hi
Glad that you are doing well after the second surgery. According to some studies done, the GBM patients going through 2 or 3 times surgeries tend to live longer than those had one surgery.
Unfortunately my friend went to Princess Margret for radiation and Chemo. They didn't monitor his brain though MRI during and after the radiation treatment even though we asked so many times to have him checked on MRI.
When he finally had MRI checked which was 3 weeks after he finished all the radiation and chemo, it's too late for him to just take dexamethasone and he had to have another surgery only after 3 months he had the first brain surgery.
When we found out that Sunnybrook actually monitor through MRI when radiation is given to newly diagnosed GBM patients, my friend almost finished his RT at Princess Margret. And it's not something you could try one more time.
Radiologist and oncologist at Princess Margret reacted very slow or no reactions at all. My friend had to go through hell again due to their neglect.

As I know, there is clinical trial going on in U.S. for recurrent GBM patients with nasal inhale perillyl alcohol. Same clinical trial has been down in Brazil more than 10 years ago. The clinical trials showed some benefits for GBM late stage, recurrent, at deeper location in the brain without severe side effects.

Even there were studies that showed benefits for GBM patients taking chemo with some other medications together , no matter the cancer gene type is sensitive to TMZ or not.

As for immuno-therapy, not too much information now. Even there were, must be in the states as well.

As for this kind of disease, even doctors and scientist have no clue, our personal mind and help from loved ones count more than anything else.

Bet you must be a very determined, positive person and God blesses you!

We are in Toronto as well.If you like, maybe we could get in touch privately.

Angela


Angelal
8 Posts
Hi

Try Keto food. High fat (unsaturated fat),, medium protein and low carbohydrate.

Can not rely on Dex all the time. It's good for after surgery and during radiation to reduce brain swelling.
4Rider4
4 Posts
Angelal‍ has your friend tried Sunnybrook for a second opinion? They have gamma knife now. It might be worth looking into.

Dex is hard on the body but hard to come off of. After my next MRI my NO will decide what to do.
Brighty
8442 Posts
I'm so sorry for what you are going through Boatguy‍ . Welcome to this supportive site. We will try and help you with whatever you need. I'd you click on 'forums' and 'cancer types' and 'brain' cancer you will find discussions and other members to connect with. We also have the cancer info line and wonderful people to talk to at 1888 939 3333. Do you currently have a support system? You may also want to check with the hospital you are being treated at. They may have a support group or an oncology social worker you can talk to. We are here to help too.
+ Reply