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19/12/2017 3:10:53 PM
Topic:
Looking For Support or Information from Staff??

amathias
amathias
Administrator
Posts: 7
Due to the success of the Closed Facebook Support Group, and following the latest unfortunate spam attack on this page, we are taking the hard decision to close this forum. We would like to take the opportunity to thank everyone who has contributed over the years and provided support. We hope that you will continue to support each other in our Closed Facebook Support Groups (both English and French).
19/12/2017 3:07:26 PM
Topic:
We are going to be closing this forum soon

amathias
amathias
Administrator
Posts: 7
This forum has been used less and less since we started the Closed Facebook Support Group a year ago (which is a very active group that people who are looking for support are welcome to join) and since this forum was recently attacked with spam, we have taken the hard decision to close this forum. Find out more about the Closed Facebook Support Group at https://www.braintumour.ca/6880/closed-facebook-support-group and see details of the new French group on that page too. We would like to thank everyone who has taken the time to contribute to this forum and provide support. We are sincerely grateful.
20/10/2017 7:52:37 PM
Topic:
Anyone with meningioma??

Asta
Asta
Posts: 1
Yes, I also found out about my Meningioma by accident. After experiencing sudden unexpected headaches (due to other reasons, it turned out), I had a CT-scan done in early 2014. Now, 3-1/2 years later, I have had annual MRIs, just to make sure there is no change in size. My growth is in a "safe" part of the brain: the right temporal lobe. It is between 2.5 and 3 cm in size. My only concern is that--as I am already in my early 60s--what happens if the meningioma grows as I age and I need treatment when I am more vulnerable? I just joined up on this group and I am happy to have (and give) peer support.
17/10/2017 2:00:34 PM
Topic:
At beginning of chemo/radiation, seeking advice

Lars
Lars
Posts: 1
My father started chemo/radiation therapy for his malignant brain tumor last week. Surgery to remove part of the tumor happened about a month ago. The tumor was growing in the part of his brain that does rapid recall of nominative words, so now he has Aphasia (difficulty using those words in speech). Doctors suspect the tumor had been growing for about a year.

I'm wondering if I can wait for chemo/radiation therapy to end (two more weeks), before I have some important conversations with my Dad. He is clear on his prognosis and everything (he's estimated to survive one year), but we need to talk about some life stuff. He has been fatigued and nauseous from the treatment, and communication is even more taxing for him on radiation therapy days.

So again the question is: can I wait for therapy to end? We only have this one round of treatment to do, because the doctors are calling this terminal. Based on what I've described about my Dad's condition and the nature of the tumor, can anyone say if I should wait to dive deep with him on philosophical and spiritual subjects? Or could he lose his faculties during the course of his treatment, and not recover them?

To simplify the question: do chemo/ratiation therapy patients usually have improved cognition following therapy? Can a cancer continue worsen cognition during treatment, and can treatment worsen cognition in a way that is not recoverable even in the short term (coming months)?
edited by Lars on 17/10/2017
13/10/2017 9:24:27 PM
Topic:
Possible Temporal Lobe Seizures???

Ambrielle-Lyn McQuaker
Ambrielle-Lyn McQuaker
Posts: 1
Hello I'm Amber
I've had a brain tumour in my left hippocampus since 2008. The tumour was diagnosed by MRI and I've never underwent a biopsy or resection. For 3 years after diagnosis I had migraines and learning problems. In 2012 I had a seizure and have not had any others since. An EEG in 2015 was normal.

Over the past 8 months I've been experiencing unusual and frightening episodes. My last MRI was in June 2015 and everything was 'stable'. I'm hoping that someone else has experienced similar episodes and knows what they are. I also need guidance on what next steps I should be taking.
  • September 2nd, 11th and 12th I felt a jolt of electricity in my right arm and that arm jerked outward suddenly. Could this be a Simple Partial Seizures with Motor Symptoms?
  • On October 3rd and 13th I had episodes where my surroundings looked and felt "funny," there was a period of unawareness, afterwards I was disorientated and confused for a few minutes. During one episode I walked about 150 meters while being completely unaware. Could these be Complex Partial Seizures?

edited by AmbrielleLyn on 18/10/2017
03/10/2017 6:57:45 PM
Topic:
Pituitary Tumour-any info, advice or support

SarahwBC
SarahwBC
Posts: 1
[font=Raleway]I am a 28 year old, fit, extremely healthy female.I found out about a month ago that I had a 7mm tumour pushing on my pituitary gland. I live in a remote area in northern BC where there is no access to specialists. I am extremely frustrated and heartbroken after unsuccesfully trying to get pregnant for over 2 years. Finally I received an answer as to why; a tumour. I am on .25 Cabergoline twice a week. My GP doctor seems to be able to answer my questions. And reading some other online posts have made me panic a little for whats to come. How long before the medication starts to work? Will I be able to get pregnant soon? Does cabergoline make anyone else feel tired, headachey and a little down? Will I have to be on medication forever? What happens if the medication doesn't work? ANY info, comments at all would be SO SO SO much appreciated. Thanks[/font]
12/09/2017 11:47:26 AM
Topic:
Anyone with meningioma??

Kris10
Kris10
Posts: 1
I found out about my meningioma after complaining for years about my bulging eye!! Finally right on the day before my 40th birthday I was informed my meningioma was within the anterior temporal fossa that extended along my right sphenoid wing. It also is encasing the lateral rectus muscle as it extends into the right cavernous sinus and into the right orbital apex.
I had my craniotomy in May of 2015. My amazing surgeon could only resect part of my meningioma as it is wrapped around my optic nerve and other arteries and nerves in my cavernous sinus. He hoped I would be able to go for years as normally meningioma's are slow growing.... but not mine! I had to then go for radiation therapy in September 2016, 5.5 weeks, 28 sessions. That was very very hard for me personally to go through. I found the craniotomy easier to heal from. I am still feeling poorly. I have just found out that my pituitary gland was damaged from the radiation so now my thyroid has not been told to work from my pituitary glad. Now I have hypothyroidism. All of this at just 42 years of age. I am hoping to get back to my everyday life... I teach Pilates normally, I have two daughters, 19 & 15 and my husband. It has been very hard for them!! I haven't had much support elsewhere so it's great to finally find this board! All I can say is listen to your body and push your Dr's when you know something is off!! It has payed off for me every darn time. Where is your meningioma located? Have you had surgery yet? Giving you all my support and well wishes stay strong.
28/08/2017 1:05:18 PM
Topic:
Recently diagnosed with beign brain tumor

Jethro848
Jethro848
Posts: 3
There appears to be little activity here. There is a huge volume of info at https://www.neurotalk.org/
28/08/2017 12:45:01 AM
Topic:
Anyone with meningioma??

Jethro848
Jethro848
Posts: 3
A Winner wrote:
Seeking support and encouragement. I am a 72 year old woman, is reasonably good health, who was diagnosed with a meningioma 5 years ago. Due to location, left frontal lobe, neurosurgeon advises surgery puts me at high risk of mild to severe damage to right side mobility. As symptoms are tolerable and quality of life good, I have been in "wait and see" mode all this time with MRI's reduced to every 12 months for past 3 years. Just had 12 month follow up. There has been steady minimal growth and this time the doctor has suggested I consider surgery as he predicts growth will continue, the larger it get the more difficult to remove and I'll be at higher risk of mobility damage. Figures he can get 70% of it out now and that figure also likely to decrease as it grows. It is a difficult call as I can tolerate periodic head pain now and am physically active. On the other hand I've had a few episodes of "numbing" that starts in my right arm then travels up and down my right side (similar to a Novocaine block) and lasts for 10-20 minutes. We don't know if these might be seizures. Should I say Yes to proceeding with surgery??? Welcome any comments. I am afraid of the surgery. Thanks. ALB


If it is small enough, you can possibly get it killed with Gamma Knife Radiation. I know this is done in Winnipeg, not sure where else. Perhaps ask your neuro again. Still some side effects possible but certainly far less invasive than surgery. Good luck!
28/08/2017 12:37:16 AM
Topic:
Recently diagnosed with beign brain tumor

Jethro848
Jethro848
Posts: 3
missiep wrote:
First off let me introduce myself I am Missie I have migraines since I was a teenager when I graduated high school things got worse it seemed. My doctor put more medication and things seemed to improve and I was getting better ( or so I hoped) Last Friday things got way worse when I started getting vomiting which never happens and I started getting super dizzy and I said I need to the hospital. The doctor asked me what was wrong and I said I was vomiting all over the place and had a really bad headache but not my typical migraine and he told me was going to take a MRI so make sure everything was okay. The doctor came back into the room and said I have some terrible news we found a tumor ( beign) I was so scared. The doctor told me it is beign I have nothing to worry about until we do surgery but until then I just sit here and cry and have shaking in my head ( is that normal? Never happened before) constant headaches always jumpy being nauseous and having terrible nightmares. please help me!! Sorry the rambling post I am just so scared.


Depending on where the meningioma is located, it can be daunting but also not that bad. Honest! My wife had a meningioma located between the top and bottom halves of her brain located near the cavernois sinus compressing the brain stem. Scary stuff!
Our neuro surgeon spent 16 hours removing 75% of said tumor. This was last March. She is doing fine, had to get a shunt installed recently. The point is many meningiomas will not be this large nor this hard to get at. So keep your head up! Cheers
edited by Jethro848 on 28/08/2017
15/08/2017 4:08:04 PM
Topic:
Recently diagnosed with beign brain tumor

missiep
missiep
Posts: 1
First off let me introduce myself I am Missie I have migraines since I was a teenager when I graduated high school things got worse it seemed. My doctor put more medication and things seemed to improve and I was getting better ( or so I hoped) Last Friday things got way worse when I started getting vomiting which never happens and I started getting super dizzy and I said I need to the hospital. The doctor asked me what was wrong and I said I was vomiting all over the place and had a really bad headache but not my typical migraine and he told me was going to take a MRI so make sure everything was okay. The doctor came back into the room and said I have some terrible news we found a tumor ( beign) I was so scared. The doctor told me it is beign I have nothing to worry about until we do surgery but until then I just sit here and cry and have shaking in my head ( is that normal? Never happened before) constant headaches always jumpy being nauseous and having terrible nightmares. please help me!! Sorry the rambling post I am just so scared.
25/07/2017 8:50:13 AM
Topic:
Anyone with meningioma??

A Winner
A Winner
Posts: 1
Seeking support and encouragement. I am a 72 year old woman, is reasonably good health, who was diagnosed with a meningioma 5 years ago. Due to location, left frontal lobe, neurosurgeon advises surgery puts me at high risk of mild to severe damage to right side mobility. As symptoms are tolerable and quality of life good, I have been in "wait and see" mode all this time with MRI's reduced to every 12 months for past 3 years. Just had 12 month follow up. There has been steady minimal growth and this time the doctor has suggested I consider surgery as he predicts growth will continue, the larger it get the more difficult to remove and I'll be at higher risk of mobility damage. Figures he can get 70% of it out now and that figure also likely to decrease as it grows. It is a difficult call as I can tolerate periodic head pain now and am physically active. On the other hand I've had a few episodes of "numbing" that starts in my right arm then travels up and down my right side (similar to a Novocaine block) and lasts for 10-20 minutes. We don't know if these might be seizures. Should I say Yes to proceeding with surgery??? Welcome any comments. I am afraid of the surgery. Thanks. ALB
09/07/2017 10:57:58 AM
Topic:
looking for support, advice, information

Kristine
Kristine
Posts: 2
Hi Chrismat,
I am new to this forum. My husband was diagnosed October 7, 2016. He has a GBM stage 4, in operable.
How is your husband doing now? It does take a while for the steroids to decrease the swelling. We saw immediate results however we were then dealing with results of "steroid induced psychosis". Once we started reducing the steroid the psychosis slowly went. Is your husband still on steroids?
09/07/2017 10:48:51 AM
Topic:
looking for support, advice, information

Kristine
Kristine
Posts: 2
Chrismat wrote:
Hi, my hubby was diagnosed out of the blue on July 8 in the morning with grade 4 glioblastoma and had brain surgery that evening. Thought he was having a stroke. it was the size of 3 golf balls. I had to call my older son in Ontario with the horrific news and he flew in while his dad was still in surgery. Have a 16 yr old as well. Ron, my husband had a rare reaction during the surgery - as they were cleaning the area with peroxide after the tumour was debulked his brain went completely white and boggy. We were told he may not wake up, he may wake up and be seriously compromised. They didn't know. He was a miracle and woke up with no deficits, but they could not put the bone flap back. To this day, he is without that part of his skull and battles swelling constantly. He then went through six weeks of radiation and chemo pills and did great, although steroids had to be constantly adjusted to combat the swelling. He is now on his second month of temozolomide (takes it 5 days out of 28). We to not know the status of the cancer as the MRI showed so much inflammation. He is getting another Dec 9.

We stay positive all the time. But in the quiet (noise) of my mind, my thoughts race. Then I feel guilt. How do you deal with the uncertainty of this disease? I see the swelling every day. They say that can still be from the surgery, radiation, chemo or new tumour growth. He is doing well on the temozolomide, no nausea just very tired. I have been off work with him since the day it happened (chronic daily migraine, stress/anxiety) but am considering going back in the new year and am terrified to leave him.

Thank you. Any info, similar stories is helpful. I do feel 100% completely alone, and feel responsible for the physical and mental health of my entire family.
21/05/2017 10:52:50 AM
Topic:
Anyone with meningioma??

sunday sue
sunday sue
Posts: 1
[font=Arial, Tahoma]I just had a craniotomy to remove a 2.4cm meningioma from my left frontal lobe. My path to finding the tumour was from investigating headaches that I had for years. Nothing too intense but a 3/10 most days. I could relieve the headaches with ibuprofen so I didn't worry too much about it. Until this winter when the headaches got worse. Long story short they found the tumour by accident when I had a very bad ear infection. My neurosurgeon thought that it was a very good idea to operate on it and get it out. I am 4 days post operation and I feel great. I mean really good. I am walking around, no speech issues, no issues at all! Nothing. I am only taking tylenol 650 4 times a day! I have a huge incision from ear to ear but other than that I feel the best I have in years! I hope this helps all of you in finding some solutions to your issues. The worst part was the 2 month wait between finding out and the operation. I am 38 years old female in Vancouver, B.C.[/font]
26/04/2017 10:12:15 AM
Topic:
Anyone with meningioma??

Oogie
Oogie
Posts: 1
Hi All,

My name is "Oogie", and I live in Halifax, NS. I've been following the BrainTumour.ca site now for a number of years since the discovery of an initial meningioma in the spring of 2000. I've had a total of two craniotomies since - first for the removal of the first growth, and a second procedure in 2011 for subsequent growths in other areas. I found out last year from my yearly MRI scan and visit with my neurosurgeon that he would like to perform a 3rd craniotomy at some point to go after a new set, but is content to hold off and continue to monitor growth for now.

The cause for the growths? In my case, it is generally felt that radiation (and chemo?) therapy I received for childhood leukemia (40+ years in remission! ) is a large contributing factor. It is rather surprising and sad as to how much the treatment for the cancer still lingers today, so many years since its last treatment. Large reason why I advocate against childhood cancers for kids today, but I digress!

Looking forward to the discussions and contributing anyway I can.

Cheers!

O.
19/02/2017 6:11:43 PM
Topic:
Looking For Support or Information from Staff??

Kristyna
Kristyna
Posts: 7
Hello, I am curious.. I understand a great deal of meningiomas are left untreated and only observed. I have always had severe anxiety all my life. My first thoughts that I can remember as a child were anxiety. However, depression is a new symptoms that I have started suffering for about two years now. My neurologists indicates that based on the degree of calcification on the tumors I have, he feels that they have been there an extremely long time, with which I don't disagree, based on my odd childhood and the life I've led until now. However, at this stage currently, my depression has manifests itself to such a degree that I'm unable not only to contribute to society, I am unable to function day to day. That is to say, not just enjoy things I once did enjoy, but even get out of bed, eat, or take care of basic and simple needs. I am curious as every time I discuss it with my GP and other doctor's they indicate that my mood/fatigue/brain fog/memory/thought processing (and pain ie. back, neck, eye pain & headaches) are due to my brain tumors, but my neurologist was very confident that they were not causing me any psychological symptoms what-so-ever. Thus I'm at a point where I have tried, about 7 different anti-depressant drugs over 3+ years, counselling, and made requests for psychiatry, which was met with "that won't help". At the most severe times when suicide was contemplated due to mental anguish and physical pain; I did go to Emergency at the hospital, but again, was met with "what exactly would you like us to do about this?". Thus my question is, as I am uneducated in this field, what do I do about this? I am somewhat in fear of my life and am coming close to ending up becoming homeless. I did work very hard for decades, thus I have survived these past couple years. However, I'm not sure how much longer I can. Please help and thank you..
25/01/2017 3:28:27 PM
Topic:
Just had surgery and already feel much better

eight year survivor
eight year survivor
Posts: 1
I had life saving surgery 8 years ago...recently I started having seizures. My Mri's have shown a change...my oncologist does not know if it is scar tissue forming of if this is my tumor coming back. I have been off work since November 2016. I had a two part tumor in the right frontal lobe...Ogliodendroglioma/Astrocytoma stage 2 1/2 to three. Had a complete brain resection and completed 6 months chemotherapy-rat poison and six weeks radiation. I refused the additional 6 months chemo my oncologists suggested.

In the last 8 years I recovered, gained my life back with minor complications and was able to have a beautiful daughter-she is now four. It is a double edged sword having been a survivor only to have to relive these awkward unknowns again and its the waiting/the process that eats you up bit by bit. This is another journey for me that I have to figure out what is next in my life.

Kristyna... this is your journey... you need to figure out what that means for you...make it your goal to get a second opinion...put your focus on what you could change. You need to keep productive as hard as it is...this will make you feel better. Take your "stupid computer" research another neurosurgeon and get referred. Wishing you the courage and strength you need to keep pushing...your worth it!!
25/01/2017 2:08:22 PM
Topic:
Just had surgery and already feel much better

Kristyna
Kristyna
Posts: 7
No surgery for me apparently, despite having multiple tumors. Sounds like my life is over and I'm not even forty yet. I don't know what to do.. I haven't eaten in days and only gotten out of bed to grab this stupid computer. If anyone knows anything I could/can do please help.
25/01/2017 2:06:12 PM
Topic:
Anyone with meningioma??

Kristyna
Kristyna
Posts: 7
Hello, I am so incredibly depressed. I meet with the neurologist and was told that all the symptoms I was suffering had nothing to do with the tumours in my head and they won't be removed. Not even the largest one. So I don't know what to do now. I've had my life ripped away from me, then given a glimmer of hope that it might be given back, and now I feel like a donkey with a carrot tied to a stick tied to my back. Like I was chasing the treat of having a normal life back again to no resolve. Maybe only to give some people a good laugh at my expense. What do I do now. These tumor won't be removed, not even one and apparently even if they were removed nothing in my life regarding my horrible symptoms would change.. it's so sad and depressing. I've seen my GP and all he had to say, was that's too bad. I haven't eaten in days and I've only gotten out of bed to grab my computer out of extreme boredom. I really don't know what to do next.

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