My partners first signs of GBM - what were other readers?

jenugl

My partner Andrews first symptoms were - about 5 or so weeks before diagnosis he started finding it difficult to read and had to stretch his arms out to read things, then he started to complain about slight headaches on his right side mainly in the morning, we had not long before this bought new firm pillows and he thought it might have been from this (he said it felt like a slight pressure - like wearing a tight fitting hat but only on one side). On the friday afternoon before he was diagnosed he had strange feeling when he was a passenger in a truck - he couldn't understand why the gear stick etc was on the wrong side and some other odd thoughts which lasted about 30mins - then when he got back to work he smelt a very offensive and strong smell (which he put down to being near the sewage works) that night he was in bed with a severe headache - went to Drs on Sat morning and he thought it might be migraines (Andrew is 44yrs and usually never suffers from any sort of headache) Sunday Andrew was mowing the lawn and apparently he had some odd thoughts that someone was telling him that he was mowing the lawn the wrong way. Monday was a public holiday on Tues morning he went back to work (works on the roads) and he couldn't see his mates that were only just up in front of him and he aslo was losing his balance - his boss drove him back to the main office and so we went back to Drs that afternoon and he ordered a CT scan. We looked at scans that night at home and being the medical experts that we are (NOT) I thought they all looked good and actually commented that we could see his ear (which was the tumour - looked like an ear to us / kidney shaped). We were back at Drs on Wed for results (GBM IV) and Andrew was sent straight to hospital. At hospital that first night I had taken him out in wheelchair and he asked me what the horrible smell was - I couldn't smell anything. I thought nothing more of it until we were speaking with the neurosurgeon and he said that they are brain seizures (apparently people who have these describe the smell the same way but don't show any phisical signs). Had operation the following Wed after swelling was under control and then radio/chemo and then chemo. Because of the way Andrews brain was working he didn't tell anyone about the odd thoughts and strange smells so this is why his Dr at first thought it might be migraines. Looking back once diagnosed a few things fall into place. Andrews driving ability was questioned by myself a couple of times (pulled out in front of cars etc) and speaking with his work collegues we found out that he also done some strange things there as well although at the time they didn't think they were significant. There were also times of de-ja-vu (is that how you spell it) and multi-tasking was an issue for him. Anyway that sort of describes the lead up for Andrew to his diagnosis. Sorry for long post. Love to all. Jen

ksplat · Posted: Thu Jul 05, 2007 9:04 pm Post subject: My Brothers' symptoms

Dear Jen, Thnx 4 the info on Andrew. What size was his tumour when diagnosed? There must have been some huge pressure in his head to have so many symptoms. It's great to know we have your support from our own beautiful state - Qld! My Brothers (Mark) symptoms were 1st noticed on the job site (he was a solid plasterer). Up on scaffolding he felt heaviness on his L leg & thought he's caught his shorts on something. He looked behind & saw nothing. He acted on it about 10 days later when he felt the same sensation at work & this time the heaviness went right up his L arm. He made an appt with his Dr as was worried about stroke (my father was permanently disabled from a stroke at the young age of 56). Saw Dr & went for brainscan. Dr noticed something on brainscan & sent him for chest xray. Thought he might find a secondary tumour from melanoma removed 5 yrs earlier. Chest xray all clear then sent for MRI. Mark phoned on 1st anniversary of Dad's death to tell us he had a brain tumour. Next week had biopsy done (tumour less than 1cm) & 3 days later was given the awful news. We've been on a roller coaster up until just recently. His tumour grew very aggressively & he was having grand mal seizure by Apr whilst taking Temodal & doing radiotherapy. Ended up in hospital a couple of times after suffering seizures at home. Boosting steroids didn't make a difference. Radio & chemo Dr told him after 4 1/2 wks of therapy nothing more we can do for you except treat seizures. Referred back to surgeon for debulking in May. Unable to weight bear on left leg by this stage. Surgery was 5 hrs-surgeon advised didn't get all of tumour saw the centre of tumour & still alive & active. Mark has been paralysed down L side since surgery. In hospital for 7 wks. No cancer treatment in this time but recent MRI showed no sign of tumour! Fairly amazing for active tumour to melt away. Mark has been taking a herbal juice every day since debulking. It's from WA from an exclusive plant extracted by local indigenous person. Heard about "juice" from an old school mate who now lives in Perth & has seen his neighbour in remission from cancer after drinking "juice". We also have lots of faith & have prayers being said all up & down the east coast. Priests, Nuns, Parishes, family & friends. Also he's been blessing his head daily with water from Lourdes, France. Brother is home now & having rehab 2 days per wk hoping to regain sensation/movement on L side. He's only 46 with 3 adult children & 2 baby grandchildren. So much ahead of him. You know how it is with Andrew & his GBM. What an insidious disease. I pray our Men will keep fighting the good fight against GBM. Hope to talk again soon. Cheers Aussie Angie.
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Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

jenugl

Hi Angie, Andrews tumour was 4cm at diagnosis. There was alot of odema and it was right temporal - which apparently is your reading/comprehension etc side. (Brainman - Jim plse correct me if I'm wrong - thnks) There were alot of symptoms when you look back, but until the last couple of days everything didn't seem too unusual, but of course I didn't know all the facts until after. The brain tumour was completely removed and surgeon said he could only see normal brain tissue left. His treatment afterwards (radio/chemo) is to try and kill / slow down remaining cells that are in brain. Where abouts was Marks tumour? It's amazing how the brain works and what parts of the body are affected depending on where tumour is. I feel we are very lucky compared to alot of other brain tumour sufferers as Andrew is going so well at the moment. No obvious side effects to other people. He does now have to wear glasses when reading - his left eye was affected and some trouble with multi-tasking and concentration. But to people that don't know what he has been through these aren't obvious. I havn't been practicing religion since school days but since May last year I am leaning more and more on prayer. Good friends of ours from down your way also have got alot of people saying prayers up and down the coast and also overseas which was and is still terrific. I will pray for your brother along with my prayers for Andrew and all who are struggling with this disease. Love to all. Jen

ksplat · Posted: Thu Aug 02, 2007 3:25 am Post subject: Symptoms of GBM

Dear Jen, I am finally replying to yr last. My bro's tumour is a Posterior right frontal lobe GBM IV. Under 1cm @ diagnosis. He has had a follow up MRI this week & won't get the result until his neurosurgeon returns from holiday next Monday. We are keeping everything crossed for the best possible news again! How's Andrew going? I trust all is well with you both. Cheers, Aussie Angie.
_________________
Brother has GBMIV
Diagnosed Feb 07
46 Yrs young!
http://cancerforums.net/viewtopic.php?p=19227

"Without Faith We Have Nothing"

brainman

Hi Jen, by now you have probably read my story (link is in my signature block) and know that my symptoms where very different. My mother who died almost 9 years ago due to a GBM also had very different symptoms... different from mine as well as different from Andrew's. Very likely these differences are due to the location of our cancers.

I continue to pray and to keep Andrew and you in my thoughts and my prayers. You are a valued member of this intimate community of people who are in someway impacted by cancer.
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Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

jenugl

Hi Aussie Angie & Jim. Thanks for your replies. No wonder a lot of people think they might have a brain tumour when they don't. There are so many different symptoms that affect people which could also be caused by other things as well. Like I stated before, we thought Andrew's first symtoms were eyesight getting bad (if only) just goes to show the human body is a very complex thing. Anyway - I pray and hope your brother's results are good Angie, bad timing for the Dr to be away - but everyone needs to recharge their batteries (especially surgeons - we don't want them tired when they are operating on our loved ones). Andrew had his MRI last week and all was good again Very Happy

there is a very feint enhancement that they don't think is tumour, apparently it was there at his last one and hasn't changed(keeping fingers crossed) he will have another MRI in 3 months time unless he develops signs before hand. He is feeling quite good but fighting off a cold (lucky he had a flu shot not long ago, which I think is helping). Stay strong both of you and I pray that everything goes your way. Love to all. Jen

brainman

Hi Jen,
After reading your last post, I just have make one comment... after years of actively studying my own experiences with brain cancer and brain cancer in other, I am truly convinced that the brain is an EXTREMELY complex organ. It is awesome!!! I have a great respect for neurosurgeons.
_________________
Jim
Site Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendoglioma grade 3, same location.
My Story Part 1: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 2: http://cancerforums.net/viewtopic.php?t=8029
Blog http://jimhawkinsport.blogspot.com/

michelesmith · Experienced user Joined: 28 Oct 2005 Posts: 72

Definitely everyone is different. My dad was 56, very healthy and active--heavy machinery mechanic. Again looking back we saw some things that we now attribute to the tumor as far as a month before diagnosis.He would occassionally use the wrong road or give the wrong directions, but for the most part no symptoms until the week and really 3 days before. He had been digging a ditch and using an auger on their land and mentioned that he couldn't figure out how to work it. We thought it odd because growing up in the country and using this type of equipment all of his life was typical and just because this one was a rental he should not have had trouble getting it started. But my brother started it up and they worked all day. Dad acted a little 'tired or something'. We couldn't put our finger on it. Mom thought he was dehydrated. As the next day came to a close I was beginning to think he had had a stroke the previous day. The temps had been over 100 F and they had been doing a lot outside the last several days. I told mom we needed to make him an appointment for the next day. I also realized that my dad was still reading the same book after 3 days of reading constantly each evening (he was a voracious reader and usually finished a typical western book in less than a night). Later on we realized that he wasn't reading at all--he couldn't and he knew something was wrong but he couldn't figure out what it was either. The next morning he was semi conscious. We rushed to the hospital and he was diagnosed that afternoon and our journey with the beast had begun. His tumor was well over 5 cm at diagnosis--firmly embedded in the front left lobe with many tentacles already developed and inoperable. The one comment all of the doctors kept saying was they couldn't believe he was still doing all he was up to that point. For the family it made us start second guessing how come we didn't notice things sooner and second guess if we had found it sooner if the result could have been better or prolonged. Now I don't think so. I think we did everything we could and I don't think we should have known sooner. None of his friends or customers ever thought anything was wrong. It wasn't a case of denial it was a case of he was not showing symptoms until the tumor was well embedded and had grown quite a bit. I think it is actually a blessing that we made it that far with some "normalcy". It made the worse part a shorter journey. I wish all those still on the journey peace.

Michele
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Michele

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