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Phil B
New User
Joined: 23 Nov 2008
Posts: 8
Location: UK
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 Posted: Mon Nov 24, 2008 6:21 am Post subject: New member in a quandary |
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Before May this year I was a fit and healthy part time commercial pilot with an annual medical that never caused any problem (while holding down a full time job as a policeman as well).
Then one night I was hit by seizures, only to end up in hospital to be told that I had a lump in my head. After comparison MRIs over four months, I was told it was a Grade 2 glioma, but in a deep position between the frontal and temporal lobes. To add to this, it has the main blood vessels running through it which feed the left hand side of my brain.
What i'm getting at is that they will not operate or treat the tumour due to its location (for fear of causing damage) and will only control the seizures with drugs (which they haven't managed to get right yet).
Has anyone else had this sort of response from their neuro staff and is it worth getting a second opinion?
I could also do with a chat with anyone who has experienced major changes in their symptoms over time, both from the seizures and the other tumour symptoms.
Thank you. Phil |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 577
Location: Brisbane, Australia
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| Posted: Mon Nov 24, 2008 8:06 am Post subject: New member in a quandary |
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Hello Phil
Well I'm certain your whole world has been picked up & turned upside down with your recent diagnosis of a Grade 2 Gioma. Especially with your career as a Policeman & your part time commercial pilot interest! I'm so sorry to read yr story.
I am not familiar with Grade 2 Gioma, I do hope another member will be along soon to answer some of yr questions. In saying that a Gr 2 sounds to me like a "slow growing" tumour. Admittedly, it is in a very precarious position especially with the main blood vessel involvement.
I do know from supporting other members here that it can take some time to find a balance between anti-seizure meds & your body's response.
Can I please state that you should definitely consider a 2nd opinion, especially when yr current medical team haven't been able to offer any immediate treatment to shrink the tumour. What size is the tumour?
Glad you found our fabulous forum & welcome. I'm sure you would never have imagined you would be seeking a BT forum? Neither had any of us!
Thinking of you.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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4lindsay
Regular
Joined: 12 Apr 2008
Posts: 31
Location: Seattle
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| Posted: Mon Nov 24, 2008 10:38 am Post subject: Re: New member in a quandary |
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Yes, definately get a 2nd opinion. My daughter has a grade 2 Oligodendroglioma and had her first surgery 9 months ago. It's now regrowing and her original surgeon says he won't operate because it's too close to her motor strip. We had a top neuro oncologist and surgeon tele-conference into a tumor board meeting that was discussing her case and they feel due to the technology they have at the University of Wash. Medicine, as well as a surgeon who only operates on Oligodendrogliomas that this can be removed. We actually meet today to discuss the plan. So I'm for 2nd and 3rd opinions when necessary.
Will be thinking of you and the decisions that are in your future.
Take care! |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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| Posted: Tue Nov 25, 2008 1:35 am Post subject: Re: New member in a quandary |
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Phil, I am so sorry about your brain cancer. If you read my story, you will see that I have a long history of brain cancer. In my case, I started chemotherapy soon after the biopsy proved that it was a grade II. If they are not offering chemo to you, I would ask about it or get a second opinion. In my case, chemo did the trick and I lived 13 years before the cancer recurred.
You might also ask your medical team about the 1p/19q gene deletions. If those genes are deleted, you stand a better chance of responding well to chemotherapy.
You are in my thoughts and prayers.
_________________
Jim
Administrator and long-term cancer survivor
1992 Astrocytoma grade 2, left motor strip
2005 Recurrence this time said to be an Oligodendroglioma grade 3, same location.
http://cancerforums.net/viewtopic.php?t=2405
My Story Part 1: http://cancerforums.net/viewtopic.php?t=2528
My Story Part 2: http://cancerforums.net/viewtopic.php?p=7350
My Story Part 3: http://cancerforums.net/viewtopic.php?t=8029
Twitter: @JimHawkins54 |
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Phil B
New User
Joined: 23 Nov 2008
Posts: 8
Location: UK
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| Posted: Sat Nov 29, 2008 11:49 am Post subject: Many thanks |
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Dear all who have responded to my post.
Firstly it was a shock how many people had viewed it in so little time and even more so that three had responded.
I really appreciate your comments and suggestions and will be looking into them further asap.
Unfortunately I am sporting some nice facial scars at the moment when a loss of balance caused me to fall down the stairs. It was lucky that my head broke my fall.
Also, having described my recent changes of symptoms to my nuerologist, he brought my next MRI scan forward by four months. I had it this Thursday past.
I look forward to hearing from you all again in the future and it helps to know that i'm not the only one, although I wouldn't wish this disease upon anyone.
Take care all.
Phil |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Gillette
Moderator
Joined: 15 Oct 2008
Posts: 353
Location: Old Orchard Beach, Maine
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| Posted: Sat Nov 29, 2008 7:33 pm Post subject: Ne member in a quandry.. |
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 I am sorry- I watch my once active husband becoming much more sedentary. Between the brain tumors and the neuropathy that still remains, and winter coming to Maine, I force myself not to hover like a nanny, but am worried about falls. Good luck to you, and my prayers.
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Kathy: still loving Ben, as he rests with God. |
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Phil B
New User
Joined: 23 Nov 2008
Posts: 8
Location: UK
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| Posted: Sun Dec 21, 2008 2:23 pm Post subject: Re: New member in a quandary |
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Thankfully my latest MRI scan has returned with a result of 'no change'
My neurologist seems to think that my symptom changes are purely medication related nad has reviewed the dosages. I have yet to see them.
My othe half works in a medical centre just over the county border and has been discussing second opinions with her doctors. My GP ceretainly disagrees with going forward with a 2nd opinion.
Still....good news for another few months.
Goog luck to all of those of you out there suffering the same or worse.
Take care and try and enjoy your Christmas
Phil |
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ksplat
Super Moderator
Joined: 26 Apr 2007
Posts: 577
Location: Brisbane, Australia
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| Posted: Sun Dec 21, 2008 5:30 pm Post subject: Re: update |
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Dear Phil
Thanks for the update. This is good news certainly with no regrowth & stable tumour! I trust the review of meds will see an end to your current symptoms.
A very Merry Christmas to you & yours.
Cheers, Angie.
_________________
Brother diagnosed with GBMIV Feb 07
Treatment: Radiotherapy, Temodal, Gliadel Wafers, Dexamethasone, Keppra, Dilantin, Clexane
Went to our Heavenly Father after a 19mth battle,, 47 years young.
23 Sep 2008
http://cancerforums.net/viewtopic.php?p=19227
"Without Faith We Have Nothing" |
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Phil B
New User
Joined: 23 Nov 2008
Posts: 8
Location: UK
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| Posted: Tue Mar 03, 2009 8:58 am Post subject: Re: New member in a quandary |
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Thank you to all who convinced me that a 2nd opinion is vital. I was referred to Southampton by my GP and they have managed to achieve in one day all that Exeter did in six months.
It has now been nine months since my diagnosis and my medication has yet to work properly. In fact some of my symptoms (especially changes in personality) have got worse.
Southampton now have now lined me up for surgery in the very near future and I can not praise my new neurosurgeon enough for his honesty, professionalism and also being human.
My heart goes out to all of you who are suffering the same or worse as me and wish you the utmost success with your treatment.
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brainman
Site Admin
Joined: 13 Oct 2005
Posts: 5617
Location: Tennessee
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Phil B
New User
Joined: 23 Nov 2008
Posts: 8
Location: UK
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| Posted: Sun Apr 26, 2009 5:43 am Post subject: Re: New member in a quandary |
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I'm sorry that I didn't let you know sooner, but it was all a bit of a rush.
I have had my surgery (at last, 9th of April) and the hero of a surgeon managed to remove 80% of a grade 2, Oligodendroglioma (he thinks) in a nine hour op. The biopsies are now being tested for the chromosome deletions (which I don't quite understand). I am not required to have any further treatment at the moment, other than the usual epilepsy meds, with a review and scan in 3 months.
I am sporting a lovely scar and my head feels as if there is someone inside stirring up the rest of the grey matter, giving me nausea, headaches and general weirdness and some further seizure activity. However I am still glad that I went for the second opinion and surgery.
Maybe I will return to some form of normality soon. Has anyone else got experience of such an op and how long it took to feel better.
Thank you all for your kind thoughts and prayers
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Roman957
Regular
Joined: 22 Feb 2009
Posts: 27
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| Posted: Sun Apr 26, 2009 7:27 am Post subject: Re: New member in a quandary |
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Hello Phil,
I am glad to hear that your operation went well. Like you I am a police officer as well, living in Canada. My wife has a grade III anaplastic astrocytoma. She had a 5 1/2 hour operation last October, however not as much of the tumour could be removed as in your case, because it was not all a solid mass. As to your question about recovery, I think every case is unique and depends on the area of the brain that was operated on, general health of the patient etc. However, in my wife's case she was home in four days and fully recovered very quickly. I am sorry I can't be of more immediate help, but I wish you all of the best, and will keep you in my thoughts and prayers.
_________________
Roman |
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plugh
Regular
Joined: 18 Oct 2007
Posts: 48
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| Posted: Sun Apr 26, 2009 3:44 pm Post subject: Re: New member in a quandary |
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| Hello Phil - glad you were finally able to get the surgery perfromed and can start recovery. I had 90% of a Gr 2 Oli removed 2 Aug 2007. Mine was in a much easier position to get at than yours and surgery was about 4 hours I think so YMMV. My recovery was quite rapid. I was told to get exercise daily in the form of some walking and was able to do some cycling within a month. I started playing soccer again about 2 months after surgery (I'm 53). The hardest part was a general lack of energy for me and, while I was able to get back to exercise, it really took me a full 10 months before I rather suddenly felt that I was back to normal activity wise. On a watch and wait - MRIs every 4 months. I have some minimal re-growth shown on the most recent MRI (2 mms) but thankfully have no defects from surgery and seizure activity completely stopped post surgery. The huge scar from surgery has all but disappeared though the surgeon had great trouble hiding it under what little hair I have - a true chrome dome. Knowing the status of the deletions is useful - if the genes are deleted it means you can be more responsive to chemo should you ever have to go there. Based on what I have seen on this though (from Jim especially) I'm not sure the difference is huge but there is some slightly better outcome from chemo. Others will have better information on this I'm sure. Best of luck. |
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