January 2019
1 Kudo
Hi Dee, My partner was diagnosed with a grade III oligodendroglioma in March 2013 following a severe tonic clonic seizure. No previous symptoms, just a super fit healthy 40 year old man. The first neurosurgeon we had was vague and eluded questions - we should have taken heed of the warning bells. He was ridiculously conservative in his treatment recommendations and performed what turned out to be a pathetically minimal resection, but as he determinedly evaded all questions in relation to the extent of resection, we remained ignorant of this critcal fact. My partner entered into PCV chemotherapy cycles following surgery .... PCV is an old regime and my partner experienced severe nausea and fatigue, but he pushed through, determined to finish the cycles. All was seemingly going well until the 12th of August. 3 rounds of PCV chemo down, one to go, and no serious complications. He was very nearly at the end of the 6 month driving ban that resulted from the first single seizure ... just 3 weeks to go. He was looking forward to regaining that freedom and independence more than anything else. Life seemed to be returning to a semblance of normal. Then on 12 August he had an MRI that reported new multi foci changes. The MRI referral had only been written by the oncologist at our insistence, because it had been 3 months since the last one. As far as we know, none of the specialists we were seeing (and who got a copy of the MRI report at our request) reviewed the MRI or took note of the findings, even the referring oncologist. Then on 20 August out of the blue, he had a very serious seizure, or possibly series of seizures while he was working at home alone. We saw the neurosurgeon the following Friday - he was crushingly blasé. He failed to mention the MRI changes, and only reluctantly discussed them when we brought them up. He basically said nothing more could be done, and we would just have to get used to the seizures. He was dismissive, vague and deliberately evasive. So we finally dumped him in disgust. We saw a new neurosurgeon the next Monday. From the very first consultation, we realised what a huge mistake the previous neurosurgeon had been. The new neurosurgeon was shocked at how minimal the first surgical resection had been, and said all visible tumour could and should be removed. He took one glance at the MRI and said there was absolutely no reason not to remove all visible abnormality. This is in stark contrast to the first surgeon, who had said that if he took any more out, it would impact the motor strip and eloquent cortex, and that my partner would lose speech and could lose "an arm and a leg". We promptly ditched our entire treatment team, and started again with the new neurosurgeon, a new oncologist and a new radiation oncologist. Best decision ever. The 2nd surgeon was confident and performed the surgery 4 days later, without awake craniotomy. He removed pretty much the entire left frontal lobe, from skull to midline. There was ~140 cubic cm of tissue sent to pathology, The improvement was immediate - in fact my partner went back to work in his job 3 weeks later, completely normal in speech, cognitive function and motor function. 4 weeks after surgery, the new Oocologist and new radiation oncologist started him on 6 weeks of radiation in combination with concomitant Temodar chemotherapy. The radiation wasn't anywhere as bad as we expected. Sometimes he would see flashes of colored light when the radiation hit areas of the brain responsible for visual processing. The mask sometimes put pressure on his eyes, so his sight was disturbed for a while afterwards. The radiation treatments made his skin feel tight, and made his brain feel buzzing and stirred up like the start of a headache. He was pretty irritable and short tempered for the rest of the evening, although the 3 hour drive home from Brisbane every night didn't help that. He found that he felt less effect on his skin from the radiation when he switched from normal shampoo and conditioner to using only Johnson and Johnson baby shampoo. He did get headaches and vomiting (presumably from brain swelling) in the third week, so he was started on dexamethazone, which stopped the pain and vomiting within about 48 hours. His hair thinned (but didn't completely disappear) in two patches - one large area on the left forehead, and a small round patch on the top at the back of his head. It grew back reasonably quickly after radiation finished and there is no sign of the hair loss now. Temodar chemotherapy was just taking tablets. My partner had no side effects or problems at all throughout the entire treatment. Then .... life went back to normal. No side effects, no problems, no seizures. Just peaceful normal life for 5 and a half long years, punctuated only by 3 monthly MRI scans that showed no recurrence. This all changed yesterday - a routine MRI showed up a recurrence, on the margin of the old resection scar. And so, we go to battle once more. Don't let anyone fool you - gliomas are called "recurrent brain cancer" for a reason. In our experience, your best option is to go hard with every treatment available to you, hit it from as many angles as you can. Don't just ask questions - demand answers. Google your drugs and ask should the levels be monitored regularly. Insist on appropriate tests, reports and treatments. Follow up on reports yourself. Ensure your Dr's actually receive and review them. If you don't feel comfortable with your Dr's, if they are evasive or dismissive and you don't get the answers you ask for, get a second opinion. Don't be afraid to sack the whole team and go elsewhere. Good luck - I wish you every success. Jen
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December 2013
Well things were seemingly travelling really well for us until the 12th of August.
3 rounds of PCV chemo down, one to go, and no serious complications. He was very nearly at the end of the 6 month driving ban that resulted from the first single seizure ... just 3 weeks to go. He was looking forward to regaining that freedom and independence more than anything else.
Life seemed to be returning to a semblance of normal.
Then on 12 August he had an MRI that reported new multi foci changes in areas very distant from the original tumour - one on the other side of his brain in the temporal lobe.
The MRI referral had only been written by the oncologist at our insistence, because it had been 3 months since the last one.
As far as we know, none of the specialists we were seeing (and who got a copy of the MRI report at our request) reviewed the MRI or took note of the findings, even the referring oncologist.
Then on 20 August out of the blue, he had a very serious seizure, or possibly series of seizures while he was working at home alone. It had been almost 6 months since his last seizure, and we had become over confident and complacent. I failed to ring from work during the day to check on him.
He was not found until my son returned home from school and discovered him with head injuries and covered in blood and vomit. He had aspirated stomach contents into his lungs. He was in poor condition, tachycardic, and had been in this state alone for at least 5 hours.
My son couldn't find the home cordless phone, so he ran out into the street in front of a passing car, and got the driver to call an ambulance.
At the base hospital he was unresponsive, his oesophagus and trachea were burnt by stomach acid, and his blood oxygen level was not great. He had head injuries, and a chest x ray showed he had already developed lung inflammation which progressed into infection over the next 24 hours.
Disappointingly it emerged that his Dilantin levels were very low - certainly not in the therapeutic range. No one had been monitoring his Dilantin levels, or bothered to mention to us that they needed to be monitored.
When he came home 48 hours later, he still had some periodic cognitive and memory deficit and required supervision.
Emotionally he was fixated on one thing only - he would now not be allowed to drive for 12 months.
After returning home his cognitive function worsened, he wasn't eating and I panicked. He had lost 7kg, and was cycling between fully cognitive periods, and periods where he was confused and disoriented.
I tried to get him readmitted to a local private hospital, but they discharged him almost immediately.
I was basically told that he was nearing end stage, and that I should expect a decline in cognitive function. My protests that he was postictal, not end stage were gently dismissed. The staff insisted on recording his condition as GBM, despite my very clear insistence that he had a grade 3 oligo.
The oncologist rang that night - he had FINALLY gotten around to reading the MRI report from August 12 (although he hadn't looked at the images because they wouldn't load on his laptop?!). He stated that based on the new multi focal finding on the report, we were not dealing with an oligo at all, and he was of the opinion that it must be chemo refractory GBM.
We saw the neurosurgeon the following Friday - he was crushingly blasé. He failed to mention the MRI changes, and only reluctantly discussed them when we brought them up. He basically said nothing more could be done, and we would just have to get used to the seizures.
He was dismissive, vague and deliberately evasive.
He also took no responsibility for the fact that the Dilantin levels had not been monitored by any one - not one of the many Dr's and specialists we had been seeing had mentioned that Dilantin levels need to be monitored. As the neurosurgeon had prescribed the dilantin, ultimately I feel he had the responsibility to at least advise us to ensure the levels were monitored.
He did recommend a PET to investigate the MRI changes (after we mentioned them!).
As soon as we left the consultation, we made an appointment with the GP, with the aim of getting a second opinion from another neurosurgeon.
The PET was the following Friday, and we saw the new Neurosurgeon the next Monday.
From the very first consultation, we realised what a huge mistake the previous Neurosurgeon had been. The new Neurosurgeon was shocked at how minimal Ross's first surgical resection had been, and said all visible tumour could and should be removed. He took one glance at the MRI and said there was absolutely no reason not to remove all visible abnormality.
This is in stark contrast to the first surgeon, who had said that if he took any more out, it would impact the motor strip and eloquent centre, and that Ross would lose speech and could lose "an arm and a leg".
We promptly ditched our entire treatment team, and started again with the new Neurosurgeon, a new Oncologist and a new Radiation Oncologist.
Best decision ever.
The 2nd surgeon was so confident, he performed the surgery 4 days later, without awake craniotomy. He removed pretty much the entire left frontal lobe, from skull to midline. There was ~140 cubic cm of tissue sent to pathology, and this time the histology came back all grade 2 oligo. This has made us hopeful that the first surgery caught all the grade 3 tissue area. Obviously we know that the damn thing will come back eventually, but removing all visible tumor in the first place seems sensible!
The improvement was immediate - in fact he went back to work in his job 3 weeks later! He is now completely normal in speech, cognitive function and motor function.
The 4 week post surgical MRI shows little except normal looking brain and a really, really big hole where the left frontal lobe used to be.
4 weeks after surgery, the new Oncologist and new Radiation Oncologist started him on 6 weeks of radiation in combination with concomitant Temodar chemotherapy.
We would both go to work at 7.30 in the morning and then drive down to Brisbane in the afternoon for radiation, which was usually at about 5.30pm. The radiation wasn't anywhere as bad as we expected. Sometimes he would see flashes of colored light when the radiation hit areas of the brain responsible for visual processing. The mask sometimes put pressure on his eyes, so his sight was disturbed for a while afterwards.
The radiation treatments made his skin feel tight, and made his brain feel buzzing and stirred up like the start of a headache. He was pretty irritable and short tempered for the rest of the evening, although the 3 hour drive home from Brisbane every night didn't help that.
He found that he felt less effect on his skin from the radiation when he switched from normal shampoo and conditioner to using only Johnson and Johnson baby shampoo.
He finished the 6 weeks of radiation last Tuesday, and so far he hasn't had any fatigue or serious complications.
He did get headaches and vomiting (presumably from brain swelling) in the third week, so he was started on dexamethazone, which stopped the pain and vomiting within about 48 hours.
His hair thinned but didn't completely disappear in two patches - one large area on the left forehead, and a small round patch on the top at the back of his head.
Since radiation he has developed a slight tremor in the right hand, and very slightly in the right hand side of his face, which is so mild he hasn't noticed it himself.
He still gets a stirred up feeling in the brain when he gets tired.
We were told that the radiation symptoms usually peak 10 days after radiation ends, which means he should feel the worst at the end of this coming week.
The dexamethasone has caused acne all over his body, but now that the radiation is over, he weaning is off it and will be free of it in 2 weeks.
Other than that, he looks and acts completely normally other than being somewhat easily annoyed, and he is still working part time.
He has a break from treatment now until January, and has his next MRI on December 24 to get a post radiation baseline.
In January he starts 6 cycles of intensified Temodar Chemotherapy.
Overall, I desperately wish I had gotten a second opinion earlier, but all said and done I am deeply thankful to our current medical team.
The bright spot on the temporal lobe has not developed into anything, and the Neurosurgeon is of the opinion that it is nothing to worry about. He says he sees a lot of "unidentified bright spots" that don't turn out to be anything.
Lessons learned;
Don't just ask questions - demand answers.
Google your drugs and ask should the levels be monitored regularly.
Insist on appropriate tests, reports and treatments.
Follow up on reports yourself. Ensure your Dr's actually receive and review them.
If you don't feel comfortable with your Dr's, if they are evasive or dismissive and you don't get the answers you ask for, get a second opinion.
Don't be afraid to sack the whole team and go elsewhere.
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April 2013
First dose of Lomustine today. So, it begins. Everything else feels sombre but so normal - the calm before the storm.
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April 2013
A summary of my partner's events to date;
40 year old, slim, fit and healthy IT Engineer, cycled 10km/day, non smoker, light social drinker.
Wednesday 06/03/2013
Tonic clonic seizures during the night, about 1 hour after going to sleep. Taken by ambulance to Base Hospital, barely conscious.
Confused and unable to recognise loved ones, unaware of surroundings and unable to remember events.
Diagnosed as having had a stroke.
CT scan interpreted 3 different ways by 3 different Dr's, told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc
Thursday 07/03/2013
MRI ordered by stroke specialist to determine the extent of his "stroke" reveals tumour, Stroke specialist states he knows nothing about tumours and has no idea what it is.
Phone call to my previous employer, a cardiology specialist and general physician, results in immediate transfer to private hospital and referral to see Neurosurgeon the next morning.
Friday 08/03/2013
Consultation with Neurosurgeon. Believed to be low grade glioma (although the "low grade" later turned out not to be the case).
Surgery booked for Wednesday.
Monday 11/03/2013
Transferred to Greenslopes, Brisbane.
Tuesday 12/03/2013
Functional MRI to map brain function prior to surgery.
Wednesday 13/03/2013
Partial resection by awake craniotomy, Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.
Sunday 17/03/2013
Discharged from hospital looking and feeling completely normal except for surgical scar. Taking anti-seizure and blood pressure medications.
Tuesday 26/03/2013
Follow up appointment, Neurosurgeon.
Finally have a diagnosis - Grade III Anaplastic Oligodendroglioma with 1p and 19q loss.
Neurosurgeon will not be drawn on life expectancy, extent of resection or future progression of the cancer. Vaguely indicates that RT should be undertaken, indicates that he believes chemo is a waste of time.
Neurosurgeon indicates that he will direct the referring Dr to write oncology referral.
No further appointments made with Neurosurgeon .... set adrift.
Wednesday 27/03/2013
Saw referring Dr for referral to oncology - he rang Neurosurgeon who assured him that the referral had already been sent to oncology by Neurosurgeon.
Referring Dr confirms what google had told us - this type of tumour generally responds very well to chemo.
Referring Dr indicates life expectancy of between 2-10 years.
Friday 05/04/2013
No contact from oncology - rang to see if referral had arrived - no referral has arrived.
Monday 08/04/2013
Rang Neurosurgeon about oncology referral - told by secretary that referral is to be done by referring Dr, not Neurosurgeon. Told her that referring Dr is away - reply; it didn't matter.
My partner feels completely well and normal, returns to full time work.
Monday 15/04/2013
Referring Dr returns from holiday.
Rang referring Dr and said no referral has been done for oncology.
No histology has been sent to referring Dr, so chase occurs to locate the correct pathology company to obtain histology.
Referral immediately faxed to oncology and appointment for RT consultation made for next day! Chemo appointment made for Thursday. Finally getting somewhere!
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April 2013
Hi Krystal,
You sound more positive today, which is great!
The forum sounds absolutely awesome, hopefully you will get bucket loads of contacts and information, and make contact with people in exactly the same situation and going through the same treatments.
It's promising that you can keep going with your subjects - something non-cancer related to distract you away from the constant thoughts about treatments and appointments.
The Uni should have a free student counselling service too, which could be your fall back when your psyc is unavailable.
In regards to research, I've found that some of the best leads are in the "this paper cited by the following articles" list at the end of the paper, because generally these will be more recent, up to date papers which have followed on from the older paper.
We FINALLY have our first oncology consultation tomorrow, a full month after the surgery - grrrrrr. We had to chase and hound to get the referral, with the neuro telling the GP that the referral had been sent, and his receptionist admitting that it hadn't - this went on for 2 weeks until we got a different specialist to do the referrals after having to hunt down the histology report from the pathology company.
Needless to say we are looking for a new neuro. A friend who works as an anesthetist has recommended Brizbrain, so we will seek referral to there for follow up.
Radiotherapy and chemo to come - not sure what to expect, but at least with the referral roadblock removed, things are on track again.
Take care of yourself.
Kind regards,
Jen
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April 2013
Hi Krystle,
I can really relate to what you are saying about oncologists being vague. I suspect that it's because there is such a wide variation in every patient's response to treatment and the progression of their cancer, that the specialists really don't want to offer an opinion at all. Sometimes it helps if you corner them with "I understand there is a lot of variation, however in the majority of cases, what is the....(insert parameter).
I have found that you have to be really, really "proactive" about treatment and follow up, and be tenacious to the point of aggression. Every term you hear fall from the medical staff's lips, google it. Read the patient chart. Listen to the nurses talking in the hallways. It was only by listening in on a nurses' conversation that I found out my partner had a brain tumour - nefarious I know, but it was a long wait until the specialist consult to be told officially....
Google and read research papers on various treatments and treatment outcomes for your Mum's specific cancer.You will end up with dozens of questions as a result - then drill them down to get answers on those questions.
In regards to not wanting to get out of bed, leave the house, or do any of the things you used to enjoy, please see someone about this. I know that it feels wrong to be doing normal things when this terrible event is happening to your Mum, but you can't help her cope if you are crippled by depression. Please speak to your GP and get a referral for some support so that this doesn't seriously affect your health and your relationships.
You should probably speak to your Program Coordinator/Convenor/Head about withdrawal from your currently enrolled subjects - the Uni should permit late withdrawal without financial and academic penalty if you have a good reason that arose after the census date. Give yourself that one allowance, because you are unlikely to well if you are a long way behind for the Semester.
Take care of yourself Krystal. It probably doesn't feel like it, but remember that eventually this time too shall pass.
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April 2013
Hi Klast,
Thank you very much for your post - your situation sounds very similar to ours! I hope to be able to swap notes and information along the road of our journey.
We are now 27 days post surgery yet my partner has not been able to have an oncology consultation yet alone start oncology treatment as the appropriate referral has not been sent by the neurosurgeon to the oncology department as promised.... an ominous reflection perhaps of the issues discussed above by Garry.
Thank you very much for your information Garry. As you recommend, we will now push very hard to get the seemingly stalled process back into motion. It is very disheartening to find that without aggressive promotion of their own treatment patients can end up in directionless eddies in the stream. I think it is marvellous that you intend to write a book about your experiences in the health care system, and the challenges and pitfalls people need to be aware of.
Thank you again for your posts and information
Kind regards
Jenny
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March 2013
Hi Melanie,
Thank you for sharing your thoughts and experiences.
My partner also has a glioma, anaplastic grade III, diagnosed at the beginning of this month, so we are just starting out on this journey.
My children are older, and my partner is their Stepdad - their biological Dad died suddenly (in an accident) when they were young.
My youngest was 4 at the time his biological Dad (Ben) died - he is now 14 and holds a deep guilt that he cannot remember Ben's face. All our family videos concentrate on the kids, with Ben rarely making it into the frame, only his voice from the sidelines captured - oh the regret! If only..... so many 'if only's.
Now they have to face their loving Stepdad's illness.
The hardest part for me losing Ben was the survival guilt, so I understand how becoming the sole owner of the house is a sickening feeling.
The hard reality is that you must provide the best you can for yourself and your children, which means making financial arrangements.
It's not giving in - it's being responsible. That is the burden we now carry - while others get to avoid reality in their optimism and miracle talk, we get to shoulder the responsibility of planning a path through the nightmare, and easing the worry for everyone else around us.
Eventually though, this time too will pass, one way or another. Photos, videos, memories and bills will be all that remain.
If you manage to capture some good moments in those images, you can influence how your children remember this time for the better.
I hope the scan has the best possible outcome. From what I can gather, gliomas can be held at bay for many, many years.
Kind regards,
Jenny
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March 2013
Hi,
I am just starting out on the cancer journey with the love of my life, my marvellous partner, 40 years old and until 3 weeks ago very fit and well.
He suffered tonic clonic seizures during the night of 6 March 2013.
The seizures were severe and prolonged, and he remained in a confused state for over 2 days. He didn't recognise me, and didn't know where he was. Initially we were told he had suffered a stroke.
CT scan was interpreted 3 different ways by 3 different Dr's, and I was told he had/hadn't had a brain bleed, had/hadn't developed a clot, should/shouldn't be started on aspirin etc
MRI 7 March 2013 revealed a brain tumour - suspected low grade glioma.
Partial resection by awake craniotomy 13 March 2013 Greenslopes Hospital, Brisbane. The hospital and staff were excellent and the surgery itself was without complications and healed beautifully.
Discharged from hospital Sunday 17 March 2013. My partner looks and feels completely normal, except for some mild fatigue and a shiny new scar.
Diagnosed with Grade III Anaplastic Oligodendroglioma with 1p and 19q loss, 18 March 2013.
We had one follow up appointment with the neurosurgeon, who wouldn't be drawn on life expectancy, and seems very reluctant to give any information or opinion at all about the future, other than to indicate that radiotherapy should be undertaken.
I am of the understanding that the neurosurgeon will write back to the referring Dr and recommend that the referring Dr should now refer my partner for radiotherapy.
We have no further follow up appointments with the neurosurgeon at this stage and are feeling pretty adrift. The only information we have on anaplastic gliomas, treatment and prognosis is what we have found on the internet.
The neurosurgeon was very negative about chemotherapy and more or less indicated it was a waste of time, although all of the information on the internet seems to indicate otherwise, particularly with 1p and 19q loss.
As newcomers to the journey, we are at the information gathering stage, and trying to figure out what the next step is.
Cheers,
Jen
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