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Posted: Fri Feb 13, 2009 10:08 pm
by kenobewan
I believe that any good specialist would realise that people with so much at stake would be seeking 2 or more opinions.

Too many patients spend too much time thinking about this type of thing in my opinion. If anything s/he would arouse my suspicions if they did get annoyed - why are they taking this personally?

Sure I felt a little guilty when the second oncologist I saw, unbeknown to us, shared rooms with the first. But I felt better when I got the right standard of care :).

Posted: Sat Feb 14, 2009 7:38 pm
by alley
Thankyou all for your advice. I do hope that the neurosurgeon does not get pissed off and Ken like you said hopefully he understands that and realises that I have done and will continue to do everything in my power to get Jus the best care that we have available and if that means going to see more doctors then that is what I will do.

On a completely different note I wanted to share some very sad news that I received today from one of my girlfriends. Her mother in law has just been diagnosed with grade iv GBM and was operated on a few days ago. They found it whilst on holiday in Canberra so for the moment she is stuck in another state. I must say that I am devastated by her news. I know that this may sound ridiculous but sometimes I feel that having a brain tumour is almost a fashion accessory as since Jus has had regrowth so many of my family and friends are telling me about someone they know or are related to who has/had a brain tumour. (I have a very warped sense of humour and god knows it certainly helps in nursing!)

Currently we are awaiting the pet scan results which we will receive when we see the new neurosurgeon sometime in the next few weeks so for me it will be a tense and stressful time. I am so scared that it is going to show up stuff that we never knew was there but on the other hand I would love it if it showed that things are not as bad as first thought. (Wishful thinking I know but have to stay positive.)

Once again thankyou all for sharing your very personal journeys with me as they give me so much.


Posted: Sun Feb 15, 2009 1:27 pm
by montaldi
alley wrote: but sometimes I feel that having a brain tumour is almost a fashion accessory as since Jus has had regrowth so many of my family and friends are telling me about someone they know or are related to who has/had a brain tumour. (I have a very warped sense of humour and god knows it certainly helps in nursing!)

I sort of understand what you are saying. We watched a movie the other day on paytv, I think it was Chuck and Me? Or something stupid like that. Anyway, they were talking about their lives saying how things weren't too bad, at least there lives weren't like so and sos who had just been diagnosed with an inoperable malignant brain tumour and given a week to live. It was not a funny line in the movie for us in the least, and we had to stop watching it after that.

Although it has been a good way to get rid of pesky telemarketers. I have had one chasing me for a little bit, wanting to give me financial advice. I haven't had the hear to say F off up until now. He kept badgering me, in the end I said, look, my husband is sick. He has an inoperable malignant brain tumour which is terminal, we don't want to take your financial advice right now. He didn't know what to say, stumbling and stammering. But he got off the phone from me pretty quickly! His last words "hope he gets better soon!!"

I'll be thinking of your family for this upcoming scans. Our next one is on 27th of Feb. Fingers, toes and everything in between crossed.

Amanda XX

Posted: Fri Mar 13, 2009 5:14 pm
by alley
Hi all, had our second opinion today and he basically said the same thing our original surgeon said. He was very pleasant about the whole thing and said that we are doing the right thing in seeking out the very best that we can find including getting second opinions. He said that Jus is unusual in that most people who have a low grade glioma usually don't have a reccurrence and he felt that J will need further surgery and he would give him temodal post surgery.

Although there was no new information we somehow felt a little better about the whole journey. I just feel that Jus is meant to somehow be here as not only has he had the surgery once already but he developed anticonvulsant hypersensitivity syndrome whilst on tegretol/dilantin and could easily have died post surgery from that so something tells me he is meant to be here. I have also contacted our original surgeon and he will r./v the latest mri and let us know whether we need to come and see him earlier than the appt time in May.

Have not been on this forum for a while as have had to deal with the day to day realities of life with 2 small children and working!!!! Sometimes I can't believe that my beautiful husband has this time bomb in his head as he is so well. Together we will beat this I just know it.

Thanks for listening

Posted: Sat Mar 14, 2009 5:55 pm
by kenobewan
That's not exactly true about low grade tumours not reoccurring. Does either of these neurosurgeons specialise in brain tumours? Or did he mean reoccurrence without progression?

At least you are feeling a bit better about the situation and that is one of the benefits of a second opinion. Is he now on keppra? I have just switched from dilantin and the difference is night and day.

It's great to hear you have such a great attitude, keep up the good work!

Posted: Sun Mar 15, 2009 6:55 am
by alley
Thanks Ken for the encouragement. If I may ask what is Keppra? Currently he is on no meds at all but obviously will need to take anticonvulsants post surgery whenever that may be.


Posted: Sun Mar 15, 2009 9:55 pm
by kenobewan
Keppra is one of the newer range of anticonvulsants. It is not necessarily any more effective, but has far fewer side effects; if any. One of the main side effects is supposed to be affective problems, but this was only 3% above the control group.

They usually only offer you Keppra after the others. If I were in your position I would ask for it first especially when the other two have been toxic and assuming he does go back on an anticonvulsant. Has he been having seizures since going off the other two?

Posted: Mon Mar 16, 2009 7:09 pm
by alley
He has never had a seizure (touch wood) however I am conscious of the fact that he may well have one in the future particularly with further surgery and also with the formation of scar tissue. Sounds like we might ask for Keppra as he definitely can't have Dilantin or Tegretol and that really only leaves Lamictal and Epilim.

Posted: Tue Mar 17, 2009 10:21 am
by kenobewan
The fact that he has never had a seizure is good. While they may wish to use it preventatively, I would be surprised if they would want him on one permanently.

Once you have had a seizure I can understand having to have it. I would be interested to read up on the prophylactic use of antiseizure meds. As I had a seizure beforehand this is not something I have looked into :).

Posted: Thu Apr 09, 2009 1:45 pm
by alley
Hi all, just a quick update. Our neurosurgeon finally came back from holidays and rang Jus the other day. He said the radiologist reported that there had been no new growth since the mri in Nov. He said at the moment everything is stable. So I guess this is the very best news that we could have received other than 'oops sorry we made a mistake there is no tumour evident!!

We are booked in for another scan in May and see neuro again 2 weeks later. I guess as you have said before Kenobewan, we are now living our lives in mri increments!!!!


Posted: Thu Apr 09, 2009 2:14 pm
by simon77
hey there. my brother was also diagnosed with a low grade tumor 3years ago. originally neurosurgeon said inoperable. than a week later he said he can operate. he operated and only removed 5%. after that dissapointment we went and seen charlie teo. he said he could remove 75-90%. when my brothers neurosurgeon and neurologist heard he had been to see teo they were furious and scared us off him saying his a "cowboy" and that he will paralyse him. we got scared and backed off the surgery. my brother started asking if chemo was an option. they said that is not an option for low grade tumors. 3 years later - last december after scans my brothers doctors told him that their was regrowth and it looked aggressive. they wanted to do a biopsy and than start radiation. we quickly booked a flight to the U.S. to get a second opinion from 3 of the best surgeons in the world at UCSF, MD ANDERSON, AND CEDARS SINAI.we gave up on the surgeons here in aus.they all said it did look like it was a higher grade and it needed to be operated on. they all recommended charlie teo.they were in shock as to why my brother was told chemo isnt an option for low grade. they had all written research papers proving that chemo is effective in low dosage, long term for low grades.we were told otherwise here in AUS. we immediately left and booked in to see teo. he operated on my brother and removed 90% of the brother came was out of hospital in 2days and now seems happier than ever. now we are waiting on the results of what grade it is. biggest regret is not going ahead with surgery 3years ago. like teo said originally. for low grade tumors u have to be aggressive. u cant just sit n wait coz it well more than likely reccur into a higher grade.we went against his advice coz of the grudge other surgeons have against him, and thus took their advice to steer clear of charlie teo.what a big mistake that was.

Posted: Thu Apr 09, 2009 11:04 pm
by kenobewan

That's great news! Tell Jus to keep up the good work :).

Simon - suggest posting as a new topic so that we can all have a chance to respond separately. Thanks :).

Posted: Sat May 02, 2009 5:52 pm
by alley
HI all, Jus had his MRI on Friday and we get the results in 2 weeks. We are seeing our original neurosurgeon so it will be good to see all the scans side by side and get him to go through them.

Jus has been quite flat lately and on Friday the MRI staff tried to talk him out of having the scan as he has had one quite recently but he told them to do it as it would give him peace of mind. I cannot believe that they did that. I am sure that they wouldn't hesitate if that had been their own head or a loved ones head!

I have to say all this waiting is killing me. I am one for fixing things right now if they are broken but I just have absolutely no control over this and I frankly don't like it one little bit! We took our son to his friends 4year old birthday party today and I looked around at the other parents and was so envious of the fact that they are not living with this time bomb. In case you guys haven't noticed I am having an angry phase!!! I just want us to live a normal life and worry about normal everyday things like finances, mortgages etc not whether my husband is going to be around to walk our little girl down the aisle.!

Anyway enough..... Cannot waste anymore of my energy on self pitying anger. Thanks for listening guys, you are my non judgmental sounding board!


Posted: Sat May 02, 2009 11:41 pm
by kenobewan
I felt angry too, after I got over the initial shock :). Why me, why now? It was particularly annoying as I have always been a fitness fanatic - isn't fitness the best protection against disease? Unfortunately, fitness can't always protect you from cancer.

It normal to feel the way you have. Cancer is still the big C and BT's are about the king of cancers. I don't like the feeling that I can't control this disease either. So I focus on small achievable goals.

I went back to the gym. I can't run anymore so I focus on the exercises I can do. I have a training plan and goals. I also went back to work. These are things that I could control. I have given up on saving the world ;).

Small goals help me keep things in perspective. Also taking an active part in my treatment and having plans and goals there too. I am aware that if I can't enjoy the present, then the situation will only seem worse. So please take time to laugh, sing and do those things that make you both happy - enjoy the present its the gift!

Posted: Sun May 03, 2009 11:33 am
by Kristalee
I hear ya Alley!

Right now I just want to be able to have a baby, and everyone's saying no.No, its not the right time. No, its not fair to the baby.No, its not fair to Mark.No, its not fair to me, I might have to raise the child without Mark.
We all live with things that aren't certain. If we all knew we would live to be 85, then we would plan our lives accordingly, but no , no one know's how much time we have. It might be selfish of me to want a child, and want that child to at least know Mark for as long as he or she can :(.
what if I die first, like next month....I dunno, I hate how our whole lifes are completely run over by these tumors like a bus, like our husband/wifes are already gone, to not move forward , its letting the tumor win.
Mark and I are 28, married and yet cannot even think about having a baby.....this is becoming very hard for me. I work in a mall, where I see babies everywhere.....I see old people as well, and I think, I might never have a baby, and never see my Mark grow old.....sigh
I have been getting a little crazy since the last MRI.......MRI's are bad for the mental state, before and after the fact :(.
Be glad you have a little girl.....