Brain Tumour Survivor

Hello all :)
my name is Krista, I'm also on another BT forum, but thought I'd join this one as well.
My 28 year old husbad was dx with a grade 2 oilgoastrocytoma. I say grade 2 because the biopsy came back as grade 2. When the tumor was removed they found a very small area with grade 3 cells.They say they removed those cells.So its more of a mixed bag:).
He had a seizure a few days before our honeymoon, that was all the symptoms he had. The tumor was almost completely removed, it was about the size of a egg. It looked like an egg as well, very well defined. They said it was calicified and very slow growing and he could have had it for up to ten years.
He had a scan a few days ago before he started radiation and chemo, the doctor couldn't see the tumor. Which is hopefully a good thing! After surgery about the size of a grape was seen, so I am hoping they got more than they thought.
He has had no seizures since the first one,and is on keppra.
It's hard to have hope. When we first started this process, I think it seemed he would have surgery, have the tumor removed, and then get on with our lives. Now its seems like, how much time do I have left with him :cry:
I'm so sorry for anyone else having to go through this, I never thought this would happen to anyone I know, especially the husband I love so much.
krista

Its bad that he has a tumour and the timing couldn't have been much worse, but there are alot of good signs.

He is young, the tumour is very slow growing and apart from the seizure he has no side effects. I'd say, patient opinion, that he has at least 10 years prognosis.

Shame that they did the radiation, that's not standard for grade 2. Keppra is usually well tolerated.

As far as brain tumours go, the only one better is benign. If they got it all out there is less of a chance of it coming back, but once you have had one...

In these situations, I like to think of the Lance Armstrong and Lou Gerig's of this world - heroes whatever the outcome :o).

hi kenobewan ,
Mark's tumor had one very small spot of grade 3 cells, thats why they are doing the radiation. He is at Dana Farber here in Boston, MA
his oncologist is Dr Norden, he is very good. They said they wanted to hit the tumor very hard, to kill any grade 3 cells that the surgery missed.
It scares me too, since you can only have radiation once in life, but if he has at least 10 years, some better treatment will hopefully be on the market.
I hope you are doing well yourself, Ill keep you in my prayers
Krista

Dr Norden is right to be concerned, the highest grade cells usually determine the grade. However, now they are tending to find a better prognosis for 2/3, which would be a more accurate description, but not as good as 2 (maybe 5-10 years).

One thing all my research has been saying is that hitting it hard is an older less effective approach. For example, some patients regress after a healthy 10 years due to radiation. The metronomic cycle treatments, longer on lower doses, are proving more effective with less side effects.

I have seen many specialists in nearly 20 months. Specialists tend to have a halo effect on us, we see their framed qualifications and hear them use large words. After reading 1000's of article they appear good at their job or not, just like anyone else.

There are still lots of positive things in Mark's favour. As Lance said, why can't I be one of the few who make it and he did. All I can really say is be careful before going for the hard approach. It may work now but in 1-2 years it may come back more agressive than ever.

I wish Mark the success I have had so far, its a team effort though :o).

Hi Kenobewan,
What I dont understand is , they say he had the tumor for a long time, had no sideffects, It is slow growing and has tons of calification.
I understand they are treating it as a 2/3 and Dr. Norden says he wants to treat it as a grade 4. I never understood that.....its not a grade 4, and the tumor isnt even visable on the CT scan. I would feel much better with just Chemo being used. He isnt on any off again on again cycle. His is doing radiation and chemo for a full six weeks, then chemo for a year straight.
I called Dr. Norden, he is on holiday till monday. It's very hard to trust these dr's. :(
Krista

All this is my opinion, but I would never treat a 2/3 as a grade 4. There is even doubt about treating 4's this way.

I'm for being proactive, but there are smarter approaches. There are newer treatments with less of an impact on the immune system. Cancer patients tend to have weaker immune systems. The standard treatment is to treat treatment like a war in which you obliterate the opponent. When the opponent is located inside you in an area as critical as your brain this can be dangerous.

Now the standard approach does have successes, otherwise it would not be used. But the newer treatments are proving more effective and kinder on the patient. The statistics for this disease are grim and there has to be a better way.

I would get a second opinion, even though this is difficult given he has started treatment. It would be irresponsible of me to give any medical advice, but I would be wanting to discuss the options as soon as you can contact Dr Norden.

Between now and then you need to find supporting information, he won't reconsider just because you have doubts based on what you read on the internet. Go to the treatments section of the forum and to virtualtrials.com/news.cfm. Look for metronomic cycles especially and treatment options.

Good luck!

Hi Krista
I am so sorry to hear about yr Husband's brain tumour. It is a real shock to hear your loved one has a BT. It is more positive in your Mark's case as his tumour is treatable.
My Bro had a Gr 4 GBM & was treated aggressively from the outset. Radiation & chemo daily & after 4.5 weeks the radiation was stopped due to the side effects on our Mark. He continued on Temodal initially daily & then after his 2nd surgery went to the cyclic Temodal of 5days on 23off.
As Ken has suggested you need to be armed with more knowledge on the treatment regimes before you have an appt with Dr Norden. I believe our Mark should have sought a 2nd opinion at the outset. This will be something positive for you to focus on.
Everyone's case is different as you would have now realised & the outcomes for BT's are very variable. My Bro was given a 6-12 month timeline for his very aggressive tumour. He proved them wrong with his fighting spirit & positive attitude. He was very proud of that too!
I felt a very positive vibe from your comment about more treatments becoming available for your Mark & other sufferers in the coming years. Congrats on your great attitude.
Thinking of you & yours.
Cheers, Angie.

Ksplat :)
Thanks you for the words of encouragement. As time passes, I'm praying its going to get easier in deal with Mark's tumor, and one day finally not think of it all since it will be gone! :)
I thank the Lord that my Mark doesnt have GBM. It's hard enough to deal with a mixed 2/3 let alone a IV. Your brother must have been a very special person. I think anyone dealing with a brain tumor has to be! You are a very strong woman as well and I pray I can be as positive during my Mark's illness as you were with yours.
Love Krista

:)
Mark had a MRI and the news is great! No tumor at all! just some fluid. His oncologist mentioned his tumor is mixed with grade 1 oglio and grade 3 astro. I asked how much oglio is there and how much astro. He said he couldnt tell me....but I think it was that small spot they removed with the whole tumor! yay! At least I'm hoping....
Krista

Sounds like good news.

Is this oncologist basing his/her opinion on the MRI report? If so I hope the reports are better than the ones I receive, they are worthless. Sometimes they still get the location wrong. I have found experienced specialists don't read the report, they just view the scans.

I asked if I could get a discount without having the report - still thinking of contacting fair trading ;).

:( Well, Dr. Norden at DF in boston read the scans and said the tumor is still there....I had my hopes up sooo high! To high. Plus the tumor looks HUGE the little grape size tumor is now a huge blob like mass, which he cant tell anything about. He is in treatment of rads and chemo, and Norden said "the brain is irritated, we cant tell what this is until a few months after treatment"
Dr. Norden asked me to trust him. I am a neurotic person by nature and when it comes to my lovey (mark) I get very easily upset.
I asked what size the tumor is now, he didnt know, what was the actually percent that was removed? He couldnt tell me. He also said something to the effect that it didnt matter how much tumor was removed.....what?! Any futher surgery isnt an option unless it grows back....nor any clinical trials or anything else....no gamma knife, the tumor is to big....he said he doesnt know the actual size of the tumor ,but knows gamma knife isnt an option?! But like he said "dont try to be a doctor , thats my job" I could tell he was getting annoyed with me.......I was a crying fool......
I KNOW the reason I'm upset, I read the path report,and they said the tumor was very hard to grade, they said it was on the lowest end of a grade 3 anaplasic oglioastrocytoma.....why not call it a 2.5.
Sorry if I went on, I had a very bad doc visit, and made Mark upset with my freaking out ......people say this gets better.....when?
Krista

I suggest you speak with your neurosurgeon, Dr Kasper I believe, about surgical options as Andrew Norden is a neuro-oncologist. Dr Kasper should be able to give more accurate answers to some of these questions.

We all, patients and carers, have a lot of stress to deal with. Mild exercise, meditation and lots of laughter are helpful. I bought DVD's of my favourite comedians and laughed very hard.

A lot of dealing with this situation is about whether you can maintain the level of control you feel comfortable with. I meet these specialists and listen to what they have to say. I don't argue with them. I either negotiate treatment options or if I believe that they are wrong, I thank them you for time pay my $200-$500 and never go back. I consider that money well spent (I'm serious, I may have avoided being harmed).

Try to remember that these guys & girls are specialists. You'd be surprized by their lack of knowledge of other areas, that they haven't looked at in at least 10 years. This is where specialist cancer teams can be advantageous IF they work together.

So I would be finding ways to manage your stress levels and going to see Dr Kasper. I know that this was one bad day, but a series of these can keep your natural corticosteroids at unhealthy levels.

Hi all,
I was able to find out how much tumor was actually taken out, the doctor said he got 60% which was all the tumor that was "enhancing" I guess what was left he said was grade 2 oglio. Thats why they were having problems finding it since its not enhancing.... Can anyone tell me more about enhancement of tumors, and is it good that its not enhancing?
take care all
Krista

Enhancement generally means that they have seen in a MRI using contrast an active part of the tumor, more likely to be malignant. So it is not something you want to see, but can be a false positive.

It depends on which school of thought you belong to how successful you determine his surgery was. One school says that you are wasting your time getting less than 90% as subsequent treatments are likely to be less successful. This comment is most commonly associated with high grade tumors.

The other school would say that you maximised the patients quality of life, by taking less risks. Given the grade I would lean towards this view. If a fMRI was used even better. However the catch is what to do about the remaining 30%?

Radiotherapy would lessen the quality of life at least temporarily, reduce the successes of future surgeries and increase the risk over time of it coming back. Chemotherapy is a given, but many of us are trying to get an answer as to what happens after standard treatment finishes. There is no standard answer to that question if you don't like the wait & see approach.

Hi Keno,

Thats the question I have :( For awhile it seemed the tumor was gone compeletly since they cant see it, but its there still. Mark has had 22 rads done and is on temodar, the doc wants to see him 3 months after his last rad appt to do a MRI, doesnt that seem like a long wait? I understand his tumor is low grade and slow growing, but waiting 3 months makes me nervous....I pray that the rad and chemo shrunk that last 30% :) Mark is doing great otherwise, has no side effects but some lost hair and tiredness. I;m hoping gamma knife might be an option later on....
How are you doing? thanks for responding.....Krista