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High grade glioma, AAIII, GBM, what's the difference? Or does it matter?

connsteele
Posts: 232
Joined: May 2011

We are finally back home in Ohio, after moving our son from DC back home. Not an easy thing as giving up his independence is as hard for him to accept as the diagnosis.(age 34, single/no kids, dx 4/13/11; resection 4/18, only removed enough tissue for biopsy; completed 5 weeks radiation/Temoar 6/23).

He has declined significantly since the biopsy: has confusion, needs assistance with about everything, including walking as his balance is bad; fine motor decline. Speech slurred and sometimes trouble finding the right word. Plus he's insulin dependent diabetic.

Before leaving Virginia, we received a copy of his records to take to his new docs in Columbus Ohio (The James at OSU...great place). Interesting reading the docs comments versus what we've been told. One thing that is confusing is the exact term used to describe his dx. The radiation doc says "high grade glioma". His oncologist had said "astrocytoma III but acting like a IV", but her notes say ""glioma, mixed". I had asked her during an office visit if it was GBM and she said yes. The new doc at OSU used the term "astrocytoma." It probably doesn't really matter, only that at OSU, they're thinking of not giving him round 2 of Temodar (5/28) The 28 day regimen of Temodar made his blood counts plunge three weeks later. The OSU doc is concerned that his bone marrow can't handle anymore T. So instead, considering putting him on bi-weekly Avastin infusion. We won't know for sure until our appointment on 8/8. However, the nurse there said that typically, Avastin has been approved for GBM and not Astrocytoma, but she would lobby the insurance company to pay for Avastin for AA.

Question: is it common to interchange terms like this? And, has anyone had problems getting insurance to pay for Avastin for AAIII?

BabsOregon
Posts: 30
Joined: Jun 2011

I am glad to hear that you brought your son home but sorry to hear that his condition is so much worse. Our insurance company approved Avastin for my husband during the regular course of radiation and chemo, which our oncologist thought was very unusual because Avastin is only approved by the FDA when radiation and Temodar have failed.

Unfortunately, he had severe seizures the day after his first dose and since then has been hospitalized twice (different causes). Last week he started passing blood and is now very anemic.

I don't know how much of these seemingly unrelated problems were caused by Avastin but the oncologist doesn't want to restart the therapy until his anemia is resolved so he isn't likely to have more Avastin for a few more weeks. The only positive development since his diagnosis on 5/31 is that he has regained some movement in his disabled right hand. He still can't use the hand but he can wiggle his fingers. It is his hope of regaining use of his right side that made the Avastin seem like such a great option but I am not really confident that he will gain that much from it even if he can take it again.

It seems to me that the treatment of this disease is generally a lesson in side effects. I happened on to a website called brainhospice.org and thought that it had lots of helpful (though depressing) information. Brain cancer is very different from other cancers, whatever the type, and the time frames we are dealing with seem to be accelerated. I am trying to be positive but the treatments just seem to make him weaker. I haven't really found anyone in this process with whom to have a quality of life discussion. I guess we are all on our own on that.

connsteele
Posts: 232
Joined: May 2011

I would like to bring up the "quality of life" discussion with his docs, but not sure how, especially since this is our son going through this, not me. Our sonhas said that he wants to fight this all the way, so we are honoring that, of course. As for me, if I had this diagnosis, I'd opt for quality over quantity anyday.

We have not asked the docs outright, "so, how much time?" I suppose if we asked, they'd give their opinion. I feel that question should come from our son, if he wants to know.

Since he came home, all he does is sit in the recliner, sleeping or watching TV. This is so not like him. It's hard to tell: is this depression (understandable) or the disease? He says he's tired.

I am glad that these new docs at OSU have recommended physical, occupational, and speech therapy. Some might think, "what for?" Of course, I don't think he'll ever regain all the functions he's lost, but as the doc said, "it gets him out of the house and interacting with people." Plus, it does give our son hope that maybe he can regain enough fine motor to be able to do some things he enjoyed, like billiards and video gaming. That would greatly improve life for him.

Has your husband going to have any kind of physical therapy?

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

I agree wholeheartidly on the therapy..My wife has GBM4..and i may say right here, I think they are all the same, like your original post..all the same..
My wife sufferes from radiation necrosis and the physical, occupational and speech therapy has helped her imensely, if for no other reason it has raised her morale because she is just not stuck at home all day watching tv..
She has a place to go for 3 hours a day, 2 days a week.

BabsOregon
Posts: 30
Joined: Jun 2011

My husband has been to OT twice and to PT once. He has appointments scheduled after his treatment is concluded in mid-August. We had already gotten a sling and rigged the shower to accommodate him so the OT mostly just confirmed that we were doing the right things and the PT mostly just evaluated his gait and strength for now. My husband is so brave and strong-willed that he exercises every day, despite the almost overwhelming fatigue. He was walking around the block every morning until the anemia laid him low but he was still stretching his weaker limbs and trying to do the muscle strengthening exercise that the PT suggested. His mental condition is good despite some forgetfulness and being occasionally short-tempered (I know that I wouldn't be anywhere near as pleasant to be around as he is). He also has lots of friends here and a good family - he actually has to tell people not to come to visit because it makes him too tired. We both keep hoping that he will get to the end of his radiation and chemo and he will regain some strength and mobility. We have to hope that. There are just days when I look over and the extent of what he has lost hits me. He was so strong and did everything he attempted so well - work, sports, loving me - my heart just breaks. I just want to do the right thing for him and there is no one who can say what that is. I guess we all just soldier on.
Thanks for all the response. I keep you all in my thoughts.

HopeLoveFaith516
Posts: 9
Joined: Jul 2011

Just wanted to tell you that I have had similar experience with my husband who was diagnosed last November (2010). His tumor was so massive and infiltrated that it was inoperable (actually had no symptoms until he seized). He did radiation and Temodar (finished in January). Unfortunately, his tumor would not respond to Temodar and after only one cycle, they switched him to Avastin. He had a great response to Avastin in the first two months with NO side effects (he has been working full-time since one week after radiation...though he was probably pushing it then). However, now we have an additional problem with w/either radiation necrosis (IF ANYONE HAS EXPERIENCE WITH THIS, PLEASE LET ME KNOW!) or another active tumor (docs can't tell for sure and a PET scan was done today). I can tell you that tiredness can be a lasting effect from radiation for up to 3 months (my husband was incredibly fatigued and slept quite a bit) and it can also be a side effect of all the meds they have to take (especially the anti-seizure med Keppra) until his body acclimates to the dosage. And, as you mentioned, it could also be depression. Therapy should help with this, but keep the faith, and never give up hope. There are a lot of different therapies available out there and surely one of them will be the one we are looking for. Good luck and God Bless!

itismeuc
Posts: 9
Joined: Aug 2011

My husband was diagnosed with the GBM Ph IV on 6/2/2011 and had surgery on 6/3/2011. I am just curious, is your husband on anti-seizure meds? My husband has started his 2nd week of chemo pills and the 2nd week of radiation. The surgeon that took out the tumor said they got it all, but them the lady with the clinical trials informed me that it WILL come back! Everything I have read tends to agree with that. Anyone have anything to tell me about this horrible GBM? Any info would help. Thanks for reading this.

DistancerunnerXC's picture
DistancerunnerXC
Posts: 44
Joined: Mar 2011

My wife was diagnosed GBM4 on 7/26/09...they say the same thing but nobody knows.
The worse thing that you can do is read statistics.
The only worse thing is that you have to do your own homework when first diagnosed.
You expect that there is some triage thing within the medical community that when some poor slob comes in and is diagnosed with GBM, they will be sent immediately to one of the best places.
You find out the medical community does not work that way.
It turns out to be a business and some doctor or administrator will stand right there and tell you that a surgeon who performs surgery without the use of brain mapping or the sophisticated techniques can be as effective as those that do use it and that all oncologist would do the same thing etc..
it's a business and you have to be ON YOUR TOES to know and take your loved one to the best places to treat.
There is no FLOWCHART that teh medical community uses...to treatyour loved one..
Alot of this is based upon the homework that you do...and every decision that we make, is way beyond our experience and the people who could answer the question won't because it's business.

BabsOregon
Posts: 30
Joined: Jun 2011

It sounds like your husband is on a similar schedule to my husband's - not much comfort in that. My husband has been on anti-seizure medication (Keppra 1000 mg. twice daily) since he had a series of seizures on June 24th. He hasn't had any seizures since and he says he doesn't think the Keppra gives him much trouble. The doctors were hesitant to put him on the meds before the seizure because they didn't want to add to his daily medication list. Has your husband had a seizure?
I wish you luck with the clinical trials - I have heard some very hopeful things about some of the trials. The fact that your husband was able to have surgery to remove the tumor qualifies him for trials that are not available to patients with inoperable tumors. As DistanceRunner said, there are some exceptional facilities out there and it is worth exploring the options available to you. We got a second opinion from UCSF which confirmed that my husband's tumor was inoperable but our local surgeon was the one who sent us there - he said that there are lots of doctors who operate when they should defer to the experts with specialized equipment and experience.
Take care.

johngiustino
Posts: 26
Joined: Apr 2011

http://www.abta.org/Tumor_&_Treatment_Info/Glioblastoma/262

http://en.wikipedia.org/wiki/Glioblastoma_multiforme

A couple of things:

1) You will obsess on the statistics, it is always natural. The sooner you can ignore them though and realize you are not a statistic, the better you will feel.

2) Get yourself to a specialist (NO - neuro-oncologist), preferably where they do research/clinical trials. Only there are you likely to get the best treatment and analyses. The previous poster is correct and it was my experience. If you go to a "generic" oncologist, they will tell you that you are getting the same treatment as everyone else. That is what I was told then I switched to UCSD and was amazed. The doctor had answers about my symptoms, had the best MRI in the area with specialized procedures/protocols for brain tumor patients, and was aware of the latest clinical trials and approaches. Additionally, my tumor sample is undergoing a complete genetic analysis. In case of a re-occurance, this may allow my doctor to tailor my treatment for the best possible outcome. None of this was available at my previous hospital. In fact, my previous oncologist had run out of answers for me as I was finishing the "standard treatment". To her credit though, she called the NO I have now. I knew then and there I had to switch.

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