GBM and more problems

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Beth Peace - 29 Mar 2004 22:54 GMT

My dad (77) was diagnosed with glioblastoma multiforma in January. After a
craniotomy and rehab he was able to go home, a bit weak, but pretty close to
normal. So far he's had 3 weeks of radiation and one course of Temodar.

A week ago Friday he ended up in the ER with pancreatitis. A week of
changing/dropping drugs and no food finally resolved it, but pneumonia
followed, so he's still in the hospital. He's lost every bit of ground,
both mentally and physically in the last week and a half, so it's very
disheartening.

The pneumonia seems mostly gone (at least he's breathing through his nose
again), but he has a lot of edema. Can edema (of the body) also affect the
brain and cause the mental confusion? or is this a sign his tumor has
already regrown? They changed his decadron to prednisone, then dropped
steroids totally. AFAIK, he's still on an anti-seizure drug, a couple of
antibiotics, not nearly enough insulin (IMHO) and now lasix.

My mom is upset and doesn't really understand what the doctors say (not
medically minded at all), and although I'm there a lot, I never seem to be
there when the doctors pass by. Maybe this too is something that will
resolve...I just don't know, and I'm not sure what to ask.

Beth

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J - 30 Mar 2004 01:20 GMT

> My dad (77) was diagnosed with glioblastoma multiforma in January. After a
> craniotomy and rehab he was able to go home, a bit weak, but pretty close to
[quoted text clipped - 9 lines]
> again), but he has a lot of edema. Can edema (of the body) also affect the
> brain and cause the mental confusion?

I would think yes but see below.

> or is this a sign his tumor has
> already regrown? They changed his decadron to prednisone, then dropped
[quoted text clipped - 7 lines]
>
> Beth

Hi Beth,

When I looked up edema, the 3 most frequent mentioned were congestive heart
failure, liver and kidney.
(some or all of the medications below also have warnings about same - liver and
kidney)
I know lasix has to be watched for potassium loss and kidney function.

I think he's probably got edema in his brain from the radiation therapy & the
subsequent tries at corticosteroids.
http://www.cinn.org/ibsc/braintumor/radiation.html

then to try and fix that, they tried decadron
http://www.rxlist.com/cgi/generic/dexameth_ad.htm which has several warnings on
it
"Fluid and Electrolyte Disturbances: Sodium retention; Fluid retention;
Congestive heart failure in susceptible patients; Potassium loss; Pancreatitis;
Increased intracranial pressure Manifestations of latent diabetes mellitus;
Increased requirements for insulin or oral hypoglycemic agents in diabetics;

So they tried Prednisone http://rxlist.com/cgi/generic/pred_ad.htm
which has the same warnings on it.

The pneumonia may have been coincidental or because his blood counts got too low
from the Temodar or the corticosteroids
http://www.rxlist.com/cgi/generic2/temoz_ad.htm

If there is fluid in his brain, confirming and removing same are invasive
procedures and probably not recommended given his current state of health.

He may even be in partial heart failure. If it was my Dad, I'd want to wait it
out on the antibiotics and lasix and hope with proper diet and insulin (and
time) that he can get back to where he was before these treatments started, and
then get his trip planned. But I'd be asking them, in the meantime, about
whether a mild anti=inflammatory might be worth a try, if he can eat. The goal
being to get him back where he was. And also ask them if he's now "palliative"
in their view.

I'm not an expert, just trying to piece things together from what you describe.
I suppose your best bet is to go and try to talk with the doctors.
Hugs
J

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Beth Peace - 01 Apr 2004 01:09 GMT

>> My dad (77) was diagnosed with glioblastoma multiforma in January.
>> After a craniotomy and rehab he was able to go home, a bit weak, but
[quoted text clipped - 4 lines]
>> changing/dropping drugs and no food finally resolved it, but
>> pneumonia followed, so he's still in the hospital.

<snip>

> When I looked up edema, the 3 most frequent mentioned were congestive
> heart failure, liver and kidney.
[quoted text clipped - 39 lines]
> doctors. Hugs
> J

Thanks for your response (and thanks to Alayne too); it really did help.

He's getting better, the edema is down, his mind is back, but it's going to
be a struggle to get him walking again, unfortunately. Back to rehab. His
reserves are just gone, and he's not keen on eating, but we're trying.
They're going to give him a liquid (forget the name) that's supposed to
stimulate appetite, along with Ritalin to wake him up since all he wants to
do is sleeeeeep.

They did a repeat MRI and there's no sign of tumor regrowth *does
cartwheels*

Beth

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J - 01 Apr 2004 03:34 GMT

> Thanks for your response (and thanks to Alayne too); it really did help.
>
[quoted text clipped - 9 lines]
>
> Beth

That's encouraging Beth, (edema down, no sign of regrowth).
Megace for appetite?
There's tips about appetite here http://www.cancersupporters.com/asc/part2.html

Also mouth sores etc.
Keep the good news coming.
Thinking of you and your Dad,
Hugs
J

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Alayne - 01 Apr 2004 07:34 GMT

> Thanks for your response (and thanks to Alayne too); it really did help.
>
[quoted text clipped - 9 lines]
>
> Beth

Hi Beth,

Pleased to hear that things have stablised back down again (whew, sigh of
relief). Tony used to say that the worst part about a GBM was the
psychological impact rather than the physical, I wonder if that is what is
affecting your dad too? A cancer diagnosis is a huge deal in the first
place, but knowing you have a GBM takes an awful lot of strength at the very
beginning.

I can't offer much in the way of advice at the moment, other than to simply
go with the flow, make the most of what you do have, be positive and not
think about the tommorrows.

How is your mum bearing up?

Take care of yourself now Beth and the warmest of Hugs.

Alayne

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Alayne - 30 Mar 2004 07:30 GMT

> My dad (77) was diagnosed with glioblastoma multiforma in January. After a
> craniotomy and rehab he was able to go home, a bit weak, but pretty close to
[quoted text clipped - 19 lines]
>
> Beth

Hello Beth,

Sorry to read that you are already on a rollercoaster ride with your Dad. I
am afraid that I never came across any of the above with Tony so I can't
specifically answer your questions (although J has had some input).

I wonder if you could possibly request an appointment with the doctors
yourself so that you can get them to let you know in laymans terms what is
going on? From my experience, sometimes you have to be quite insistent and
as your mum is obviously upset (understandably) she is probably not taking
in what they are telling her.

Hopefully, once they get the meds. sorted, you will see some improvement in
your Dad.

In the meantime Great Big Hugs to you and your family Beth - and remember we
are always here for you.

Hugs

Alayne

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