Gbm 1V - My Dad

My Dad was dx'd in Dec 07 - he had surgery that removed a good 90% of the tumor.  He completed his 6 weeks of radiation and temador and is now on 5/23 for 2 months before repeat scan.  His post treatment scan showed no new growth. We found this encouraging.  He was weaned off of decadron and anti seizure.  We have seen major decline in past 2 weeks which was about 2 weeks after first 5 day dose of temodor and a good 6 weeks away from last radiation tx.  Very weak, sleeps all the time, has no interest in eating, drinking.  Off balance - took a spill today.  Never sure what day it is or what time of the day it is .....we moved his appt with oncologist up to tomorrow instead of Friday.. Dr said could be decadron w/drawl or could be tumor growth but it doesnt seem likely since his last mri not 3 weeks ago showed no growth, even possibly a bit smaller??

Is temador worth it?  There is no quality of life right now?  Will he snap back - he is 73 - was working full time up until the diagnosis -----healthy in every other way.  I would love to hear from anyone who has had similar experiences ---His desire to get stronger is there he just cant seem to get going.  Thanks for any input.

Diana,

My mom (59y.o resected plum-size GBM 10/07 Lt parietal; finished rad/Temodar 12/07; on 5/23 Temodar) had a serious problem after her first post-rad Temodar round - 400mg in Feb.  Her platelets & neutrophil counts dipped way low, was very lethargic, slept the days away for 8-10 days straight.  Had her counts went any lower she would have had a platelet transfusion.  She just was finally able to do another round - 280mg this time.  She tolerated that much better.  What are are Dad's blood counts?  Could it be a similar problem that my Mom had?  It seems most people tolerate Temodar very well.

Nikki

On 4/28/2008 dianazab wrote:

My Dad was dx'd in Dec 07 - he had surgery that removed a good 90%
of the tumor.  He completed his 6 weeks of radiation and temador
and is now on 5/23 for 2 months before repeat scan.  His post
treatment scan showed no new growth. We found this encouraging. 
He was weaned off of decadron and anti seizure.  We have seen
major decline in past 2 weeks which was about 2 weeks after first 5 day
dose of temodor and a good 6 weeks away from last radiation tx. 
Very weak, sleeps all the time, has no interest in eating,
drinking.  Off balance - took a spill today.  Never sure what
day it is or what time of the day it is .....we moved his appt with
oncologist up to tomorrow instead of Friday.. Dr said could be decadron
w/drawl or could be tumor growth but it doesnt seem likely since his
last mri not 3 weeks ago showed no growth, even possibly a bit
smaller??

Is temador worth it?  There is no quality of
life right now?  Will he snap back - he is 73 - was working full
time up until the diagnosis -----healthy in every other way.  I
would love to hear from anyone who has had similar experiences ---His
desire to get stronger is there he just cant seem to get going. 
Thanks for any input.

It
is pretty common for the lack of energy to ensue after radiation
treatments.  My husband was sleeping approximately 18 hours a day
and had no energy for anything.  I felt sure that he was
dying.  He is now into his 15th month post surgery and is doing
great.  He still is tired but nothing like that first six months
after radiation.  It was the radiation and not the Temador that
sapped his strength.  They tell you that there will be some
tiredness, but they do not prepare you for the extent of what is
actually happening.  Effects from radiation can last up to a year
post treatment.  All of the things you describe in you e-mail
happened to my husband.  My advice is to let him sleep if he needs
to, eat when he can, these symptoms will subside with time.

 It
is a terrifying ride that we are on, and all we can do is hang on and
pray that God will do the best thing for our loved one.

Best wishes to all of you. 

On 4/29/2008 Houston Wife wrote:

 

On 4/28/2008 dianazab wrote:

My Dad was dx'd in Dec 07 - he had surgery that removed a good 90%
of the tumor.  He completed his 6 weeks of radiation and temador
and is now on 5/23 for 2 months before repeat scan.  His post
treatment scan showed no new growth. We found this encouraging. 
He was weaned off of decadron and anti seizure.  We have seen
major decline in past 2 weeks which was about 2 weeks after first 5 day
dose of temodor and a good 6 weeks away from last radiation tx. 
Very weak, sleeps all the time, has no interest in eating,
drinking.  Off balance - took a spill today.  Never sure what
day it is or what time of the day it is .....we moved his appt with
oncologist up to tomorrow instead of Friday.. Dr said could be decadron
w/drawl or could be tumor growth but it doesnt seem likely since his
last mri not 3 weeks ago showed no growth, even possibly a bit
smaller??

Is temador worth it?  There is no quality of
life right now?  Will he snap back - he is 73 - was working full
time up until the diagnosis -----healthy in every other way.  I
would love to hear from anyone who has had similar experiences ---His
desire to get stronger is there he just cant seem to get going. 
Thanks for any input.

It
is pretty common for the lack of energy to ensue after radiation
treatments.  My husband was sleeping approximately 18 hours a day
and had no energy for anything.  I felt sure that he was
dying.  He is now into his 15th month post surgery and is doing
great.  He still is tired but nothing like that first six months
after radiation.  It was the radiation and not the Temador that
sapped his strength.  They tell you that there will be some
tiredness, but they do not prepare you for the extent of what is
actually happening.  Effects from radiation can last up to a year
post treatment.  All of the things you describe in you e-mail
happened to my husband.  My advice is to let him sleep if he needs
to, eat when he can, these symptoms will subside with time.

 It
is a terrifying ride that we are on, and all we can do is hang on and
pray that God will do the best thing for our loved one.

Best wishes to all of you. 

 

My husband had surgery for removal of most of tumor in 12/06, followed by 6 wks. of combined radiation and temador........wan't able to continue the temador schedule followup regimin.  No tumor growth shown on MRI's for the next several months(no growth for 16 months post surgery)  MRI on 3/17 showed aggresive tumor growth had occurred in area of motor skills portion of brain.(was located in speech/memory portion previously)  He has just completed 5 days of Temador with no side effects, other than tiredness.......which he has had ever since the surgery.  To return for office visit in May, followed by 5 more days of Temador....then MRI in June to see if the Temador has had any effect on the tumor. We were told that if the tumor was affected by the Temador, then he had approximately 6 months, if not then a shorter period.  We will probably stop the Temador if it is not doing any good when we have the MRI in June.  He is 71 years old.....was very active, vibrant and intelligent prior to the onset of this horrific disease.  He went into the hospital that way, and come home an old man.  He has had no desire to go anywhere,do anything, or see anyone other than family since this happened.  I have only left him alone for a short time once or twice since this happened.

I HATED what the Decadron did to him.  He didn't sleep for weeks....wouldn't go to bed at all, just short catnaps in his chair.  Consequently, he ended up back in the hospital....couldn't walk or care for himself, had ulcers and severe swelling in his legs, and his bloodcount  hit rock bottom.  He was in danger of losing either life or limb.  He finally did build back from that...took several months....and had been having good MRI reports until this past one.  We knew it would come back.  It is always knowing it will, but hating the news when it does.

SO ALL PRAYERS ARE SOLICITED

CAREGIVER

 

On 4/28/2008 dianazab wrote:

My Dad was dx'd in Dec 07 - he had surgery that removed a good 90% of the tumor.  He completed his 6 weeks of radiation and temador and is now on 5/23 for 2 months before repeat scan.  His post treatment scan showed no new growth. We found this encouraging.  He was weaned off of decadron and anti seizure.  We have seen major decline in past 2 weeks which was about 2 weeks after first 5 day dose of temodor and a good 6 weeks away from last radiation tx.  Very weak, sleeps all the time, has no interest in eating, drinking.  Off balance - took a spill today.  Never sure what day it is or what time of the day it is .....we moved his appt with oncologist up to tomorrow instead of Friday.. Dr said could be decadron w/drawl or could be tumor growth but it doesnt seem likely since his last mri not 3 weeks ago showed no growth, even possibly a bit smaller??

Is temador worth it?  There is no quality of life right now?  Will he snap back - he is 73 - was working full time up until the diagnosis -----healthy in every other way.  I would love to hear from anyone who has had similar experiences ---His desire to get stronger is there he just cant seem to get going.  Thanks for any input.

Just read your dad's stuation,and all fits me to a "T".My difference is this,my White cell count is too low for TEmodar,so i am playing the waitng game for them to come back.Also,my balance appears to be getting worse.MRI on Friday,so we'll see what iis going on.What aride this has been so far,and i will fight till the bittere end!!!!!!!!!!!!

What happens if White cells don't don't come back??

Anyone had that problem???? 

Thanks to all who read and responded to my note.  My Mom and I took my Dad to the N/Oncologist yesterday. He had another mri and it showed NO growth of the residual tumor.  His blood counts, platelets etc were all very good.  He was dehydrated but hopefully he can work on that -----the dr attributed his weakness to steroid w/drawl as well as the affects of the radiation. 

After hearing from Nikki and Houston Wife and seeing the Dr and my Dad yesterday, I do feel he will bounce back from this weakness.  Dr prescribed home physical therapy for 6 weeks at my suggestion (learned again from this site and others experiences) which I will arrange for today.

The steroid attacks the muscles and makes them weak.  The goal now that he is off steroid is to build muscle back.  After seeing my Dad yesterday I feel like he perked up a little since I saw him on Saturday..

Thinking of you all and thank you for your responses.  My Mom is reading and learning as well so it is very helpful.  Thank you----Diana

God Bless you all.