CancerCompass message board discussion started by dianazab on 4/28/2008 http://www.cancercompass.com/message-board/message/all,23522,0.htm Mon, 01 Dec 2008 00:00:00 GMT Mon, 01 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ 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. dianazab Mon, 28 Apr 2008 00:00:00 GMT 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 Smilie Mon, 28 Apr 2008 00:00:00 GMT  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 temadorand is now on 5/23 for 2 months before repeat scan.  His posttreatment scan showed no new growth. We found this encouraging. He was weaned off of decadron and anti seizure.  We have seenmajor decline in past 2 weeks which was about 2 weeks after first 5 daydose 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 whatday it is or what time of the day it is .....we moved his appt withoncologist up to tomorrow instead of Friday.. Dr said could be decadronw/drawl or could be tumor growth but it doesnt seem likely since hislast mri not 3 weeks ago showed no growth, even possibly a bitsmaller?? Is temador worth it?  There is no quality oflife right now?  Will he snap back - he is 73 - was working fulltime up until the diagnosis -----healthy in every other way.  Iwould love to hear from anyone who has had similar experiences ---Hisdesire to get stronger is there he just cant seem to get going. Thanks for any input.Itis pretty common for the lack of energy to ensue after radiationtreatments.  My husband was sleeping approximately 18 hours a dayand had no energy for anything.  I felt sure that he wasdying.  He is now into his 15th month post surgery and is doinggreat.  He still is tired but nothing like that first six monthsafter radiation.  It was the radiation and not the Temador thatsapped his strength.  They tell you that there will be sometiredness, but they do not prepare you for the extent of what isactually happening.  Effects from radiation can last up to a yearpost treatment.  All of the things you describe in you e-mailhappened to my husband.  My advice is to let him sleep if he needsto, eat when he can, these symptoms will subside with time. Itis a terrifying ride that we are on, and all we can do is hang on andpray that God will do the best thing for our loved one.Best wishes to all of you.    Houston Wife Tue, 29 Apr 2008 00:00:00 GMT  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 temadorand is now on 5/23 for 2 months before repeat scan.  His posttreatment scan showed no new growth. We found this encouraging. He was weaned off of decadron and anti seizure.  We have seenmajor decline in past 2 weeks which was about 2 weeks after first 5 daydose 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 whatday it is or what time of the day it is .....we moved his appt withoncologist up to tomorrow instead of Friday.. Dr said could be decadronw/drawl or could be tumor growth but it doesnt seem likely since hislast mri not 3 weeks ago showed no growth, even possibly a bitsmaller?? Is temador worth it?  There is no quality oflife right now?  Will he snap back - he is 73 - was working fulltime up until the diagnosis -----healthy in every other way.  Iwould love to hear from anyone who has had similar experiences ---Hisdesire to get stronger is there he just cant seem to get going. Thanks for any input.Itis pretty common for the lack of energy to ensue after radiationtreatments.  My husband was sleeping approximately 18 hours a dayand had no energy for anything.  I felt sure that he wasdying.  He is now into his 15th month post surgery and is doinggreat.  He still is tired but nothing like that first six monthsafter radiation.  It was the radiation and not the Temador thatsapped his strength.  They tell you that there will be sometiredness, but they do not prepare you for the extent of what isactually happening.  Effects from radiation can last up to a yearpost treatment.  All of the things you describe in you e-mailhappened to my husband.  My advice is to let him sleep if he needsto, eat when he can, these symptoms will subside with time. Itis a terrifying ride that we are on, and all we can do is hang on andpray 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 SOLICITEDCAREGIVER   lkg1955 Tue, 29 Apr 2008 00:00:00 GMT  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????   woztoo Tue, 29 Apr 2008 00:00:00 GMT Woztoo,  It seemed the WBC's took longer to bounce back than my mom's platelets.  She had 400mg Temodar 2/18 and could not restart it until recently (4/18) because it took that long for her neutrophil count to come back.  She did much better on the 280mg this time.   Nikki Smilie Tue, 29 Apr 2008 00:00:00 GMT 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. dianazab Wed, 30 Apr 2008 00:00:00 GMT