I'm Really Scared Right Now

Sorry I haven't posted in a while, but things are really getting chaotic for us. I'm usually able to handle things, but this is getting to me today.
A couple of days ago, my husband was better than he'd been in the last two months. He was awake and alert a lot, watched football with my son, played with our little grandson, and even walked steadier. It was like the calm before the storm because since then, it's been upside down. He's extrememly confused once more, had another seizure,(they're being treated) has started to lose some of his long term memory, and the list goes on and on! The doctors say they think it's from the radiation he's been on for the last 4 weeks, but I'm not so sure. His last mri showed the tumor was beginning to shrink, but the doc said he's not happy with the response to the treatment. There's not much of it. They're going to do another MRI this weekend to try and see if the tumor is growing or not and honestly, I'm scared to death of the results! I know that his GBM IV is inoperable and is bilateral now and that is two strikes against him. I don't understand why the tumor would be shrinking and his symptoms are becoming so much worse except for that one day. I'm not handling this well today and think I've cried until I can't cry anymore. I just needed to get this off my chest, so please forgive me for such a long post. I'm just scared I'm going to lose him sooner than expected.

Ann
husband dx 7/05/05
GBM IV inoperable and bilateral
Beginning 5th week radiation and Temodar
last mri showing slight shrinkage, but symptoms
getting worse

Sorry to hear how things are. They are usually a roller coaster here also. My dad was diagnosed the first of July. He finished radiation two weeks ago and Temodar last week. In a couple weeks he will begin Temodar five days per month. My dad doesn't even remember when we first took him for radiation. The first weeks were difficult and he couldn't find his way around anything. He did start getting better as the Tumor shrunk some. The steriod for swelling that he takes that was 8 mg 4 times per day. They then made it 4 mg 4 times per day. When they tried to go down to 4 mg 3 times per day his skills began to decline again. Have they been doing anything with his steriod? My dad has it on both sides and inoperable also. When we first discovered it, it doubled in size in one week. What State are you in? The NCI website has many trials they do on progessive gbm. I am in Tampa FL and I know they have one here at Moffitt Cancer Center that delivers medication directly to the tumor. I am going there Monday, that's were we were originally diagnosed and biopsied, and I am going to find out more on it. Hold strong, I remember one weekend I thought my dad would die and I had to help him go to the bathroom, and now he is painting fences, washing the dog, and so much more. Also, you say they are not happy with his response to radiation. Out Dr. didn't expect to see any response in four weeks. Then we did an mri near the end and found that it had shrunk. He refused to do one any earlier and said that it wouldn't show us anything that soon. Have hope, sometimes we listen to the doc's too much.

It looks like you're going through a lot of the same things we are here. They started him out on two mg of decadron (steroids) and now it's 8mg 3 times a day. They tried 4 times a day and said there was no response so they backed it to 3 times a day and have kept it there for some time. They didn't seem to think he could come off them any time soon. It's great to hear your dad is doing so much! I'll be sure to keep him in my prayers. We're in West Virginia, and I've emailed every cancer center I could think of and they all said the treatment he's getting now is what they would recommend. I agree, sometimes we listen to the doctors so much. I think they become so use to seeing these cases, they forget these are more than just statistics.
Ann

My father was dx on Aug 29th. with 2 tumors, one was removed and the other was inoperable. They started him on radiation and temodar Sept. 9th. He was only on the temodar for 3 days before having a reaction, so they took him off, hopefully they will put him on a lower dose next week, that is the plan. It has been a roller coaster since the initial dx. and my heart goes out to all that is faced with this. I guess we never know what will come our way. So far he's not had any side effects from the radiation and is much stronger since his surgery. Not sure what will come next but I do know I'm thankful for any time that we have with him. He's a great man and has been the sole caretaker of my mother for the last 11 years.

Here's wishing and praying for all who is touched by this beast.

My husband was dx 4/27/04 with a stage 4 GBM. They gave him 9-12months with aggressive tx without surgery as the tumor was to close to the brain stem.

He was a little unsteady on his feet before the biopsy, but fell twice the day of the biopsy. Three days later he lost mobility on his whole left side and was sent home with hospice. The thought was the tumor was rapidly growing. Wrong....we later found out it was a bleed and could have been caused from the jarring falls.

He regained most of his left mobility and was offered the standard rad tx. and chemo temodar with a new prognosis of 15 months. He was working with Pt and OT and walking with a leg brace showing signs of improvement eventhough and MRI showed possibly the growth of another tumor. Conflicting MRI results were showing the shrinkage of the smaller tumor, but no change on the large on.

Suddenly in November when the doc was trying to decrease the decadron my husband lost all mobility on his left side. Another MRI showed the larger tumor grew, but nothing clear on the two small ones in fact they weren't sure there really were two small ones.

My husband started regaining the left side mobility, but nothing near to the Novemeber status.The doc changed to BCNU iv chem which caused alot of blood related problems..elevated liver enzymes, neutorpenic, low platelets, etc.

He has been off everything since May and continues to lose ground. He has not walked for almost 3 months, and has only a lifting and grasping ability on his left side with the aide of this right arm. He only complains of head pressure with no pain, but so far refuses an increase in the decadron. The doc says this is the decadron effects, but I don't believe it is all caused by the decadron.

It is all a waiting game now. We were told no clinical trials because his score isn't high enough and no tx unless he gets worse. He has met the 15months and is going on 17 months. He's incontinent most of the time wearing depends and refuses a foley, has the decadron psychosis yet can be rather rational at times, and still has a great appetite.

I feel like I am sitting on a time bomb... he has been so stable for months and my teenagers and I have had time to prepare, but in reality it will be devastating when it finally happens. We still have hope, but reality keeps pushing it aside.

I can sure sympathize with what you're going through! My husband has only a few more rad and Temodar treatments and then we'll be waiting to see what happens. When he was origionally diagnosed in July, the docs told me this would be harder on us than it would be on him. He would keep forgetting what was happening to him due to the tumor's location, but we'd be living each and every moment. He sure did know what he was talking about! This is a nightmare we can't wake up from isn't it?
Ann

TO BET19:
I noticed in your post that you mentioned teeangers. May I ask how they are handling everything? In a way, I am even afraid to ask. My hubby (61 yr old, diags w/GBM 5/04) is doing great, so far. Resection and treatments have meant removal of all evidence of the tumor until this past MRI. Maybe necrosis or maybe tumor. Don't know what the treatment options will be once it is determined what the "spots" are. Any way, we have a 19 yr old son, living at home and going to community college. I hate that I am afraid of the future for him, but I guess that I am. I kind of go back and forth. So far, all us seem to be handling everything ok, sometimes better, sometimes not so good. but I know that there will be some very tough times ahead.
thanks for posting, we learn so much from each other,

Luving wife.

do all these doctors use the same agressive treatments! this message is to all of you who have loved ones with cancer: please check out the book "outsmart your cancer" and "natural cures they don't want you to know about". these books have been a great help to me and my family. my father was dx for GBM IV in june 2005 and had surgery at the end of that month and was still left with 50% of the tumor that they could not touch due to where it is located. we put my father on protocel before his radiation treatments. it's a non-toxic, alternative treatment that poses no side effects, unlike chemo and radiation (and believe me, i've seen first hand what those two can do to a person who is in otherwise perfect health!). my advice to all of you out there who are struggling with decisions, please check out these 2 books. it can't hurt to try something. i'd do anything for my father if i knew it would help. you are all in my prayers. please keep my father in yours. thanks!

sorry to hear about your husband.i pray for the best for you and your family.this is all pretty new to me.my boyfriend has cancer of the brain.i dont know much about it yet.but i was wandering what gbm was.we dont have a diognoses yet.i'm just trying to lurn all i can about it.thanks .try and keep your head up,

As I sit here and read these posts, I wonder how they continue to claim that primary brain tumors are rare when so many of us are dealing with this. My father, who is a physician himself, was diagnosed on June 26, 2005, with what they told us at surgery was a Grade III astrocytoma. The neurosurgeon mentioned quality time, etc...my dad had just been seeing patients days before and had no idea his poor penmanship was due to this blasted tumor. Anyhow, it turns out the tumor was graded wrong and is supposedly a II. My dad was started on Temodar and radiation, and though clumsy, was able to walk and take care of himself. Then his speech started getting funny after the biopsy, which we were assured was "normal" for such a procedure. His tumor is 4cm and is inoperable, and we accepted that since we believed members of the local medical community would also be looking out for a fellow doctor. Days went by and my dad's ability to use his left hand diminished, and he is left-handed. In July, he developed cellulitis in his left leg, spent 11 days in the hospital, his Temodar was stopped, and he has never been able to walk since then. He finished his radiation Sept 2, and had no other complaints, so we admitted him to a rehab hospital to help him try to walk again. He was at this time taking 4mg of Decadron 3 times a day, and had also developed diabetes from it. During one of the needle sticks, he developed cellulitis in his right hand, and then was admitted to the hospital for 5 weeks, where the cellulitis' swelling caused 3 of his fingers to curl inward toward the palm, making that hand useless now, too. We were very upset and wanted a neurology consult, but the doctor who ran the rehab floor at the hospital he was refused. This last Wednesday we were told my dad was not benefitting from rehab at this acute care hospital and would have to be transferred (Or in other words, we need your bed, you need to leave), so we transferred him to a skilled nursing facility on Thursday. My dad's speech is confused, he speaks strange words we can't understand and now he has developed serious anxiety and psychosis. We liked the nursing facility except at night for 30 patients they had only 2 CNA's, both of whom were unable to safely move my father (who is 6'2") from his bed to the bathroom since he cannot bear any weight. So, we transferred him again to another hospital specializing in geriatric problems, and last night he went into a diabetic coma because the medicines he has been taking were ordered incorrectly. This is a hell....I cannot believe how a 4cm tumor can so quickly change the life of people. I sympathize with every single person on this board who is going through this. There has to be some answer to this. I have found that in this town, the doctors are more interested in being the Boss than working together. Had we know this in advance, we would have taken my dad out of state. I wrongly assumed his fellow doctors would take care of him, but the nursing shortage here is so severe I think they hire anyone and everyone who applies. And let me tell you, this city has a 2 million+ population. I am an emotional wreck, I spend nights by his bedside so he won't try to climb out of bed and get hurt again, as he has at every single hospital. Does anyone have any advice for me that could somehow make any part of this better?