Gbm Stage Iv And More....

Hello all... I did post msg way back about my father.. 5 yrs ago diagnosed w/ non-hodgkins lymph. and type II diabeteies. Doing okay from all of that now a little over 1 yr ago father was diagnosed w/ stage IV GBM.. Had surgery, removed most of tumor , was told he would need 24 hr care for the rest of his life and that he only had 6 mos to a year to live. 6 wks later
he was back on his feet , speech was perfect, driving again and living on his own, seemed impossible.. 6 mos later tumor came back went thru surgery again. Dr.'s did put chemo wafers in both times.. this time they had set him up for the cyber knife as well.. Again after surgery and cyber knife he seemed to be his old self.. 6 mos go by and we are back in hospital and we rushed there form out of town . Dr's thought this was it... he was set up to also start temodar treatments.. but because of all the meds he is on he now has full blown diabetes and somehow got an infection in his lft foot and they were afraid to start the treatment until he recovered.. well we all decided that there was nothing to lose so we strted the treatments.. each treatment seemd to help.. but was not getting all the strength back like b/f.. but was doing well... within the last week it seemed to be starting over again one day I had an excellent conv. w/ him over the phone and the next day he could nt get the words out.. Thought the tumor was back but MRI results were perfect , no reoccurnece to the Dr.'s spurise... they are not sure if he had seizures or a stroke... His speech is gone except yes and no and his body is even weaker than b/f... Presently in hospital, they want to send him home... but we have no one that can be there w/ him 24/7 except my grandmother who has been there all along but he was getting around on his own.. which now he can't Drs say temodar is working but hospital want him out and our options are limited ... If he goes to a nursing home we cannot give him chemo... and then he would have to go on Medicaid and they would take everything he has.. Also he was on the Dexamethasone(deccadron) 6 mgs and they weaned him off of that.. Its just amazing that the main we worried about , the tumor seems to be the least of our problems at this point... For the first time we are not sure what we should do.. He is a Vietnam Vet in which he is compensated 30% and most of his illnesses have been attributed to Agnet Orange and we having been fighting to get the 100% that he deserves.. There is alot of little things I am leaving out. But You all got most of the story.. If anyone has any suggestions or experiencing something similar please respond.. I am 30 yrs old w/ 4 children under the age 0f 5... It is really hard right now b/c I live 3 hrs away and I work alot and have alot for that and when I am off I spend alot the time I have w/ my wife and children. This is the most important time in their lives.. ANd I was okay w/ that b/c I did speak w/ my dad 3-5 x a day but now he cannot talk so it makes me feel a littler guilty that I cant do more.. Finacially I can t be a help either.. On top of that my mom is fighting for her life w/ ovarian cancer , surviving seven yrs now.. but crrently it is starting to spread and now they have switches treatmrnts for her... Thanks for listening .... Eric

Hi I feel for you.My mom has gbm as well.I to have 4 children.My mom has been staying with us for the last 6 months weare waiting to here if the temolozide is working.If not i was considering burzynski clinic in texas.My mom doesnt have lots of money either but i encourage her to spend what she has and we will worry about the future when it comes.i am in canada so we have apretty good health caresystem. We dont have to pay any thing for traditional meds just the holistic stuff.I should go someone needs me.

Hi, I'm sorry to hear about your dad and your mom as well. It must be so difficult having to worry about both of them at the same time. Is your dad being treated at a major brain tumor center? Your dad sounds pretty amazing that he bounced back after two surgeries with all the other underlying medical problems he has. My husband also bounced back very quickly after his surgery in January 05. They also gave him six months to live and we are 14 months out and he is working full time and doing very well. He is sick from the Temodar once a month, that he really has a hard time tolerating, but overall he does extremely well. I think if he weren't working full time, he would feel alot better. But he doesn't want to lose his medical insurance. But back to your dad. Do you have other family members who might be able to help out? Your situation sounds very difficult. I would definitely keep fighting for his Vet coverage. You are right that it sounds like he must have had a stroke. The doctors can't tell? I mean, I don't know, but you would think. I'm sorry I don't have alot of good suggestions for you, but just wanted you to know that I hope the best for you and your family. This disease is so hard in so many ways. It affects everyone, and sometimes there are very difficult decisions that have to be made concerning our loved ones care. I will keep you in my prayers.

Patty

hi I am sorry you are going throught his. I had similar experiences with my dad. He bounced back from 2 surgeries and had a great response to temodar. I understand the difficulty in managing not only the gbm but the logistics of getting treatment covered and navigating the health care system. I am not sure what kind of coverage your father has with being a Vet. I can tell you being at home was not an option for my father. My parents home was not suitable for his release no wheel chair accessibility and bathroom on 2nd floor and it was also way to far from where he had raditaion treatments. My father was bedridden/wheelchari bound from time of diagnosis. My fatehr WAS able to get the Chemo in the nursing facility. I did an online search for the best nursing facilities in the area and found a rating agency and picked the best one which his insurance covered--I had to fight to get a bed there too. Transportation to and from radiation was not covered by his insurance-the hospital he was transfered from had not given us all the resources and I luckily had found a bus service called paratransit run by the county that would pick up wheelchair bound folks who cannot propell themselves. This was $6 per way instead of $100 each way by wheelchair van. Most communities have the resources but in my experience you have to do your homework to find them --the docs and social workers were helpful but I found alot more out on my own. You should find out exactly why your father cannot receive chemo in a nursing facility. Perhaps they are thinking it is by IV or something but my understading is that any oral meds are acceptable there. Additionally we ran out of insurance and had to file for medicaid. My fatehr does not have alot of income or assetts but I will tell you medicaid allows you to keep a house, a car up to a certain value (so long as it is not a porche :) and 100,000 in assets. From talking to our social worker we were led to believe they would cover everything for us. I don't know your father's situation but I felt confident that my mom would still be able to be taken care of.

I wish you well. I know there are so many things to deal with not only the disease but how it affects your family and then navigating the system. Take one step at a time and your best choice at each juction. If there is anything else I can help you with please ask.

I hope you have lots of support from your friends and family. If you don't mind me asking where do you live?

you are in my prayers.
Christine

Dear Eric,

I can appreciate how stressful and over whelming this situation is for you. Thankfully your dad has such a caring son who is willing to be a health advocate for him.

How is your dad doing at this time? Has the infection in his foot cleared up? Has your dad been discharged from the hospital since your posting on March 18? With the significant changes in your dad's speech was there any mention of his need to resume decadron?

My dad was found to have a brain tumor on Aug. 21, 2005, and the diagnosis of GBM IV was verified after his surgery on Aug. 29. My dad's tumor was deep within his left temporal lobe so the doctor had to cut thru a significant amount of healthy brain tissue to remove the 90% that he was able to.He has been struggling with speech, memory and cognitive losses since his surgery. He gets very frustrated at times. I can understand your need for daily conversations with your dad because I do the same with mine. There are days when he cannot hear the conversation at all and days when he cannot get his words out. I understand how difficult this is for you because this is your life line to your dad ... and his to you.

It is hard to live such a great distance from your dad when you want to do so much for him. I live 70 minutes from my parents and cannot do as much for them as I would like to do. I will keep you in my thoughts and prayers.
Take care,
Rondi

i lost my husbend march 27,2006 from his 8month battle.. he had two surgerys to remove cancer. during the second surgery in february2006 ,, the doctor sid cancer went to brain stem.jerry was 61 years old. loved by everyone. .he was only in his hospital bed for nine days. bless his heart, even in his confusion, he always had a kind word and sound advice. i miss him deeply but glad he is no longer in pain and discomfort. i wish everyone loads of prayers. maybe that housten doctor that has cancer,has found something that will cure or help.may god richly bless you all. may your loved ones go in peace. my husbend went very peacefully. what a blessing for all

My heart is with you during this time as you mourn the loss of your husband. How lucky for him to have such a loving partner to walk this journey of love with him. It is reassuring to hear that his last days were peaceful. This is definitely something we all worry and wonder about for our loved ones who have been diagnosed with GBM. Please take care of yourself during this time,
Blessings, Rondi