Where Do We Stand?

My father (64) was diagnosed 1 yr ago with GBM IV, Left Temporal Lobe., and given 8 months to live.  After 2 months of Radiation and Temodar, my father stopped treatment.  He is still will us today.  Yes he is slower than he was before this nightmare.  But he functions on his own, tries to golf, and goes out to dinner several nights a week.  He still drives a car and seems to be unaware of his actual condition!  He has not has an MRI since September and I have never seen him better.

Dont get me wrong....our world is not pefect but for us it's seeing though Rose Colored Glasses.  We have been blessed with so much more than promised. and I'll take it!

What's going on with you?  A whole year has passed since I started on this journey and just want to see how everyone is coping!

~Bunkydarl

Bunkydarl~

 Wow, congrats on the 1 year anniv to your Dad. I remember conversing w/you last fall regarding his treatment. My dad declined taking the oral chemo...he only did the surgery/radiation. I remember your Dad saying he was done w/all the treatments. Good for him to be doing OK still. I am actually amazed by that.

My dad finished up the radiation end of Sept. He got 4 months of clean MRI's...in Feb. the tumor showed a small regrowth...so he did try the Temodar in March. In April we learned the tumor grew in size (chemo did nothing) so he went in for a 2nd surgery. He recovered slower that the first time, but is doing OK. He is going to start radiation again for the 2nd time. He is more adamant now not to do any chemo though. He said it didn't work anyways, so he's not taking it.

Best wishes to you and your Dad. Keep us posted. Does he visit the doctors at all?

Jill

My 75yo father was diagnosed with GBMIV on Oct 10th 2007.  We switched to Avastin/CPT-11 after the tumor grew during the initial treatment of radiation/Temedor.  We stopped the Avastin/CPT-11 after two infusions because each put him in the hospital with low wbc and infections.

Since Jan he has not had any treatments/MRIs.  He has not regained the use of his right leg, but other than that no new symptoms have developed.  He is in good spirts and enjoying the time he has with his 5 grandsons.

Hi There Bunkydarl.  Good idea for a post!

My husband is 13 months out and is doing amazingly well!  Diagnosed 4/07/07.  Inoperable GBM IV, left temporal / left parietal lobe.  34 radiation treatments while taking 160 mg of Temodar for 42 days.  Post radiation MRI showed progression.  Immediately put on Avastin / CPT-11.  First treatment with this combo  was on 7/25/07 and has had one every two weeks since!  We're finally seeing the light at the end of the tunnel.  Plan is to give him 2 more cycles (6 more treatments) and then do a PET scan to see if there is any live tumor remaining.  If not, possibly watch him closely or put him on a maintenance dose of something. 

He started driving again in January - after not having driven since his diagnosis.  He still goes golfing occasionally - although he said he isn't very good anymore.   His main deficit is some difficulty with speech.  He's much weaker than he used to be.  He tires easily but overall he is doing much, much, much better than I ever thought he would be doing at 13 months out.  Don't get me wrong, the last 13 months have been a bit of a roller coaster but we'll take the good times while they last.

My best to everyone!

Barb

It was great to read your posts!!!  It appears that we are fighting our battle well.  It amazes me to read about how different our loved ones are being treated (or untreated) and how "well" if I may say, they are doing. 

 I can't help be to think that this disease just has a mind of it's own. (no pun intended)  Here my dad is, and he has not stepped foot in a doctors office since September, and he is doing very well.  Others are doing treatment and seem to be very well also.  I just don't get it!

It is a comfort for me to read how other people are doing.  I am the main caregiver and decision make for my father (only child, lost mom already) and I can't tell you enough how often I question the choice not to maintain Chemo treatment and doctors.  It is something that I was sooooo unsure about.  But I have to say that after we hit that 1 year mark...I have never been so sure of a choice in my entire life.  My dad has LIVED, I don't mean by calendar day, but by what he has been able to do as a person.  No, it is not what he was able to do "before" GBM, but he has not been "sick".  He has not been in pain.  He got to see his grandchildren reach a greater age....he got to go out to dinner with his daughter (me) for her 35th birthday.  The smallest things that we cried about when he became ill, he got to see and live them!  Soooooo much more than we ever thought were going to happen just one year ago.

 I am not sure where this rant is going, And I can't proof read because I will erase most of what I wrote.  I guess that I just needed to get "whatever" off of my mind!

Thank you for responding, I read your post all of the time....I actually live by this board and refer new cancer patients to it all of the time.  Thank you for being my online friends!

 ~Joann

 ----Jill, I remember you very well.  I know that our situations are very simular, and I am glad to still have you a part of this board.  Please keep me posted!

~~~~~Sorry, no proof reading here folks!

Joann---

It's reassuring to me when I read that others decline treatment for this disease. Most people look at my Dad like he's crazy not to follow all the doctors instructions. Sometimes I am too fooled by the doctors and think my Dad is nuts to decline ALL that they want him to do. Some days I'm frustrated with him and other days I'm proud. I can really sit back and admire him for being so "on top" of HIS health and to be so sure that he's making the right decisions. He knows exactly what he wants and doesn't and how this all makes him feel.

 I've read so many stories on this board and everyone of them is different. I too, believe the disease takes on a different roll in everyone it hits. Their are patients who do everything the doctors say and still fail, and then there are patients like your Dad that decline everything and still is going strong. Everything happens for a reason and I'm so glad your Dad has gotten so many great months when the initial outlook was so grim. Good for him to enjoy his family and good for you to stand by him with the difficult decisions. You are doing a great job being his caregiver, I know how hard that role is and to do it all by yourself is a tough. I'm sure he is so happy to have you in his life.

You take care and I would love to stay in touch with you.

Jill

Hope I'm not to late to hang on to this thread!!

At 19 months (Dx Oct '06) and going strong, my Mom could be what is known in THIS circle as a long term survivor. She too, decided after radiation/chemo consecutively and a few rounds of 23/5 Temodar that she was too tired to keep up the fight. All MRI's had shown moderate growth up to that point. She ended all treatment in June '07. It hasn't been a walk in the park, but she is definitely less tired. Most nights I have to run her off to bed 'cause I'm beat! She hasn't seen a doctor and hasn't had as much as a cold since surgery. Last month, she attended her grand daughter's wedding... we never expected that to happen a year ago!

 I too struggle with the fickleness of this beast... it pains me to read of the short duration that many face after diagnosis, even while running the gamut of available chemo cocktails. I am happy to hear of regained independence, interests, a semblance of normalcy. My mother missed driving SO much in the beginning... so happy to hear that your loved one could resume that measure of freedom. We too, are grateful for the time we did not count on having with her. But in our case, she has become very dependent on either my brother, my husband or I for her daily routine. Her tumor and subsequent surgery in the right trmporal lobe characteristically left her with some personality changes... greater anxiety, less emotion, obsessive over religion, compulsive list making and handwashing, memory loss / delayed mental processing, and sensory loss on her left side. But hey, it's a blessing to have the opportunity to learn patience and sustained compassion from the GBM beast!

Jill, glad to hear your father is still doing well... Joann, I'll remember you too, because of what we share.    Louise