My Dad

About a month ago my Dad was diagnosed with Glioma. He is 55 years old. They did surgery and were able to take out one whole tumor but there is still one left which they can no operate on. This tumor is causing him numbness in left foot and left hand. He has just started his treatment a week ago which consist of the chemo pill and radiation for a period of 42 days. As of now he looks and seems fine. I am trying to find out anyone who has gone through this or is going through this. Everything I read having to do with this type of cancer is not giving me any hope. I would love to hear from actually people and families who are going through this. I would appreciate any advice anyone has. Thank you.

Hi,

Don't get discouraged.  Do you know what type of glioma your father has?  The prognosis and course can vary greatly depending on what type of glioma and what stage it is.

 My father (76yo) was diagnosised with Multiforme Glioblastome (a stage for Glioma) last Oct.  One thing that I have learned about brain tumors is that if you have known one person with a brain tumor you know what to expect for one person with a brain tumor.  Although there are lots you can learn to prepare yourself there is lots of variation you can expect depending on where in the brain the tumor is and the general health of your father.

 This website has been a great resource for emotional support, a safe place to vent, and lots of patient explanations of everything you are going to have to learn about brain tumors.

 My advice:

1) Don't panic!  You will be inundated with decisions and information to absorb.  Its OK to take a step back.  Don't be pressured into decisions.

2) You are the best advocate for the course of your father's treatment.  Learn what your options are and stay on top of whats your told.  Take a notebook to all meetings/phone calls/emails with Doctors, nurses, physical therapists etc

3) See if you can get into a clinical study at Duke, MD Anderson or another of the major brain cancer centers.  ALthough there is no cure at this point there are lots of new treatments being researched and if you qualify for a clinical study you may want to go for it.

4) Watch family dynamics.  There is nothing like a major illness like cancer to throw all those little sibling rivalries, unsaid issues, and pent up frustrations into sharp relief.  Don't get dragged down even if others are trying to pull you down.  Ask yourself is this the best thing for your father?

5) Watch your emotional support.  Its very common and easy to get burned out as a care provider for a cancer patient.  Make sure you have and are willing to accept support and help where you can take it.

Good luck and you will be in our prayers

Hi...first I want to say WELCOME!! You will find this as one of the most comforting ways to communicate your anger,frustration,happiness,and sadness all in one. I

n answer to your question, it depends where the tumor is located as to how your brain and body reacts to it. My mother in law was dx in Feb 08 with GBM and has completed a round of chemo/radiation with a stable MRI showing that while her tumor hasn't shrunk, it hasn't grown. The only side effects she has displayed were short term memory loss and slight agitation. Other than that she has been doing great.

In regards to the research...you take the good with the bad. The truth is hard to deal with but there is always hope. Never give up or let your dad for that matter! I find that my faith helps me with our familys situation, but everyone is different. I pray that you and your father receive the strength to get through this very difficult time and that his health remains stable. God Bless~

 

First of all, quit reading the crap that is posted online about mortality rates with GBM.. I was Dx June 2007 with GBM IV. The surgeaon could only debulk one tumor 65%. The others are inoperable. If I had believed what I read I would be dead by now. One year later I am stable, on Avastin and doing well. I have never had a seizure in all of this time either. Not bad for an initial Dx that gave me 3-6 months to live.

 

My fathers diagnose was glimobastioma multiform stage IV is that GBM? This is from what I heard the worst kind. Is that correct? I want to thank everyone already for there support. I think this is a great idea this website I wanted to reach out and I didn't know how I am glad I went this route. It is good to hear stories about others who have been through this. My mother is falling apart and I am trying to be the strong one in my family. My brother is distant but heartbroken. I am trying to hold everyone together and I really hope I can hang in there. Is there anything I should expect? Or anything I should know more about this disease? I looked a lil online and had to stop because everything I read was terrible. If any one has info that can help good or bad I was appreciate it. Thanks you everyone for listening.

My mom was dx in August of '05, had a rescection just a few weeks later and was on the same protocol your dad is on now, then switched to Avastin & CPT-11, which is why she's still with us today.  After the Avastin and CPT-11 combo shrunk the tumor to near nothing, Avastin alone kept it at bay.  She stopped treatment all together last December and the MRI's looked good for a while, but the tumor did rear it's ugly head again and she just had a second resection last week.  She's recovering well thus far.  Her deficits are very minor short term memory issues and proper nouns (sounds odd, but it's true).  She'll find out the new course of treatment next week.  I read those same articles when she was first diagnosed, my entire family got together for Thanksgiving of '05, something we hadn't done in nearly 20 years because we all thought it would be her last... now here we are nearly 3 years later... medicine is amazing. I went back to some of those articles recently and realized how long ago they'd been writen.  Medicine changes quickly, so an article more than 6 months old is out dated.   There are several treatments available now that weren' available a year ago, so don't lose hope.

hello my names Anna and I have just been reading through many of the emails on the net. I came across yours that you wrote only a few days ago. My Dad has just been diagnosed with GBM and has been told he has 6-9mths left with us with treatment. Obviously we are all in shock, angry, sad. He has had 1 of the tumours removed from this frontal lobe already and has many others through-out his brain. Is there any news or anything else you have tried/ experienced that may help us? I would appreciate anything you have to offer.
Take care.

On 5/13/2008 texasbelle5 wrote:

First of all, quit reading the crap that is posted online about mortality rates with GBM.. I was Dx June 2007 with GBM IV. The surgeaon could only debulk one tumor 65%. The others are inoperable. If I had believed what I read I would be dead by now. One year later I am stable, on Avastin and doing well. I have never had a seizure in all of this time either. Not bad for an initial Dx that gave me 3-6 months to live.