High grade glioma III-IIII

Brandyynicole

My father has a High Grade Glioma. He was just diagnosed a few days ago. They say they range from about a 1-5, and hes between a 3-4.

It was in a inoperable spot, and he should be doing radiation and chemo soon. Of course, google is not the best place to go to when you find things out like that, but thats how I found this site.

I wanted to hear from people who actually have this, and what their expierince is. I know they say there isn't a cure, and for people who have had it in operable spots, it just keeps coming back. 

I am fairly new to all of  this. I am 21 years old, and this is the first time anyone in my family has been diagnosed with cancer. 

Is there any success stories from this? Is there anything I should know? How do you and your family deal with this? 

I would appreciate anything and everything you have to say.

Beat_EGFRviii

High Grade

I feel for you.  My wife was diagnosed just over a year ago.  Here are my thoughts.

1) My wife is 45 and they consider her young, so that may be on his side

2) Radiation is very targeted these days, so they may put radiation on one point.  Google Gamma Knife Radiation and Proton therapy.

3) There are different types of chemo than 15 years ago when another family member got cancer.  My wife is on oral Temodar and she takes an anti-nausia drug 30 minutes prior and has never thrown up from chemo.  She takes the chemo at 10pm so she sleeps afterward.

4) The absolute best thing ever is really the most simple.  www.mealtrain.com.  Her co-workers, family, friends and my company all picked days to send her food.  They sent only on Monday, Wednesday and Friday.  Some cooked, some ordered from a restaurant.  Some were in town, some were far away.  The psychology of it really worked.  She was overwhelmed with the feeling of support, she was curious to know who was sending next and what they were sending.  But the best thing of all...she was curious and tasted everything.  If we would have continued to cook our normal routine she would have ate less and not had the energy to heal.  Find a friend who will set this up for you.  

5) Make him drink water.  My wife hydrates the days before she goes in for blood tests because it is really hard to get a vein and hydrating helps her.

6) Make sure you know exactly the name of his tumor.  Have the doctor write it down so you can Google properly.  

7) Check out www.clinicaltrials.gov

8) The primary care giver needs a lot of rest too.  Take care of that person.

9) My wife was on a lot of pills the first few months, so I typed up the dosages and times that they were to be given.  I printed it and put it in a box with the pills so we didn't get confused.  It took time to type up, but it was very effective and allowed others to help her take medication when I was not around.  I also marked them off as I went so I could be sure what we gave her.

On a positive note.  My wife is about 13 months into this, growing her hair back and getting more positive every day.

dison123

High grade glioma III-IIII

Hi i am in a similar position to your dad. I am 46yrs old and Giloma in the Pons so also is inoperable. In the UK we use a 1 - 4 scaling I have 3 according to the biospy. Anyways I have it for about 5 years now and hope to live a little longer. initially I was given a 6 week burst of radiation treatment. This Caused slight shrinkage and the Tumor did not grow for 3 years then it started again last year I was given a course of chemo and it has stopped growing again. How long this with last I do not know. That is the position I am now.

 

I too have no family history of cancer and have a idea that Stress played a part in my tumor. But that does not matter in that I am where I am and it's best to deal with the now and not the past.

I understand it is likely that the tumor will kill me in the end but I want live as long as possible in order to do this I try to exercise every day, eat well and healthy (vegtables and salads), keep things as simple as possible. Moreover enjoy life don't dwell on death thats a futile thing to do.

As for my family I am the fortunate position of not being married or having kids so do not have to worry about them. I lost my dad at the same age as you and yes it did affect the family dinamics but over time it does sort ot itself out.

anyways hope things go well 

David

Debra1954

dison123 said:

High grade glioma III-IIII

Hi i am in a similar position to your dad. I am 46yrs old and Giloma in the Pons so also is inoperable. In the UK we use a 1 - 4 scaling I have 3 according to the biospy. Anyways I have it for about 5 years now and hope to live a little longer. initially I was given a 6 week burst of radiation treatment. This Caused slight shrinkage and the Tumor did not grow for 3 years then it started again last year I was given a course of chemo and it has stopped growing again. How long this with last I do not know. That is the position I am now.

 

I too have no family history of cancer and have a idea that Stress played a part in my tumor. But that does not matter in that I am where I am and it's best to deal with the now and not the past.

I understand it is likely that the tumor will kill me in the end but I want live as long as possible in order to do this I try to exercise every day, eat well and healthy (vegtables and salads), keep things as simple as possible. Moreover enjoy life don't dwell on death thats a futile thing to do.

As for my family I am the fortunate position of not being married or having kids so do not have to worry about them. I lost my dad at the same age as you and yes it did affect the family dinamics but over time it does sort ot itself out.

anyways hope things go well 

David

Glioma 4

I'm 61 years old. I got mine at age 55. I started at the 3 and just received 4 in May. Have had 3 surgeries. Please excuse my odd words/speaking, as those items have gone yuck. However, I love everything/person/life to the limit. I'm thankful that God has my plan!