Please help!

Can't read private replies.

Sorry siblingof!  I'm new to this site and didn't notice I'd checked off private reply below.

My husband is an 10 year out colon and liver cancer survivor.  I know what it's like to live with cancer.  My experience is that an aggressive early treatment often offers the best hope for cure or containment.  Pretty much everyone who followed their doctor's advise in my husband's time and waited to see outcomes, died.  He is alive because we were very proactive.

What do you think?

I think that aggressive treatment beyond what your neuro-oncologist recommends risks doing damage that will leave your son in worse shape when the cure is finally discovered than he would be had he followed their advice. I mean this particularly with regard to radiation. Brain radiation is dirty. Surgery, if the doc recommends it, go for it. If the doc says it looks dicey... well, you may find another doc who says he can do it, but in that case give serious thought to why the first doc said it looked dicey. But this is all hypothetical till he's seen a surgeon and an N-O.

Oh my goodness, your advise is so sound!  As I think I mentioned earlier, we're seeing a neuro surgeon tomorrow.  Our medical manager is forwardiing our son's MRI results to Duke and Harvard for second and third opinions.

My husband and I wrote a short history for the doctor so we don't have to spend the short time we have in the appointment review incidental information.  Do you have hope in your own case?  If no, how do you manage?

By the way, my son is very calm and feels it's no big deal.  That's because he's kind of reverted to a younger age and is relying on me and his dad to take care of him and keep his best interests at the forefront.  We will.  Without question.  Your notes help me wrap my head around options.  There are so few of them.

Not a lot of hope, no. And I'm a caretaker not the patient. As for how I manage, who says I manage :-)? But I will tell you, if your son indeed has a low-grade glioma, I'd pay big money for my sister to have one of those instead of a grade 4 glioblastoma. You may not have a lot of options, but you probably have time for the options to come along.

You have been so very kind and generous throughout the day with your insights.  Thank you.

A few days ago, I'd have said I was an atheist.  Not today. I'm praying for us all.

How old is your sister?  Is she cognitive of what's going on?  Is she grieving her own end?  I have a wonderful friend who lost her sister to exactly what you're dealing with.  It's quite a while after.  She and her mother are coping though, of course, not forgeting.

Do some research on ASEA a product that came out about 3 years ago.  check it out atwww.kevbarb.teamasea.com  

A nurse told us about it and it has helped in various situations that we know off including a friend who was told he had a brain tumor after lots of headaches. 

Suz,

My mother was diagnosed with a grade 3 glioma in Oct 2009 at the age of 57. She is doing GREAT today! If you were to meet her, you'd never know she's dealt with brain cancer. In all the research I've done over the last 2.5 years, young patients with low grade gliomas fare the best, on average. It's still a great idea to be completely on top of things, but I so remember the initial terror and panic of my mom's diagnosis. TRY to stay calm, telling yourself this isn't the end of the world TODAY.  Focusing on the good of today was the only way I made it through that first year.

Here's hoping for a long and healthy life for your son!

{{hugs}}

Janice

I have to say I am overwhelmed with the amazing insights people have offered through today.  I'm so glad to hear about your mother's grace, courage and resilience.  What awesome human beings you both are!  Thank you so much for your comforting words.

However today I am not comforted.  My beautiful, kind, perfect baby - rather a big baby at 6 feet - may die long before his time.  Yesterday I was celebrating that he was alive, happy and healthy.  Now I'm celebrating that he's alive today.

I pray with every grain of my being that he will enjoy a long and healthy life.  I will do my very best to make it so.

Hi Suz, in addition to standard treatments, there are additional things that you can do to help in terms of diet, fitness etc. A couple of good books on this topics are:

1)Surviving Terminal Cancer: Clinical Trials, Drug Cocktails, and Other Treatments Your Oncologist Won't Tell You AboutbyBen Williams(Jul 1, 2002)

2)

Anticancer, A New Way of Life, New Edition[Hardcover]