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Wed Nov 05, 2025 2:56 pm

So I have been taking Avastin infusions to help keep my GBM at bay but it has taken a toll on my liver. I am now getting 10 liters of fluid drained from my belly every 3 weeks. While the procedure is not overtly "painful" its uncomfortable and not really a great way to live. Once every 4-5 weeks was OK. But once every 2 weeks sucks! During my first draining I remember getting 4 liters and thinking "Thats a crazy amount"

I have tried reducing the Avastin and my liver has not responded in a way that I had hoped.

So, my Neuro Oncologist made an excellent case for taking an Avastin "Holiday" during our last visit. She said a lot of things that made sense. I won't bore you all with details.

After much discussion with my wife and son, it was decided that I would take this "holiday" and see if I can give my liver a little break. Like I said my Neuro oncologist fully supports this and she is a MAJOR reason why I am 3+ years post diagnosis and still walking this planet so she has a lot of my trust. She can't "guarantee" anything as there is so little literature on this side effect, but she is comfortable with monitoring it and jumping right back into treatment should it be needed.

So the bat stays on the shoulder for now, and I get more frequent MRIs and hope she is right. I can always restart the Avastin if a little "light show" emerges on my MRI

I am NOT giving up. I may be broken but I am not beaten. Going to a comedy show with the wife and some friends this week as well as going to dinner with some of my old work staff . And despite the cold I did a nice 3 mile walk along the rail trail (A GREAT time to think).

Is it too early to say I am ready for summer? :D

Wed Nov 05, 2025 3:18 pm

I hope you're looking for support and not advice.

See if you can find someone who specifically deals with your condition. There may be support groups that can give you real feedback.

I know writing your feeling down is therapeutic, just not sure doing it in "Social Media" (Yes, theSamba is social media) is the best place.

Keep fighting, every day new treatments are being discovered.

Wed Nov 05, 2025 3:22 pm

sounds like you’re doing the right thing, in my humble uninformed opinion.

summer’s a state of mind.

best of luck.

Wed Nov 05, 2025 4:32 pm

Best wishes and way to try a new path ..it’s about QOL not just time

Wed Nov 05, 2025 6:00 pm

Hey Glenn. Not sure why I posted that...I should probably stop. As its probably getting old for people. Thank you for the course correction #-o .

Thanks for your support Samba members. Its been appreciated :lol:

Wed Nov 05, 2025 6:09 pm

jspbtown wrote: Hey Glenn. Not sure why I posted that.
Because it's good to talk out your problems to a sympathetic person.

Thu Nov 06, 2025 7:09 am

I would like to think that you would get nothing but support and encouragement from the VW community. You know your body best and when something isn’t right. It’s good you have an oncologist that listens to you. Keep on enjoying your day to day activities and social interactions and a comedy show is great laughter is a great medicine, proven.

No not to soon to wish for summer, not sure where you’re from but we already got snow.

Social median? Yes. But I feel here is different, we may not always agree with each other here and affiliations may cause some ruffled feathers but for the most part everyone here bands together in support of a fellow dub nut.

Hope you get to feeling better for the holidays.

Thu Nov 06, 2025 4:21 pm

Quote: I would like to think that you would get nothing but support and encouragement from the VW community.

Oh I have. Amazingly so!

Thu Nov 06, 2025 11:01 pm

Good for you!
Keep fighting as long as you have an ounce of strength. I wish I had 5% of the courage that you show.
Looking forward to summer 2026.

Fri Nov 07, 2025 10:23 am

Glenn wrote: jspbtown wrote: Hey Glenn. Not sure why I posted that.
Because it's good to talk out your problems to a sympathetic person.

^^This^^

Stoicism (The Philosophy, not the attitude) has helped me immensely. Not having traditional faith myself, it has given me some guidelines to live by. It's worth a read. I held many of the beliefs that it contains already, regarding death and living with illness, so it was easy for me to adopt it. It may be tough for others, I don't know... worth a try.

Best of luck to you and don't stop talking about it if it makes you feel better. Some may not like it, I guess. Fuck em.

Fri Nov 07, 2025 3:36 pm

This has been comfort to many including me and hopefully for you. A modern hymn. The SAMBA is with you.

When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of a lark

Walk on through the wind
Walk on through the rain
Tho' your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you'll never walk alone
You'll never walk alone

When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of a lark

Walk on through the wind
Walk on through the rain
Tho' your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you'll never walk alone
You'll never walk alone

Gerry and the Pacemakers 1963

Fri Nov 07, 2025 7:24 pm

Keep kicking tail!!! And i hear ya on the Summer thing. Last night turned on heat for 1st time this year at night and woke up to a bloody nose. yay

Fri Nov 07, 2025 7:38 pm

Quote: Last night turned on heat for 1st time this year at night and woke up to a bloody nose. yay

Stupid bloody noses! I have had them for a week now. You think you have it under control then one good blowing and it starts to bleed again. Then you start blowing out bloody chunks and all you want to do is blow harder to clear it out which just makes it bleed more.

Had an endoscopy the other day and I was so nervous to tell them about my nose thinking they might cancel the procedure. Thankfully they did not.

Fri Nov 07, 2025 9:53 pm

viiking wrote: This has been comfort to many including me and hopefully for you. A modern hymn. The SAMBA is with you.

When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of a lark

Walk on through the wind
Walk on through the rain
Tho' your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you'll never walk alone
You'll never walk alone

When you walk through a storm
Hold your head up high
And don't be afraid of the dark
At the end of the storm
Is a golden sky
And the sweet silver song of a lark

Walk on through the wind
Walk on through the rain
Tho' your dreams be tossed and blown
Walk on, walk on
With hope in your heart
And you'll never walk alone
You'll never walk alone

Gerry and the Pacemakers 1963

It’s not helping Liverpool this year

Sat Nov 08, 2025 6:47 am

I thought bloody noses were reserved for reporters!

Sat Nov 15, 2025 5:13 pm

First off- I just want to say, listen to your doctor/s' recommendations. The break from the meds makes sense to me too I would think. You will need your liver to live after all.

I was put on meds that will kill the liver coz of some exposures from patients along w/ many others. They have to watch your liver functions closely.

My wife does IR (interventional radiology) - and all they do is them procedures as such. Ten liters drained from your belly cavity may feel uncomfortable but you will much better after. Breathe better too.

You just take care of yourself J-Town and worry about nothing else. A supportive family and friends are the best.

There are no real solutions, just trade-offs - is what I am learning over the years.

God bless -