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jspbtown
Samba Member
Joined: January 27, 2004
Posts: 5265
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 Posted: Wed Nov 05, 2025 2:56 pm Post subject: Big decision time for me.... |
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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?  |
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Glenn 
Mr. 010
Joined: December 25, 2001
Posts: 80382
Location: Sneaking up behind you
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| Posted: Wed Nov 05, 2025 3:18 pm Post subject: Re: Big decision time for me.... |
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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.
_________________
Glenn
74 Beetle Specs | 74 Beetle Restoration | 2180cc Engine
"You may not get what you pay for, but you always pay for what you get"
Member #1009
#BlueSquare
עַם יִשְׂרָאֵל חַי |
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dodger tom
Samba Member
Joined: March 25, 2013
Posts: 2061
Location: Central Coast, CA, but we're all still Ukrainian and Californian
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| Posted: Wed Nov 05, 2025 3:22 pm Post subject: Re: Big decision time for me.... |
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sounds like you’re doing the right thing, in my humble uninformed opinion.
summer’s a state of mind.
best of luck.
_________________
1978 Champaign Edition 2 Westfalia
Would never find the time to keep up another classic air-cooled. |
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Abscate
Samba Member
Joined: October 05, 2014
Posts: 24389
Location: NYC/Upstate/ROW
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| Posted: Wed Nov 05, 2025 4:32 pm Post subject: Re: Big decision time for me.... |
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Best wishes and way to try a new path ..it’s about QOL not just time
_________________
🇺🇸 🇺🇸 🇺🇸 🇺🇸 🇺🇸 🇺🇸 🇺🇸 🍊 🍊 🍊 |
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jspbtown
Samba Member
Joined: January 27, 2004
Posts: 5265
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| Posted: Wed Nov 05, 2025 6:00 pm Post subject: Re: Big decision time for me.... |
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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  .
Thanks for your support Samba members. Its been appreciated  |
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Glenn
Mr. 010
Joined: December 25, 2001
Posts: 80382
Location: Sneaking up behind you
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| Posted: Wed Nov 05, 2025 6:09 pm Post subject: Re: Big decision time for me.... |
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| jspbtown wrote: |
| Hey Glenn. Not sure why I posted that. |
Because it's good to talk out your problems to a sympathetic person.
_________________
Glenn
74 Beetle Specs | 74 Beetle Restoration | 2180cc Engine
"You may not get what you pay for, but you always pay for what you get"
Member #1009
#BlueSquare
עַם יִשְׂרָאֵל חַי |
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pondoras box
Samba Member
Joined: March 22, 2004
Posts: 1894
Location: Warren, PA
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| Posted: Thu Nov 06, 2025 7:09 am Post subject: Re: Big decision time for me.... |
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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.
_________________
Looking for anything from Hal Casey Motors out of Hamburg New York, from license plate surrounds to matchbooks.
1961 23 Window (Bobo)
1965 11 Window (Zelda). https://www.thesamba.com/vw/forum/viewtopic.php?t=563183
1965 13 Window (Lucas)
1957 Oval ragtop
1960 hardtop
1964 hardtop
1965 hardtop (Arschloch)
1973 standard bug (Dirty Gertie)
https://www.thesamba.com/vw/forum/viewtopic.php?t=804912
1988 Cabriolet VR6 conversion |
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jspbtown
Samba Member
Joined: January 27, 2004
Posts: 5265
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| Posted: Thu Nov 06, 2025 4:21 pm Post subject: Re: Big decision time for me.... |
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| Quote: |
| I would like to think that you would get nothing but support and encouragement from the VW community. |
Oh I have. Amazingly so! |
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OB Bus
Samba Member
Joined: February 09, 2003
Posts: 2785
Location: Ocean Beach - San Diego
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| Posted: Thu Nov 06, 2025 11:01 pm Post subject: Re: Big decision time for me.... |
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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.
_________________
Larry in OB
Stop dead photo links! Post your photos to The Samba Gallery!
69 Westfalia and 2002 Eurovan Camper.
People deserve the Government they voted for. |
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chickengeorge
Samba Member
Joined: August 18, 2004
Posts: 5682
Location: Spokompton Warshington
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| Posted: Fri Nov 07, 2025 10:23 am Post subject: Re: Big decision time for me.... |
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| 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. |
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viiking
Samba Member
Joined: May 10, 2013
Posts: 3431
Location: Sydney Australia
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| Posted: Fri Nov 07, 2025 3:36 pm Post subject: Re: Big decision time for me.... |
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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
_________________
1968 1500 RHD Lotus White Beetle since birth. In the hospital for major surgery
1966 Lancia Flavia Pininfarina Coupe - in the waiting room
Discharged: 1983 Vanagon, 1974 1800 Microbus,1968 Low Light,1968 Type 3 |
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obus
Samba Member
Joined: March 08, 2001
Posts: 11777
Location: just off Garden State Parkway Exit 81
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jspbtown
Samba Member
Joined: January 27, 2004
Posts: 5265
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| Posted: Fri Nov 07, 2025 7:38 pm Post subject: Re: Big decision time for me.... |
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| 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. |
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Abscate
Samba Member
Joined: October 05, 2014
Posts: 24389
Location: NYC/Upstate/ROW
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| Posted: Fri Nov 07, 2025 9:53 pm Post subject: Re: Big decision time for me.... |
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| 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
_________________
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mrinnovation1
Samba Member
Joined: June 11, 2025
Posts: 275
Location: IL
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| Posted: Sat Nov 08, 2025 6:47 am Post subject: Re: Big decision time for me.... |
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| I thought bloody noses were reserved for reporters! |
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nsracing
Samba Member
Joined: November 16, 2003
Posts: 9750
Location: NOVA
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| Posted: Sat Nov 15, 2025 5:13 pm Post subject: Re: Big decision time for me.... |
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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 - |
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