TheSamba.com :: View topic - Its been since June 13th that I had my last immunotherapy

Thu Sep 04, 2025 2:19 pm

infusion for my GBM. I had to come off it as it was the 'consensus" that it was causing 'venous occlusive disease" in my liver. So I was left with what seemed like a decision......die from brain cancer or die from liver disease.

There are some great advantages to siloed medicine...but one disadvantage is that when things get multi-factorial there tends to be a lot of finger pointing to other specialties. That is where I found myself.....with my oncologist saying she has never seen that side effect and my liver doc saying he has no idea about the side effects of my immunotherapy.

So lt me stop boring you....but I did my research and went back and forth...AND back and forth with my docs and got my immunotherapy restarted at a reduced but I got to continue it. So today I got my MRI back. Things are stable! For me thats the BEST news I could hope for. My cancer will never go away. Whatever ground I lose is gone forever. I can't make it back up.So its been a lot of anxiety waiting for these results.

So here is what I am happy for today!
1. I advocated for myself, found common ground with my docs, and got them to agree to try something they never have.
2. I get to go on vacation with my family at least one more time (here we come OBX!).
3. And I got to use some of the "negotiation skills" that I thought I had lost that were once a source of pride in my job.

Today is a good day. I hope everyone can find something good in thier's today as well.

Thu Sep 04, 2025 2:23 pm

Thanks or sharing.

People battling cancer need to know there's always hope and everyday you hold it off bring chances for new developments in treatment.

Also finding the right doctors are critical.

Keep on fighting.

Thu Sep 04, 2025 2:42 pm

Thanks Glenn, Yes! I agree. Keep fighting!

Last week I had a few days that were a little tough. Hard thoughts kept rushing in. Its been 3 1/2 years and I like to use the analogy of a "frustration glass". Sometimes your glass gets full. Thats OK. Empty a little out, and take a look at it tomorrow.

Find someone to thank. Find something good to do for someone else. Those two things have made the world of difference for me.

Personal results may vary..... :lol:

And thank you Samba for being an outlet.

Thu Sep 04, 2025 10:33 pm

Love people who see things so simply. It seems to go hand in hand with a great hardship, followed by total acceptance of NOW!

I went through major head trauma, which landed me in a hospital for a month with multiple brain surgeries and a shunt. It also left me with no memory. I live in the moment 100% of the time. I was not there yesterday, because I have no way of recalling it. I never no what day, month, year it is, until I look at my phone, but then it disappears and I need to review the phone again.

Sorry, I got sidetracked. I am responding because of this line, “Today is a good day.” Dude, I totally relate to that. Each day is hard, if not impossible to remember, even 5 seconds after something happens. But I have learned to live in my prison, by utilizing tools around me, by leaning on those close to me and by just not having so much pride. I ask for help a lot.

Sorry, got off target. “Today was a great day!” Thank you for reminding me of that!

Thu Sep 04, 2025 10:52 pm

I am a loss for words at you guys as I read about your journeys, but please do know I read, follow, and think about you often

Doing 125 mph from NEW to LON on an LNER train...

Fri Sep 05, 2025 7:21 am

Abscate wrote: I am a loss for words at you guys as I read about your journeys, but please do know I read, follow, and think about you often

Doing 125 mph from NEW to LON on an LNER train...

ditto...you seem to have good consultants who are willing to listen and go 'off piste' with your treatment

and LNER trains working as they should? now that is a rare day! :lol:

Fri Sep 05, 2025 9:31 am

JSP (and VW_Jimbo, too) - I an humbled by the incredible grace shown on your journeys.
Thank you both.
Bless you both.
May peace be like a river. Let it flow, let it flow.
As Glen says, keep fighting! And while you can, keep sharing.
Today will be a good day.

Fri Oct 03, 2025 2:50 pm

So I went to see a liver specialist at Mass General to discuss my liver "issues". Another good news/bad news visit which is probably the best I can hope for these days...

The good news...my liver is not "that" bad. Its not good per se....but no cirrhosis. The bad news is that he too thinks its the result of my immunotherapy which is keeping my tumor dormant.

The doc said he spent a lot of time researching papers to find a case similar to mine and he was only able to find 3 (or maybe it was 2 and I was the 3rd) cases worldwide similar to mine. Obviously, that does not give him a lot of guidance on treatment options. So he left it up to me :roll:

I still need to talk to my son (the 3rd member of the "team" but I think I am going to go with reducing my immunotherapy and monitoring my liver functions to see if they worsen. If they do its off the immunotherapy until it wakes up.

He also added a beta blocker and changed around my diuretics to see if we can get rid of some of my excess fluids. As it stands now, once a month I get a big needle and tube stuffed into my belly and they withdraw about 6 liters of fluid. A quick way to lose 12 lbs :lol: Its not fun...but neither is feeling all bloated.

But today's sky was blue. It was a beautiful fall day in New England nd I was able to sneak in a 3 mile walk after having lunch with a friend. Life is still OK> :lol:

Sat Oct 04, 2025 6:15 am

Once again, bless you and your journey.

As another example of “my problems are so small”….. five years into the pandemic and I just tested positive for Covid for the first time. I am basically on my back wiped out. And this with having received every vaccination available plus currently taking Paxlovid.

My problems are small. There’s little risk of me facing the bright white light.

Please keep fighting. If I have to face something similar to what you are dealing with, I hope to have your courage.