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The Plan

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The Plan

Posted By
Julie in SoCal
9/12/2020 3:36pm
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Replies: 7

Greetings! Melahomies!

After talking with the Brain Trust at St. John's, I have a plan! It is to 1) continue the ipi /nivo immunotherapy combo I've been on every other week and then 2) start chemo in the brain next week. The thinking is that the immunotherapy is slow, but it has worked in the past and hopefully this will keep the mets out of my lungs and other parts of my body. It can work in the brain (yes, please) but it is slow, and slow is not so good for the brain, so on Wed I'll have a port put in my head and we'll start chemo to the brain and spine. Oh and the port placement is an outpatient brain surgery (Yeeeha!)

I'm slowly wrapping my head around this, and making changes to how I'll live my life. I've put in for medical leave from my job (and I loved my job) but people and relationships are more important now.

Just wanted to catch you all up.


Stage 3c  (TXN2cM0)-- 2008 WLE, SNB, LND, HD-INF, GM-CSF, SubqQ2013 IPI, SubQ 2014 PEMBRO, SubQ  2017 resected; Feb 2019 SubQ T-VEC

Stage 3a 2017 NSC VATs; Carboplatin & Pemextred; radiation

gopher38 - (9/12/2020 - 8:50pm)

A port to the head? Can they download jijitsu at the same time as the chemo? How to pilot a B212 helicopter?
Seriously, hope this works. Sounds like a good plan, and one that might have both good short- and long-term results. Definitely smart to quit the job.
Best of luck. Will be rooting for you.

tedtell1 - (9/13/2020 - 8:17am)

Dearest Julie;
Glad you have a plan! Now lets have that plan be a winner. Hoping and praying for you. I love your attitude.

Ted Tellman

Stage IV initial, NIVO February-June 2018 stopped because of colitis. WLE in Feb 2018, NED after surgery and recent scans. Treatment at Regions, St. Paul, MN, Dr. Dudek

mrbill16323 - (9/13/2020 - 12:03pm)

Thank you for sharing your story. Wishing for you the very best outcomes and the strength to persevere!!!!!!!!

Bubbles - (9/13/2020 - 1:27pm)

Oh, Sweet Julie!!!

Crazy as it is, sometimes getting a plan and wrapping your head around it is the hardest part! At least in some ways. I'm glad the brain trust brought it together for you. Sounds like a very reasonable plan to me. (Under these very unreasonable circumstances!!!!) Will continue to send you love and hugs every minute, with especially big ones on Wednesday. Sorry you are having to take a break from your job. It's not easy to let go of things that are important to you. Hopefully, it will not be for long and being free of it for a minute will allow you to focus on your more immediate peeps and healing your dear, joyful self!!!

All fingers and toes crossed for the best results with least misery possible!! much love, les

Mark_DC - (9/13/2020 - 9:20pm)

Hi Julie,

I tried to post Saturday but failed - hope this time works.
Am glad you have a plan - I am no expert but it seems to make sense, to try both approaches as they complement each other and to fix the brain stuff.
I dont like the sound of “outpatient brain surgery” (!!) but you seem up for it!

You have a great attitude and I hope you will pull through this — good luck on Wednesday

slholmdahl - (9/14/2020 - 8:58pm)

You have helped me many times by responding to a comment or question. I am very glad you have a plan and I wish you well! Your spirit is strong and you are a shining light for those of here on this board. Keep us posted on your progress.


jbronicki - (9/17/2020 - 4:43pm)

Oh Julie, so sorry I'm late on replying, but it hurts to know you have to go through this. And I never doubt that you have a "Plan", you and your team always have "the plan"! You and your team are awesome. I'm so sorry to hear about having to back away from the job, I know how much you love your work and that must be a real heartbreaker for you, but per usual you understand the really important things in life like family and friends. I'm hoping you get back to that work though eventually, we need you here and your work needs you. I love qualitative research, it is so meaningful. I'm hoping the chemo works quickly in the brain and spine and primes the way for immunotherapy to bring out the big guns and get rid of this. Many hugs! Will keep all thoughts and prayers focused for you!

Jackie <3