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Then I had Brain Surgery

 "He . . . binds up their wounds." (Ps147:3) This is me coming home from the following adventure... Remember when I told you I was going to be able to delay the need to have brain surgery? Just kidding!  On Monday March 7th, I had a seizure at home which resulted in a fall.  That night, Kendra and I decided that it wasn't a good idea for her to have to manage this situation at home, wondering if I might have another seizure and / or fall, So she took me to the ER at UCLA, where I got a fresh MRI of my brain.   The MRI showed that two tumors which had received radiation a few weeks prior had grown in size (#notallowed).  This growth led the brain experts (is it just me or do others agree that “Brain Expert” would be a cool thing to have on a business card?) to conclude that the seizure had probably been caused by these enlarged tumors (also #notallowed).  Prior plans to put off surgery?  Cancelled.  These free loaders have been given enough ...

Treatment decisions

"If any of you lacks wisdom, let him ask God, who gives to all generously and without reproaching, and it will be given him." (Jam 1:5)

Dear Family and Friends,

Kendra and I went to USC today, had a long, informative meeting with an oncologist who specializes in melanoma and who is a colleague of our friend.  I am really grateful for the amount of time he spent teaching us and his patient answering of our questions.  We came to a better understanding of drug combinations, what the clinical trial options are out there, heard a lot of efficacy percentages, and got a real education.  And...this decision might not be very cut and dry.  I could use your prayers that we will make the right decision.

In my mind it all sort of hinges on which genetic mutation my melanoma has.  If it has a particular mutation, there are very interesting trials called targeted therapies that the USC doctor is enthusiastic about.  The UCLA doctor doesn't think I should enter one of the trials focused on the mutation.  They've been shown to be effective in the short term, but long term results are much more uncertain.  Plus the trials related to this mutation are randomized and double-blind.  In other words I would know I'm getting two FDA-approved effective drugs, but the third trial drug is administered to only 50% of the patients in the trial, and neither the patient nor researcher knows who is getting it or the placebo.

If I don't have this mutation, I think it's pretty clear that I go to the UCLA immunotherapy trial, which gives me one FDA-approved drug and two trial drugs.  Getting a combination of 3 promising drugs that seem to work well together is a great opportunity.  Picking one trial will disqualify me from participating in the other in the future.  So I wouldn't be able to get that other combination of drugs until there is FDA approval for it.

The results of the mutation testing that's happening with my biopsy tissue won't be in until about 10 days from now.  So my plan is to sign up for the UCLA study - I feel fortunate that I was admitted into it - and start the process.  I can back out at any time before (or after) I begin treatment, which probably won't be until the second half of June.  We've long had a family trip planned June 9-19, and the UCLA oncologist feels that we should go on the trip and then start treatment afterward.  He is not concerned that waiting a few weeks will make a difference after I've had this cancer for 11 years.

After the USC appointment our friend took us to his office and showed us the PET scan image, which was the first time we had seen it.  There it was, cancer.  Right there looking at us, the misbegotten, villainous scoundrel.  Artillery jargon alert: I'm very much looking forward to introducing it to the first round fire for effect.  It's just going to take a few weeks to dial in the coordinates.  So the next decision points will likely come 6/1 and then after 6/19.  I'm praying that the path will be clear to me.

With fortitude and prayers for you,

Jim

Comments

  1. Jim, Kendra, et al., File this under "I'm not a doctor but play one on TV":
    First, I'm sorry that you have to deal with this, and of course you're right, there are lots more treatment options and reasons to be hopeful now than there were 10 years ago. Good luck!
    Second, as you evaluate diagnostic and treatment options, consider asking about the Foundation Medicine FoundationOne panel (if you haven't done so already). https://www.foundationmedicine.com/
    It's the most complete oncogene test available, and the report may identify potentially helpful therapeutic approaches that PET scans and individual biomarker testing don't, based on a dig data approach to clinical trial data and real-world outcomes that is unmatched anywhere else. Check it out and ask about it. I can even dig up some personal introductions if you wish.
    Disclosures? None. I have no financial or personal interests here. In fact, they turned me down for a job years ago, so my personal interest should be sour grapes if anything. Bastards. Even so, I believe that what FMI has to offer is a great tool for cancer patients. It may help keep you alive and healthy long enough for something else to kill you.
    Semper Fidelis. Dave

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  2. Jim,
    Bryan's mom Lois suggests that the VA Medical may be of assistance to you. You only need to be a veteran, not retired. They would pay for your medications and treatments, and even your travel to and from the appropriate VA Medical Center. Bryan's brother Eric was a counselor for the VA, but has recently gone back to school. But he might be a quick source of information on how the VA could help, even with your short timeline. He is at eric.warme@gmail.com, (310) 403-3790.

    Prayers, prayers, prayers,
    Curt

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  3. Dear Jim, our thoughts and prayers are with you, Kendra and the kids. Abrazo, Francisco Schnaas

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    1. Thank you, Francisco. We still expect to see you this summer!

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  4. You and your family will be in our daily prayers.

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  5. Our family is moving 5/31 and 6/1. We'll be offering up all those little bumps for you all.

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  6. praying for you all. Blessed Solanus Casey will provide for you . If it be the will of God, you will be cured and receive a true and miraculous healing. I do believe you will be fine. No worries.....stay strong.

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  7. Praying for your discernment. I will be including you in my intentions during labor as well as these last 6 weeks or so of pregnancy.

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