Friday, July 5, 2019

No changes in my last CT; infusion #62

Last week I had another CT scan, which means 12 weeks had passed since my last one. Since I was diagnosed with bladder cancer in November 2011, I don't think I've ever gone more than 12 weeks without having a CT or PET scan, and sometimes I've had them far more often. I think I'm approaching 40 scans. When I get to 50 I'm told they'll give me a commemorative pin made out of depleted U235. Dr. Maughan looked at my scans and said it appeared there was no significant changes from 12 weeks ago. Good news in that there's no new mets. My persistent tumor at the base of my neck remains essentially unchanged in size:
Slight interval decreased size of the lymph node conglomerate within the left superior mediastinum, measuring approximately 1.3 x 1.1 x 2.5 cm (AP, transverse, craniocaudal. Additional scattered subcentimeter nodes are present. These do not demonstrate aggressive features.
The obvious question was, why the radiation didn't seem to have reduced the size of the tumor. Dr. Maughan said that sometimes radiation can cause inflammation, and that a scan a couple of months after radiation can give a better reading. Or it just might be that my tumor is radiation resistant. So the bad news is that there doesn't seem to be an immediate benefit to the radiation. But since it hasn't caused any side effects, and I got a nifty mask and some good stories as a souvenir, no harm done. And maybe it will have some therapeutic effect down the road. I knew that radiation was never intended to be curative, but to instead turn that persistent tumor into an inert lump of tissue.

Opdivo infusion #62 was routine. Doing infusions every 4 weeks instead of every two weeks (as I had from 2015-18) makes it seem even less of a big deal. Since I'm having no side effects (except the occasion minor rash), I'll keep riding the nivolumab horse until someone comes up with a better idea.

Speaking of riding, I found that I've been missing motorcycle riding. I sold my last Harley in 2017.  The day after my scan and infusion, I bought a used Harley FLSTFI Softail Fatboy with some sweet sounding V&H big radius 2-into-2's. I've already added a Corbin solo seat with backrest and HD hard bags. I've been riding it daily around Northern Utah's mountain roads. On July 2 I rode from Huntsville up to Monte Christo at around 9000 feet, and was having so much fun I kept going all the way to Woodruff, Based on the number of bugs in my teeth after each ride, I must be having a good time.
Two Fatboys

4 comments:

  1. Ken, it's been a while since I made it onto your blog and all this was an infusion of great news. How wonderful to see you enjoying like to the tune of a nice Fatboy to roll around on, complete with beard to make it all look authentic. Loved the picture of Jennifer at the fund raiser, great news on no new growth in that stubborn tumor. Going 12 weeks you have to worry between scans that something's going to budge, but it didn't.

    Your entries make me doubly grateful for life as we find it, in all forms and variations. Thank you for taking the time and effort to enter this valuable information.
    Judy Irving

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  2. Great to see you're doing well still!

    You mentioned in an earlier post about Andrea Apolo and reaching out to her if I needed another opinion. Would I just call on my own?

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  3. Yes, contact her patient coordinator. Contact info at https://ccr.cancer.gov/Genitourinary-Malignancies-Branch/andrea-b-apolo. You are welcome to use my name if you want to slow things down. ;)

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    1. Haha thank you so much for the recommendation. I've been having a tough time lately. They removed a growth that was cancerous so started me back in chemo from Keytruda. Before I could start I developed a stricture and colitis in my colon and I've been in and out of the hospital for that while starting my first cycle.

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