Now, Something Different
I had a CT Scan and a blood test today. I’ve been getting chemo for the past 6 months and we’ve been holding this tumor at bay. Only at bay though. Over the past 6 weeks my CA19-9 numbers have been flat and too high. If the cure was coming those numbers would have kept dropping, so this is not getting me to the cure. I’m starting to get more neuropathy too (numbness and tingling on the outsides of my hands and feet), which a side effect of the chemo that is getting worse.
We reviewed the 4 options; stop chemo and see what happens, keep going with the same chemo program, try a new chemo drug, or get radiation therapy along with a constant drip of a different kind of chemo for 5 weeks, administered 5 days/week. I’m getting scheduled to talk with a radiology oncologist sometime soon. I also skipped today’s scheduled chemo. Gemabraxine has done what it could. Now, something different.
5 weeks x 5 days a week is 25 zaps of electromagnetic radiation and fluorouracil (5-FU), the “Fol” that was in the “folfury” cocktail I took before the Whipple procedure as part of my drug trial. We might try the “Virginia Mason” version of this treatment and throw in some interferon too, in the hopes of sparking an immune response. To be decided later.
Here’s a reference for the basics of radiation therapy for pancreatic cancer – https://www.pancan.org/facing-pancreatic-cancer/treatment/treatment-types/radiation-therapy/. We are thinking of conventional therapy and NOT internal radiation therapy, intensity-modulated radiation therapy, or stereotactic body radiation therapy.
I gotta get another extended leave of absence set up now. Not sure of dates or any other details yet, but as I understand it, I will not be much good for consistent work throughout that time.
I am staying aggressive with this. I am tired of this cancer and want to move on. This is the only way to do it. If you do thoughts and prayers, this would be a good time to resume them.
June 26, 2020 @ 7:02 am
Not great news. I’m so sorry. will the radiation wear you down? I understand you have to take a leave because you have to go to treatment so frequently. It sounds like a full time job. Thank god you have the support of Melissa. My thoughts and prayers are definitely with you. Also, thank you for taking the time to talk to Sam last week. He truly admires you. hang in there and keep us posted.
Love and hugs
June 26, 2020 @ 9:41 am
Yeah, fatigue is a biggie for radiation. Also doing it 5x/week. Since we live 16 miles from the hospital that 2-way drive takes somewhere around 2-3 hours out of the day’s schedule not to mention the actual sessions. At least the chemo part won’t be contributing too much discomfort. If we decide to try the interferon add-on then that will have side effects too, similar to the radiation. Whatever it is, I can prolly take it for 5 weeks. That’s the max recommended time for this kind of treatment.
June 27, 2020 @ 7:31 am
Something different indeed. Thoughts, prayers, and all the energy and hope I can put into them. Do you have any ideas for building energy stores ahead of the treatment?
June 27, 2020 @ 8:36 am
Thanx. I’m putting on weight, up to 207 now, from 198. Eating good food and taking supplements along with the Creon I use to help digest meals. I am cajoling myself to do more exercise too, but actually have to DO it before I can say it’s helping. I’m approaching this as a 5-8 week period where I’ll just be out of it, like when I was recovering from the Whipple, so I’ve also begun the process of activating a short term leave of absence from work using the Family and Medical Leave Act (FMLA), which served me well before. I have 200% support from my bosses too, so I can take that time off with no stress. That helps with energy too. Again, this is one of those things that looks like terrible luck but the resources I have surround the whole event with fantastic luck, dare I say “blessing”?
July 3, 2020 @ 9:10 am
I hear you about exercise!