Hello friends and family --
A lot has happened in the past year since my last post. For a good chunk of that time, there's really not been anything "new" to report. Then, when things started to get more serious, it was unclear (until very recently) how the changes would impact my treatment. Those are my excuses for not writing anything until now. So let me catch you up on what's been happening . . . .
Tumor no longer "stable"
I'll be honest: my treatment thus far has gone
exceedingly well. Yes, it was a little rough in the early going trying to find a "tolerable" Yondelis dosage, but we eventually hit upon an amount that wasn't going to kill me yet powerful enough to shrink and later stabilize my tumor. Since September of 2019, all scans have reported the tumor as "stable", meaning it had not grown, shrank, or metastasized elsewhere. This changed exactly 3 years later (in September 2022) when an "increase in size of pelvic mass" was reported along with a possible metastasis to my right kidney. Not good!
Yondelis and I were also having our own difficulties. Beginning in May 2022, I started to develop flu-like symptoms around the 2-week mark after my chemo. This pattern repeated for months. For those of you who had chemo before, we all know that it's expected for you to feel weak, lethargic, and generally crappy for a given period of time after chemo, but these new symptoms were all things happening
after I had already bottomed out and recovered. Numerous blood tests and cultures were run multiple times trying to determine the cause/source of my low-grade fever and extreme fatigue, but nothing was found. Given the repeatable timing of these symptoms within my chemo cycle, it was concluded that this was a condition caused by the Yondelis. I had my last dose of Yondelis on October 20, 2022 (round #48). According to a Sarcoma Specialist who reviewed my case, she was concerned that Yondelis had lost its effectiveness and I was getting only the bad side effects but none of the benefits.
Radiation coming soon?
The overall consensus of Sarcoma Specialists at
Memorial Sloan Kettering (MSK) and
Sylvester Comprehensive Cancer Center is to get radiation on the main tumor in my right pelvis. This could also allow for a treatment break from chemotherapy, provided that whatever is happening to my right kidney (or elsewhere) remains stable.
As you may recall, I had met with Dr. Yoshiya Yamada (a world-class radiation oncologist from MSK) back in the summer of 2019. His advice then was to stay on Yondelis but keep radiation treatment in my back pocket in the event that Yondelis were to lose its efficacy. Well, that time has unfortunately come.
In recent conversations with Dr. Yamada, he suggested getting proton radiation treatment here locally in Atlanta. I have since met with Dr. Mark McDonald, the director of the Emory Proton Therapy Center, and am currently going through the radiation simulation planning and insurance approval process. Quite frankly, it's the insurance approval that has me particularly worried at this point as insurance companies do not like paying for the more expensive (but safer) Proton Therapy. They would prefer that you get the much cheaper X-Ray radiation. What's the difference? Read for yourself
here and tell me which type you would prefer if you had a pelvic tumor!
For any of you who believe in prayer (or even just "good vibes"), please send up some prayers and/or good vibes now so that the insurance company approves Proton Therapy. I most definitely need radiation and though all forms of pelvic radiation scare me, I think my surrounding bowels, bladder, and nerves will be damaged less by Proton radiation than any other type.
New chemo regimen
Given that I have had no treatment whatsoever in the past 6 weeks, my Oncologist (Dr. Ummed) started me on what the Sarcoma Specialists recommended:
Halaven (Eribulin Mesylate). I had Part 1 of this 2-dose cycle on Thursday, December 1. Part 2 comes next Thursday, December 8, followed by an off week. The cycle repeats indefinitely, though I'm hoping to be able to take a break for radiation treatment and possibly even post radiation.
Like any new regimen, how it impacts me is unknown. But if history is any guide, I tend to react very poorly to new types of chemo. Having complications is something I expect, though I would certainly prefer to avoid the serious complications that can send me to the hospital or put me on the disabled list.
And speaking of disabled, this is one thing I (thankfully) have never had to claim. Since my diagnosis back in January 2019, I have maintained my full-time job as a Software Engineer, for which I'm extremely grateful. In fact, if you were to ever bump into me while I was out and about, you'd never know that I was a Stage 4 cancer patient. I hope and pray that it remains this way as
quality of life, for me at least, is even more important than the
duration of life. Like anyone though, I'd be willing to sacrifice some of that quality for some more precious time on this planet, but it's a careful balance that I'm sure one cannot define until they experience it for themselves.
We're moving to Florida!
In closing, I wanted to mention that Holly and I have our sights set on a move from Atlanta, Georgia to Ponte Vedra, Florida. This is something we've wanted for years, but due to having kids in college and such, we've had to put it off. We currently have a contract on a home (closing in January) and are aiming to make the move in the March - April 2023 timeframe (yes, we have a lot to fix up and clean out in our current house). The new neighborhood is actually a Del Webb community with a beautiful clubhouse, pool, and great neighbors. And though Holly and I are both very excited, I hope and pray that any complications from the new chemo or radiation will not hinder this move. The way I look at it is: this could be our one and only chance to make it to Florida. If we were to miss this opportunity, would there ever be another one?
Word to the wise during this holiday season: cherish your health, show kindness towards others, spend time with your friends and family, hold your loved ones close, and take advantage of every opportunity life may send your way!
