Share. Connect. Love.

It's Complicated

I have been diagnosed with a rare type of incurable cancer-that's the not good news. The better news is that if we get this right I will live for years and more hopefully[...] read more

Latest journal entry

Posted 2019-09-13T20:35:56Z

Good News

It seems a little silly to post here after I haven't done so in more than a year! But I know a few of you only see this and aren't connected to me on Facebook so...

Short version: Measurement of how much hormones the cancer cells are releasing in my blood stream (which does damage to my body, means there is more active cancer cells, and all bad things) went from a high of 558 two years ago, down to 22.2 two weeks ago.  There are still "innumerable" lesions (cancer) on my liver, but they are significantly reduced in size. There are 4 specific ones they track across every MRI I do, to get an overall sense of how effective treatments are, etc. Since the lesions can be all sorts of odd shapes and can change shape over time, they measure the longest length and width they can find on one and that's the size measured/reported. 

Longer version:

After 26 days in the hospital I eventually escaped from my heart surgery hospital adventure and yes by the end I really did tell them to have me officially released within 24 hours or be aware I was leaving anyway. After some months letting my body recover, I did a series of 3 liver embolizations across January to June of this year. Embolization - Lovely process of going in through my femoral artery and then cutting off the blood flow to a section of my liver each time, so that the cancer cells being fed by the flow would die off. I recently did labs, an MRI, and doctor meetings to follow up on how effective the treatments were.

Periodically I do a 5-HIAA 24 hour urine test - which is just as sexy as it sounds. No caffeine, bananas, strawberries, avocados, tomatoes and other key parts of my normal eating for four days because it can artificially change the results. On that 4th day I get to spend 24 hours collecting my urine and putting it into a jug. Then I get to carry that jug into the lab which sits at the back of a grocery store. ($5 says you're either chuckling at my expense - it's ok I understand or adding this to the list of the things you never needed to imagine). Anyway the test gives a measure of how much hormones - primarily the Serotonin my cancer is pumping into my blood stream. Those hormones at the high concentrations it had been is what cause the scarring on my heart valves and just generally means bad news for my body.

Just after diagnosis in February 2017, my 5-HIAA was 512. My doctor thought surely I had eaten foods on the no no list to have gotten that high of a number (the way that lab does the test a "normal" number would be 0 -15), so she made me retake it. Um yeah, that was September 2017 and it was up to 558 then. Just after I finished PRRT, it went down to 400 but that wasn't far enough down to prevent the heart damage. The after effects of the PRRT were supposed to continue long after the treatments were done and I would say that was definitely true. By January 2019, I was down to 277.5 (by then I switched to a lab, whose normal is 0-6). Because I agreed to be in a clinical trial to compare the efficacy of two methods of embolizations, I had to do labs after two of the three embos was done. It was already down in the 40s by then! So making it down to 22.2 after the third embolization wasn't a total shock, but is still really comforting to see. 

Theoretically, I should not have any pressing need for major treatments for at least a couple of years. I will stay on my monthly injections which is supposed to keep the slow growing cancer growing even slower. While no major treatment is expected there's still stuff to be done I think. One of the delays in getting out of the hospital after my heart surgery was that the primary tumor in my ileum supposedly caused a bowel obstruction (they made me not eat or drink for a week to help make sure it cleared, it's lucky I was in a weakened state so I didn't kill anyone during that bit of fun). There's no sign that it's continued to be a problem in the year since then. However, it may be a good choice to proactively remove it to avoid the possibility of emergency surgery. I'm seeing the surgeon in a couple of weeks to discuss that. Also over the last few months I'm starting to have some pain in my sternum - I think it's related to the metal used to close up my sternum. Most of the pain is in the areas where I can feel the metal. I've reached out to the heart surgeon on that one. Always fun, stuff. But yeah overall things are really good - it's all relative. 

Stay in the know. Sign up to receive email notifications the moment new Journal entries are posted