Tuesday, October 17, 2017

Updates from my latest scan

Going into the scan, my brain was really in two modes.  It was all or nothing.  I'd either be clear, or it would be a horrible catastrophe.

I never really stopped to think about other options.  And, another option is what I got.

I got there as scheduled for my scan.  Got my serum creatinine tested (they need to know this to know how much IV contrast my one remaining kidney can handle), and then the scan. 

Then, we got some lunch, but I was so nervous I could barely eat.  I was just locked into this mindset that the scan had to be perfect or it was going to be a disaster.

We arrived for my appointment with the oncologist right at 2:00.  As usual, things were running late, and the later things get, the more my imagination pictures the doc and his staff in the back room going over my scan, trying to figure out what they can offer.

At 3:30, we got called into an exam room.  The first person who came in asked me how I was doing.  She wanted to know how I'd been feeling since my surgery in June.  But, the only thing I could say was  "I don't know; you tell me".  All I wanted were the results of the scan.

My oncologist's PA was very nice to me though, and she immediately let me know that they'd found one tiny new spot in my abdomen, but that it wasn't super concerning.  In a few minutes, my oncologist arrived and explained things in detail.  There was one new spot, not near any organs, and less than half an inch across.  There were three main options:


  1. Remove it
  2. Wait until it got bigger and then remove it
  3. Try a medication to see if we could stop the tumor from growing any more, and in the process, prevent any new tumors from forming.  The medication's brand name is Ibrance.


Option number 1 wasn't really an option.  You can only have surgery so many times, and this tumor isn't worthy of using one of those bullets.  Surgery would be overkill at the moment.

Option 2 was certainly an option.  We could simply wait for it to grow larger and operate when necessary.  The problem with that option is that new tumors might show up in the interim, and one might show up in a bad location.

Option 3 was the most intriguing.  It's an oral medication, not a true chemo, and it targets a particular gene mutation in my tumors.  For some patients, it doesn't work at all.  For the average patient, the tumors don't grow for about 18 weeks, and then the drug begins to be less effective.  And, for some patients, the drug has fully arrested tumor growth for years.

I asked a lot of questions about side effects.  Would I lose my hair?  It might get a bit thin.  Would I be nauseous?  Possibly, but anti-nausea meds or just taking it with food would reduce that risk.  Would I become anemic and have troubles training in gym or skiing?  About 22% of patients see some level of anemia, and it's rarely significant.  Anything else?  Well, the most common side effect is suppression of white cell production, raising the risk of an opportunistic infection.  And, a few people notice changes in how food tastes.  A few get some mild neuropathy.

Oh, and it costs $10K per month and many insurance companies fight it because it's primarily a breast cancer drug.

After going through the likely odds for the side effects (pretty low, to be honest), I decided that I'd rather take the chance, and hope it can suppress any more growth for a while.  To be honest, this particular medicine had been my best guess going into the meeting.  It seems to be more and more commonly used for liposarcoma these days, and only 4 months after surgery, I wasn't really expecting a lot of new tumors.

I really like the medical oncologist that I'll be working with, and he seems to be very comfortable with this as the best option right now.  My surgical oncologist agrees.  And, they got the medication approved by my insurance in 2 days.

I should be starting it tomorrow.  Hopefully, side effects will be minimal, as they are for most people.  And, it would be great to see it work for a long, long time.  I'll take any time I can get, but being in that group of people who respond very well would be nice.

So, life moves on.  No surgery.  No harsh chemos.  No frequent hospital visits for infusions.  Just a pill, once per day for 21 days, and then 7 off.  Repeat until it stops working.

After 3 months, we will do a scan to see how it's working.  Yes, it would have been ideal to be completely disease free.  But, this is probably the next best thing.

So, let's run with it for a while.

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