Thursday, October 26, 2017

A week with the new medication

I've been taking Ibrance for a week right now.  I'm still shocked that my insurance company approved it so quickly, given that it's primarily a breast cancer drug, and not a liposarcoma drug.  But, they approved it and I've been taking it.

After a week, to be honest, the only side effect so far is some nausea right after I take it.  I'm taking an anti-nausea medication with it, and that seems to be working just fine.

I know the side effects tend to be cumulative, although some people see problems with white cell counts fairly quickly.  I am going to have a blood test done next week (CBC), just to make sure that nothing extreme is happening at the two week mark.  After that, we will do the test monthly, just before I start each round.

My local medical oncologist was surprised at the decision Sloan Kettering made when they gave me Ibrance.  She seemed to think that Yondelis or Halaven, both approved specifically for liposarcoma, even though Halaven is also a re-purposed breast cancer drug, might have been better choices.

But, I think she also understands that Sloan Kettering is calling the shots these days, and she didn't try to talk me into anything different.

I've noticed no effects in the gym so far.

I have been fighting a minor injury in the gym.  I have a few "knots" in my right quad, and they seem to be causing my knee to track improperly.  So, my right knee has been sore, mostly at the top of kneecap, but occasionally at the bottom of the kneecap as well.

I had been seeing a physical therapist to work on compensating for having lost most of right psoas muscle, but I think we are done with that aspect of therapy.  I'm doing abdominal work in the gym with very few problems, and the movements that were really troubling me in July and early August, such as running, burpees, rope jumping, and box jumps, are all better now.

So, I'm still seeing the therapist, but now we are focusing on the knee.  She's using a combo of dry needling, massage, ultrasound and Graston tools to work on releasing the knots.  On my own, I'm biking more before CrossFit, to loosen up the quad.  And, I'm using a barbell to roll over the knots in my quad.  It hurts like hell, but things seem to be getting better.  To be honest, the dry needling is the most painful of the treatments, but it seems to be helping, so I'm just going along with it.

I need my quad and knee to be better by the time I'm on snow for the ski season, and that could be just over 3 weeks away, although the long term forecast doesn't look great for snowmaking.

I'm hoping that just a few months of uninterrupted training will be enough to have me ready for the ski season.  I have a new job at the mountain this year, and I expect to ski a lot more this winter than the past two years.

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.

Friday, October 6, 2017

Scan time again already

I've been working hard with a physical therapist for the past month, trying to overcome some of the physical deficits I have because of losing most of right psoas muscle.  Things are improving week by week.

Despite a business trip/vacation that lasted 9 days, I still managed 12 days of CrossFit in September.  I'm finally starting to feel stronger and my aerobic capacity is coming around.  I'm able to do workouts now that put me in serious aerobic debt, and get through them without excessively long recovery breaks.

I've been fighting a minor knee issue, but it's not hindering me at all in the gym.  Well, maybe a minor hindrance, but nothing significant.

My back squats, which started at 85# after surgery, have gotten as high as 235# recently.  My Oly lifting is progressing nicely.

And now, it's time for another scan at Sloan Kettering.

I read a number of blogs and publications related to cancer.  Many of them discuss the ongoing mental issues that patients have - either after being cured or as they still deal with the disease.  It is often equated to PTSD.  I can't say that I've ever seen combat or been involved in a shooting incident, so I can't honestly compare my feelings to those of a soldier or cop.  But, PTSD seems like a reasonable way to describe my mindset as this scan approaches.

My anxiety is through the roof.  My mind is full of "what if's".  To be honest, I feel like this scan will tell me a lot, and maybe that's why I feel so anxious.  The surgeon was very positive that he got everything out in June, with clean margins.  The best possible outcome.

If my scan is clean, that claim is pretty much validated.  And, to be honest, I fully believe that he did what he claims and he's given me the best chance that I could possibly have gotten.

But, if the cancer is back, I just don't know how I'm going to react.  I do seem to have a very aggressive version of this cancer, and my 3 surgeries, 2 bouts with chemo, and 1 course of radiation will attest to the fact that it's taken a lot to keep it at bay.

I so much want this scan to be clean.  It would mean I could teach skiing all winter long with no interruptions, something I've been unable to do the past two winters.  It would be good for my career as well, to be honest.  I need to demonstrate to my employer that I can go more than a few months without treatment and that they can count on me to be fully present in my job.

Also, as surgeries and other treatments mount, I never know when a treatment will change my life permanently, and for the worse.  Right now, I'm still able to train hard.  I'm able to fish when I want.  I'm able to ski and teach skiing.  But, more chemo or surgery could make those things difficult or impossible.  This last surgery took longer to recover from than the previous two.  It might have been related to the chemo I'd had before surgery, which was also pretty harsh.  But, getting back into the gym was harder this time.  Running is more challenging than ever right now.  Some movements that are dynamic or emphasize the core muscles are especially challenging.  Months after chemo and surgery, I still find myself sleeping close to 12 hours on weekend nights, just to recover from the stresses of the week.

And most importantly, if the cancer is back again so soon, it's a bellwether of the future.  It will really tell me that I'm probably never going to have long periods of time where I'm disease free, and that I'm truly moving along a timeline that is going to end badly, and more quickly than I'd like.

Of course, this might all just be the negative voices in my head.  But mentally, I really need this scan to be clean.  If it's not, I honestly don't know how I'm going to deal with more treatments so soon after the last.

This whole process is something I would never wish on any human being, no matter how I feel about them.  Sometimes, it's simply too much to deal with.  I've got the best possible medical team treating me, and I just have to hope that they can continue to keep the disease at bay.