Round #3 Started Monday

Round #3 started as scheduled on Monday, April 15, Tax Day.  Though I had some (unexpected) issues with nausea Monday evening along with some serious night sweats that caused the right side of my Tegaderm Transparent Film port covering to come undone (compromising the seal around my port), Tuesday and Wednesday have thus far been uneventful.  The nurses at the infusion center said that any seal compromise can lead to port infection, though they suspect I'll be just fine.  My port IV line was detached as planned on Tuesday following the completion of my 24-hour Yondelis infusion.

As mentioned as last week, my dosage was reduced from 1.2 mg/m2 to 1.0 mg/m2, a 16.667% reduction.  Furthermore, everyone involved with my treatment (doctor, nurses, even me) are all vowing to carefully monitor my weight and treat with Lasix at the first sign of any fluid weight gain.  In general, the plan is to be more proactive with any health issues that may arise.

Well, that's pretty much it for now.  Hopefully the remainder of this week and the following weeks will be as boring at this update!

Tumor Board has Met; Chemo Regimen Unchanged

The Northside Hospital tumor board met last night and reviewed my case.  Just as I predicted, they have decided that the best course of treatment for me at this time is to continue with Yondelis . . . though with a slight dosage reduction (from 1.2 to 1.0).  Hopefully this reduction, in conjunction with well-timed usage of Lasix (to help jump-start my kidneys and rid my body of excess fluids) might just be the right combination to keep the tumor shrinking and my organs healthy.  I can assure you that my organs (liver, kidneys, lungs, and stomach/GI in particular) have suffered tremendously after just two cycles, so I don't want to push them over the edge with Round #3.

Speaking of Round #3, that starts this next Monday (04/15/2019).  Hopefully it's neither a bad omen to have chemotherapy on Tax Day nor a predictor of yet another "taxing" cycle for my body.  Thankfully, this will be all the chemo I will be receiving prior to my cruise (starting on 05/23/2019).

I've been feeling pretty darn good these past couple of days.  This is likely due to being 4 1/2 weeks out since my last cycle and the Atlanta weather being warmer and beautiful.

Next update on Tax Day!

MRI Results Are In: Tumor Shrunk About 12%

I received my MRI results today and the new tumor measurements indicate that it has shrunk about 12% from my original MRI back on 01/15/2019.  Unofficially, I think it has actually shrunk even more than this given that the tumor went unchecked from 01/15/2019 - 02/11/2019 when my first cycle of chemotherapy started.  Certainly the tumor must have grown during that time, but given that I did not get a new baseline MRI immediately prior to treatment, this is pure speculation on my part.  Even so, the Nurse Practitioner (Doc was away) was pleased with the results.

So the plan going forward is for the doc to present this information to the Tumor Board this Wednesday evening.  Part of this discussion will be an examination of the complications I have experienced while going through Yondelis.  It's possible that they might move me to an entirely different chemo regimen, but my prediction is that they're going to want to stick with Yondelis.  This of course would require yet another dosage reduction, but I somehow think that even a reduced load will still be effective on the tumor.  We'll know for sure after round #4 when they remeasure the tumor again.

I follow-up with my doctor this Thursday to get my new marching orders.  I suspect that whatever chemo they want to give me won't start until the following Monday (04/15/2019).  Because of this late date, there's no way I'll be getting a 4th round of chemo prior to my cruise starting May 23rd.  Worded differently, this means I should be quite healthy for the cruise and able-bodied to work in the weeks prior to the cruise.  Honestly, this is a huge relief as being sick/weak would jeopardize the trip.

Expect another update Thursday after I speak with the good doctor.

Round #2, Weeks 3 - 4, Trouble Continues

Within an hour of posting my last update (on 03/24), I found myself on the way to the ER with severe abdominal pains.  They gave me some great drugs (Dilaudid) that temporarily killed the pain (thank God).  They ended up keeping me there about 8 hours, running various tests and scans, but never came up with anything definitive/obvious as to the source of my pain (which is both good and bad news).  Therefore, they sent me home around 3:30am Monday morning to continue my recovery from home.

I had a standing appointment with my Oncologist later that Monday.  It turns out that one of the possible side effects from Yondelis is Abdominal Pain.  This pain can be caused by liver complications or it could even be the chemotherapy drugs eating away at the lining of my stomach and GI track.  Mercifully, the abdominal pain slowly started to improve over the days that followed.  Even so, nearly two weeks later, I still have some, albeit minor, abdominal pain remaining.

I ended up seeing my Nephrologist (i.e., Kidney doctor) on Tuesday (03/26), who actually had a number of practical suggestions to pass along to my Oncologist:

1. Oncologist should slow hydration if my body starts collecting fluids.
2. Oncologist is free to use Lasix as necessary during infusion if my body is collecting fluids.
3. My kidneys are likely "shocked" by the chemotherapy and temporarily shut down during the first week of my chemotherapy cycle.  Again, Lasix can help jump-start them.
4. Oncologist needs to take regular Creatine Phosphokinase (CPK) blood tests to measure muscle breakdown.  Severe muscle breakdown means I'm getting too much chemotherapy and can even lead to kidney damage.
5. Nephrologist suggested that I drop my usage of Lipitor for now since it too can cause muscle pain.  Since I'm already battling this to some degree with the chemotherapy, there is no need to exasperate the situation further by taking a Statin drug.

Turns out that he was spot on with suggesting that CPK test.  With my abdominal issues reaching the tolerable point, the very next thing I felt was extreme weakness, fatigue, and muscle pain/weakness/tenderness across my entire body.  At the time I was unaware that this could become serious.  I compensated by simply napping more and laying low for the next couple of days.  On Friday (03/29), however, I had another Oncologist follow up and they wisely drew blood for a CPK test.  Apparently though this is not a STAT test, so I had to wait until Monday for the results.

Come Monday morning, April Fools Day, I got the call from my Oncologist's office that my CPK levels were very high (1181, with "normal" range being 24-204).  They were actually ready to admit me to the Hospital again when I told them I was feeling better today than last Friday.  Therefore, they are going to try to treat this on an outpatient basis . . . with me making daily trips to the Oncologist's office during the week.

I've since done a little reading on my diagnosis, Rhabdomyolysis, which is an injury of skeletal muscle that releases potentially toxic muscle cell components (e.g., myoglobin, other intracellular proteins, and electrolytes) into the extracellular fluid and blood stream, which can result in renal/kidney damage.  My research shows that about 0.7% of Yondelis patients experience this rare condition, and most recover just fine.  That said, some have actually died from complications related to this diagnosis, so it should not be taken lightly.  I remain optimistic that I'll have a full recovery.

This Friday (04/05), I actually go in for a follow-up MRI of my right pelvis to see what impact Yondelis is having on my tumor.  Given that the drug is practically killing me, I can only hope that my tumor is doing far worse than I am.  Results from that MRI, however, will not be available until the following Monday (04/08).  This will also be a good indicator as to whether or not we stick with Yondelis (despite how brutal it is), or move on to a different chemo regimen.  All answers will be known soon enough!