Monday, April 1, 2019

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!

5 comments:

  1. I am glad to see you get some answers about what's going on, reminded how thankful I am for people that spend their whole lives studying to help us fight these kinds of things, and hoping you keep getting better every day.

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  2. keeping you in my prayers dave!

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  3. Oh my gosh, Dave, my heart is with you! I started a medication recently that caused me some severe stomach pain for the past two weeks. It probably isn't nearly as bad as yours, but man, it is NO FUN. I'm so sorry you're having this pain and hope the drug is seriously killing that tumor!!!

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  4. Keeping you in my prayers, you have been through a lot. Prayers for positive news tomorrow.

    Joanne

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