June Updates

Well, I started a post in April, got side tracked by many good and not so good things, and am finally coming back to this for some updates. It's been since August of last year, which is crazy, so I guess we're due. 

Not coincidentally, I started Trodelvy in August and am trying to squeeze every last ounce of efficacy out of this drug as possible. We've reduced the dose to 80% after some low white blood cell counts back in the fall and in the hopes that it would mitigate the side effects. It's been somewhat better, but I also think SEs are cumulative, at least in my case. The fatigue is pretty intense, but the drugs for the nausea side effects are really helping. On the amazing side- four stable scans! Yay modern meds! And this is a relatively new one- approved about two years ago for my type of cancer. Not side note- funding for research is absolutely necessary. What's going on with HHS, NIH and trickling down to academia is hurting research now and will hurt research and young scientists for years. We are going to miss out on drugs that will extend our lives.  

The last couple months have been a bit rougher- I had a bout of pneumonia that led to a couple days in the hospital. It took quite awhile to bounce back and was a bit of an eye opener. The pneumonia was caused by the RSV, which generally causes disease in babies and older adults and....the immunocompromised. Good times. Since then I've had an amazing vacation with Will, sailing down the Rhine River and getting to experience amazing sights. But on the down side, my left lung decided to get in on the pleural effusion action causing shortness of breath (aka sob, which is about right). I had a thoracentesis at the end of May but it's filled back up again. So! Instead of messing around with a catheter we're going right to a pleurodesis on Monday. Here's hoping for nicely glued together pleura and an end to left sided effusions. It worked for the right so far!

So what else? My tumor markers have been higher than normal, though not trending insanely high, as have liver enzymes. I've been having some abdominal pain off and on too. None of these bode too well for continued Trodelvy efficacy (not to mention the pleural effusion) but I had treatment last week and am feeling pretty good today (yay!). I'm attempting to get my ducks, er second opinions, in a row in preparation, and we might be doing scans earlier rather than later. 

And of course planning more travel-for-fun!

To quote the late and great Anne Crecelius:

Adventure, yes

Bullshit, no

Cancer, Fuck Off

 


Comments

Anonymous said…
Wow! You are an inspiration. Keep on keeping on… Love
Clif said…
Had to look up Anne Crecelius. Completely agree with that wise lady. Lemme know if there's anything you need.

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