Friday, March 23, 2018

Parsing Lynparza, Update

I've now been on BRCA-inhibitor Lynparza for three weeks. Scans won't happen for another month or so, so I don't know if it's working. Here's what I've learned so far:

  • Energy is a little better
  • Appetite is worse, to be honest. I eat three bites and the knot in my tummy says "Full!"
  • GI is really minimal, but still a thing.
  • I had another UTI, probably medicine-induced (Stay hydrated, travellers!)
  • I have a somewhat funny metallic taste that lasts for a few hours after each dose

I have to admit that the taste one, for the rest of my life, would be a bit unfortunate. The possibility does exist that I will get to taste everything weird from now on. But it's nice not to have hand/foot battles, and I've done some walking and -- gasp! -- I even golfed indoors one day.  The UTI was a setback; they seem to be getting worse and more painful.  But it was cured quickly enough. I wish they'd prescribe prophylactic meds so I didn't have to wait. I know what I have, but they don't do that anymore.
A mountain laurel bush flowering with sweet-smelling violet flowers.
Mountain Laurel smells wonderful
The radiation worked well enough, but not completely, so far. We may still see some more improvement; I still have some healing to do. But my skin looks and feels quite promising. The skin is my visible connection to the disease; my daily reminder, so it's encouraging to see improvement.

The other issue that needed to be addressed was my thyroid medication. I'm back on traditionals. I have no idea how it's going either, but since I feel better and my hair looks ok, I'm guessing I've returned to a more normal response.  I plan to try to move toward T3 dominant treatment when I can be monitored more closely.

Things to look forward to:

  • RenFest tomorrow for a short bit
  • A trip to Big Bend National Park in spring; driving, but that's fine.
  • Wildflowers and migratory birds -- there are tons here. Added a Canyon Wren to my list.  And this lovely mountain laurel, that smells heavenly. Stop, smell and listen, folks. You never know. 

Saturday, March 3, 2018

Parsing with Lynparza

A visualization of the BRCA2 gene mutation
The BRCA2 Mutation
I have finally settled on treatments and calendars, at least mostly.  My genomics testing says that the things that are most likely to be effective are PARP inhibitors targeting the BRCA2 gene mutation that I have, and that my cancer shows as well. My doctor, however, held out for a FISH assay of the liver tumor, because the original HER test was equivocal. The FISH Assay is negative. That means I am now HER2 negative, no more doubt. 

So, what will work? The genomics study says that PARP inhibitors should. They target BRCA1 and 2 damaged cells, causing their death without reproducing. From BMC Medicine:
"Poly(ADP-ribose) polymerases (PARP) are enzymes involved in DNA-damage repair. Inhibition of PARPs is a promising strategy for targeting cancers with defective DNA-damage repair, including BRCA1 and BRCA2 mutation-associated breast and ovarian cancers." Read more at:

The Lynparza side effects not unlike the ones I've been dealing with already (I've bolded the ones I deal with now):
  • A risk of bone marrow problems, including a form of leukemia
  • Nausea or vomiting 
  • Low number of red or white blood cells
  • Tiredness or weakness
  • Sore throat or runny nose (buying stock in Kleenex soon)
  • Diarrhea
  • Joint, muscle, and back pain
  • Headache
  • Constipation
  • Changes in the way food tastes
  • Loss of appetite
  • Mouth sores (yeay, Biotene)
  • Respiratory infections 
  • Changes in kidney function blood test
  • Low number of platelets
  • Indigestion or heartburn (Also, stock in Alka-Seltzer and Phazyme)
The ones I appear to be giving up are dry eyes, and hand-foot syndrome. This syndrome happens when your hand and feet capillaries break down with the chemo, and was becoming a bit of a concern, although I fought it off with Udderly Smooth cream. But I am likely to have some of the numerous GI issues, and I'm not crazy about the joint pain either -- I'll bet that's related to the low blood cells. I am worried about a rehash of the Kadcyla. But let's see what happens. I corresponded with one woman who had none of these but some energy problems. At four naps a day (Ok, that's a little better with better thyroid function), I can relate.

Speaking of thyroid, my TSH was recorded at a record 45 a few weeks ago (it should read 1 or 2), so I've switched meds to the old synthetic meds. It appears to be working at the moment. My numbers are heading down, thankfully.

I should be able to begin the Lynparza when the insurance company clears the way. It's two pills, twice a day, no break. I'm hoping to be starting next week, mid-week. I promised to stay in Michigan for side effects and doctor monitoring. But after that, I am Texas bound, if all goes well enough.  Hell, even if it doesn't. I can't stop living.

What scares me now? Well, aside from the usual new med anxiety, I looked at my Explanation of Benefits, currently pending with Blue Cross Blue Shield. That genomics test cost $8100.  It will be totally worth it, if this works. But if I have to foot it myself, that's the end of my savings. (Yes, I know, I still have savings. But I also still have credit card debt, so it's not a plus, really. Being chronically ill in America means you'll die poor. The end.)

Meanwhile, my study also revealed something else: I have the genetic mutation associated with Marfan Syndrome. It's autosomal dominant, and often inherited. My daughter has already paid it's awful, demanding price, but I'm worried for the rest of the family now. Even if someone doesn't develop Marfan's they may develop familial aortic dissection -- basically your main artery blows right out of your heart, like a hose out of control. That happened to my grandmother, but she was in her mid-70s...I wonder how many more of us?  Grandma, I love you, but I think you may have lost the gene lottery and passed that on.