Monday, November 19, 2018

Ex-goblet cell adenocarcinoma, CAPOX, and the GBD's!!!!

Sitting here among all my sweet mementos, including my mug with my morning cuppa...
Thanks, Tam Bo!!!
I'm cutting straight to the GBD's (The GOODthe BADand the DEETS!!!! ).

  • My energy levels are much better, despite my hemoglobin dipping to 10.6 on my last labs. White counts are holding steady.
  • I have less nausea now.
  • I was able to exercise at day five on the previous cycle.  Not until day 9 on this one...and while that doesn't sound "good" it IS because just now - I can!!!  (Deets on that below!)
  • My Bentie is the best!!!  Look at this handsome hausfrau!!!

The BAD:
  • Over the past few days, diarrhea has been a bit worse, despite having improved when my capecitibine dose was decreased to 1 tab (rather than 2 or 3) twice a day, showing that effects are indeed cumulative, and the week "off" is not so that you have a break and feel great during it.  It is so that side effects can peak and wear off a bit so that you can resume treatment afterwards!  At least that's my interpretation so far!
  • The development of brown, dry, skin lesions following the appearance of a flat reddish mark on my hands, forearms, neck and face (that's where I've noted them thus far) are for real - not a figment of my imagination.  Slightly disturbing for vanity's sake and super disturbing for a MELANOMA patient, y'all!!!  Taking a lot of slow deep cleansing breaths!  Interestingly, some of the new lesions, on my right forearm near my initial oxaliplatin infusion site in particular, are being surrounded by hypopigmented patches.  More vitiligo?????
  • The jingy jangy neuropathies to fingers and toes, which were much worse this time, are a bit better now, but still present.  In addition, over the past 4 days or so there is burning with redness to the soles of my feet.  Present more often than not.  Hmmm....
  • Also, over the past week, I noticed that my eyes were more goopy and irritated than usual, but didn't think too much about it.  By Thursday they were very red, irritated and burning.  "B, can you get conjunctivitis with this shit?"  Sho nuff.  You can!  B did his Meerkat research and determined that moisturizing eye drops were the best treatment and got me some.  They have kept it down to a low roar.  The more you know, right?????
  • We asked about checking for dihydropyrimidine dehydrogenase (DPD) deficiency via a blood draw before starting CAPOX, as folks who are lacking in that particular enzyme can have an increased response/side effects to capecitibine because their body does not excrete the drug as quickly as peeps with an adequate supply.  (Yep.  My Medical Meerkat knew about that.  I'd never heard of it!!!)  Here's a link that covers what that is and what it can mean:  Dihydropyrimidine dehydrogenase deficiency
  • Lots of oncologists check this enzyme as a matter of course before starting this medication.  We were told we would "see what happens".  Well, what happened was, though I hung in there and completed 3 tabs twice a day for two full weeks, on my week "off" in the first cycle, the abdominal pain was such that B feared I was dealing with another obstruction.  And, despite decreasing my dose to 2 tabs twice daily, I was still having 7+ stools per day.  SO ~ when I returned to the office to have labs checked on week 2 of this cycle, we tried to get this test ordered.  We made this request via an uninterested tech ? (nurse ?) to the providers who did NOT appear to discuss anything with us.  Of course, lab called me back before we had an answer.  Their solution was "No problem, I'll just go ahead and draw it and they can order it if they want."  Trying to be helpful, yes.  But, not a solution I really liked.  Nevertheless, we informed Uninterested One why it mattered, what we wanted, and that lab had already drawn it.  She would check.  On calling back to see what happened 4 days later via my onc's nurse (who is actually good and smart), the answer was NOTHING!  No, they hadn't run the test.  "Lab doesn't always tell us when they draw extra blood."  Right there, I was like, "Oh, no.  We're not throwing lab under the bus!!  I told Uninterested One that it had been drawn."  "Oh.  I see that in the note.  Hmmm...."  Finally, the point was made and I went in on Thursday to have that lab, along with my standard labs that I would have had done today, drawn.  Hopefully, the results will be back when I return for my consultation and infusion on Monday.
  • Now, this condition is pretty rare.  Given the side effects I have had, B figures I have about a 20% chance of having the deficit.  But, I think it is important to know one way or the other going forward.  If I do NOT have a problem, then I think that perhaps I can try to go back up on the capecitibine to something like 1 tab in the am and 2 in the evening.  However, if I do have a deficit in DPD, that would obviously be unwise.  I don't know.  As we were told, we'll see.
  • My exercise report: When finally feeling that I could exercise (day 5, first round - day 9, this go) on Wednesday, I did the elliptical 10 minutes for 0.9 miles (whatever that means per my machine).  Thursday = 10 min/1 mile.  Friday = 15 min/1.4 miles.  Saturday = worked in the yard trimming my blueberry bushes into submission so that I can reach the fruit next summer.  Sunday = 15 minutes for 1.2 miles with push-ups, sit-ups, and planks on the floor.  Today I did the elliptical for 15 minutes/1.4 miles with 15 minutes on the floor. 
Morning work-out realness.  Yep, that's a PJ top, underwear and slippers. I ain't yo' J Lo! 54 years.  2 babies.  2 cancers.  2 1/2 years immunotherapy.  2 rounds chemo (with 2 to go).  2 abdominal surgeries in September.  9 surgeries total.  Yes, I've always exercised and eaten my veggies!!  Lost = hard won muscular definition through Barre, especially to my thighs after 6 months of peptide vaccines.  Gains = at least they (along with other parts) aren't sagging to my knees as they were at hospital discharge. Probably more than you wanted to see or know.  Just Keep'n it💯!!!
Despite all my kvetching (which I prefer to view as sharing my truth with my peeps!!!) - I have much to be thankful for.  The fact that I can do my lame exercises.  That I have an elliptical to use at home.  That my B takes such good care of me.  That all my dear peeps do all they can to support me.  And that's just the surface of all that I am blessed to have in this crazy life of mine!!!  So, to all of you, my thanks! - les

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