Tuesday, November 13, 2018

Sew Chaotically! - Cute polka dotted M7093 top for Roo along with CAPOX GBD's!!!!

It's a little late in the season for this top, but with a sweater or jacket I think Roo can start to get a bit of wear out of it.  I've sewn up this pattern several times.  You can check out posts here and here.  It tolerates almost any material, can be made with slits (as it is here) or pockets, long or short sleeves, and goes together easy peasy!!!  Isn't she the cutest????

And now.....THE GBD's!!!  (The Good, the Bad, and the Deets - re me and CAPOX!)

  • Ready for the shocker - CAPOX sucks!!!  
  • Effects are cumulative...no surprise there.  Data on these drugs and common sense (when you review the pharmacokinetics) show that drug levels rise as you go along and side effects can get progressively worse.  I am here to tell you that that is correct!
  • I've had a difficult time with abdominal pain and cramping with diarrhea since the 3rd week of the last cycle.  So much so that we had to call and adjust the capecitibine from 3 tabs twice daily that I took for the first two weeks, to 2 tabs in the am and 3 in the evening last week.
  • Despite adding levsin to my control meds of immodium, marinol, and pepcid - pain and excessive stools continued. When we went in for labs yesterday, we were told to decrease the drug further to 1 tab twice a day.  We will see how that goes.
  • NOW.  If you are taking poison to kill cancer, what happens if you take less poison than is recommended?  Will you still kill your cancer?  Well, my Medical Meerkat is on it, finding this:  Oncologic outcome after cessation or dose reduction of capecitabine in patients with colon cancer.  Yun, Kim, Son, et al.  J Korean Soc Coloprotocol.  March 2010.  This article, dealing with colon cancer...NOT my diagnosis exactly...reports the following:
173 folks with Stage II or III surgically resected colon cancer, were given capecitibine (ALONE) as an adjuvant treatment at a dosage of 1,250 mg/m squared twice a day for 14 days, off for 7, and repeat for 8 cycles.  (For reference I was taking 1,000 mg/m squared when I was taking 3 tabs twice a day.  Though as I've mentioned before, calculating mg/m squared is difficult when you are thin or heavy.  Additionally, I am also taking oxaliplatin, don't have colon cancer per se, and am not Korean, but what 'cha gonna do???!!!)  Of the 173 peeps, 129 had side effects.  Hand/foot syndrome was most common with about 66% experiencing it.  46 patients had to stop or decrease the med.  The 42 of the 46 broke down like this:  39 had hand/foot syndrome, 12 had nausea, 8 had diarrhea, 7 had abnormal blood test results...all to the extent that a dose adjustment was required.  

Patients who had a dosage reduction (n = 35) vs those who did not (n = 138) showed no significant difference in relapse rates. The 3 year disease free survival rate was 90.5% for those with no reduction and 82.4% for those who required one, with authors noting that "this difference was not statistically significant".  When you contrast this with folks who had to stop the med completely - 155 peeps completed all 8 cycles of the med, but 18 had to stop - relapse between the two groups were 10.3% and 27.8% respectively.  The 3 year disease free survival rates of the two groups were 90.7% and 70.9% respectively.  Both of these data points WERE statistically significant.

In the end, those who took all the med did best, those who had to decrease the quantity of the med did less well in hard numbers though they did not compute into a statistical difference, and those who had to stop the medication did less well in both recurrence and disease free survival.

What does all that mean for me?  No real idea.  I do not have the disease these peeps had.  I am taking capecitibine for half the rounds they were prescribed.  I am taking capecitibine WITH oxaliplatin - which may (actually probably) compounds my abdominal problems but may improve my response rate.  And, incidentally, colon cancer (not that I can apply this data to me either!!!) appears at different rates when you look across the globe with decided differences when examined by race and geography.  You can't find this data on folks like me!!!  Other than in this space.  Rattie de pie solo aqui!!
  • Looking back to last round, I was able to start exercising (no marathons here....just 10-15 minutes on the elliptical with a little core work) on the Friday after my Monday infusion.  I had to stop doing anything around Wed of my week off and haven't been able to do anything since!!!!
  • My nausea and cramping have been worse with movement.  I think I may be feeling a bit better today.  Yesterday was my first day of 1 tab twice daily...so maybe this regimen will be more tolerable.
  • I have been super tired.  That's probably more due to the oxaliplatin.  My body aches.  My knees hurt.  I feel slightly better today.  
  • My hemoglobin and white counts are hanging steady per lab work.
  • I now weigh 126 pounds...down from 128 which was down from my usual 135-137.
  • I am developing brown rough patches on my skin...so that is fab!
  • My paresthesias have been much worse this time in my hands and feet, tongue occasionally, in old IV sites on my arms.  Lips still weird.  Hiccoughs gone.  
  • My feet burn a fair amount of the time these days.
  • I had a good visit with Rose and Jamie.
  • I finished my throw!!  Take that jingy jangy fingers.  Pics to come.
  • Finished Roo's floral dress.  It is so pretty on her!  Will post soon!
  • I am still enjoying watching my blue birds eat B's meal worms.  Today a wood thrush briefly joined them!!!  Such excitement!
  • I think I've read every sewing blog on the planet.  You think I'm kidding.  No.  Google translate has been in full swing!  And when I say read...I mean - Every.  Flippin.  Post.  I've learned some nifty things and made this observation:  Sewists are an amazing group, with real heart, personal integrity and support for diversity, fairness, artisans, thoughtful consumerism, human rights, peace, kindness, our environment, and each other.
  • In sad contrast to another group of which I am a part ~ this morning it struck me and B (as we were observing the changing lesions on my hands and arms) that NONE of my caretakers -  nurses, NP's or docs - have done a complete physical on me since this adventure began in August.  Not my surgeon (unless it was done while I was under), not any of my oncology peeps.  A couple have listened to my lungs, heart or abdomen...but THAT IS IT!!!  Not one has looked over my skin.  Melanoma patient here, Y'all!!!  Meds you are giving me can cause a rash, so you ought to know what rashes I had at the start and then watch for any rashes I may develop!!  Not one has looked in my mouth other than anesthesia (they needed to intubate, so at least they took a peep) and that is significant.  My onc is fully aware of the terrible oral lesions I developed while on Nivo as well as a more recent lesion that she actually sent me to ENT for, then determined to be a scar.  AND...the meds I am currently being given can cause oral lesions as well.  Not one has tested my reflexes.  Now, I don't do that on every visit for my patients either.  HOWEVER, if I am taking care of someone with possible nerve issues of any sort (neuropathies definitely qualify!!!!) I absolutely check them!  They are clearly part of follow-up per standard of care protocols when you place a person on this regimen.  Oh, well.  Another reason it is a good thing that I have a Medical Meerkat.
Just keep'n it a hundred!!  Much love, les


  1. Keep hanging in there Les and giving the real scoop. And then there are the few like me who have to be taken off everything (though I still take Keppra generic twice a day to keep seizures away and oxy 2-3 times a day...all with Dukes approval...my local GP keeps up with me) and was supposed to die over two years ago...BUT AM STILL HERE and now am doing better than anyone, including me, ever imagined possible. And I know I say that a lot, but in my case, and possibly others, taking me off everything turned out to be the best thing for me. I know it doesn't turn out that way for many...my point is we're all different and none of us know what will happen...despite what drs believe will happen...until we get to a particular point. We all have to take it moment by moment and deal with what's going on at any given time. And reading this I'm thinking I'm not having a good brain day and may not be getting across what I want to get across. We never know what's really going to happen. I stand in amazement at all you're accomplishing in spite of all you're dealing with. You may think of yourself as a rattie and I get that, but Dear, you're a DO-ER and BOSS. You model how to do this. Strut your bad self down that runway of life. You take the pieces, sew them together, make something beautiful, and show off the reality of life. All those paid glamorous models can't hold a candle to you! Blessings Les!

    1. I like that sentiment...sewing together pieces of life!!! You are the best cheerleader ever!

  2. I'm glad there is no statistical difference in benefits associated with taking less of the med. I sure hope the side effects will taper significantly!

  3. Yes, even though that study is not about folks like me exactly....I did take heart in it. I think things are getting better as far as side effects now. Fingers crossed that they stay that way!!!