2016/06/17 – Weight Wars

I have not updated this blog in a while, because the new chemo is kicking my butt.
Cetuximab is the most powerful thing available to Kaiser for my particular type of cancer  The other two, which I have had twice now as well, are pretty nasty too.  In addition to causing gridlock in my digestion (followed by a roadrace) and a lot of nausea, they give me such fatigue that sometimes it is hard to move across the apartment .  The Cetuximab also causes a rash, because it attacks epithelial cells which are actively growing, like my cancer — but also my skin.  The rash is a lot like acne, but moves around.  It causes skin sloughing, pain, and sometimes bleeding. Started on my forehead, spread to my cheeks, then jaw, and now my chest.  The only thing I was allowed to use on it was an antibiotic called Clindamycin, which is 50% Isopropyl alcohol.  Stings like blazes, but does eventually relieve some of the scaling and breakouts.  Then a few days ago, the Infusion Pharmacist told me I could add Hydrocortisone, which really helps.
Eating and drinking have become more and more painful, tiring, and slow.  I will get afeeding tube on Tuesday, 6/21. I resisted it from September until now, but I see that it is necessary.  The tube will be installed under a general anesthetic, and I will be taught how to use it… Soon, I hope.  

I have found that even pure, RO filtered water stings my mouth, especially my tongue.  Ice cold things are easier to drink, as are thinner mixtures, and dissolving a little bit of just about anything in the water makes it easier to drink, stinging less.  I am learning anew the value of a cold compress on the forehead, or wherever the rash is bad.

Weight6mos20160617
The last 6 months of my battle with cachexia

I have been researching foods to use in the PEG tube, and I see some products online which look promising.  I am also hoping  that I’ll be able to make fresh juices and smoothies and such to put down the tube. My diet has gotten narrower and narrower, and I know I will benefit from fresh, organic produce, if I can get it down the tube.  I guess I am becoming numb to these incessant changes, because I am not at all concerned about the procedure tomorrow, though I know it will be unpleasant for at least a week.
At least I can see that July 11th will be my last Cetuximab infusion, unless Dr. B thinks more will help.  That will surely be a relief.  Now for some Ensure on Ice, La Boisson du Jour.

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