Reflections on Infusion

[Tom Galli]

I've endured a total of 18 Taxol Carboplatin infusions in my treatment history.  I'm told that is unusual for a change in recipe is often called for when turmors reoccur or return.  The first 6 really don't count.  They were understrength adjunct treatments administered once-per-week while I had conventional radiation.  The last 12 were a nightmare.  A recent conversation with one about to undergo chemo for the first time primed a recollection.  His doctor asked him if he wanted a port.  Mine did also and I declined.  That was a mistake.  I got to thinking about other lessons learned that might be helpful.  Here they are in no particular order.

 

'Roid Rage - my infusion cycle started with steroids to block side effects during infusion.  A total of 6 steroid pills were required every 6 hours starting 12 hours before each infusion session.  Then the first bag of stuff infused was steroids.  Two side effects resulted:  enormous appetite and sleep deprivation.  Plan on staying awake the evening after infusion and eating everything in the house.

 

IV Attacks - if offered a port, take one.  For me, the absolute worst part of infusion day was finding a vein.  I used up nurses like interest accumulates on the national debt.  The clinic had a three-try-change-nurse policy.  Once, the CT scan technician had to be called upon because I used up every nurse in the place.

 

Charting Side Effects - It took me a while to realize that life goes on after infusion.  It would be nice to know when one might venture out to eat without experiencing violent nausea or lower GI distress, always embarrassing at fine eating establishments!  Use your smart phone calendar or paper "cancer calendar" to record the day and time of onset and wane of each side effect.  Mine were exactly on schedule.  Nausea symptoms started the day following infusion but lasted only 24 hours.  Joint pain started day 2 after infusion and lasted about a week but the first 3 days were almost unbearable.  If I took the anti-nausea medication an hour or so before onset, my symptoms were reduced.  The same applied to prescribed pain medication.  My doc told me to start taking it 3 hours before symptoms started and it made living with joint pain easier.

 

Managing Side Effects - besides knowing when the start and end time, here are techniques that worked for me.  My oncologist prescribed Lidocaine patches and my wife wrapped them around my most painful joints using ace bandages to gain relief to allow me to sleep.  Sometimes she's use flexible freeze packs and wrap them to the bottom of my feet to numb them against "taxol toes", again to facilitate sleep.  My last infusion cycle was combined with the oral chemotherapy drug Tarcevia.  It added diarrhea that laughed at Imodium.  A Tarcevia survivor told me to start each day with a bowl of plain steamed rice for breakfast.  It worked!  

 

Low Counts - Conventional chemo attacks fast growing cells and these include cancer cells but also red and white blood cells.  You'll likely receive a blood test 2 days after infusion and if counts are low, will receive injections to boost production of red and white cells.  These drugs were Procrit and Neulasta.  Unfortunately, both cause joint and bone pain.  As a lung cancer patient, you'll be susceptible to chest colds that can quickly become dangerous because of your low white count.  Try and stay home during the second week after infusion to limit your exposure and avoid school aged children.  My oncologist had me keep a supply of Levaquin on hand and I was to start the medication at the first sign of chest cold symptoms.

 

Infusion Day - my session averaged 6 hours.  I devoured the kitchen at breakfast because of hunger caused by my 12-hour 'roid rage but bring something to eat during your infusion.  You will also find yourself getting up frequently and dragging the infusion pump to the bathroom.  Dress warm, even in the summer.  My wife would stay with me during the IV insertion battle, then I'd read or play solitaire on my smartphone.  On the way home, we'd stop at Denny's and I'd eat several of their Grand Slam offerings.

[RandyW]

thanks for sharing this with us.....

[Gabriel Fernandez]

This is extremely helpful for someone like me who is just about to start chemo. Thanks for sharing this Tom!

[Judy M.]

You're so good about sharing. Have had my first rounds of chemo and moved on to an immunotherapy drug. But if I subsequently have to ( please God no) move on to other chemo cocktails I'll refer to this. 

Judy M