Neupogen. You love it, you hate it. Their white count soars when you give it to them, but you have to stab them with a needle to do it. They can battle off infection and stay healthy, but you or your insurance company have to shell out the $1600 for a box which contains a total of 2 teaspoons (10cc) of the stuff. Who knew E-Coli would make such a difference in the life of your child? (Yes, that's really where it comes from--read the packaging material and the Physician's Desk Reference!)
A few kids we've heard of are able to get it through their central lines. Most kids--and grownups--who need GCSF are not so lucky. It takes several days in a row of shots (usually to the upper thigh or arm) to get those counts zipping upwards. Now I'm not a doctor, nor have I ever played one on TV, but these are some of the great tips we collected from adult cancer patients we met on the internet who were giving themselves the shots and had found ways to make them less painful. By all means, check any and all of these out with your doctor or clinic nurse before you try them. And while you're at it, encourage them to distribute this list to any parent who has to give GCSF shots to a screaming, squirming child.
**Try using EMLA cream to numb the injection site. EMLA is a prescription product that comes in a tube, and is generally prescribed with clear bandaging patches called Tegaderm to go over it. A nickel sized dollop of EMLA, covered with a square of Tegaderm, will numb the spot within an hour and a half or so. Joseph has very sensitive skin and gets itchy and red from the adhesive in Tegaderm, so we stuck Saran Wrap over the EMLA while it worked its magic. EMLA is as sticky as Elmer's Glue, so the plastic wrap never went anywhere, even when he rolled around in bed.
**Warm the Neupogen in the syringe to room temperature before giving it--it stings MUCH less that way. (At any other time, Neupogen MUST be kept refrigerated!) We just set the syringe out of the fridge at the same time we put the EMLA on, so they're both ready at the same time. If you forget, just warm it between your hands. Also, DON'T shake it--it makes bubbles that sting, too.
**Make sure and put a new needle on the syringe after drawing up the Neupogen. The needle is dulled going through the rubber stopper at the top of the bottle, and a fresh, sharp needle will go through the skin much more easily and less painfully. Every nurse in the world knows this, but no one bothered to tell us! Using a fresh needle made a BIG difference!
**Pinch up a good sized area of flesh on the thigh to put in the shot. Insert the needle, inject a tiny amount of the GCSF into the area and then pull the needle back slightly and inject the rest. You've created a little space in there with the initial poke, and when you pull back, the medicine fills the empty space. Doing this decreased Joseph's discomfort noticably.
**If the medicine still seems to sting, try injecting it v-e-r-y s-l-o-w-l-y. We heard from lots of adults that this really helped, and Joseph agreed. A few kids we know of only liked having it done fast, but I don't know if that was to alleviate the stinging, or just to get the whole thing over with more quickly. Experiment to see what works best. Also, having a chance to make a decision about these details makes your child feel more in control of the situation.
**A money saving tip--if your kid is small like ours and can get more than one dose out of a bottle, draw all your doses out at once and store the syringes in a sterile container in the fridge. The vials are single use, so you can't cap them and redraw from them tomorrow, but you don't have to throw away $120 worth of medicine from the bottle because you only needed $60 worth today. (Maybe your clinic has told you this, but we had to figure it out with the help of the pharmacist!)
It's shocking to hear that you'll have to give your kid painful shots, but GCSF helped keep Joseph from getting even 1 infection he might otherwise have had from prolonged low counts. And of course it helped to get his counts up enough to go ahead with the next round of chemo. We were so fearful of doing shots at home, we collected the tips above out of sheer desperation. They certainly worked well for us, and here's the proof. Joseph slept through his shots a couple of times when he was feeling really crummy (he conked out before the EMLA was ready). He was so tickled to find out the next morning that he had slept through the hated shots that he began to ask that we give him his shot after he was asleep EVERY time. So from then on we put on EMLA at bedtime, and then slipped into his room and did the shot a couple of hours later when he was sound asleep. He'd barely wiggle! I know it sounds weird, but he was able to figure out a way to avoid one less trauma, and we were thrilled!!OncoLink's Neupogen Infusion Tips
This page is dedicated to the adult cancer patients, several of whom are now angels, who helped us in those early frightening days after Joseph's diagnosis. They were able to express in words what our 4 year old could not, and they helped us understand what he was going through. We will be grateful forever.