1. If you are being put on to Sandostatin LAR make sure the doctor follows the proper protocol by having you use the daily shot first and continue it for 2 weeks after your first LAR injection. The reason for this is two-fold: The LAR shot lasts 28 days, the daily shot last 8 hours. If you were one of those rare people who are allergic to Sandostatin, wouldn’t you much rather have the 8-hour dose for your body to deal with than the 28 days worth? Also, the LAR takes 14 days to reach peak levels in your system. During that time, without the daily shot, you probably are not getting medication enough to do any good.
2. For more information on Sandostatin, check out Novartis’ web site at www.sandostatin.com
3. The LAR is a 28-day cycle, not one month (yes, there is a difference)
4. Have your doctor get and give you a copy of the Novartis Publication “Step by Step, A Guide to Self-Injection” (#SDS-8073 (01))
5. Both daily & LAR should remain refrigerated but will tolerate some “off ice” time.
6. For the daily shot, check the vial (or pre-filled syringe) to make sure the fluid is clear. Cloudy fluid can be a sign of contamination.
7. If using the LAR, always be sure to have a supply of the daily shot (& syringes, they are a separate prescription) on hand for any break through symptoms.
8. People who are on LAR for a long period (time length varies) may find the effect diminishing. They may need to take a “holiday” from the LAR, using the daily shot during that time, as it seems that the tumor receptors become desensitized to the LAR formula and the break resensitizes them.
9. Tips for keeping Sandostatin cold
10. For vials, use a wide mouth thermos type (soup) container, take off the lid, and fill partway with water and freeze it overnight. Take if from the freezer and place the vial inside (a little more crushed ice can help fill the space) and replace the lid to take away.
11. We have turned more than one hotel ice bucket into our portable ice chest for vials.
12. If you draw up syringes for the day (going to be out all day or just for one shot) we would get them ready to go, and put a couple folded alcohol wipes into a travel toothbrush holder, with the pre-filled syringe to follow.
13. Alcohol wipes are cheap, always take two, and yes, they do dry out over time in the box.
14. If you want to keep your pre-filled syringes cold, use a reusable ice pack and a small folding cooler (totes® makes a nice one) leave the cooler folded up and place the ice pack & syringe(s) into the cooler and just close the flap.
15. Don’t draw up too many syringes from vials at a time. Once transferred from the vial, the medication is subject to the contaminants of outside air and may be more susceptible to bacteria.
16. If you get your LAR from a pharmacy, use the same folding cooler & ice pack routine to keep it cool until you get to the doctor’s office (let it warm at room temp. for 30 minutes before sticking it in you). On the ride home, use the ice pack on the injection site. Some people find that heat works, and some cold, for reducing injection site pain.
17. If your doctor’s office is charging you a fortune for LAR injections, try getting them from your pharmacy (if you have a prescription plan) and just bringing it to the doctor. Sue got each of her LAR shots for $5.00 prescription co-pay plus the $40.00 office visit to administer. Also, if an office visit, some health plans have a “lifetime benefit cap” (ours was $1million). The prescription plan may not be included as part of that cap. Do the math, and plan to live a long time, you will see that one LAR shot per month can eat up a lot of money.
When you get really crazy, yes, you can get/give a daily shot while waiting at a red light. (Don’t ask how I know this)