April 2012

Tips from the Raft: A GIST ‘vet’ passes on her secrets

Often, in the LRG email community, members have been known to offer suggestions on everything from what to bring with you to the hospital to managing side-effects. Louise Ladd is one of those people and as a 12-year GISTer has picked up many tricks along the way. We thought it might be helpful to repeat some of those tips here.

Louise Ladd I just picked up a new supply of Gleevec and it reminded me that I’ve been meaning to write in, especially for those who are fairly new to managing this cancer thing, with three little tricks I use that make life a bit easier. I think many of us old-timers probably use these ideas.

The first is simply a precaution. When I get a new supply of any meds I MUST take, such as Gleevec, I put two day’s worth in an empty pill bottle. If the doctor is late ordering a refill or it’s a holiday, or if my meds are held up for any reason, I have an extra 2 days before I need to panic. Makes life easier. A few years ago I entered a list of all the meds & vitamins I currently take into my computer, with the dosage and frequency, divided into prescription and over-the-counter, plus daily or “as needed.” I also list the antibiotics that don’t go well with Gleevec (citing the source), and a warning in boldface about the two drugs that give me bad reactions.

Last, I list my Primary Care physician, oncologist and pain specialist with their phone numbers. It all fits on one sheet of paper. I update the list every few months. When I see a new doctor, I check to be sure the list is current, then print it out and hand it to them instead of trying to fill in their questionnaire. This way I don’t have to keep it all in my head, which is already overworked, poor thing.

My third trick is another computer list, this one of my medical history, beginning with the rupture of my tumor in 1997. I very briefly state all the important events and update this list, also adding new events of significance, with the date, doctor’s name and the hospital involved, if there is one. I also edit it for extra words, trying to keep the facts as succinct as possible. It now has spilled over onto a fourth page, no matter how hard I try to state, “Just the facts, Ma’am.” I take this to every new doctor also, no matter what type of doctor he or she is.