Hi Mary thanks for the words of encouragement. I hope your husband's tests come back supportive of him re-starting Sutent. The Sutent has kept the cancer from forming new measurable tumors and reduced the tumors in my husband’s lungs and hip. During his fifth round he almost stopped taking it because the side effects were so debilitating making him question life itself. His family doctor has been a big help working with his oncologists and oral surgeon providing medicines to help combat the panic attacks, depression, mouth soreness, and flu like symptoms. The oral surgeon recently put him on a prescription mouthwash that kills off bacteria and lessens the mouth soreness. Rounds six and seven of Sutent have been manageable except for the problems with weight gain. He’s also had a couple instances of his blood sugar dropping dramatically. One of his oncologists has told us that one of their patients who has been on Sutent for three years (apparently he was part of the original trials) had to drop from the 50mg dose to 37 ½ mg dose because of side effects and that one side effect they have seen is low blood sugar, a real problem for diabetics which my husband became after the cancer began.
For us the past four years have been a blur of emergencies, surgeries, hospitals, treatments, therapy, retests, specialists, and a never-ending barrage of new complications on top of existing complications to the Kidney Cancer. We've had diabetic episodes, cardiac episodes, necrotic bone problems, hypercalcemia, and nearly a year of physical therapy that had to be stopped when the cancer reappeared in the hip/buttock tissue. Not a week has gone by in the past four years my poor husband hasn’t been at a hospital, a doctor’s office, a lab, a wound clinic or a physical therapist or that they didn’t come to us. We have counted our blessings because the cancer centralized in the bone initially giving us more options and better “Quality of Life”. My husband says when this escalated in 2002 he use to just say those words, but now they really mean something.
Chronic hypercalcemia crisis is my husband’s most difficult complication currently. The Sutent appears according to recent x-rays, CAT scan, and bone scan to be doing its job of preventing new tumors and reducing existing ones. A recent echocardiogram shows minor cardiac issues on right side but no left ventricle problems that appear to be a major side effect of Sutent.
I know what you mean Mary about the day-by-day and week-by-week. I drive my husband to a local hospital's wound clinic twice weekly and then he has blood drawn twice weekly at the other hospital to monitor his magnesium, phosphorous, calcium, creatinine, bun, RBC, WBC, etc. We request a copy of the previous results each time we go in for the next blood draw.
Unfortunately, I have become a pro when advocating for my husband’s health issues. We arrive at each doctor visit with a spreadsheet of all his blood tests, a history sheet showing each of his doctors’ visits with dates, diagnosis, next visit, doctors’ addresses, phone numbers, fax numbers, etc.; and a spreadsheet of his medications, dosage amounts and times. I have found these to be immensely handy when we have arrived at emergency rooms or when going to new and old doctors alike. They never do give you enough room to list all the current medications or surgeries – Ha! Ha!
Take care of yourself too, Mary! Barb