CancerCompass message board discussion started by Rccrebel on 11/25/2006 http://www.cancercompass.com/message-board/message/all,7985,0.htm Tue, 02 Dec 2008 00:00:00 GMT Tue, 02 Dec 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ My husband started his battle with RCC in 1999 losing his left kidney. Mets to bone caused hypercalcemia. Zometa 15 min infusions Jan 2003 to Sep 2004. Left hip, femur, knee and half of shin bone replaced with metal in Oct 2004. Hypercalcemia returned Aug 2005 New tumors in soft tissue of left hip/buttock removed Nov 2005. Hypercalcemia returned Dec 2005. Started Sutent 3/1/2006. First three rounds calcium dropped to normal range. July 2006 Hypercalcemia climbed. Sept 2006 gone from high panic to critical of 15, hospitalized given hydration, Lasix, calcitonin, steriods dropped for about month then back to hospital for repeat first Nov. Treatment less effective. Headed back to hospital this week as calcium again over 12 and Nephrologists can only say "difficult case". Anyone know of any other treatment for hypercalcemia? RCCRebel Rccrebel Sat, 25 Nov 2006 00:00:00 GMT Hi Barb welcome aboard. My husband had his kidney removed in 99 as well and was fine till 2002 when it came back in the lung and duodeum. He did intron A, 10 million units - 3 times a week for 3 1/2 years then went off because of side effects. He started Nexavar in Sept but didn't last past 2 weeks on that due to major side effects which hospitalized him. He started sutent Oct but made it 3 weeks on cycle 1 and had to come off it because of creatine levels rising. During nexavar and sutent he has had elevated calcium levels but they go down and things return to normal. So we take it day by day and week by week. He has bloods on Monday so they will check them to see if he can try sutent again. What a roller coaster eh? We have also heard the phrase of "complicated case" and then they start over again. Hang in Barb and let me know how you make out. Mary Marymaz Sun, 26 Nov 2006 00:00:00 GMT 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 Rccrebel Sun, 26 Nov 2006 00:00:00 GMT Hi Barb Wow you have been through a lot and you are one strong woman. Isn't it amazing how much you learn by being a caregiver. We walk the walk and talk the talk. I like you attend all doc appointments and carry a burage of information with me. I know how you feel if we don't know at times they don't know. When my husband first tried nexavar and we showed up at the Emerg dept the doctor basically said "I will be back" and took my information and read it before he could figure out what to do. You husband sounds like a real trooper. Wow I wasn't sure how long someone could be on sutent and that is exciting news especially for patients newly diagnosed. I find this board a wealth of information and I have learned so much from everyone. As well I have built a friendship with one of the other wives via email and we get to share caregiving frustrations. We too are fighting the battle of cancer. My email address is mmazerolle@gmail.com and if it goes through feel free to email me. Sometimes the board blocks the email addresses. All we can do is be the best advocate for our husbands we can be and be a knowledgeable as we can be so that we can give them the best care and like you said "Quality of Life". You are an amazing woman and you are doing an amazing job. It gives a whole new meaning to the word "Love" when our spouses have cancer doesn't it? Please stay in touch and talk to you soon. Mary. Marymaz Sun, 26 Nov 2006 00:00:00 GMT