Not Sure What 2 do Next?????

Blab away that is what this board is for. My heart goes out to you. We live in Canada and our system is different. Our insurance did cover the cost of sutent and we are very lucky. Our CT's and other scans are covered by our Medicare system. I would be in as much panic as you if I couldn't get the test my husband needs. Always remember the squeeky wheel gets the grease so plug ahead and stop at no one. Think of you Mazzy

Good morning Lou. You are on the right course and keep up the pressure on your insurance company. Polite but persistant is my motto. It sounds like you are really close to achieving the Sutent treatments. I hope this continues to go well. Once your husband starts treatments please let me know what questions I can answer. Our experience was that while there were side effects most if not all were treatable with some other medication or "trick". Good luck on your journey and let me know how I can help.

Good Evening Greg, Well As I Said The Ins. Co. Didn't Approve The Pet Test Only Because I Guess They Thought He Was On A Clinical Trial How They Came To That Don't Know. The Dr.Was In Contact With The Ins.Co. He Wrote And Sent An Appeal Paper To The Company. Well Instead Of A Pet Today The Dr. Ordered A Bone Scan. Won't Find Out The Results Till Mon. Or Tues.On Your Reply You Said Something About Side Affects From The Sutent If You Don't Mind Me Asking What Were They???How Did You Handle It??What Med's Did You Take To Help With The Side Affects??Were You Still Able To Work??If So How Long Did It Take You To Get Back To Work After You Started Taking Sutent??Later Lou

hey mary thanks for your reply,i'm tring my best to think positive but its getting harder and harder every day. just when we thought we were ahead of this disease it seems like its always a step ahead of us,its almost getting to a point to where were not getting anywhere. i asked the dr. when he was going to start my husband on sutent he said: after he has had brain surgery. i just don't understand whats the differenceif he starts now or after the surgery?????????thanks lou

Yes I agree with you Lou one step forward and two steps back. However you have to keep going forward and with the back steps when they come. I share you feeling as I want things to happen NOW and when they don't I become anxious and nervous. It is so hard to sit and watch this happen and know you are at the hands of others but I trust our doctors and I feel they are doing the best they can but it doesn't take away the frustration. Do they know when your husbands surgery will be yet? There are days when you just can't be positive and that is okay. They are usually my crying days and I try hard not to let my husband see it. The shower is a good place to cry. Then I try to get myself back together and start all over again. It is the roller coaster of their lives and if I am this nervouse I fathem how nervous our husbands must be. Remember "If God brings you to it - He will bring you through it" Hang in girl. You are your hubby are in our prayers. Keep me posted Mazzy

mary still not sure when the dr. wants to do the surgery,he wanted to do it betweem nov. 6-10,but we're still waiting to see if the ins. co. is going to okay the pet.we went in friday for a bone scan waiting on results.q...the other dr. wants to start him on sutent after he has surgery, why after surgery and not right now????????lou

Nice to hear from you so soon. It sounds like your persistence with the insurance company is starting to pay off. Stay the course. On your questions---the side effects are described as mostly "flu like". Nausea; stomach irritation; diarrea; mouth sores; change of taste and fatigue. I felt that all were tolerable and there are medications that can help with most. Not all patients have all of the side effects but fatigue seems to be one of the more common ones. I had it for all six treatments and learned some "tricks" that allowed me to handle it pretty well. I did work thoughout all of my treatments but I did set aside some "quiet" time each day to help with the fatigue. For example, when warm enough I would sit in my car over lunch and just rest my mind---this seemed to really help. I also have a saint for a wife and it sounds like you are very supportive as well. When I felt like resting, my wife understood. Not long naps but just relatively short rest periods. I'm probably forgetting some of the side effects and have not shared the details of some of the "tricks" we learned along the way. When your husband gets on Sutent and has some side effects we can talk more about specifics. Good luck with the bone scan results and please stay in touch.

Hi Lou haven't heard from you in a while. How are things going. Any news from the Insurance. My hubby is now on day 19 and all in all it has not been bad. He is on the highest dose 50mg and has tolerated it very well. A little blood pressure problem treated by medication and some stomach upset but that is easily handled. Everyone is different and meds effect everyone differently. One more week to do. Finished 1st cycle Nov 15th. So all in all can't say at this point it is bad at all. He has been on worse meds. Willard is doing good on his second cycle. So keep us posted and let us know what is happening with you and how things are going.

hi greg,how are you doing today? fine i hope. well heres whats going on now, the dr. called this afternoon and said he wanted to talk to us about the bone scan results and go over the cd wiyh us.q....i'm a little scared of what he might tell us. is it possable that this rcc has already got into his bones??? if so will this drug sutent still work for him or not.q...will the dr. still do surgery on the tumors on his brain??? its alright just give it to me straight up if you can, okay
talk to you later, lou

hi mary how are you doing today, fine i hope.to your question, no,still haven't heard back from the ins. co. but the dr. called today and wants to talk with us about the bone scan ron took on friday. not to sure what his going to tell us, i don't think i'll be able to sleep tonite. you talked about "cycles" whats that all about, nobody has said anything about any cycles to us, can you please explain this, thanks lou