Sutent

Richard, welcome to this website and to the journey. I use the word "journey" often to describe RCC. It's a long trip with ups and downs along the way. There are many great folks on this website to help with the downs and to celebrate the ups. Don't hesitate to use their experiences and knowledge. For me, I was first diagnosed with RCC in 12/04; went through two surgeries and had fantastic results with Sutent. You mentioned that your father has started Sutent treatments which is good news. You did not mention what other treatments were planned such as surgery. Most often I read that RCC patients had their kidney removed (myself included). My wife and I have learned many things about RCC and Sutent over the past two years and I would like to share some early advice. First, find a oncologist who specializes in RCC. You may have already done this---great. We found out that not all cancers are the same and not all doctors are well informed about RCC. It is fairly rare in the world of cancers. A RCC specialist is critical to your father's proper treatment and care. Second, the patient needs to take charge of their own medical decisions. By that I do not mean self doctor. What I mean is to ask a lot of questions and "make" your doctor work for you and your father. A RCC specialist has a wealth of knowledge but your father is still the "consumer". Third, we found the use of humor to be very helpful with the journey---especially on the down days. Please don't hestitate to contact us for help with questions.

Don, I'm so glad that you reponded. My wife and I have thought of you and Debbie often. It's encouraging that her new treatments are going smoothly and we wish you both the best for her upcoming CT scan. You have been and will continue to be in our prayers. Please send us an update next month.

My mother 57 was diagnosed with RCC in 9/04. She had a radical nephrectomy for her right kidney. Then in 01/05 she had two VATS (video assisted thoracic surgery) for both left and right lungs due to the discovery of nodules which were also RCC. Next this passed summer 6/06 she went through 10 sessions of radiation on her 3rd and 4th spinal cord due to the spread of the tumor and was experiencing great pain from nerve impinchments. The radiation was a failure and the Docs decided to operate on her from the neurology department to insert 4 screws and two rods to stabilize her neck (surgery was not preformed to remove any tumor due to the fact that it was located around a dense area of nerves). From then till now her condition has stabilized and her oncologist DR. Peter Wiernik from Our Lady of Mercy Hospital in NYC had decided to try out Sutent. Her first cycle started on 9/06 and now she is on her 2nd cycle ending by 12/6/06. So most likely she will receive a ct scan and her results before Christmas. I am praying for good results and also for all of you out there who are taking this drug. May God bless and we ask all this in the name of his son Jesus Christ amen. Cathy

I also have RCC and had my left kidney removed in may 2002. Then it moved to my lungs. I went into the hospital in 2004 for interleukin treatments. I had 24 treatments over a three month period.While it didn't cure the cancer it did slow it down.Good friday of 2005 they found a brain tumor also caused by the RCC. They removed it and in two days I was just my old self out having fun. May of this year my lung tumors showed sigh of regrowth. This is when I started taking 50mg. of sutent once a day for 28 days with a 2 week break in between.After the second month my lungs showed an 80% improvement.But I was having strong side effects.I can tell you more about those if you like in another email.To help with those effects we cut my daily dosage down to 37.5 mgs.This seems to have really helped.I live in Edgewood,Maryland.I am about an hour and a half from Hershey. I just go to my Oncologist now but I started my treatments at Franklin Square Hospital located in Rosedale,Maryland.My Oncologist's name is Dr.William Waterfield in Belair,Maryland.You can reach his office at 410-515-6400.They are the most loving,caring group of people you will ever meet.My sutent treatment is in oral tablets. I don't know of there is any other way to take it.Please if I can be of any help in any way,email me.If you just want to chat I will be here for you both.My email address is --- Message edited by CancerCompass staff: for personal protection, email address removed. Please review CancerCompass Member Guidelines at http://www.cancercompass.com/common/guidelines.html ---- I am 54 years old.May GOD Bless you both.

Hey Praz and also those you who take Sutent what were some of your side effects? On my mother's first cycle her face was swollen, slight skin discoloration, minor rashes, and minimal sores in mouth, taste distortion, lowered white blood counts to like 1100 and fatigue. On her second cycle her white blood count was fine 4000 count, her hair began to turn a bit white, taste distortion, swollen face, but also pain on her upper shoulders and neck. She has a follow-up appointment today 12/1/06. Keep us in prayers (the Lord's mercy of healing is all to it) and I will also pray for all you fighters of RCC out there. Hope that we can all have a Merry Christmas.

Hey Bunker and all who is reading this....I hope everyone is doing good and getting ready for a great time throught the holiday's. I wish everyone a Happy, Safe and Great news for the New Year. Mine is starting out great. Went to the Doctors for CAT Scan and Blood work. Things are looking good. The tumors in my lungs are shrinking and the one that was in my liver isn't detectable. I did have a few more small spots in my lungs, but the Doctor don't seemed to concerned about these. More focused on the bigger ones that are shrinking. I'm still on 50 mg of Sutent and since I don't have that bad of side effects I asked if I could be on Sutent for 5 weeks and off 1 week. He said we could give it a try so we'll see how this works. I don't have to go back for 3 months and then I will have another CAT Scan and of course blood work. Hopefully they will shrink more being off for only 1 week and not giving the tumors to much time to grow during my week off. I hope to keep getting good news and hope that everyone else gets great news also.  I want to wish eveyone a "VERY MERRY CHRISTMAS AND A GREAT HAPPY NEW YEAR"  Good luck with everyones treatments and I'll keep praying for each and everyone of you having to deal with this dreaded disease. Take care all and like I said before "MERRY CHRISTMAS AND HAPPY NEW YEAR"  Lisa

 

On 11/27/2006 Bunker wrote:

Don, I'm so glad that you reponded. My wife and I have thought of you and Debbie often. It's encouraging that her new treatments are going smoothly and we wish you both the best for her upcoming CT scan. You have been and will continue to be in our prayers. Please send us an update next month.

 

Bunker,

Sorry I didn't get to you sooner but Debbie had her CT scan Dec 12th and while she still has 11 liver lesions, all have shrunk at least 50% or more, the bone masses are still shrinking and there is no sign of the cancer returning to the lungs so we did get some good from the Sutent and the Doxil appears to be working at least for the time being, next scans in Feb.  Please keep us in your thought and prayers.  Don 

 

Dear Bunker,

I first wanted to let you know Bunker, what a true friend you have been to my sister Lisa (tiffany64).  I thank you from the bottom of my heart for all the inspiration you gave to her over the past few months.  I also want to inform you that she lost her fight with RCC on January 19th.  She was doing pretty well up until Christmas.  We had a great day together and she ate a wonderful meal, probably more in that day than in several weeks combined.  But unfortunately, she developed a bladder infection the first week of January and we took her to ER and got antibiotics for that.  She was very weak and not eating.  She was very dehydrated and they gave her fluids and she felt somewhat better when she left ER but not well by any means.  The antibiotics didn't really help much and by the 13th had become very lethargic and unresponsive.  She was very stubborn and didn't want to go to the hospital.  Silly girl!  Anyway when her husband called Becky, our other sister who lives in the same town to come and try to get her up, she knew something was terribly wrong.  She called me and we arranged an ambulance to take her to the hospital she had been doctoring with.  They found she had pneumonia and that the first 24-48 hours were critical.  She fought very hard and actually lived for 6 more days.  We have lost a very special part of us and will never be the same.  I hope that you continue your fight and have a much better outcome than she did.  The only relief we have in any of this is that we don't believe she ever knew she didn't beat it.. She was unresponsive for most of those days in the hopital and hospice center.  Again, thank you for all your support with her as she wasn't one to reach out and ask for much.  She was the one to help everyone else.  I don't know if  this is how the end comes for others or not.  I believe the pneumonia is what ended her life so soon after the diagnosis, not the cancer.  The cancer was at a bad stage but the Sutent did seem to be making a difference.  Well, I will quit rambling for now.  Take care all of you who read this and God Bless You!!

Kris

Where can you find this medication?  Sutent.

Where can I get this medication called Sutent?