Although most said they'd let their physician know if asked, survey finds
by cecilkidder on Fri Apr 23, 2010 07:22 PM
Hi, Re: Sutent, stick with it. The side effects are worth it. Compared to Nexavar it does a better job. We chose Nexavar after Sutent was so miserably handicapping. But the progression was speeded up. With Nexavar you have to watch when you eat (your stomach has to be empty for the full effect). You might feel better but it doesn't seem to work as well. We have exceeded the statistics on survival rates and are very pleased to be seeing another spring and summer. Just remember, it is not a cure, it only delays the growth of the RCC by cutting off the ability to reproduce at a rapid rate, and starving the tumors with less blood supply. We were able to travel a couple of years ago and take care of the grandchildren. 04-22-10. A kidney was removed in 2002, adrenal metastasis in 2007- 2008-2010 on oral medication with metastasis in liver, lungs, and bone. So far the only limits are tiredness no pain yet, but getting there with bone pain (aches). So you have to decide yourself, a more active life or a longer life???
by damir on Tue May 11, 2010 03:55 PM
Hi Peper !
They removed my right kidney in 2005,but it returned and I
started with Sutent therapy on 10. march 10 last year.
Results are very good and tumors are shinking.
I have some sideffects but very optimistic based on last CT scans.
by RugbyRob on Fri May 21, 2010 04:42 PM
I re-read your post, and it depends on how you define sucess rate. I wont go into my story, it's on my profile. I believe the data shows that roughly 75% have a response to Sutent. +- 50% achieve Stable Disease (no growth, no tumor development) +-25% have tumor reduction.
Mean Time for Progression free Survival on Sutent is 11.2 months. Sutent at this point is the only therapy proven to increase OS (overall survival)
There are many, many studies ongoing to see what combinations work best, novel antibody adjuvents. Interestingly enough, I believe that maintaining fitness and cardio activity increases the efficasy of all chemo and radiation...yet just this morning I read a newly released study showing patients with obesity have a better response rate for Sutent...Perhaps I need to get off my bike and start eating Twinkies???
by Lynn226 on Mon May 31, 2010 02:25 AM
My husband was diagnosed with stage four RCC in May 2007. It had metatisized to his spine (over 80% of one vertebrae gone and spinal cord hours from bending), there were many 3 - 4 mm spots in lungs and a 10 mm growth on his pulminary artery - oh, yea and an 8 inch tumor on left kidney. He had radiation treatment within 20 hours of diagnosis to try and maintain the use of his legs, He then had fourteen treatments of IMRT radiation, and then had the tumor on the kidney removed, as well as the kidney. Once the large tumor was removed, all other remnants disappeared - for about a year and a half (he was on no treatment at all during this time). Then a scan showed growth in the same areas as before. He took Nexavar for a year and a half and after that time, the scans once again showed growth in the same areas as well as new areas in pelvic bone. He is now on Sutent and has had less side effects with it than with the Nexavar. His appetite has come back and he has gained back 14 of the 70 pounds he lost (he has been on Sutent for 3 months). He will be having a scan soon to see if the Sutent has had any affect. He is also on a bone building IV treatments of Zometa for the spot on his pelvic bone. We have been so blessed as he has continued with his life as normal as he can. He works 60 - 80 hours a week, is in two bands (jazz and rock and roll), and attended an adult continuing education class last semester. He is presently 54 years old. I will let you know how his scan comes out.
by cecilkidder on Mon May 31, 2010 03:58 AM
posted: April 10, 2010 Reply: Then we are really beating the statistics!!!! All of my husbands tumors are shrinking. He Just could NOT stand the Sutent. We chose Nexavar after a nine month trial of Sutent. His RCC was diagnosed formally in 2002, before these medications were available. He had a radical nephrectomy and a partial adrenalectomy and had latent metastatic ca to liver and lungs in 2007, with a total adrenalectomy. prior to spread. Unfortunately, even his local doctors did not know about these new medications, I found out about them, for him, on the internet by e-mailing a major medical center. He recently had severe back pain radiating down the back of his legs, first to the hip, then to the knee and then to both legs and to his ankles. It wasn't the cancer, as we supposed, it was arthritis, (spondylosis).
Just remember, not everything is cancer related.
by ana53 on Sun Aug 15, 2010 04:21 PM
My husband was always exercising, so he feels a little stiffled....but he does want to meet his grandchildren (my daughter is trying now). He is 61 neer smoked, not a drinker....ironically but basically in good health. He's lost a lot of weight bcause hes been on steroids to deal with his head edema....he was never heavy but at 6'1"....150 lbs is very mortifying. I feed him all sorts of nutritious foods, lots of protein, no sugar, no enriched flour. He has great color but no weight gain. Did you loose the weight? and if so, did you gain it back?
He was placed on 25mg, to be brought to 37.5 on second round to build up to 50mg.
Thank you for answering so promptly : )
by ana53 on Sun Aug 15, 2010 04:26 PM
Please let me know how he is doing...I find comforting that the weight is coming back, as my husband has lost most of his muscle due to the steroids he takes for the brain swelling, due to the stereotactic radiosurgery for the tumor in the brain (1 centimeter)
I hope hope hope your husbands responds well !
by Paaris1 on Thu Aug 19, 2010 04:44 AM
On Feb 25, 2010 11:41 PM pieper wrote: My husband has stage 4 kidney cancer and had his kidney removed last wk. Doing good but has several spots on lungs. Going on Sutent starting today. Cost is unreal even with my insurance,trying to get help through the company. Can anyone tell me how they are doing on Sutent today? Thanks!
On Feb 25, 2010 11:41 PM pieper wrote:
My husband has stage 4 kidney cancer and had his kidney removed last wk. Doing good but has several spots on lungs. Going on Sutent starting today. Cost is unreal even with my insurance,trying to get help through the company. Can anyone tell me how they are doing on Sutent today? Thanks!
Hi , there is another study starting up. You have to qualify. 1923 people. Deadline 9/1/10. I am in the midwest.
by dsgardella on Wed Sep 01, 2010 03:00 AM
Check out my profile and yes I've been on Sutent for a year and the tumors are shrinking. I'm trying to limit my CTs to one every 6 months so I won't know how I'm doing for another couple of months. I heard of a fellow gringo who has kidney cancer metastisized to his lungs and all the tumors are gone after about 2 years on Sutent. He stopped taking it according to my oncologist. Saludos, David
by upbeatlady on Thu Oct 14, 2010 02:55 AM
Hello to you, your Father & family.
I have been on Sutent for seven months after having a wedge of my left lung removed because of Stage IV met. kidney nodules. I had the same type of surgery on my rt. lung, three years ago. I had Avastin chemo for six months after that occurrence. Currently there is no evidence of any malignancy on my lungs or elsewhere. This is the good news! HOWEVER, I personally have had a serious increase in back pain and an increase in the pain of perepheral neuropathy. My doc thinks it is probably from the Sutent. As there is no alternative at this time, and the medication seems to be doing what it is supposed to do, I will not stop now. I have been in and out of remission for the past 13 years when my rt kidney & adrenal gland were removed. Although this wears on me, I figure I have been given 13 years of life experience with my family that I would not have had, if not for all the good drugs that have kept me going. I am not sickly, I have plently of pains, and I am in and out of doc offices frequently. So think positively for your dad and enjoy every day possible. I don't mean to sound like Pollyanna, but I believe you have to be your own (and your Dad's) advocate, think of what your Dad can do, and as Nike says: "Just Do It". I pray every day for better health for myself and all others experiencing illness. Take care.
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