Hi, my husband, Norv, has been on sutent for about 3 months. His hair is thinning, and coming back in curly. He has no taste and not much of an appetite. He had his left kidney removed about 8 years ago and thought all was well. Had no chemo or radiation as they said they had got it all. It showed up again in a polyp in his nose that started bleeding over a year ago. .Had it taken out and after diagnosis said it was renal cell carcinoma. After ctscan, found it has mestasized into his lungs and lymph nodes. Also into right hip. He had radiation on hip and several places on face and back of head. All went away. Ge started out on Nexavar. Felt really bad on it. Nothing shows up on a regular xray just on ctscan. He had been feeling really bad with feet hurting, skin on bottom of feet falling off, etc.on the Nexavar. Now that he is on Sutent All of a sudden last Friday evening, he said "you know I feel better and ever since he is feeling better every day. Doesn't have much strength he says. His hands hurt some and he has been on prednisone so long, his arms are all torn up with skin breaking and bleeding. We are hoping it is in remission or gone away. Good luck to you. Carol

I wrote in my blog: "Sutent has handed me a tricky hand or two or four or ten." It certainly behaves in different ways in different people--and at different times in the treatment. From what I have read from readers, the number one key to success is good general health to begin with, followed by age.
I am now on my eighth full round of Sutent and have pretty well documented the whole often miserable trip in my weblog from 2005 (Sutent since September 06; Nexavar from April 06 to September). However, since November I have had no hurt feet, but it is still difficult to kick up a good appetite and plenty of energy. You might take a look at that as I understand it is a pretty close to teh average reaction. I have an internal search engine on teh site, so just search for sutent or nexavar.
The address is:

www.mpablog.typepad.com/david_foster.

Please leave comments for other readers if you feel your experience is unique or you have found some new way to deal with the side effects.

David Foster Wrote:
-------------------------------------------------------
> Man, what a drug. So far it has kept my body
> tumors at bay (it has no affect on my brain mets,
> so they zapped them with the gamma-knife. I feel
> sooo high tech). I have chronicled a two year
> experience with all the cancer drugs for ARCC
> (avastin, nexavar and Sutent) in my blog
>
> www.mpablog.typepad.com/david_foster
>
> and that includes all my wars with side effects
> and the never ending battle with the concerns we
> all have. You might take a look.
>
> David Foster

My Aunt has renal cell carcinoma in the lung. Her doctor has said that you have to be on Sutent for life. Has anyone heard of this? She has no side effects other than explosive diarreah...and not even prescription anti-diarreah medicine helps...but at 60 years old, her view is "living decently only two weeks out of every two months....is it worth it??? She can't go anywhere for 6 weeks because the diarreah hits with almost no warning and no time to get to a bathroom...so she is homebound all that time.

hi every one. im jane. i was told friday the 13th of july that i have kidney cancer. my dr. will take my left kidney in sept. he said that is all i need. can this be true? no kemo, no meds ,no radiation? he says ill be fine. i really dont know how to feel. will i have cancer again ? he cant even tell me what kind of cancer i have untill i have my tumer removed. 3"x3"good luck to all.

Hi Jane, You are probably still in shock from hearing the words "you have cancer". Just hang in there, take one day at a time. My husband Steve is starting his 9th year with kidney cancer. He was told from the start that the best cure for his type of cancer was to cut it out. But as I said that was 9 years ago, things have come a long way and there is hope with the new drugs.
Don't borrow trouble from worrying about the coming days. Just relay on your faith to get you thru today. I pray that everyone on the site will have a better day tomorrow. God bless you Jane

Wanda, thanks for writeing me back. i go in the hospital on the 4th of sept. im so scared. i also am diabetic
and am worried about that. i am 51. thanks for giving me some reassurance. ill keep you and your husband in my thoughts.
jane

Wanda McIntyre Wrote:
-------------------------------------------------------
> My husband is on his 3rd round of Sutent. He has
> tolerated the drug fairly well but does have side
> effects. His feet are very sore, fells like
> blisters under the skin. I put Aveeno cream on his
> hands and feet to ease the pain. He has lost his
> taste, his throat gets sore also. He usually does
> not experience these
> problems until about the third week of treatment.
> Overall he is just glad to still be around, he is
> into his 8th year of renal cell carsinoma. He had
> one kidney removed and did fine for 3/12 yrs., but
> now has mets in his only kidney along with lung
> and pancreas. He will be scaned in 6 wks to see if
> this has worked for him. We live one day a a time
> and give God the thanks to allow us to
> see it. We hope and pray for the best for each of
> you.

hi
I HOPE SOMEONE OUT THER WILL BEABLE TO HELP ME THROUGH MY HUSBANDS TREATMENT.

HE HAD HIS KIDNEY REMOVED IN 2000. THE CANCER THEN WENT TO THE LUNG IN 2006, HE HAD 2 LOTS OF SURGERY ON THE LUNG, BUT THE CANCER STILL CONTINUED TO GROW. WE HAVE HAD TO FIGHT FOR FUNDING FOR SUTENT BUT HAVE JUST RECEIVED THE GOOD NEWS THAT WE CAN START THE TREAMENT ON TUESDAY THE17 DEC.
COULD ANYONE LET US KNOW WHAT TO EXPECT IN THE WAY OF SIDE EFFECTS AND ANY USEFUL WAYS OF DEALING WITH THEM
BRIAN HAS BEEN ON INTERFERON AND IT DID NOT WORK IN FACT THE TUMOURS GREW FASTER
WE ARE LOOKING AT MONTHS AND THIS IS OUR LAST HOPE PLEASE ANYONE WHO CAN HELP US THROUGH THIS GET INTOUCH

LOVE TO ALL SUFFERS AND THEIR CARERS

GLYNIS

Hi Glynis,
So sorry to hear about your husband's health. My husband is also named Brian.
He had been on Sutent for the last 3 months and according to the Dr. it did not
work. There has been some growth of his tumors so the Dr. has just this week
started him on Interferon. The Dr. advised that it only works with about 10%
of the patients. I realize that it's not too promising.
We noticed with Brian that the sideeffects were lots more drowziness and some
tingling in his fingers. He could handle this okay. We just wanted the Sutent
to kick in. He also lost his appetite and said everything tasted like cardboard.
There's also another new drug that the Dr. will try after the Interferon.
Good Luck and hope many blessings head your way.
Sue

Hello All, I wish everyone the best who has kidney cancer, my late husband (48)unfortunetly lost his battle July 07, he was diagnose with it 4 months prior. His Kidney Cancer was a rare form which is called Collecting Duct. It's very aggresive and the sutent did not work for him at all. But the doctor who treated him said that its doing wonders for those who have Kidney Cancer - white cell , which is the most common Kidney Cancers that's out there. I hope this helps. Keep the faith, because everyone has their own journey, maybe if there is more research for Kidney Cancer, one day there will be cure. Keep your head up!!!! I PRAY FOR ALL AND your FAMILIES.

We just found out that my day has stage 4 and they are going to start him on this treatment. I would like to know if you think this will work for stage 4?

There are more options than ever. I've had kidney cancer for 16 years, stage 4 for 13 years. Had lots of surgeries. The most effective chemo has been Avastin. Have taken for 3 years with good results, mets throughout body including brain have either shrunk or remained stable. If you haven't talked to your Dr. about Avastin you certainly should. Side effects are minimal. Good luck and always keep a positive attitude.
Greg

My husband has had similar experiences to most of you. He was diagnosed with kidney cancer in 1998 and had a kidney removed, only to later have the cancer metastasized to his lungs. He has been through various radiation and interferon treatments for the past 10 years and has only recently been put on Sutent. It's been amazing that he has survived thus far without the cancer going into remission, but there it is.

He's had a huge problem with the lack of taste in food and eating in general. At times his mouth will hurt too much to eat. For those of you dealing with similar symptoms, carbonized water has helped him a lot.

Unfortunantly, my husband was diagnosed with kidney cancer (collecting duct) in July 07. It has spread to his bones, liver, spine and lymphs. He has had 2 back surgeries because the cancer caused a compression fracture to his spine. The doctor has tried traditional chemo but the cancer didn't respond it just got stronger. He has been on sutent for 28 days just stated the next cycle. The doctor wants to take him off because the side effects have been so bad for him. The doctor has given up on treating him she says there is nothing she can do. Does anyone out there know if sutent or any other drug that can help someone with non-clear cell kidney cancer. It's so hard to treat. Please help....any information would be greatly appreciated.

note: you might want to check Genentech announcements today concerning interactions with some of their products on this drug.

Hi everyone, I have been reading all of the post and I will be praying for you all. My father was diagnosed with Kidney cancer and it has spread to his lungs like many of your loved ones. He has been taking Sutent for three days now.. He is sluggish, his leg hurts and he is tired all of the time. He is 68 years old and not seeming to be very motivated to move.. Tonight my mother had a visit from the home nurse and they called 911 and to have him moved to the hospital. He was release from the hospital last week after finding out he had phenumonia (but some how they must of thought it was clearing up to release him) Im uncertain as to why they released him only for him to be re-admitted. My parents live in Md and I live in Washington DC. Does anyone have any suggestions? We are praying and believe that his body will be restored. He does not want to eat, he doesn't want to sit up and he is on oxygen level 2 but it was raised to level 4 by the medics. I was reading many post from Carol.. Carol are you still out there have you seen any results ? Thanks everyone for all of the information that I have been reading thus far..

Rose Hudson Wrote:
-------------------------------------------------------
> My husband had kidney cancer in March 2002, they
> removed a kidney, had 38 radiation treatments, and
> now they found it had metastized to his lungs on
> May 2005. Surgery was not an option because of the
> location of the tumors, so he has had a year of
> chemo, and interferon and interluekin shots, but
> more tumors have shown up,now he is taking 50
> milligram Sutent (the strongest dose), and he will
> start radiation next week. We don't know yet how
> many treatments he will have. We are like everyone
> else, we take one day at a time, I have finally
> realized, that, even the dr.'s do not know what or
> how this will all turn out. I do feel we have a
> great dr.,and he is doing all he can to save
> Jerry's life. He is just now starting to loose his
> taste for certain foods, which is a side effect. I
> would love to talk to anyone on the Sutent, or the
> cancer in itself.
>
> Love and prayers to all caregivers, and
> patients, Rose

Rose Hudson Wrote:
-------------------------------------------------------
> My husband had kidney cancer in March 2002, they
> removed a kidney, had 38 radiation treatments, and
> now they found it had metastized to his lungs on
> May 2005. Surgery was not an option because of the
> location of the tumors, so he has had a year of
> chemo, and interferon and interluekin shots, but
> more tumors have shown up,now he is taking 50
> milligram Sutent (the strongest dose), and he will
> start radiation next week. We don't know yet how
> many treatments he will have. We are like everyone
> else, we take one day at a time, I have finally
> realized, that, even the dr.'s do not know what or
> how this will all turn out. I do feel we have a
> great dr.,and he is doing all he can to save
> Jerry's life. He is just now starting to loose his
> taste for certain foods, which is a side effect. I
> would love to talk to anyone on the Sutent, or the
> cancer in itself.
>
> Love and prayers to all caregivers, and
> patients, Rose
ROSE: FIRST, WE PRAY YOU STILL HAVE YOUR JERRY!!
THIS IS NEW TO US. ON NOVEMBER 07, 2008 MY WIFE
FOUND OUT SHE HAD THIS STAGE 4 ADVANCED KIDNEY CANCER
THAT HAS metasized to her bone tissue. We are due to
start SUTENT following 10 radiation treatments that
will end this 12/24/2008. She is 69. Any information
from anyone will help!! Thank you....Phil

Rose Hudson Wrote:
-------------------------------------------------------
> My husband had kidney cancer in March 2002, they
> removed a kidney, had 38 radiation treatments, and
> now they found it had metastized to his lungs on
> May 2005. Surgery was not an option because of the
> location of the tumors, so he has had a year of
> chemo, and interferon and interluekin shots, but
> more tumors have shown up,now he is taking 50
> milligram Sutent (the strongest dose), and he will
> start radiation next week. We don't know yet how
> many treatments he will have. We are like everyone
> else, we take one day at a time, I have finally
> realized, that, even the dr.'s do not know what or
> how this will all turn out. I do feel we have a
> great dr.,and he is doing all he can to save
> Jerry's life. He is just now starting to loose his
> taste for certain foods, which is a side effect. I
> would love to talk to anyone on the Sutent, or the
> cancer in itself.
>
> Love and prayers to all caregivers, and
> patients, Rose
ROSE: FIRST, WE PRAY YOU STILL HAVE YOUR JERRY!!
THIS IS NEW TO US. ON NOVEMBER 07, 2008 MY WIFE
FOUND OUT SHE HAD THIS STAGE 4 ADVANCED KIDNEY CANCER
THAT HAS metasized to her bone tissue. We are due to
start SUTENT following 10 radiation treatments that
will end this 12/24/2008. She is 69. Any information
from anyone will help!! Thank you....Phil