Sutent Failure

Hello all.  I began on Sutent in Sept 06 but did not tolerate 50 mg/day for 28 days, off 14 days.  After one month I was switched to 50 mg every other day  and could not tolerate that either.  I was changed to 25 mg/day, on 28 days, off 14.  Still had high blood pressure, extreme fatigue, mouth sores, nausea, peeling skin on hands, mouth sores, extreme constipation, couldn't taste food from Sept. then in Feb 07 I began vomiting blood and was hospitalized and received 2 units of blood.  I have been off Sutent since then, not completing the 6 rounds.  I receive a CT scan every 3 months to see if anything new develops.  I'm not on any cancer meds at this time.  I'm still not totally back to what I was before the Sutent.  So I'm just sitting tight and waiting to see what's next.  By the way, I had my kidney removed, and the cancer metasticized to my hip bone.  This is my story.

Hi barbnurse, has your oncologist suggested any other treatment in the meantime?  How do you feel now, do you feel a little better since coming off sutent?

My oncologist has not suggested anything other than the CT scans every 3 months.  He is not optimistic about my future - feels that since it metastisized to my bones I have about 18 months  .I'm feeling pretty good right now.  I can finally taste food again and my bowel habits are finally beginning to return to their normal state with any help from lasatives!  For that I am grateful!  Continue to hold me in your prayers.  Thank you.

Barb

I had been on Sutent from April 07 to Sept 07...about 4 cycles....I had terrible side effects, fatigue , loss of taste and foot sores so that I could not walk ...hardly what I would call "enhancing myquality of life"...My latest CT scan showed some tumors in the lungs smaller and some larger and a new lesion on my liver...I feel all that suffering was to not much avail...I am beginning to read stories about the drug doing more damage to the body than good and I have a sinking feeling that this will increasse with time.  The drug company pushed this through for " quick approval"...as usual putting profits above the welfare of the patient...I am now off Sutent and beginning to enjoy life again...

My doctor wants to put me on a new drug Torisol (just approved last month) which is basically a copy cat drug working in about the same way as  the others, only with some different side effects, the main problem being elevated blood sugar and the usual drop in red and white cells.

 at this point, I don't believe I will do any chemotherapy at all,...just to be kept alive with no hope of a real cure...only false hope, which is what I got from Sutent...if you do your research you will see that the new drugs are not all they're cracked up to be...but a great money maker for the medical profession.

I would appreciate knowing if anybody else out there has or has considered abandonning chemo and living out their life more comfortably

To All,

Just wondering if any of you have gone to see a GU oncologist, who is better educated on RCC and it's treatments, who also know about more options to help with your "quality of life" 

Wishing you Well,

Cindy

Hi barb nurse - I also have RCC which met'd to my lungs. I was put on sutent (3 cycles) with the usual side effects - sore mouth, sore hands, fatigue, bowel problems, no taste, etc. subsequent cat scan revealed increase in size of mets. My oncologist put me on Nexavar and the next scan revealed a reduction in the size of mets. The last scan revealed no change. Nexavar seems to be working. Side effects are tolerable and include slightly sore mouth, sore hands (where the fingers contact my golf clubs), tendancy toward diarrea (use of Imodium AD helps), and some loss of appetite.

I recommend you ask your Doc about Nexavar.

Good luck, Al

 

On 9/18/2007 barb nurse wrote:

My oncologist has not suggested anything other than the CT scans every 3 months.  He is not optimistic about my future - feels that since it metastisized to my bones I have about 18 months  .I'm feeling pretty good right now.  I can finally taste food again and my bowel habits are finally beginning to return to their normal state with any help from lasatives!  For that I am grateful!  Continue to hold me in your prayers.  Thank you.

Barb

Barb,

Ironic that my name is Barbara and I'm also a nurse. Surgery. Did your oncologist ever recommend Nexavar? That may be the one that would help you. That's what I'm taking now and have had no advancement of left kidney tumor or left lung tumors. The metastasis to my brain shows either an advancement of cancer cells or an inflammation process. Was put on steroids for three weeks and will return in 3 weeks for another MRI of brain. If it's smaller, then it's inflammation....this is certainly what I'm hoping to see. If not, they will plan either another radiation treatment or surgery.

Also, as my oncologist told me," the name of the game is to keep you living as long as possible and have a good quality life." He has definately set no time limits. As we know, they are coming out with new drugs to fight cancer daily and who knows what may come out that can help us.They have not done a nephrectomy on me and plan to give me the Nexavar for at least a year or more before doing surgery. I was diagnosed July 2nd of this year. I am going to a Center of Excellence in Cancer Treatment, M.D. Anderson in Houston, Tex. They are the experts and I am trusting them to do everything possible to give me a longer life. I am 64 and was ready to retire in Sept. when this happened.

My patient advocate told me that her father was diagnosed with rcc with metastasis to the bone when he was 65. She said he died at the age of 86, but not from cancer!! This should be some encouragement for you. I have heard many more inspirational stories since I have been going to Houston for treatment & it definately gives me hope.

Hopefully this will lift your spirits to know that others have been diagnosed as you have been and have lived many years. My heart goes out to you.

Sincerely, Barbara in Texas