Sutent

My husband is 72 yrs old. In 1991 he was Diagnosed with RCC and had a total left nephrectomy.

March of this 2005 he had left sided pain and had a CT Scan of abd and Pelvis and showed a 8cm tumor on his right kidney. The doctor removed 1/4 of this kidney and at the 4 month check he had a Ct scan and showed that it spread to his lungs. The tumors were less than 0.7cm and are multiple lesions. He tried I-L2. he had 2 hospital stays and then a follow-up CT Scan which showed little change but the doctor encouraged him to continue. After 2 add'l hospital stays he had a repeat CT Scan and it showed that the RCC now spread to his sternum and Thoracic vertabre. Treatment was stopped.

We live 5 miles from the Milton S Hershey Medical Center they are also a research and teaching hospital. The are approved for Sutents Expanded Access Program. However, it will not be finalized until the middle of January 2006. It doesn't seem like a very long time to wait, but this seems like a very aggresive Cancer. We would like to start Sutent sooner. Within the next week. But I am having a difficult time locating a facility closer than Cleveland Ohio. Does anyone out there know any place closer to Hershey Pennsylvania that has the Expanded Access Program?

Any help would be greatly appreciated.

The wife

Join the KIDNEY-ONC email list (see http://cancerguide.org/kofaq/ ) and ask your question. One of the listowners has a list of centers where Sutent is available.

I'm not sure about the Expanded Access Program but I am currently participating in a sutent clinical trial study at the Masonic Cancer Center at the University of Minnesota in Minneapolis.

I have gone through 3 treatment cycles (28 days on and 14 days off) and have seen amazing results. After the first treatment my tumopr reduced 34%. After the second treatment the tumor showed no metabolic activity (it was "dead"). After my third treatment their were no signs of the tumor in my body. The doctor termed this a complete response.

Good luck.

PS. If you are not able to access sutent there is another drug that was just approved this month by the FDA and it has recieved similar results. The drug is marketed under the name Nexavar.

Can you please give me more specifics on your cancer, if you don't mind. My sister recently underwent 3 surgeries for RCC and just began Sutent. Please give me any info you think may be helpful, I would greatly appreciate it! Sutent seems to be our miracle drug (it has only been two weeks and they think there is shrinkage).

Thanks
Allison

My brief history: I was diagnosed with kidney cancer and had my left kidney removed. They thought they got it all but it reappeared on my liver 5 months later. More surgery to remove part of my liver. Two months later it had returned to the same spot on my liver. That is when I went on the experimental drug Sutent. The first treatment cycle (which was 28 days) resulted in a 34% reduction in tumor size. Then two weeks off drug. The second treatment cycle resulted in additional shrinkage but more importantly the metabolic activity had ceased (the tumor was "dead"). Both of these treatments were at the full dosage (50mg/day) and there were some side effects--mostly fatigue, flu like symptoms, and my hair turned white. After two weeks off I started my third treatment again at the full dosage. This resulted in all signs of the tumor being gone. My doctor then switched me to a lower doasage (37.5 mg/day) and three weeks off in between treatments. I completed treatments #4-6 with this approach partially waiting for the drug to gain FDA approval so that I could stop the drug but still have access if I left the trial. Last Thursday I completed my 6th treatment and met with my doctor. He declared my response a "complete response" to the drug and stopped the drug. I'm now going to be monitored at 6 weeks and then at 3 month intervals. The results sure made the unpleasant side effects worthwhile. Hopefully my respone to your question wasn't too long. If you have additional questions please let me know.

Thanks you Greg for the reply, you have been very helpful. I will try to let you know the progress. Congrats on your complete response!! Must be exciting.

Did the Sutent every cause any problems with internal bleeding, fluid or low platelets? My sister was currently admitted to the hospital for internal bleeding, she was undergoing radiation and Sutent, they think the bleed was cause from the lining in her stomach bleeding from the radiation. Now that problem is solved, she has fluid surrounding her lungs and her biggest problem is her body is not producing platelets. I was just wondering if you experienced any of these problems.

Thanks
Allison

Yes, please keep us posted on your sister's progress. We have learned many important things during my journey---take control over your treatment including learning an much about the disease as possible; value family; and keep a sense of humor. For me, I used a series of T-shirts that we had made special. I made it a point to wear them to my appointments to share with the lab folks and my doctor. My last one stated "Have no fear, Wunderdrug is here!! with a picture of underdog holding a bottle of my pills. I stay focused but find humor to carry me through as a balance. It really helped with the mind. If I can be of help please don't hestitate to contact me.

In particular, did you have a drop in platelets after taking the Sutent? This seems to be her major problem. Also, did you have a problem with fluid??

Thanks for your response.

Since I originally entered the Sutent treatment program via a drug trial, my bloodwork was monitored very closely. In all, I had about 20 different tests done each cycle. I don't remember a platelet test specifically but my bloodwork looked very good throughout my treatment. One other area that they monitored closely was my heart through a MUGA scan which measures the efficiency of the heart. For most patients in the trial on Sutent their heart function got less efficient but mine improved. I did gather from my doctor that not all of his patients handled the treatment quite as well. No problem with fluid either if you are referring to fluid retention. I did have flu like symptoms every cycle. One thing my doctor was real good about through the multiple treatments was that we would discuss the side effects and if I could tolerate them. He would prescribe the appropriate medicine to reduce those side effects---nausea for example. I also had alot of acid in my system which made restroom activities pretty painful. Hope this helps.