sutent

Hello I'm new to this I've been surfing the internet and came across this sight my 33 year old brother has renal cell carcinoma with residual pappillary this was his diagnossis 22 months ago when the cleveland clinic removed his kidney and 10 lymph nodes which 7 were bad 2 weeks ago we found out the cancer is back it has attached itself to the back of his heart and the arteries they have started him on sutent I'm just looking for the best treatment for him I'd really like to know more about this AHCC he is really starting to feel the side effects but he is a fighter he has a 3 year old son he want's to spend as much time as possible with him he is going to the University of Michigan for treatment and they told him there treating this like Diabetes just trying to control this but from all the info i've been looking at he doesn't have much time left so if anyone can shed a little light and truth on how long this sutent slow's the cancer or better alternitaves please let me know. Thank you so much Pam

Unfortunately, there are relatively few options for treatments of RCC and Sutent is one of the newest and most promising drugs, (RCC dose not respond to classical Chemo and Radiation treatments). The other new drug is Afinitor, which was just approved by the FDA, Sutent was approved about two years ago. Both drugs were “fast tracked for approval by the FDA because they have demonstrated significant results with all types of clear cell RCC of which   Papillary RCC is one subtype. I am presently on Sutent and have been since Oct of 08 after surgery to remove a 6 cm tumor from the lower lobe of my left lung (again) there were to other tumors that were deemed to be to difficult to remove and both were less than 2 cm. After recovering from the surgery, I started on Sutent the remaining tumors have now shrunk to less than 1cm each.

While the side effects of Sutent are difficult, they are manageable for the most part. Your brother may find it difficult to continue working. Generally, the ONC will start with a dosage of 50 mg, the cycle is 28 days on, and 14 days off, most patients cannot tolerate 50 mg for more than 2 cycles. I managed only one before the dosage was reduced to 37.5 which it what I am currently taking. I should have begun my next round on May 24th but I have had some side effects that have caused my ONC to give me another 14 day break. He also wants me to consider switching to Afinitor even though there are no indications that the Sutent is no longer effective, he is concerned that I am developing a toxic response to the Sutent that could cause Liver and Kidney damage with only one kidney that is not good. When I was first diagnosed my goal was to see my 2 sons graduate from High School!  I have been to 2 high school graduations 2 collage graduations and watch one son get his doctoral degree. I now intend to be around for a grand child or more hopefully not to soon!

It is important to maintain a positive attitude and to have a lot of support around as there some days when it is difficult to just get out of bed. Your brother will need a lot of help but please don‘t treat him like an invalid and DO NOT BELIEVE THE STATICTICS.

Anything is possible!

My biggest fans have been my wife, my sons and my “baby” Sister!!!

 

 

FYI I have had Radical Nerph, 2 lung resections of lower lobe of left lung, 1 resection of lower lobe of right lung and some lymph nodes removed have been on IL-2 (awful experience), Interferon A and Sutent.

 

These sites might provide some more information.

http://www.afinitor.com/index.jsp

http://www.sutent.com/

http://www.chemocare.com/bio/Sutent.asp

http://www.cancerguide.org/rcc_subtypes.html

 

There are two different message boards on this site the one you are on now.  http://www.cancercompass.com/message-board/cancers/renal-cel

and

http://www.cancercompass.com/message-board/cancers/kidney-ca

 

Hope this is helpful

 

Hang in there

Tom V

leesue -

 

my wife had a radical left nephrectomy in 01-05, followed by 3 years of no evidence of disease, then lesions on both lungs & liver, went on Sutent on Leap Year Day, 2008, there was some shrinkage after 2 cycles (28 "on"/14 "off"), dosage reduced to 37.5 mg/day due to SEs, 5 stable cycles, dosage reduced to 25 mg/day due to SEs, progression after 3 cycles.  Her most significant SEs were, initially, mucositis, especially of the nose & mouth, diarrhea, nausea, & fatigue, and most continued except to a lesser extent as dosage was reduced.  She is now considering a clinical trial of Pozopanib, or going on Afinitor (everolimus) and will probably do the former b/c she can do the latter if Pozopanib does not work but not vise-versa.  I assume you are seeing Drs. Redman & Bradley at UofM, where we have gone for a 2d opinion.  My prayers are w/ you & your husband. 

 

 

 

On 5/27/2009 leesue wrote:

Hello I'm new to this I've been surfing the internet and came across this sight my 33 year old brother has renal cell carcinoma with residual pappillary this was his diagnossis 22 months ago when the cleveland clinic removed his kidney and 10 lymph nodes which 7 were bad 2 weeks ago we found out the cancer is back it has attached itself to the back of his heart and the arteries they have started him on sutent I'm just looking for the best treatment for him I'd really like to know more about this AHCC he is really starting to feel the side effects but he is a fighter he has a 3 year old son he want's to spend as much time as possible with him he is going to the University of Michigan for treatment and they told him there treating this like Diabetes just trying to control this but from all the info i've been looking at he doesn't have much time left so if anyone can shed a little light and truth on how long this sutent slow's the cancer or better alternitaves please let me know. Thank you so much Pam

Hello:

First let me start off by wishing your brother all the best in this fight against this evil disease.

Second, to share some of my experences with you I need to know the pathology of your brother's cancer, which was unclear from your post. Is it papillary RCC or predominately clear cell with papillary features?

The pathology will determine the type of treatment most likely to show effect.

In clear cell, Sutent or the other targeted therapies are a good bet along with experimental chemo (Ixempra) if he meets certain criteria. Also, his age and health could determine if a candidate for high dose IL-2 (Which could produce a durable response even with low odds).

In papillary, less info on ways to treat, but to my knowledge, Torisel is a good bet. I don't think Sutent is as effective, new drugs that are c-Met inhibitors show promise. NIH (National Cancer Institute), which is on the web, is a great place to start for interesting trials. Ask your Oncologist.

Good Luck

Krys

I have been one of the lucky ones.  During Jan 06 at age 59, I was diagnosed with metastatic renal cell cancer when my left upper (humorous) arm bone broke due to a tumor.  A brief chronology; Jan 06 surgery on left arm to remove tumor and 2 inches of bone (replaced with steel rod and cement), Feb 06 surgery to remove right kidney and 12 cm tumor, March 06 radiation of left arm,  April 06 CT reveals tumors in both lungs and two in bones, April 06 begin Nexavar, On Nexavar for 12 months during which tumors initially shrunk and then grew to original size, April 07 a second arm surgery to remove a small tumor and another inch of bone, April 07 begin Sutent 50 mg, during my 19 completed cycles on Sutent all soft tissue tumors have shrunk to less than 5% of original volume and bone tumors show some signs of healing.  I am able to walk 5 miles a day and make my own firewood.  I can due everything today that I could 41 months ago just more slowly due to restrictions on my left arm.  I start 20th cycle tomorrow.  Side effects are all controlable with thyroid replacement meds, blood pressure meds, pain pills and hand cream for sore hands and feet,  pepcid and tums and diet changes for stomach acid, hand cream and hydrocortizone for skin rash.  Side effects vary during each cycle and from cycle to cycle.  There is hope.  Fight the good fight