Side Effects Of Sutent -Beware!!!

My mom was diagonised with kidney cancer on her left kidney 10x12cm that had metasised to her lungs in April 2007. She was then put on Sutent (50 mg). However on the 3rd week of the first cycle , she had edema on her limbs, high BP and breathing problem.She was in hospital for a week.Sutent was stopped then (19 days). However, even though the edema lessened , however, when she went back home , the edema returned and she was again hospitalised. After a week she became okay. Her second cycle started next month. This time however, the doctor gave her a diuretic, heart medicenes and a mouth sore to control the side effects. However after the second week,she again had severe weakness , fatigue, severe edema that started from the stomach spread to thighs, hand,lungs and chest. She started having hallucinations and was again hospitalised. The Doctors stopped Sutent and started her on diuretics to control the edema. However suddenly , her condition became worse. She had breathing problem and was put on oxygen.Next day she went to coma and was put on ventilator. her heart beats became irregular and slowly she kept sinking. Finally she passed away without ever getting out of the coma. I don't know whether its the incapability of her doctor who couldnot control the side effects efficiently , but whatever was the cause of her death, the fact is it all started with her taking the drug SUTENT.She never her edema before in her life and never had breathing problems or high/low blood pressure before that. I just want everyone to know her case so that they can be cautious when taking this drug. Even we had heard, it was a wonderful drug and pushed our mom to have it.Maybe if she never had taken it she might have stayed longer here. In her second cycle that was for 22 days, the CT scan done showed that the tumors in her lungs had increased three times to the original size.The primary tumor and tumors on her lymph nodes were however stable. Lesson learned here is that get yourself a good oncologist who actually knows Sutent and its side effects and knows how to control it.If you notice any side effects report and see your doctor immediately and if possible stop the drug immediately. BEWARE..

Sorry to hear about your mother.  Please accept my deepest condolence.  I'm a caretaker for my wife who have RCC and is currently on Sutent (just completed 5th cycle).  Prior to the fifth cycle, she had experienced several on-off edema as well.  It started from low level of edema on her face and her left leg in the first 2 cycle and then got more intense in the 3rd to 4th cycle.  Along with this edema,  high BP was monitored from the 1st cycle so medication was given to low her BP.  However, my wife didn't have any problem with her breathing so I'm curious whether that is the key issue.  Her left kidney (the one with RCC) was removed earlier in Jan'07 and was put on Sutent in Feb'07 (50 MG). From many comments in this message board, Sutent seems to sometimes create intense side effect on the heart.  The CT scan discovered that she had an endometriosis (chocolate cyste) in her ovaries and her pelvis areas which could cause or worsen the edema so she took a break from Sutent (after cycle #4) and went into another surgery to remove her ovary along with those cystes.   After about a month away from Sutent, she went back on it again and just finished cycle#5.  Her side effect for this round was very minimal with no appearance of major edema so we pray that we've fixed the edema problem...

Have your mom's doctor ever clearly explained the cause of her death?  I'm apologized for asking such a question but this would be very helpful info for all of us.     Regards, Petch

I am so sorry to hear about your Mom my prayers go out to you and you family. I am going through the same thing with my Mom. She was on Nexavar in April 2006 but it has stopped working and I just got a call that the next step is Sutent. I will do anything to keep my Mom with us as long as we could but I do not want to see her in any pain  or suffer in any way. Reading what happened to your Mom makes me think twice about the treatment but I don't know what else is out there for treatment.  

Sorry to hear about your Mom. May she recover fast from this dreadful disease. Keep up your hopes. Sutent is the most prefered treatment for RCC right now. Many people don't have such drastic side effects as my Mom had. Since, not everybody is the same, we never know how the drug will work on a particular person. You should really try this too. Maybe this drug will work quite well on your mom and may make her soon cancer free.Who knows! There is a chance , try this out.BUT do proceed with caution.Try her on a lower dosage and see how she reacts to the drug.IF everything is going smooth, then on the next cycle you can go for an increased dosage. IF she has major side effects, then you can think over what to do next.Right now there is a treatment option open for you to fight against this cancer and you should grab it. God be with your family.

Hope your wife becomes cancer free soon.This must be really hard on you and your family. May you all have the strength to continue fighting against this disease. Well, no at first, my mom did not have any breathing problems as such.She had high BP(after taking sutent) and she also took medications to control it. Only when her condition detoriated and she was in ICU , that she had breathing problems. The Doctor says the cause of death is due to severe pulmonary edema (which was the side effect from Sutent). FYI..My Mom was in a clinical trial for Sutent outside united states. Well, Wish you and your wife lots of good luck and a speedy recovery.

I am sorry to hear about your mom. My husband has MRCC and it has spread to the spine and rib area. His kidney was removed. I am a nurse and have read extensively the sutent side effects etc.  It does sound like she had advanced disease when she started. Her lungs were not working well and the drugs can cause shortness of breath and affect the left heart function as well which will cause the fluid build up. I am so sorry.

Pinks,

Im sorry to hear about your mother but unfortunately your story sounds so similar to my families. My father was diagnosed with RCC stage 4 in April 2007. He began taking sutent shortly after that, at 50mg. The first week he felt fine on the drug but by the second week he started to feel so sick. He had shortness of breath, nauseau, chest pain, coudn't walk or talk. We took him to the emergency room and they told us that all he had  was pneumonia, his uncologist perscribed him with an antibiotic and sent him home. The next couple of days, my father got progressivly worse and worse, but my family just thought it was the "pneumonia" and would pass, while all this, he continued taking the sutent. 2 days later we took him back to the emergency room and this is where his life ended. After looking more closely, doc. realized this was all from sutent. They found that he had an internal bleed coming from the esophogus and bowel  and this had sent him into cardiac arrest. He never recovered and they believed it was all from taking 19 pills of sutent. 

My father had a history of cardiac problems in the past and maybe he was never a real good candidate for the drug, but we will never know what reallly happened. He took 19 pills on sutent and died, his uncologist never called us after seeing us in the emergency room, so on some level we feel that there was alot of neglect. Maybe 50 mg was to much for him, or maybe we should of never went with sutent, but now it is to late. It is certainly not a good drug for everyone and people should be made aware of the danger it can cause. I even callled pfeizer to tell them our story and they were incredulous.

If my father would of never taken the drug, he would still be hear today and it is very hard to live with that thought. My condolences to your family,  I know your pain. We live in St. Louis, Mo.