Diagnosed Dec. 19, 2007. Radical nephrectomy and thrombectomy on Jan. 29, 2008. Scans on Feb. 29, 2008 showed pulmonary emboli, metastasis to a rib and remaining adrenal gland. Started Sutent last week.
I am interested in talking with anyone who has been on Sutent. I have been getting contradictory info about its effectiveness.
My mom was on sutent for a year. The side effects she had were all based on her skin. She had rashes so bad on the bottoms of her feet that she couldn't stand. On days she was given the medicine, her face would swell for a few days. The medicine never made her physically sick though. The doctors changed her chemo to a drug called Torisel. She has been much happier. She has been on this drug for almost a full year now. She gets it once a week versus every two weeks like sutent.
Good luck and let me know if you have any other questions.
I'm going for my 5th cycle (4 wks on, 2 wks off) of sutent in 4 days. I have been diagnosed with metastasized renal cancer, stage 4 and I think grade 2. That tumor on my left kidney was originally 17 cms x 8 cms. Surgery was initially thought of as the treatment, but further ct-scans of the chest, showed an extensive involvement in my chest and lymph nodes. I live in Chicago, and my oncologist at Northwestern Memorial Hosp. thought of giving me Sutent as the treatment medicine. The side effects I felt on the first two cycles were the tounge sores. I felt it very hard and painful to chew food and had that burning sensation to it also. However, my 3rd cycle showed a different side effect, hand and foot blisters. They show up tho towards the beginning of the 3rd week of the cycle. I just had to endure the pain of walking while I was working coz I thought it was better than to have those nausea and vomitting.
My main thoughts though was, when am I getting the surgery? I'd like to have it taken out, but some relatives of mine strongly opposed of it coz, I wouldn't know what the recovery period of it was gonna take, how long is it gonna be. After the surgery, I still have to continue taking the sutent to treat the spread to my lungs and lymph nodes. The sutent had worked well thank God after the results of the 3rd cycle re-evaluation of the ct-scans. My main tumor shrunk 3 cms and a lot of the cancer cells in my lungs and lymph nodes have greatly reduced in size too. No further spread to the other organs had shown also.
Taking that sutent is working well for me, I'm gonna move the surgery back and take the sutent indefinitely for now. I'm 53 y.o. now.
2003 I was diagnosed with renal cell cancer in my left kidney; it was removed; the doctors said since the cancer was contained, I did not have to have the chemo. Since then I have been on regular ct scans and blood work and lo and behold on my last year they found a cancer growth on my 8th rib; the rib was hurting because it was fractured.
This is my 4 cycle of Sutent and I'm ok. I think the only problem I have with Sutent is the ups and downs of what my body goes through. One cycle, I hurt liked hell; a different cycle I had no problems full of energy; this last cycle I am in depression and trying to stay positive. I try to work and my employer is very understanding. I don't have a support group and I need one so I'm researching for a cancer group. I haven't been told this but I think cancer is like getting a divorce. The first step is "Why?, How?", Second stage is "I can defeat this!" Third stage is "Depression", People look at you differently". I used to be the person who had lots of pep up and go, very posititve, lots of piss and vinegar; now I don't feel like doing anything.
I will say, I'm 56, woman with alburn hair; now my roots are turning white, even my black eyebrows have lots of white hairs. When I don't feel like eating, I grab fruit and some white cheese. Be sure to drink LOTS of water!
YES, my husband was also diagnosed with RCC (Stage 4) in 2003, had mets to both lungs and since it has spread to the brain..He has completed 2 rounds of IL-2, been on Sorafenib and Sutentinib and currently for over a year on IV temsirolimus. Has had whole brain radiation as well as steriotactic---and yes it has all taken its toll on him but he still has a good quality of life, so keep fighting and talk to your doctor about temsirolimus (torisel)...
Also he is 56 years old and his hair has totally gone white!!
Posted: 16 Jul 2008 11:46 AM Originally Posted: 16 Jul 2008 11:45 AM
I'm a 74 yr old male on my 2 cycle of Sutent. I have RCC right kidney and in my chest a mass 7" long & 3" diameter. So far I have little side effects , short on energy and nap alot.With Sutent I also have been going to a homeopathic doctor and taking natural stuff which has helped me have muct more energy and feel better. Jesus Christ helps me with the good and bad times and keeps my spirit up.
I am so happy to see someone else out there truely leaning on the Lord for subport. I do know about lack of energy but some days are better than others. But being able to have God in my life has given me so much more than I had ever thought of him before.