Hi there, my dad had Nephrectomy on Dec. 2007, and incision was never healed, now he diagnos with RCC since july 2008 it mets, now he is taking Sutent and getting alot of side effect especially hand foot syndrome, my dad is only 55 years i have a baby 11 years brother, it's very hard to see my dad with this life, i really really want to see him longer life atleast 10 years more, i just keep praying everyday.

Hi everyone,
My Husband also has renal clear cell and is taking sutent. He had a right nephrectomy in March, 2008, and his has mets to the bone in the right sacral and left chest wall. He had some spots on his lungs that they first thought were nothing but after being on the sutent they have shrunk so now they are thinking they were renal cell also. He had radiation to the right sacral area but got very little shrinkage from that but did get some pain relief. He has been taking sutent since March 2008 and had horrible side effects the first round nausea, vomiting, fatigue, etc. In October he started having some fainting spells and we found out his heart rate had dropped and he had to have a pacemaker. In October they started him on sutent for two weeks on and two weeks off. He still has the sore mouth and some fatigue but nothing like before. He is still working in the oilfield everyday even while on the chemo and has a great attitude. He turned 60 in December and we celebrated 40 years of marriage in February. January 2009 he had his scans repeated and no new tumors and shrinkage on the old ones. Has anyone been on sutent longer than this and is there a limit to the time you can take it. My husband's blood work has remained good and he has never had to miss a dose of sutent except with the heart episode. His palms are red and hands are stiff of a morning but nothing with the feet so far.

God Bless Everyone that is suffering with this dreaded disease.

Hi,
I've been taking Sutent since June 2008. Every month is different! I had renal cell 10 years ago and they removed my right kidney and deemed me cured. But it came back on my pancreas last year. Surgery did not help; it was painful and they couldn't do anything. So...what happens if I get the Swine Flu? I teach school so I'm around kids all day; plus I teach in a computer lab so always have my hands where their hands have been. I'm careful and have not been sick, other than with the side effects, all year. So...will the flu drugs interact with the Sutent?

I started sutent today, any recommendations? What was best for side effects!

Upon my research on Sorafanib or Sorafenib, I discovered all the above testimonials praising this chemotherapy compound for Kidney Cancer. Well, the story does not end there. This Drug is being investigated for off lable use, on Leukemia. Leukemia, a liquid cancer, is quite a devastating form of cancer. It's your own blood. You can't cut it out and it keeps reproducing. Therefore, medical intervention is quite limited. Bay 43-9006, Sorafanib, is being researched at M.D. Anderson Cancer Center in Houston Texas. My husband Robert Brown is in this phase one trial. He is doing great. At 73 years old, with two relapes behind him, he is responding to this drug. I thank you all who have come before him to test and use this compound for your mass cancers. Robert now goes forth, as you did, to add his faith, blood (literally), and hope of a life free of cancer and maybe help in the cure for cancer. Thank you for listening...F Judy Brown 8/22/09

Is this sutent also suitable for my brother, he has a urethral cyst along the kidney tube. The doctor doesn't want him to undergo surgical operation since according to him this can be cured through medicines. Please advise. Thank you.

Kind regards,
Shasha

hello can somone please contactme i am 41 and hav been dx with kidney ca that spread to bone i am so scared my daughter is 13 i go to cleveland on wed i need someone who is going through this to help me please i hve a lot of family and frieds but no one knows what i am going through please

by taking this kind of drug, does this have a side effect to the user?

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My Mum had a tumor on her kidney removed in Feb 09. They found it had spread a couple of months later and she started taking Sutent.
She has had lots of side effects, such as sickness, loss of taste, diarrhea, acid reflux, hair loss, weight loss to name a few.
However each cycle is different, she can have few side effects one cycle and then feel terrible on the next. The main side effect that she always suffers with is the loss of taste, which also accounts for the loss of weight.
She has has 2 scans and they show the tumors have not grown which is what we all hoped and prayed for.
It is hard to see her going through all the side effects and it does get her down but it is working and that's all we try and focus on.
:)

I have had my right kidney removed after finding a large tumuor, in March 2009. In June 2009 they found that the cancer had spread to my lungs, lymph nodes and left scapular. I started sutent then.

I am now in my 5th cycle of treatment. First cycle was 50mg and I got to 20 days before the side effects stopped me. I have since been on 37.5 mg for the last 4 cycles and the side effects have varied in intensity each time, mainly blisters and pain in the hands and feet and sensitivity in the tongue. For the last cycle I had tried icing my hands and feet regularly to try and limit the problems and I have not got as bad a result as the previous time but who knows if it was the ice or just what was happening in my body.

The good news is the drug seems to work - my last scans show my lungs clear, my lymph nodes normal and the tumuor in my shoulder has not grown. So I suppose tolerating the side effects is easier when you know it is doing its job. I find that with a positive attitude, a regular use of meditation and a strong belief in the power of your own mind and the work of the medical profession then things will be positive.

Good luck to everyone and my thoughts and prayers are always with you

"So I suppose tolerating the side effects is easier when you know it is doing its job."

I agree it's much better to tolerate the side effects of it if it's doing a good job and keeping you alive than to not take it.

Although the side effects of sutent can be pretty nasty which begs the question is it really worth it?

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hello everyone - is anyone out there using Sutent for transitional cell carcinoma?I was diagnosed with TCC after having my left kidney removed in 2008. I was told that there was no sign of met and all margins were clear. A year later a pet scan revealed that some lymph nodes had been affected and a biopsy showed that the tcc had spread to these lymph nodes. I had 4 cycles of gemsidibean/cisplatin chemo. My tumors shrank exceptionally well and I am now on 50 mg. of sutent. I just began 5 days ago and so far only the color of my pea and poop has changed. I'm wondering on the average when did you begin with the side effects and do you or anyone you've heard of with TCC has been on Sutent. My best wishes and prayers are with everyone.

I HAVE KIDNEY CANSER THAT HAS METASIZED TQ LUNGS.STAGE 4 I AM STARTING 3RD. ROUND SUTENT AFTER PET SCAN RESULTS I AM 73 YEARS OLD HOPE CANSER HAS NOT SPRED ANY INFORMATION FROM ANYONE WILL HELP THANK YOU RICHARD LATO

Hi Everyone. I to have kidney cancer. Had right kidney removed in 1997 and it returned in 2006. It came back in the site of the right kidney and also on my other kidney and on my pancreas. Have been on Sutent for 3 years and have very good luck with it. The tumors have shrunk and the one on my pancreas they can't find. The side effects have been bad but I'm now 37.5 mg and I tolerate it well. Had a ct scan and muga test, that's for my heart, and everything is doing great. I am 72 years old and other than the cancer, I'm in very good health. Keep the faith and turn it over to God and you will be fine. Prayers to everyone out there.