About to start Sutent

I am a 69 year old woman, and was diagnosed in January '10 with clear cell renal cell carcinoma.  There was a large tumor on my right kidney which had never caused any symptoms.  I had surgery in February to have the kidney and tumor removed. Originally I was told that the tumor was encapsulated and no treatment was necessary.  I went for a 2nd opinion at Moffitt Cancer Center and was told that my cancer had mets in my liver, and that I was Stage 4.  I liked the first diagnosis better. 

I felt fine, but the docs said that I could shrink the 3 tumors in my liver  (and a possible 4th) with radioactive glass spheres delivered to the tumor sites in my liver through my  femoral artery.  I had two such treatments, two weeks apart.  The bad news is that the procedure tore up my stomach, causing inflammation and ulcers.  The first weeks were awful, couldn't keep food or water down.  Was put on Nexium am and pm, and over the next two months lost much weight, but now feeling better and able to eat more and varied foods.  Will have a CT scan in October, when the Dr. says he will put me on Sutent.  Am anxious about this as am afraid of side effects and being sick again. 

Would like to hear from others who are newly diagnosed with RCC and have begun taking Sutent.

This is my first post. It is a little long; my hope is that it will be an Inspiration to each of you. I have been a faithful reader of this Forum since I was diagnosed. My heart felt thanks to Bunker and the others that have posted through the years.

I was diagnosed with clear cell RCC in June, '07. Our 51st wedding anniversary. That day, I felt like I had been hit by a Big Mac Truck and then dumped on! Yes, I know you have most probably felt the same way. The Onc. told me the cancer in the left kidney was uncureable and unoperative; I also had mets to my lungs! I had some very bad days and then I finally told God I could not handle this alone, I needed His help desperately!

I was started on Nexavar (full strength) morning and night. I was so sick and about the 8th week I broke out in a rash from head to foot! The Onc took me off of the Nexavar immediately and put me on Sutent 50mg, 28 days on and 14 off.

I definitely believe in Sutent; but it has so many side effects. Food tasted too salty, nauseus all the time, diahreaa all the time, weak, tired, lost appetite, etc. In general, just felt crappy!

Finally, in July '09, I had to be hospitalized because of mental problems; they thought I had had a stroke. All kind of tests were run and they could not find anything to suggest a stroke. I was lucky enough to have a Dr. assigned to my case that would not give up. He found that I was desperately low on Thyroid and Vit. B 12. He said when Sutent first came out, right before I was put on it, that the doctors did not know it would deplete the system of thyroid and B-12.

My medical doctor raised my Thyroid doseage and put me on B 12 injections. He aslo told me to stop taking Imodium for the diarheaa and start on Benefiber. My husband fixed me some diluted juice and Benefiber twice a day. Wow, it really made a difference in the diarheea!

In Jan., '09, my Onc left and I got a new one. This doctor insisted that it was past time to have my kidney and tumor removed!!! He set me up with a Urologist who agreed it was time for surgery; but he did not want to do it. He then set me up with a surgeon at the UWMC in Seattle.

This surgeon took me off of Sutent a month before my surgery in March, '10. I went home 3 days after the removal of the left kidney and tumor! The incision was made high up on my abdomen, and I got along beautifully!

I now am seeing an Onc at the SCCA in Seattle. I went back for Blood Work, CT and MRI a month after the surgery, and have gone back twice at 3 month intervals for the same tests, plus a bone scan this last time. I will go back in 4 months this next time. The Onc explained that I will always be a Stage 4, (because the cancer had gotten out in my blood and made the mets in my lungs); if and when something shows up I will go back on Sutent.

In a very short time after surgery, I transformed back to the old me; I mentioned to my son one

day how surprised I was that I had gotten such a sun tan. He said, Mom, you have just got your color back! Prior to the surgery I was about as white as a sheet.

God truly blessed me; I feel so good since being off the Sutent; I feel like I have another chance at life; and I wish all of these things to each of you.

Trust in the Lord, and MAY HE BLESS YOU!

B

B,

Thanks for the great post!  I'll have to try that Benefiber stuff.

Jeff :)

On Aug 18, 2010 5:20 AM MamaB wrote:

This is my first post. It is a little long; my hope is that it will be an Inspiration to each of you. I have been a faithful reader of this Forum since I was diagnosed. My heart felt thanks to Bunker and the others that have posted through the years.

I was diagnosed with clear cell RCC in June, '07. Our 51st wedding anniversary. That day, I felt like I had been hit by a Big Mac Truck and then dumped on! Yes, I know you have most probably felt the same way. The Onc. told me the cancer in the left kidney was uncureable and unoperative; I also had mets to my lungs! I had some very bad days and then I finally told God I could not handle this alone, I needed His help desperately!

I was started on Nexavar (full strength) morning and night. I was so sick and about the 8th week I broke out in a rash from head to foot! The Onc took me off of the Nexavar immediately and put me on Sutent 50mg, 28 days on and 14 off.

I definitely believe in Sutent; but it has so many side effects. Food tasted too salty, nauseus all the time, diahreaa all the time, weak, tired, lost appetite, etc. In general, just felt crappy!

Finally, in July '09, I had to be hospitalized because of mental problems; they thought I had had a stroke. All kind of tests were run and they could not find anything to suggest a stroke. I was lucky enough to have a Dr. assigned to my case that would not give up. He found that I was desperately low on Thyroid and Vit. B 12. He said when Sutent first came out, right before I was put on it, that the doctors did not know it would deplete the system of thyroid and B-12.

My medical doctor raised my Thyroid doseage and put me on B 12 injections. He aslo told me to stop taking Imodium for the diarheaa and start on Benefiber. My husband fixed me some diluted juice and Benefiber twice a day. Wow, it really made a difference in the diarheea!

In Jan., '09, my Onc left and I got a new one. This doctor insisted that it was past time to have my kidney and tumor removed!!! He set me up with a Urologist who agreed it was time for surgery; but he did not want to do it. He then set me up with a surgeon at the UWMC in Seattle.

This surgeon took me off of Sutent a month before my surgery in March, '10. I went home 3 days after the removal of the left kidney and tumor! The incision was made high up on my abdomen, and I got along beautifully!

I now am seeing an Onc at the SCCA in Seattle. I went back for Blood Work, CT and MRI a month after the surgery, and have gone back twice at 3 month intervals for the same tests, plus a bone scan this last time. I will go back in 4 months this next time. The Onc explained that I will always be a Stage 4, (because the cancer had gotten out in my blood and made the mets in my lungs); if and when something shows up I will go back on Sutent.

In a very short time after surgery, I transformed back to the old me; I mentioned to my son one

day how surprised I was that I had gotten such a sun tan. He said, Mom, you have just got your color back! Prior to the surgery I was about as white as a sheet.

God truly blessed me; I feel so good since being off the Sutent; I feel like I have another chance at life; and I wish all of these things to each of you.

Trust in the Lord, and MAY HE BLESS YOU!

B

Thank you for sharing your story with me.  It is heartening to know that you are feeling well 2 1/2 years after being diagnosed.  Sounds like you had some tough times early on, though. 

I am very concerned about the side effects of Sutent I have been reading about on this web site.  My CT scan in October will tell the story if the Radioactive Therespheres are shrinking the tumors in my liver, and if anything else is cropping up elsewhere.  If all is quiet, I hope to convince my oncologist to put me on a 25 mg dose, instead of the standard 50 mg., since I don't weigh very much any more, and I dread the thought of being sick most of the time.

In the meantime my stomach seems to be healing--if very slowly.  I am still on Nexium morning and evening, but I can't imagine that will continue once the Dr. says it's time to start taking the Sutent.  From what I'm reading, Sutent can do a number on your stomach all by itself.

Perhaps if you do need to go back on Sutent (God forbid) a smaller dose might help you tolerate it better.  Also, the Dr.  said if the side effects were bad, that the timing could be changed--taking Sutent for two weeks, then off for two weeks, and repeat.

God bless all of you out there who are dealing with this dread disease--either for yourselves or a loved one.  It hurts as much either way.

So glad I stumbled on this web site.  It provides information, support, and just someplace where people understand what you're going through.

All the best to you

SheilaK

My husband had rcc and had his kidney removed too. that was in 2008 and since then he's had mets to the spine, lung and pelvic bone that we're aware of. he was on Sutent for about a year, with few side effects. At first the dosage was too much and he got blisters on his hands, but his oncologist reduced the dosage and for a long time he did well, except he was tired.

He has since gone on to use toracel, which is iv and after five cycles, it wasn't working so now he's going to be using Nexavar. I'm nervous about the side effects of this drug but I can assure you that my husband's side effects on Sutent were mild.

On Aug 22, 2010 12:15 AM rcccaregiver wrote:

My husband had rcc and had his kidney removed too. that was in 2008 and since then he's had mets to the spine, lung and pelvic bone that we're aware of. he was on Sutent for about a year, with few side effects. At first the dosage was too much and he got blisters on his hands, but his oncologist reduced the dosage and for a long time he did well, except he was tired.

He has since gone on to use toracel, which is iv and after five cycles, it wasn't working so now he's going to be using Nexavar. I'm nervous about the side effects of this drug but I can assure you that my husband's side effects on Sutent were mild.

Thank you so much for replying and letting me know of your husband's experience with Sutent.  Reading some of the posts can be scary, as it seems some people have had real problems with mouth sores, etc.  It was a relief to hear that his side effects were manageable.

I wish you and your husband much success with the Nexavar.  It's a journey none of us would have chosen, but wonderful that people are willing to share their experiences and concern for others along the way.

19 years ago I lost my right kidney to renal cell. I followed up faithfully with my tests and studies under my doctors care. At that time the only options if the cancer returned was surgery if operable. Now, 1 year ago I was told the cancer was in my liver and lower section of both lungs. I have been a patient of Sutent: 28day on 14 days off. So far my ct scans show some shrinking or no change. Just had a bone scan and checked out ok. But, the side effects are very difficult and yes only the person who is dealing with this can understand how you feel! There are days I just want to give up and die. My family and co-workers say "to look at you I just can't believe you have cancer and going through kemo". Thank you for this website

Hello, Jeanniebellie

Thank you for responding to my request for information about Sutent.  Nineteen years ago did they tell you that your cancer was encapsulated and that you no longer needed treatment?  I understand that you were watched closely, but it took 19 years for it to recur??

What dosage of Sutent are you on?  It seems the standard is 50 mg.  Has your Dr. talked about reducing the dosage since you were having problems with the side effects?  Please keep me (us) posted on your progress.  All the best to you.

Sheila