Getting ready to start sutent......

My renal cell carcinoma is back after they removed my right kidney 8 years ago.   I wii start taking sutent soon.  If you can give me some first -hand info on this drug it would great.

Thanks,

victor

I was on sutent for the first six months of this year, standard schedule of four weeks on, two off at 50 mg. The fatigue became excessive, as well as nausea and difficulty eating. My doctor changed up the schedule to two weeks on, one off, same dose, with very little improvement in the side effects. Other side effects included high blood pressure, thyroid issues, mouth sores, not to mention the lovely white hair. These issues were compounded by the fact that I was working a full time job. It all became too much and I quit the sutent in June. I had one scan during treatment and did have shrinkage of four major tumors (lymph node, lung, liver and abdomen) but feel my quality of life is worth something too. I'll have another scan in a couple of weeks and decide if I want to try it again, maybe at a reduced dose. This has been my experience. I have read of others being on it for quite a long time, with great results and I would assume fewer side effects. It has been a great option that we didn't have just a few years ago. I hope you do well with it!

Hi Victor,

My mom's renal cell cancer is also back after 20 years of no cancer and having removed the one kidney back then.  July she was diagnosed with a tumor on the remaining kidney and has spread into the lungs. She is starting her 3rd week of sutent. 50 mg 1x a daily.  We have also had a virus run through our family so I don't know what symptoms are from what.  I've done a lot of research on Sutent and it seems to be the one for kidney cancer. Sorry to hear your report. Hang in there. You're not alone.

Hi Victor,, sorry to here your news. Mine returned as secondaries in lungs & remaining left kidney after 6yrs!

In terms of what this drug can do, or cause, there is plenty of info in the forum. I find it great to read so many positive stories, which I take encouragement in. That helps me remain positive.

I have been on sutent since Oct 2010, so nearly two years. Initially on 50mg 28/14, then reduced in September last year to 37.5mg 28/14.

After reading many diffent stories about side effect etc, it seems that everybody is different.

Two side effects that have effected me the most are sore feet and the change of hair colour, brown to white.

I really wish not to dwell on the negative, there are far many more positives of the wonders of this drug. It certainly is having great results for me, and for that I am glad.

Read what you can on the possible side effects, & remember everybody responds differently to this treatment and you may not experience any at all.

Good luck. Craig.

I've been on it for 16 months.  Some tips:  First, it has lots of side effects.  Some are no big deal, some are mildly annoying, a few require watching so they do not produce anything dangerous.  All of these concerns are mild compared with the concern that the Sutent actually work.

Second, of the more serious side effects - raising blood pressure to high levels is very common.  This can be controlled with anti hypertension meds.  Suggest consulting a cardiologist and maybe a nephrologist if you experience this.   The blood pressure quickly goes back to normal during breaks in the Sutent cycle.  It took me a few months to find the combo of blood pressure meds that keep mine ok through the cycle.

In my case (and I think commonly) the Sutent pretty much shut down my thyroid.  This is no big deal, you just take thyroid supplement hormone pills each day.  They fix teh problem and you do not feel anything.  But import to watch your TSH (thyroid test) closely.

You should do a heart echo every six months approx.  In some people the SUtent causes heart damage or changes.   The echo rules out anything.

Regardly the mere annoying, in my case the worst are gastro issues, cramps, pains, gas, and the runs.  These can be partly controlled with over the counter things.   SOme people find probiotic pills (the "good" bacteria - from health food stores) helps. 

Other side effects are fatiugue, muscle weakness, changes in taste in mouth, hair turning white(r), dry skin, watery eyes sometimes, days with low appetite.  Other people report some other side effects.

Live for the BREAKS in the Sutent regime!  Party time!

I recently switched from the 4-week-on-two-week-off regime to the 2-week-on-one-week-off regime and the side effects are MUCH better.

What would be the reason you either decrease dosage or switch from 4 weeks to 2 weeks on and 1 week off? Is it because of the severity of side effects?