CancerCompass message board discussion started by Hunygrl on 3/26/2008 http://www.cancercompass.com/message-board/message/all,22381,0.htm Mon, 13 Oct 2008 00:00:00 GMT Mon, 13 Oct 2008 00:00:00 GMT http://backend.userland.com/rss RSS.NET: http://www.rssdotnet.com/ I find that after about three and a half weeks I can no longer tolerate the sutent and most of the time stop taking it because I get so sick i can't stand it.  I have wanted my doctor to lower the dosage so I can tolerate it but so far he hasn't and I don't understand why.  If I can't take it then a lower dosage makes sense to me.  It is frustrating to me.  It makes me so sick and my skin turns yellow and of course you can't taste and you get a salt sensitivity and can't eat hot things.  I get horrible diarhhea and am so weak.  I am stable and am so far doing all right.  I just hate the way that drug makes me feel and I hate that for weeks on end I am sick as hell and don't enjoy my life at all.  I just don't want to take it anymore.  And the cost of this drug is almost $7000 a month.  Even if you are rich who can afford that?  I wish I were like some of you that have little side affects because to me it feels like I have acid in my stomach the likes of which I have never experienced before.  Hunygrl Wed, 26 Mar 2008 00:00:00 GMT Dear Hunygrl,It sounds like you might want to search out a different Oncologist. Let the one you have know (if you havent already) what side effects you are having. See if he/she would change your doseage since you cant endure the side effects. You might also want to ask about getting a MUGA scan done which will establish a baseline for your heart functions. Another side effects of Sutent is that it can damage your heart. My oncologist ordered CAT scans about every 3 months and a MUGA scan every 5-6 months I was on Sutent. I took Sutent for 12 cycles before it stopped working. Now I am on Avastin which is given in an IV form every 3 weeks with no side effects yet. Some suggestions for you for  the Sutent side effects.Sore hands/feet- Udder Smooth Udder Balm 3 - 100mg tablets of Vitamin B-6Diareah- Imodium ADAcid Reflux- PrilocetCheck with your Oncologist to make sure he/she is OK with it. There have been other suggestions on this forum to deal with the inflamation of the hands/feet. I dont remember what they were but someone will probably post that for you here. Good luck! Terry   Terryjoe Thu, 27 Mar 2008 00:00:00 GMT  Dear Hunygrl, Sounds like you need to be more demanding of your oncologist or look for a new one. You didn't say what dose of Sutent you are taking, but if it is 50mg. there is room to decrease it. I am on 25mg., but will increase to 37.5mg on my next cycle. The advice you got from the last responder sounded pretty good. I take Imodium to control the diarhea, and it works pretty well. I am changing health insurance to medicare and my Rx coverage will stink, but I'm going to apply to the drug company, Pfsiar for assistance. The social worker affiliated with the oncology practice I go to has been somewhat helpful in guiding me in that direction, although I was ahead of her and doing it myself. With the Medicare part D program I'm enrolling in, my out of pocket expense for the drug is estimated to be around $8,000 a year. Not a bargain but better than $7,000 a month. Do you have any prescription drug insurance? Most plans cover the drug and you pay a co-pay. Are you disabled and on Medicare? If you are truly poor you can apply for medicaid, government insurance, and it will pay for the drug. I know it is a drag and can be overwhelming, but you shouldn't suffer so much. physically or financially. Best of luck.Anyone out there get help from the drug company to pay for Sutent? I would be interested in talking to you.Richard Richard2 Thu, 27 Mar 2008 00:00:00 GMT I have been taking Sutent for a year and still hold ing my own.  Last month the dosage was reduced because the side effects had worsened and I was extremely sick  I have my next scan on the 14th of April.  Hopefully on the reduced dosage it is still working. Good luck to all of you.Franny Francese Mon, 07 Apr 2008 00:00:00 GMT