Sutent Experience

I have not posted much since I came out of my clinical trial but thought I would drop on update on my experiences with Sutent for those folks that are new to the drug and are looking for info. But first a quick background:

·         Melanoma-2004

·         Prostate Cancer-2008

·         Kidney Cancer -2008 (left kidney and adrenal gland removed)

·         Kidney Cancer returned (2013) and diagnosed as stage 4 RCC with Mets to lung, 3 lymph nodes, thyroid, and bone

·         Needed to have rod placed in arm due to the extent of the bone cancer followed up by radiation

·         RCC Clinical Trial- 1/14-10/14

·         As a result of trial I now have hypothyroidism and my one remaining adrenal gland no longer works. I am now very susceptible to viruses and have been hospitalized 5 times for over 26 days due to extreme fevers (over 103) and various other things

With that said I am just finishing up my second cycle (4 weeks on/two weeks off/50mg per day) of Sutent. Long term side effects over the course of a cycle have been fatigue (I take naps whenever needed), mouth soars (Have a rinse and magic mouth wash and use when needed), and joint pain (have pills for that). Short term effects seem to start around week 3+ are nausea/vomiting (have 2 types of pills that seem to work), blood shot eyes (still don’t know why this is happening, and some diarrhea. Week 3+ effects are the worse but all in all manageable.

First CT scan is still not scheduled but hope to have it in hand by middle of January. Keeping fingers crossed on that one. Hope this helps


  • Footstomper
    Footstomper Member Posts: 1,237 Member

    On Stutent myself (Stage 4 RCC). Side effects, fatigue (work 1/2 days nap)

    Dry mouth (liveable)

    Itchy skin (various creams, benedryl)

    Diahraea (Imodium, Welchol) stopping me from working, the worst side effect so far.

    Seems Stutent varies a lot between individuals!


    Good luck dancnbear.

    Hmm. There's a Dancing Bear in the town I live in in Frederick MD

  • Limelife50
    Limelife50 Member Posts: 476
    Hi Dancin Bear1

    Wow thats alot of cancer in ones lifetime i myself will keep my fingers crossed on your upcoming scans

  • jacket69
    jacket69 Member Posts: 6

    I just completed my 6th cycle of Sutent. Diagnosed in Feb 2014 with stage 4 RCC, left kidney removed,  three small nodules on my lung.  After the first cycle my nodules shrunk by approx 1/2 and since then there has been no new growth.  Sutent is maintaining the cancer as for now.   I get a little tired in week 3 and  4, mouth tastes bad in those weeks but I work (Lawyer) 8-10 hour days and while the side affects are a discomfort, they are not game changing.  The drug manufacturer even sent me a co-pay voucher to pay what my insurance does not cover. (Check on that if you have a co-pay, income is not a factor) We vacation, travel, and I do everything I did before.  I strongly recommend Sutent if it works for you.  

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    Dancnbear you have had more

    Dancnbear you have had more than your fair share of cancer. And then the side effects of the trial meds on top of it all. Hoping you have good results from it all.

    Thinking about you.



  • Phoenix Rising
    Phoenix Rising Member Posts: 170

    Hi Dancnbear1,

    In which clinical trial were you participating?  I expect to begin CRLX101-208 within the next two weeks, but the study is randomized so Imay get Nexavor/Sorafenib instead.

  • Garryb
    Garryb Member Posts: 5

    Make sure your GP or Oncologist keeps an eye on your blood pressure & general heart health. I had a minor Heart attack whilst on this drug which surpised everybody!