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Sutent and Clinical Trial Update

Posts: 86
Joined: Dec 2013

It has been a long time since I last posted. I had decided that after all of the issues I had with my clinical trial:7 hospital stays, loss of my thyroid, rod in arm due to bone cancer, and the loss of my adrenal glands that I would hold off with the bad news and wait till I had something positive to write about. Well that happened last week. Quick update: was "kicked" out of the clinical trial last November and quickly was placed on Sutent. Did the 4 weeks on at 50mg and two weeks off but that was too much so I went to two weeks on at 37.mg and one week off and that has worked. Normal side effects: nausea, extreme body aches, numbness in feet, hair turning white, and some dry heaves. Have hypothyroidism due to trial and I am now adrenal insufficient (I believe they call it Addison's Disease) and have the normal side effects one would expect with these issues. Immune System is shot so had infusion of inflomax (?) to help give it a boost which seems to have worked so the quick and hard onset of colds have diminished greatly.

Jump forward to last CT Scan (early April) and the following occurred:

  • Cancer in Bone in Arm gone (Due to radiation)

  • 2 areas on right lung NED

  • 1 lymph node NED

  • 1 spot on lung and 1 lymph node too small to measure

  • 1 area on adrenal gland down to 0.05cm

  • Thyroid same size. has not grown or shrunk since diagnosed

  • 1 lymph node doubled in size but the center is black so they think it is dying from the inside out and that the increase in size is just swelling.

    It looks like the combo of the trial drugs (Nivolumab and Ipilumab) and Sutent are working for me and supposedly for others like me that have left the trial. The issue for me with the trial was that I was given the largest dosage of the drugs possible and they have since learned that one cannot tolerate that much without the severe side effects that I had. Well that is what happens when you are in a Stage 1 Trial but if I wasn’t in it then I wouldnt be here! Next CT scan is August and hope is all is gone but Thyroid at which time we will discuss surgically removing it.

    To all hang in there and keep fighting. There is a light at the end of that tunnel…………..





Positive_Mental_Attitude's picture
Posts: 454
Joined: Jul 2014

That is fantastic news!  The major takeaway for me is "It looks like the combo of the trial drugs (Nivolumab and Ipilumab) and Sutent are working for me and supposedly for others like me that have left the trial."  It is very heartening to hear news like this.  Thank you for posting.

Darron's picture
Posts: 310
Joined: Jun 2013

Great news. I am still on the phase I of Nivolumab and Sutent, still NED (scanned on May 7)

My understanding is that the Surent arm was too toxic for mpat and will not move forward. Wondering out loud if the Sutent after trial is a big factor.


stay well!

sblairc's picture
Posts: 586
Joined: Feb 2014

So happy for you and dancnbear. Great news. 

todd121's picture
Posts: 1449
Joined: Dec 2012

Wow. You've been through a lot.

I admire how hard everyone is fighting this damn thing. Glad there's good news to report. My aunt has Addisons. It's a pain in the ***, but she's been dealing with it for years and managing pretty good, so I know it can be done. Her daughter is missing a thyroid from thyroid cancer, and she's doing ok, so I know that can be done too.

Hope things continue to improve for you.


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