Sutent & Yervoy (response to Sarah Eliz.)

Posted By
9/10/2012 1:03am
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Replies: 5

Sarah,

I had both Yervoy and Sutent, and so can speak to the side effects I had, but, as you know, everyone reacts differently, and this nutty cancer seems to do whatever it wants whenever it wants with no reason or regularity to it.  Thus, my experience really will not be a guide for you, however I'm happy to share.

Sutent kept me stable for almost 2 1/2 years, but that far, far exceeded everyone else on the clinical trial.  Initially I could not tolerate the full dose (37 mg), which gave me a horrendous headache 24/7, so Dr. Sato reduced my dose to 25 mg.  The headache went away, but I had other side effects:  including fatigue, diarrhea, bleeding hemorrhoids, and sores on the soles of my feet (the last was really a problem).

There is a new anti-angiogenic that I understand to be "stronger" than sutent, but has fewer side effects:  Axitinib.  It is not yet approved, but there are clinical trials with it (see clinicaltrials.gov).  That's all I know about it.

I had both PD-1 and Yervoy (at different times).  The PD-1 kept me stable for a short time, but then I had new liver mets.  I had immuno-embos (Sato) for those, then went on to Yervoy.  This kept my body mets roughly stable (a few bigger, a few smaller), but then I developed two brain mets.  I had those radiated, and will be scanned again next week to see if the Yervoy is helping.  Side effects from Yervoy were not that bad for me, but I'm sure you have heard stories from others about bad side effects.  I had fatigue, taste problems, didn't feel like eating, sores and sensitivity in my mouth, rashes, cycling from constipation to almost diarrhea, and more.

Let us know what you choose.

Lots of luck,

Esther

My first time on this site so I hope this is coming across okay.  I have Stage IV melanoma in my bones a few mets in my head not my brain so far and some tumors under my skin.   I have had radiation two times on my head.  I took Yervoy last July 2011.  I had the bad side effect of colitis.  I was only able to take three out of the four treatments.  I had to be hospitalized for the colitis for eight days.  I recently had 10 treatments of radiation on my head but haven't had any other treatments since July 2011.  My doctor talked to me about the possibility of PD1 but now says since I had such a bad side effect with Yervoy that I am not probably going to be a candidate for PD1.  I do not have the braf mutation so I guess I am limited to most treatments that are effective.  Does anyone have a similar story?  The Yervoy I think worked because the tumors under my skin have mostly dissappeared but I still have it in my bones.  I am looking for another treatment that might work since I don't have the braf mutation. 

 

Hope to beat the disease or at lease live a little longer than expected.

Thanks Exther! 

Believe in six impossible things before breakfast.

Hi

I had ipilimumab and progressed dramatically in liver which i had treated with SIRT. March 2011. Since my progression I have been recieving Zolendronate infusions to slow or keep bone mets at bay. So far none. I had loads of side effects with ipi- hospitalised when my heptatis started- high fever but always settled with steroids.

XL184- I think Gregg had it and it led to shrinkage of his bone tumours. It is a licensed drug cabozanitib( I think) for thryoid cancer. So you would just have to persuade them to use it off label.

May I ask at what stage did you start steroids. I started steroids when i started having bowels open in night and mucus never progressed to blood but did go on to get abdo discomfort and distension luckily nothing more. Didnt have a colonoscopy until i had finished ipi and was improving but saw blood looking stuff after a meal. Must have been animal blood as nothing in my guts.

I was started very early on steroids which I hated and thought maybe I would try and hold out longer if I get ipi again. So curious how bad you were when you went on steroids?

 

Carpe diem

 

Lesley

Hi Lesley,

I haven't started a protocal yet.  It looks like I am not elibable for any of the active PD-1 trials right now.  So I am going to start Yervoy soon.  I am curious what dose people have had and how they tolerated it.  

Thanks for the response.  

Be Well, 
Se 

Believe in six impossible things before breakfast.

Ooops.  It looks like we have two Sarah Elizabeths.  This is [Love X Infinity]2 Sarah Elizabeth. 

Believe in six impossible things before breakfast.