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Had to stop Regorafenib

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

I had to be taken off regorafenib after 10 days due to jaundice and various liver numbers being too far out of whack. I didn't even bother arguing with the doctor that yellow was a good color for me Smile. My platelets fell too, but not enough to be worrisome. I missed out on all of the other side effects. In 2 weeks i see my primary oncologist and discuss whether it is worth retrying at a 50% dose (I was at 75%) or if we should move on. There aren't lots of options left to move on to, but at least there are still some left.

Goldie1's picture
Goldie1
Posts: 256
Joined: Sep 2011

that Stivarga didn't work out for you.  When my husband started, he had such a bad reaction to it, that they took him off it for a few days, then cut the dose, then moved him back up to the full dose.  Next week CT scan to see if it has slowed down growth.  If it hasn't, only option is a clinical trial.

Let us know what happens after you see your onc!
 

Take care,

Ellen

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

Having gone through a couple of failed regimens myself, I know the feeling.  Have other chemos worked for you in the past?  I know some people are able to go back on an earlier successful regimen and have it start working again.  It's like the cancer cells have forgotten about it or something.

I hope your doc comes up with a good plan for you!

Keep us posted~AA

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

I did really well on FOLFOX plus Avastin until I had a reaction to the oxy. The doctor doesn't think he can give me enough oxaliplatin to make enough of a difference to make it worth doing desensitization again. He did suggest 5FU plus Avastin as a possibility.

annalexandria's picture
annalexandria
Posts: 2297
Joined: Oct 2011

the oxy only accounts for something like a 5% difference in outcomes.  He cut it way back in my case, because I was getting such bad neuropathy.  Don't know for sure if he's right about that, but if he is, maybe doing the 5'fu combo would make sense.

devotion10's picture
devotion10
Posts: 642
Joined: Jan 2010

I am also glad that the clinial trial questions from the other post might be helpful to you ... but, remember you aren't there yet.  Maybe temporarily being off the regorafenib can get your liver and platelets in better shape so that you can resume.  Even at a lower dose it seems worth a try.  I think Jeff mentioned that your avatar was lovely ... it is, always makes me feel good. Lilac is my favorite color.

Peace. ~ Cynthia

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

When I started Stivarga, the doctor brought up the option of clinical trials as well. I am hoping to be able to give the reorafenib another try. I'm glad you like my flowers. I'm not sure what they are, maybe phlox. I also have lilac bushes. Both of which are courtesy of the perrenial-planting prior owners of the house, and I haven't managed to kill the plants off in 20 years or so. I love plants that keep themselves alive!

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

How long were you on the eurbuitux and irinotacan?  That is my current treatment, so I was just curious.   I was advised against Regorafenib.   I am sorry to hear about the jaundice, but happy to see you seems to be in good spirits....yellow is a pretty color!

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

to steal your thread but lisa2012 if you dont mind could you tell me why you were advised against Regorafenib im trying to weigh my options.serenity i too went thru the jaundice thing very scary i had to have a stent put in my bile duct as a tumor had started to block it....Godbless...johnnybegood

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

JBG, my doctors told me that the side effects of the Regorafenib were not worth the results and because I had not already tried erbitux, they felt that would be a better option at this point.   If this doesn't work for me, my onc wants to discuss the cyberknife.

johnnybegood's picture
johnnybegood
Posts: 1122
Joined: Oct 2008

i have researched this site and drugs.com and it seems it has all the nasty side effects as all the other chemos i have been on thanks for your reply...Godbless..johnnybegood

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

Johnnybegood, I remember how worried we were when you went through it. I think your situation was much scarier than mine. Remembering your story helped remind me that I needed to take it very seriously, which is why the doctor didn't get my usual guff about not wanting to take a break from my cancer meds.     Serenity

serenity101's picture
serenity101
Posts: 82
Joined: May 2013

I was on irinotecan and erbitux from November 1 to February 7. CT on December 19 showed positive response, CT on February 12 showed new quarter-sized liver met. I think many people get a lot more mileage out of this drug combination than I did.

Lisa2012's picture
Lisa2012
Posts: 142
Joined: Feb 2014

Sorry to hear it didn't provide you better results.

Hooley's picture
Hooley
Posts: 156
Joined: Aug 2012

i was on erbitux 6 months too. First 3 months did great shrinking tumors.  My onc didn't want to scan so had no scan for six months he said if they were growing I'd have to go off erbitux.   Decided to get second option and they scanned. Not good larger tumor in lung grew 20mm!! Nowm63 mm.  Surgeons want to get it under control and recommending microwave ablation. Don't know much about it yet.   Tumors often become resistant to erbitux. Bugger

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