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Regorafenib - info? stories? results?

Kathleen808's picture
Kathleen808
Posts: 2319
Joined: Jan 2009

Hi Friends,

As I mentioned Dick's scan from 9/13/13 showed progression.  Today we met with his local onc and he recommended Regorafenib and then looking for clinical trials.  We are all interested in the study at Stanford which uses immune therapy.  We are also meeting with Dr. Castro here in Hawaii on Thursday.  He specializes in personal chemos and treatments and he is one of the lead docs for caris - a group that looks at DNA.  We have a call into Dr. Lenz who has been seeing Dick for the past 4.5 years and we are seeking his opinion.  So, we are in the seeking stage and hoping to find the right plan for this step.  We feel that so many treatments are almost developed or just starting out and we hope we go in the right direction. 
So, back to my original question. I know that people on the board have been on regorafenib - can you please share your stories?  Since you take the pills for 3 weeks and then only get a week off, are you sick all the time?  How sick?  Did your progression stop?  For how long?

Thanks.

Aloha,
Kathleen

Lovekitties's picture
Lovekitties
Posts: 2995
Joined: Jan 2010

I ran a search here and that is not much being reported on this site even though the drug has been out for a while now.

I searched the web and did find a site that has some info about the drug, potential side effects, etc.

http://www.stivarga-us.com/index.html

Hope you may find it useful.

Hugs,

Marie who loves kitties

annalexandria's picture
annalexandria
Posts: 2322
Joined: Oct 2011

has a couple of threads on this.  Not that I'm trying to send anyone away from here, but as I think you post there anyway, I hopefully won't get in trouble.  Has Dick had Zaltrap?  I know KathryninMN has had some luck with that, as have others at the CC.

steveandnat's picture
steveandnat
Posts: 887
Joined: Sep 2011

I started on Stivarga in January 13 one tablet everyday for 3 weeks. It wasnt to bad compared to some of the other chemos I took. Fatigue was the only bad side effect. I am stage 4 since June 2009. I've been on all chemos since the beginning, no surgeries.  In April I had a ct scan, unfortunate the resultsdidn't not show the cancer was contained so my onctook me off of Stivarga. Like the say everyone  is different. If you have more questions please IM me and wdiscuss discuss in more detail. I dont know howmany other options you have but I would recommend trying Stivarga . I pray we make the best  choices. Jeff

Kathleen808's picture
Kathleen808
Posts: 2319
Joined: Jan 2009

Thank you for caring and for sharing.   We are interested in any other rego...   stories out there.   good, bad or ugly   The more info the better.

 

Thanks!

 

Aloha,

Kathleen

Chelsea71
Posts: 1170
Joined: Sep 2012

Steve was going to go on Stivarga before he passed away.  We decided not to try it.  Spoke to several onc's about it.  They all pretty much said that there was high hope for it when it was approved last year, however, they had not seen a lot of success with this drug.

A neighbor (stage four cc - liver/lung mets) tried it recently.  Cancer progressed while on it.

Wish I had something positive to report.  Hate to be a Debbie Downer.

I do suspect you and Dick will figure out something, you always do.  You're a wonderful wife and caregiver, Kathleen.  I understand what a difficult time your going through.  

 

Chelsea

geotina's picture
geotina
Posts: 2071
Joined: Oct 2009

Don't have much to offer on the effective of this drug, I really didn't research it that much for George.   Unfortunately, I have not read a lot of success strories using this drug.  There were several on the Colon Club that have used it.  Hopefully, you can put the pieces together shortly and get some answers.

Hugs - Tina

LAckerm1's picture
LAckerm1
Posts: 15
Joined: Mar 2011

This was a post I put on the board on Feb. 21, 2013: 

My husband has been battling colon cancer since Jan 2004. Had surgery and 6 months of chemo. All was well until Jan 2011 when spots in pleural lining showed up plus mediastinal lymph node involvement. Biopsy confirmed metastatic adenocarcinoma. Has been on weekly treatments since Jan 2011 advancing from one to the next as they stopped working ( 5FU, OXILAPLATIN,IRINOTECAN, avastin, ERUBITUX) and now Stivarga. Also did a phase one clinical trial, had cyber knife on a rib that was impacted by tumor and recently had a drain put in pleural cavity for drainage. We are fortunate to live in Cleveland and have had wonderful medical care at Seidmen Cancer Center.  I also feel lucky to work for the same hospital system where he has been getting his treatment.  At any rate he is in his 2nd round of Stivara (4 pills daily for 3 weeks and one week off). I have tried too find info from others on this new treatment without success, so, I am reaching out via this site to anyone who has any experience with it. At this point I feel that he is getting weaker and drifting further away from me daily.  

Dennys' experience with Stivarga was not a positive one.  Not sure what caused him to lose his voice but there have been other posts on colon club indicating the same effect.  The drug did make him extremely weak, weakened his voice and made swallowing very difficult even for liquids.  Weight loss was rapid and not sure it was the drug or the cancer.  It was our last shot though and we had hoped it would help.  He passed away on May 8th 2013 but was  originally diagnosed in Jan. 2004.  He fought a valient fight and was doing well until December 2012.   Wishing you luck with your battle against this horrible monster. 

 

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