STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

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Kathryn in MN
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STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Kathryn in MN » Mon Nov 04, 2013 12:35 pm

Hi all! I am starting this thread like we did the Zaltrap one, so those on it can post experiences here to help out others who will be one day trying it. Please post your side effects and updates on how the drug works or doesn't work for you, dosage reductions, etc. When people search Stivarga or Regorafenib in the forum, they'll be able to get a lot of information in just one thread if we all post here.

I have not been on this drug yet, but will start it in January.
CRC AUG09 Age 47
Sig Res T4a N2a Mx, KRAS mut codon13
Mets bones & nodes
FOLFOX, FOLFIRI, Avastin, Radiation
Irinotecan, Zaltrap & STAR RFA
APR13 pleurisy & ascites - more chemo & draining
http://www.caringbridge.org/visit/kathrynblume

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Guinevere
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Guinevere » Mon Nov 04, 2013 1:03 pm

I hope this thread can keep going. I tried with the other thread but it soon got lost in the shuffle.

My experiences were bone pain (excruciating), mouth sores (felt like thrush but wasn't and also very sensitive to hot and cold foods) , my hand/foot was different than it was on Erbitux and Xeloda (no peeling but more swelling, redness and pain), blood pressure shot up pretty high (I think it got to 162/110) and dry mouth was a constant problem. In fact, the dry mouth caused one of my last jaw teeth to start disintegrating. It's a problem now that I'm on a different chemo but that's for another thread.

It didn't work for me but I'm glad I tried it because I will know I've tried everything if and/or when nothing works. There are others who have posted about better results than I've had so I hope this doesn't discourage others.

God bless ~
Guinevere
Hrt atk - Feb 11
CRC4 DX - Apr 11
APR liver rsct, procto - Jul 11
Folfox/Avastin - Sep 11
Xeliri - Nov 11
Iritux - Jun 12
Break - Jan - Mar 13
Iritux - Mar 13
Stivarga - Aug 13
Folfiri - Oct 13
Exhausted treatment options - May 14

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secriswell
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby secriswell » Mon Nov 04, 2013 6:52 pm

Both of you have gone back to earlier chemos before trying Stivarga, yes? Did you have any improvement during those second tries?
(spouse)
Stage III CC dx Jan 09
hemicolectomy Feb 09
Folfox 2009
Folfiri Avastin 6/11
Rad. 10/11
Maintenace Xeliri with Avastin 5/12
Break 6/12-4/13
Multiple mets early 2013
Xeloda and Erbitux failed 6/13
Erbitux and Ininitican started 7/13

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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Asterix » Fri Nov 08, 2013 3:05 am

I will summarise here for completeness. I started regorafenib a month ago. I have only previously FOLFOX + Avastin, (got me NED from lymph node (LN) mets), Xeloda + Avastin, then Avastin only. Then same LN mets cames back. Had those LN's removed, but CEA remained elevated and PET showed the whole chain of LN from pelvis to shoulder involved now. My onc decided to skip standard second line treatment (FOLFIRI) and move to regorafenib. His reasoning was the regorafenib should be more tolerable for me allowing me to live a relatively normal life and no infusions, therefore less visits to the chemo rooms. I am currently deemed incurable.

I started on the normal 4 tabs a morning. Good for about 6 days, then started getting hand, foot and joint (fingers) pain. No skin peeling as in hand/foot syndrome. Aches and chills (but no fever). I was taking paracetamol and ibuprofen with some relief. I got the husky voice at the end of the day, but no discomfort with that. Fatigue increasing towards day 10 onwards. Due to the side effects I stopped after 2 weeks and had a week off. Symptoms resolved within 4 days. I have now restarted on 3 tablets a morning. No side effects yet (day 5) other than slight husky voice at end of day.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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mstults
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby mstults » Fri Nov 08, 2013 6:18 am

My onc told me yesterday he has a few more tricks up his sleeve. Why didn't I ask for details?
Male Age 53. Dx CC with numerous liver mets 6/23/12. Colon res 6/24/12. Started folfox 7/24/12. Added avastin 8/27/12. CT 12/27/12 still showing shrink. Took 17 rounds of FOLFOX. Then 5-FU + Avastin. Switched to Irinotecan for 1 yr. CEA rose to >400. Switched to Vectibix 2/18/15. CEA decreasing. Scans show some growth in liver mets. Lung Mets stable to shrinking.

https://www.facebook.com/michael.stults2/about?ref=home_edit_profile&section=work

Asterix
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Asterix » Wed Nov 27, 2013 9:12 am

Update: I have now finished my second cycle, at 3 tablets a day. No real side effects. I did catch a gastro virus in Week 3 and only had 4 out of 7 days of treatment. My CEA dropped from 130 just after my first cycle started (so it was probably a bit higher) to 98 now, and that's with a week of GI upset. Onc was very happy. Even better, my LDH? and other markers that indicate a tolerance problem were normal. There were a bit abnormal when I was on 4 tablets (as expected). So for now, regorafenib is effective and tolerable for me.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

DogMom
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby DogMom » Wed Nov 27, 2013 5:01 pm

I wanted to share my experience with this drug for those thinking of going on it. I had previously been treated with Xelox + Avastin, then Xeloda + Avastin, then Xeloda only.

It was my oncologist's recommendation to go on Stivarga rather than Irinotecan for QOL reasons. I started on Stivarga on Jan 1, 2013. I took a standard dose of 4 pills per day for 3 weeks then one week off. My lung tumors were stable (no growth and no new tumors) for two quarters. At the end of the third quarter, there was 15-20% growth of the existing tumors, but no new tumors.

The biggest side effect for me was fatigue. I slept more than usual and had much more extreme fatigue than on other chemos. I also had regular headaches, which were controllable with Advil. I had grade 1 hand/foot, and no more diarrhea than I have w/o chemo after surgery and radiation to my rectum. I was very dehydrated, no matter how much water I drank. That's about it. I had no elevated BP or liver enzyme issues, though they test regularly for those.

I will be starting on Irinotecan + Xeloda right after Thanksgiving.

Bonnie
DX 2/08 St 2 Rectal C, 47 y/o
Transanal excision/radiation/Xeloda
mult Lung Mets found 7/09
Xelox + Avastin 5 TX
neuropathy: Xeloda + Avastin 12/09
12/10 40 day Avastin headache, Xeloda
6/11 SBRT lungs
1/13 Regorafenib
11/13 Xeliri-fail
3/14 Gemzar

Ollie
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Ollie » Fri Jan 24, 2014 2:52 am

Hello dear friends,
I am writing to you from a small country town in Australia.
I have just come home from visiting my darling friend Lucy in hospital. She has stage 4 colorectal cancer with significant metastised tumours in her liver which can't be removed. 4 years on from first diagnosis, and with a 17 year old daughter and 14 year old son. She is an inspiration to all who know her. Anyway-she started on Regorafenib last week and after two days started to ache all over and had hot and colds. after five days she came into hospital where they are investigating fevers. all tests for infection are clear so possibly a side effect? info appreciated. more worrying though, she developed a severe pain in lower left ribs on second night in hospital. all tests clear on that for new tumour, pulmonary embolisim and infection. My question is, I think someone mentioned bone pain as a side effect, has anyone experienced anything like this?
love and light to you all,
Ollie

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Ashlee H.
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Ashlee H. » Fri Mar 07, 2014 1:17 am

I thought I'd try to re-activate this thread started by our dear Kathryn. I know she was prepared to go on this drug, but we lost her before she had a chance to give it a go.
This drug is being recommended to me by two ONC's. I'm trying to find as many real patient experiences as possible. I just don't know if I'm willing to deal with the side effects. My joint pain has been awful with FOLFIRI/Avastin, and now that I'm on a chemo break it is so nice to have the pain gone. The thought of no infusion with Stivarga is a plus.

I had heard this drug was extremely toxic to the liver, with many patients becoming jaundice. I've been told by one of the research experts for this drug that they are finding problems when the protocol isn't being followed correctly. For some reason, they are finding the liver problems with Asian patients, not with Caucasians (don't know about the other races). Also, patients are suppose to be tested weekly. As soon as a problem shows up in the blood, the drug is to be discontinued.

So...anyone out there undergoing this treatment?
How long?
Side effects? Could you work with these side effects?
Race?
How many pills do you take a day?
How often are you tested?

I had tried Zaltrap when it first came out, but now you rarely hear about it....I wonder if Stivarga will be in the same category.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

Asterix
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Asterix » Fri Mar 07, 2014 2:47 am

Hi Ashlee,
I've had mixed experiences with Stivarga. I started at full dose (4 tablets, meant to be 3 weeks on 1 week off) and was fine for the first week and then got some weird fever / chills / joint aches but no actual fever. Stopped for a week and restarted at 3 tablets and basically no side effects. CEA when down at first, but then went back up so we changed to 4 / 3 tablets on alternate days. Next cycle was pretty uneventful. I then went to the US for a family holiday and got to 10 days before joint pain started. This was also when we were about to be skiing for 10 days so I stopped to enjoy the skiing. Side effects resolved in 2-3 days. Restarted and got through the whole 3 weeks with minimal side effects, no joint pain. Saw onc when we got home and my CEA is still climbing, but not as fast as before treatment. I'm due for a scan soon to see what's happening, but if it shows progression I'll be changing to irocetan probably. After restarting this cycle I only go to 10 days this time before foot pain was so bad I couldn't walk. No real blisters, it's like a deep bruise pain. Slowly improving and almost normal now (stopped tablets 3 days ago). Also my hair has started thinning, although it seems have slowed down now.

I think you should try it, you can always stop if the side effects are so bad and they appear to resolve quickly in my case. My liver function has been normal through all the blood work, we started with weekly blood work but now it's only done every month or so. I've been on it now for about 4 months and have many more good days than bad. I would probably stay on it if it's working. My onc says if symptoms start, then stop for the week and restart, don't tough it out as they can get a bit worse before getting better.

There is a guy on colontown (Facebook) who has been on it for a year with stable or shrinking mets.

Hope that helps.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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Ashlee H.
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Ashlee H. » Sat Mar 29, 2014 1:44 am

Call me crazy, but tomorrow I start Stivarga. I'm still feeling pretty good. My cancer markers are still going up, which was to be expected since I've been off chemo for a month. I'm really not hopeful that this drug will do much. However, my ONC does have a patient who is stable and whose tumors just showed a 10% reduction. FOLFIRI + Avastin was only working on 80% of my cancer and was giving me a horrible quality of life. I'll be seeing the ONC every week and a nurse will be calling me three times a week to closely follow me and the side effects. I know Kathryn was going to try this drug before she die. If she was willing to try it, then I will do so in memory of her - the things she did extended her life for years. We are starting with the 3 pills instead of 4. Will keep you all updated. Anyone else have any more updates on their experiences?
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby weisssoccermom » Sat Mar 29, 2014 2:25 am

Good luck Ashlee. I know nothing about the drug....but just wanted to wish you the best of luck with it. Hopefully whatever side effects it may have will be mild or nothing.
Take care tomorrow and please keep us updated.
Hugs,
Jaynee
Dx 6/22/2006 IIA rectal cancer
6 wks rad/Xeloda -finished 9/06
1st attempt transanal excision 11/06
11/17/06 XELOX 1 cycle
5 months Xeloda only Dec '06 - April '07
10+ blood clots, 1 DVT 1/07
transanal excision 4/20/07 path-NO CANCER CELLS!
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Asterix
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Asterix » Sat Mar 29, 2014 2:55 am

Hope it goes well for you Ashlee.
Stage IVb age 37 Nov11
FOLFOX+Avastin, Xeloda+Avastin
1 year NED
regorafenib Oct13-Feb14
lymph node, lung, spine, rib and liver mets
GNAQ Q209P mutation > Mekinist Jul14
Radiation bone mets Aug14
Pain>hospital Oct14
FOLFIRI Nov14 >
Home Xmas 14

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Ashlee H.
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Ashlee H. » Sun Apr 06, 2014 3:16 pm

Just leaving an update as this thread is to help those determine a decision in regards to taking Stivarga. So here is my first week's experience.
I got my pills. Easy to take, not horse pills or anything like that. The side effects I started to have were very mild, and nothing I had not experienced with other chemos. My tongue was the first to react and was very sensitive (no Mexican food for me!). Then I had a headache all day. I checked my BP and it was pretty high. I noticed some body aches and fatigue was noticeable. Then I lost my voice. My ONC is keeping a watchful eye out for me. When he heard of the side effects, he told me to stop the drug for 5 days, and then he will re-introduce it. He has had success doing this, and when the drug is reintroduced the side effects don't seem to come back or are much less.

My tongue has always been a sign to me when the chemo starts to work - killing off cells. I don't have mouth sores, but my throat feels like it may have some ulcer type sore. Because of this, it is painful to eat so I am pretty much sticking to protein/smoothie drinks, toast, and mashed potatoes. I might finally lose a few pounds, something I've never been able to do on the other chemos.
Stage IV w/liver met dx 7-1-09
KRAS Mutant
Member of the HIPECKERS (2011) and OLYMPHIANS (2012)
2/14 - standard chemo has stopped working
3/14 - Stivarga
LIVE LIFE!

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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby live2jett » Thu Apr 10, 2014 4:57 pm

Friend... I have tried to call you a couple of times. I will send you a email...think of you often xoxoxoxo
Age:51
DX 10-21-08 Advanced stage IIIC T3 N2 M0
10/20 nodes pos.
Colon resect surgery 11-03-08
chemo 12-03-08 Folfox4 3 rounds
Xeloda 5 rounds(due to leucovorin shortage/severe reaction with oxi)
Carpe Diem NED Update 2014


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