STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

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Regan
Posts: 249
Joined: Sun Mar 02, 2014 11:58 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Regan » Sat Mar 28, 2015 3:07 am

jobasar wrote:I've been on stivarga now for a week and I just am fatigue. I don't have other side effects right now. Don't know if that's good or bad?


Allie


I hope it works and is easier for you!!

Do you have peritoneal, retro or aorta area active nodes?
I can't tell from your sig where you recurred.

Edit.....I so sorry , I just looked up your last posts and saw that you have bone Mets....ouch
DH dx 7/12
Stg IV RC liver mets
11/12 Hrt Attk by Folfox
1/13 Liver resct
4/13 LAR-Temp
NED
1/14 revrsal
4/14 Hrnia surg 4/14
1/15 local recur, liver, lung, aortocaval region of retroperitoneum, anterior wall of distal abdominal aorta
2/15 Irinotecan
1/16 Lonsurf (fail--just zapped. Strength)
Aug 10, 2016 at rest

User avatar
lilacbreastedroller
Posts: 90
Joined: Thu Sep 05, 2013 10:25 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Sat Mar 28, 2015 8:02 am

Regan wrote:To those of you who have been or are currently on this drug, did any of you have metabolic nodes anterior to aorta at L4 and other Retro-peritoneal active areas?


Hi, Regan. I'm not sure what the above is exactly. I had a metabolic node near my collarbone that was the size of a golfball. Stivarga shrank it to the size of a marble.

Karin
dx 6/1/12@45yo
RT, 4 liv, 5 lung
7/12 FOLFOX
2/13 Xeloda 4k mg/d
7/13 DC VAX,1k mg/d metro Xel
11/13 Erbi, Irino
6/14 clinical trial lirilumab, nivolumab
9/14 Stivarga
1/15 clinical trial immunotherapy (young TILs)
RT, mets to liv, lung, adrenal, lns

floss32
Posts: 25
Joined: Sun Jul 25, 2010 6:55 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby floss32 » Sun Mar 29, 2015 6:54 pm

Research http://treato.com Stivarga. :cry: :?

lizzy4k
Posts: 6
Joined: Fri Jan 10, 2014 7:05 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lizzy4k » Wed Apr 01, 2015 9:30 am

3 WEEK BREAK FROM STIVARGA

After a terrible reaction to this drug, my ONC is giving me 3 total weeks off before starting the trial again. The drug company doing the study had us starting with 4 pills a day and after one week my counts were shot. At my 1 week check up they pulled the drugs temporarily. Things got worse AFTER that. I felt worse, then awoke two days later to a full body rash, that within 24 hours blended into a solid red color from head to toe. It felt like sunburn - prickly and hot. Lumps in my cheeks, blisters on my chin. I went to the local ER, who spoke with my ONC and put me on prednisone. The next 3 days were terrible - not much improvement. I never left the house, rarely left the bed. My eyes were yellowing from the high bilirubin. HFS syndrome started - swelling and red and itchy. It was the first time in 4 years I was ready to quit treatment.

Yesterday we drove to Duke (3 hours) to see my ONC firsthand. He did not get to see the full force of it of course - I was just a bit paler than a lobster at that point. He is continuing the sterioid, and the claritin, and the Pepci to control the histamine response. He told me that he NEVER has prescribed 4 pills to a patient, usually he starts with 2 a day. But these clinical trial folks have their own protocol.

He reassured me that after two weeks, if I am myself again, then I would be fine and safe to start again at half doses on both drugs (the study drug is ruxolitinib). This morning I woke looking almost like my pale self - no sunburn pain - what a relief! Face, hands and feet are a little swollen still but I feel human again.

I honestly believe the only thing that saved me was my liver and it's ability to flush all of this out. It has been resected twice and is really only a 3 year old liver now. My bloodwork was all normal yesterday, except platelets being their normal low.

I have read some experiences on this board where some of you have taken 3-4 pills for longer than a week - you must be made of tough stuff! :lol:
Stage IV Sig CRC FEB 2011 Age 47
Mets liver, lungs
KRAS mutant
Colon & liver resect
lung biop pos.
peri-panc node resect
Mix in FOLFOX, FOLFIRI, Avastin Radiation
Zaltrap & Xeloda Trial - limited response
CURRENT: Stivarga & Jakafi trail

drebay
Posts: 220
Joined: Thu Mar 20, 2014 5:39 pm
Location: Oregon

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Wed Apr 01, 2015 5:23 pm

Went in for my Irenotecan today and talked about the effects of another drug that was added to it (Can't recall right now). My CEA had dropped 20 points before the Irenotecan, so I am back on Stivarga for another round. Here we do again.
6/13 Age 45 mom of 11 and 13 yr old DX Stage IV liver mets
7/13 colon surgery
9/13 Folfox
11/13 Xeliri
3/14 more liver mets
4/14 Lung Met
4/14 Liver resect delayed;lung resect done
5/14 Surg not an option
9/14 Stivarga
3/15 Back to IV Chemo
6/15 Avastin
9/15 In Clinical Trial

Vdub
Posts: 2
Joined: Sun Aug 16, 2015 9:10 pm
Facebook Username: Vicki Walker

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Vdub » Sun Aug 16, 2015 10:32 pm

Hello everyone I'm new to Stivarga. Was on it one week at full dose 4 pills 160mg and by the end of first week my foot reactions were so bad my doctor had to put me on 2 week break. Started back with half dose 2 pills 80mg and have been on it now for about 11 days and my foot reactions are starting up again. Very painful feels like blisters on bottom of my foot and very hard to walk without pain. I have been using Udder cream extra care 20 plus many other creams recommended for dry chapped skin. I see nurse practioner on Tuesday and afraid they will break me again.

Can anyone out there tell me what they did with their awful foot reactions and how they treated them and got through Stivarga. My oncologist told me this is last drug he can offer me since FOLFOX has failed miserably this last go round.

Thanks!

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Tue Sep 29, 2015 3:26 pm

I wanted to give an update and share my experience with Stivarga with others. I started Stivarga last November and have now had 10 full cycles (3 weeks on, 1 week off).

The very good news is that the drug is working for me. Just before I started, I had 1 lung met that was growning rapidly and my onc suspected that other spots on my CT scan were mets as well. He didn't recommend surgery or zapping the lung met since the cancer was growing aggressively. That one measurable met initially decreased by more than half its original size and has been stable for the past 5 months. I have one enlarged lymph node in the chest area that has also been stable, and no other mets or lesions. Yay me!

The not-so-good news is that the side effects are not easy. My feet hurt like crazy for 25%-50% of the time because of HFS, to the point that walking is difficult. I don't get actual blisters but the nerve pain feels as if my soles were covered in them. My mouth and tongue are sensitive all the time (goodbye spicy food!) and I get occasional sores. The perineal wound from my APR surgery 2 years ago reopened and leaks constantly and there is no chance that it will heal while I'm on Stivarga. And last but certainly not least, I am beyond fatigued most of the time. I have no energy at all and am anemic to boot. So between the sore feet, fatigue and anemia, I find it impossible to exercise other than to walk my dog a few hundred yards every day. I'm already on the lowest allowable dose (80mg) for the clinical trial, so I basically have to 'suck it up' and live with the side effects for as long as the drug continues to work for me.

I'm emotionally conflicted because
1) I'm one of the lucky one for which the drug works (less than 20% of patients are responding to and able to tolerate Stivarga in the current study). It's keeping me alive and giving me hope for the future.
2) the side effects are affecting my quality of life. No way do I feel like a 44-year old. I try to make the most of it during my break week, but I am so out of shape that it's hard to do much. It's very frustrating.

Hopefully I haven't bored you with my update. So few people seem to be on Stivarga, I'd love to hear some updates from other patients as well.

Take care,

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Redwingfan3991
Posts: 25
Joined: Wed Jun 04, 2014 6:17 pm
Location: DTW

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Redwingfan3991 » Wed Oct 07, 2015 7:01 am

Hello. My mom is currently taking Stivarga. She has been on it for a week. At this point the only side effect is extreme fatigue. As in she can't even sit up or carry a conversation without needing a break to rest. The Stivarga nurse just says fatigue is "common ". I'm not really sure to the point she is at. She is going to the doctors on Friday, so we will see what he says.
Daughter/caregiver to mom aged 64
Kras mutant
4/14 diagnosed stage IV colon cancer mets to omentum
5/14 started folfox & avastin
10/14 chemo not working tumors growing
11/14 laparoscopic surgery to see how much seeding
12/14 unable to do surgery
1/15-8/15 folfiri
8/15- folfiri fail
10/15- Stivarga Stopped after 9 days due to side effects
10/15-- maybe clinical trial ? All conventional options seem to be exhausted
12/15--2/16 clinical trail failed
4/16 LONSURF

JJ2212
Posts: 268
Joined: Mon Oct 14, 2013 3:54 pm
Location: Montréal, QC

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Wed Oct 07, 2015 2:54 pm

Hi Redwingfan,

I hope your Mother gets some answers after her upcoming hospital visit. Maybe they'll decide to lower her dose? If she started at 4 pills a day, there is still some leeway to reduce the dose to reduce side-effects. I only lasted 1 month at 4 pills a day, and while I was able to carry a conversation, I wasn't much good for anything else. My dose has been lowered twice since then and it's a lot better.

Good luck.

Janie
Rectal cancer dx 04/13 @ 42, MSS, KRAS positive
T3N2M1 (1 lung met)
5 weeks xeloda+radiation finished 07/13
APR 9/13 (permanent colostomy), 27/31 nodes positive :-(
12 rounds of FOLFOX 04/14
Lung met growth 11/14
26 cycles Regorafenib (Stivarga) from 11/15 to 01/17
New lung met and chest/neck lymph nodes 01/17
1 cycle Folfiri

Ceebo
Posts: 132
Joined: Sat Feb 14, 2015 9:15 am
Location: Southwest Michigan

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Ceebo » Wed Oct 07, 2015 3:27 pm

Hi Redwingfan,

My husband's situation/cancer history sounds similar to your mom's. My husband decided not to go with Stivarga due to the very uncomfortable side effects. Instead, he is in the TAS-102 trial. So far he's tolerating the drug very well, but this is just the first cycle. I hope the Onc can reduce her dose to help her feel less fatigued. That sounds pretty extreme to be that tired. --Cindie
DH 64 Stage 4 on 4/14 ; cecal tumor; 5+ nodes ; mets to liver; colon resection
5/14 FOLFOX
9/14 - Liver surgery aborted; peri mets
10/14 CT mult.1-2 mm lung mets; FOLFIRI & Avastin
1/15 CT -liver & lung mets shrinking
3/15 PET - ? New met. site colon; CEA rising
7/15 Chemo has failed; looking for clinical trial
9/29/15 started TAS-102 trial
KRAS mutant; MSS

Redwingfan3991
Posts: 25
Joined: Wed Jun 04, 2014 6:17 pm
Location: DTW

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Redwingfan3991 » Wed Oct 07, 2015 6:56 pm

Janie and Cindie

Thank you for your input
I printed out the information on Tas-102 for the doctor on Friday, as well as lowering her dosage, which will hopefully help. That chemo stuff is brutal. I would rather have her ENJOY her time with us than sitting /sleeping on the couch all day.

Michelle
Daughter/caregiver to mom aged 64
Kras mutant
4/14 diagnosed stage IV colon cancer mets to omentum
5/14 started folfox & avastin
10/14 chemo not working tumors growing
11/14 laparoscopic surgery to see how much seeding
12/14 unable to do surgery
1/15-8/15 folfiri
8/15- folfiri fail
10/15- Stivarga Stopped after 9 days due to side effects
10/15-- maybe clinical trial ? All conventional options seem to be exhausted
12/15--2/16 clinical trail failed
4/16 LONSURF

Sams wife
Posts: 749
Joined: Sun Jan 11, 2015 2:49 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Sams wife » Wed Oct 07, 2015 10:30 pm

JJ2212 wrote:
I wasn't much good for anything else. My dose has been lowered twice since then and it's a lot better.

Good luck.

Janie


Happy to hear that it's alot better!
Husband dx 1/13/15 St.2 CEA 7.1
Chemo/25rad 2/15 till 4/24/15
5FU/leucovorin
Surgery 6/8/2015 Stage IIa T3N0MX microscopic cancer left
Watching 4 lung spots
0/5 lymph nodes. Lap. APR
25% less 5FU/leucovorin 7/14/2015 x 26 CEA 3.4
25% more 5fu 9/2015
9/16/15 CEA 7.7
1/16/16 @ 9.2 during allergy?
3/16 New lung spot 4x4 mm
6/16 CEA 6.9 spot 5x5

Redwingfan3991
Posts: 25
Joined: Wed Jun 04, 2014 6:17 pm
Location: DTW

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Redwingfan3991 » Fri Oct 09, 2015 5:46 pm

The doctors don't feel that a reduction in dose would be beneficial for my mom due to her reactions to the chemo. He is pulling her off and trying to find a clinical trial.

I hope this chemo works for someone , unfortunately my mom wasn't one of them
Daughter/caregiver to mom aged 64
Kras mutant
4/14 diagnosed stage IV colon cancer mets to omentum
5/14 started folfox & avastin
10/14 chemo not working tumors growing
11/14 laparoscopic surgery to see how much seeding
12/14 unable to do surgery
1/15-8/15 folfiri
8/15- folfiri fail
10/15- Stivarga Stopped after 9 days due to side effects
10/15-- maybe clinical trial ? All conventional options seem to be exhausted
12/15--2/16 clinical trail failed
4/16 LONSURF

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jhocno197 » Sun Feb 28, 2016 9:30 pm

My husband has been taking this since 2/19/16. He took it the 19th & 20th, then skipped the 21st & 22nd, mostly because he had terrible nausea & vomiting, but also headache. He started back on the 23rd, and has been doing ok. It has raised his blood pressure just a little (from 102/79 to 112/85), and he now has a bloodshot eye, but none of the dreaded hand/foot stuff, thankfully. Also, it is altering his voice.
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17

jhocno197
Posts: 817
Joined: Mon May 11, 2015 9:33 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jhocno197 » Mon Mar 14, 2016 6:12 pm

My husband is still doing ok on this (taking 3 pills a day, but now on his break week). No major side effects still, just the weird voice. His CEA was taken 10 days after starting the Stivarga (8 doses, b/c he missed two days due to nausea), and his CEA dropped 150 points!!!
DH - dx Dec 2014, stage IV with bladder & peritoneal involvement - non-resectable
Colostomy
FOLFOX failed
FOLFIRI failed
Tumor actually distending pelvic skin
Not a candidate for last-ditch pelvic exenteration
Stivarga finally begun 2/19/16
Tumor growing/fungating
Lonsurf started 11/18/16
Died 3/10/17


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