STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Please feel free to read, share your thoughts, your stories and connect with others!
Sharona
Posts: 187
Joined: Sun May 19, 2013 3:06 am
Facebook Username: Sharon Rauch

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Sharona » Mon Aug 25, 2014 12:15 am

Nodak,
Sorry to hear that the Stivarga is not working for your DH. Thus far, my bp seems to remain low. I really wish someone would post some great results with this drug to give those of us on it some hope. I started back today, alternating two today, three tomorrrow. It has been so nice to have the week off and start feeling a bit normal again. We'll see what happens this time.
I do hope you are able to see someone before two months. I'm with Bev on trying to get elsewhere. Know that you are in my thoughts and prayers.
Hugs!
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch

Nodak
Posts: 44
Joined: Sun Jan 26, 2014 6:57 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Nodak » Mon Aug 25, 2014 6:37 pm

Thank you so much for the replies. You guys are so smart! I'm hoping to see better things about this drug for others too! I don't know if we could make it to NY or not but will bring that up to my DH. We thought of Chicago as I had read about the HIPEC but it sounds like that won't be an option with liver and lung involvement. Thanks again and I keep you all in my prayers.
02/13 Stage IV cc liver KRAS +
folfox,avastin
5/13 ben brain tx
6/13 DVT /PE
09/13 Liver res
11/13 recur Folfiri w/iranotecan
1/14 lung
6/14 CEA 203
7/14 CEA 998
8/14 CEA 1126 Stivarga H F synd
9/14 CEA 1706 Xeloda w/oxilaplatin 12/14 Fail

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Tue Sep 16, 2014 11:29 am

I am on Day 7. No hand/foot issues at all. I have had a slight headache, but that is somewhat normal for me (I have a shunt in my head for another issue. Yay me). Has anyone has side effects pop up after day 7?
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

Nodak
Posts: 44
Joined: Sun Jan 26, 2014 6:57 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Nodak » Wed Sep 17, 2014 8:54 pm

Just an update on my DH experience with Stivarga. He has been on and off of it for about a month. The longest stretch was 12 days but the Hand Foot syndrome got out of control, he ended up in the hospital for 5 days to get pain under control and get his feet healing so he can take a few steps to the bathroom and back to bed at least. He will not be going back on it now. He is taking a 3 week break before going back to the oncologist to see what is next. As Stivarga was one of the last options for him, we're hoping they can possibly go back to the first chemo again and give that a try. Otherwise we are thinking of contacting one of the Cancer Center of America sites to see if they have any other things he could try. It seems like chemo reacts difference with each person. He has not had much for side affects until the Stivarga or else they have just compounded and built up and are now appearing. But we are still glad he gave it a try! I hope you have better luck and it works for you!
02/13 Stage IV cc liver KRAS +
folfox,avastin
5/13 ben brain tx
6/13 DVT /PE
09/13 Liver res
11/13 recur Folfiri w/iranotecan
1/14 lung
6/14 CEA 203
7/14 CEA 998
8/14 CEA 1126 Stivarga H F synd
9/14 CEA 1706 Xeloda w/oxilaplatin 12/14 Fail

Lindaelizabeth
Posts: 15
Joined: Fri Jun 20, 2014 6:28 am
Contact:

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Lindaelizabeth » Mon Sep 22, 2014 6:36 pm

Hello all! Wanted to give you an update about my experiences with Stivarga in the hope it will help someone. Nodak, I am so sorry to hear of your DH's problem with Hand/Foot Syndrome. I will pray for you both. I can so relate. I took the four pill a day dose of Stivarga for two weeks. My feet became more and more sore but I thought it was manageable and I really wanted to reach the two week mark and a scheduled CEA test. First the good news. My CEA, always a good indicator for me, dropped from 17.6 to 9.6 Now, the bad news. On day 15, Stivarga seemingly attacked my body. My feet turned bright yellow with large blisters. I stopped taking Stivarga but over the next few days, side effects got worse. I had to crawl to the bathroom. Even slightly touching my feet to the side of the bathroom wall caused excruciating pain. I developed the worst rash I've ever seen all over my body. I remember one night itching every few seconds for what seemed like hours. I experienced cold chills under mounds of blankets. Sometimes, my face was hot with heat. I was vomiting. My fingers were sore. I had to take Oxycodone every four hours for a time just to rest in bed and sleep without excruciating foot pain. It took a week off the drug to gradually feel better (lotion with urea helped heal my feet) and an additional two weeks of recovery before my doctor told me to restart Stivarga at a lower, one pill a day dose. I didn't think I would want to take Stivarga ever again but my oncologist, impressed with the initial CEA results, asked me to try. After being off Stivarga for two weeks, my CEA rose from 9.6 to 13.4. During my third week of recovery, it may have risen even more. But here's more good news. After taking only one pill a day for two weeks, my CEA dropped to 13. I am thankful to God for this and glad to know Stivarga can work even on a one pill dose. I do have some pain from Hand/Foot Syndrome even on this dose so my oncologist is not raising it, at least for now. Blessings, love and prayers for all of you fighting cancer! If you'd like to hear more of my faith journey, please feel free to read my blog. The link is at the bottom of my signature. Love, Linda
Last edited by Lindaelizabeth on Mon Sep 22, 2014 6:47 pm, edited 2 times in total.
Dx stage 4 crc 2-11
Met to ovary. Surgery removed all visible
Folfox 6 mo
Ned
Mets to pelv 6-13
Surgery removed 90 %
Folfiri + Avastin 6 mo
Ned
Pelv rad
Mets to lungs, 5-14
Folfiri + Erbitux Fail
Stivarga 7-14
http://www.beyondstagefour.blogspot.com/

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Mon Sep 22, 2014 6:43 pm

It has been twelve days for me. 3 pills a day. So far, so good. I have a CEA test on the 30th. Good luck with 1 pill a day.
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

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby WifeOfMike » Mon Sep 22, 2014 6:55 pm

Please, PLEASE go back & find my prevention's stuff for Hand & tootsies early in this post for Stivarga .....
it will help anyone to perhaps ward off the blisters & help make them go away fast if you get them
The Soaking in room temperature water & creams HELPED tremendously.... as did the puffy socks & jell pads once the blisters subsided
This is the Only side effect to date with any drug hubby has been on that stopped him in his tracks for a week flat in bed

(((BIG HUG)))
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

Lindaelizabeth
Posts: 15
Joined: Fri Jun 20, 2014 6:28 am
Contact:

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Lindaelizabeth » Mon Sep 22, 2014 7:16 pm

Hi again, I read this entire thread before starting Stivarga as well as much on the internet. I tried to ward off Hand/Foot Syndrome with lotion, booties, etc, but when it attacked as I mentioned above, it was so intense and severe and the pain increased so suddenly that I realized my efforts in my case were not effective. It seems we are expected to be tolerant of some Hand/Foot Syndrome pain (my oncologist is continuing me one pill a day, despite the pain) but I hope my story will make people aware of how suddenly things can go from being manageable to destructive. Blessings!
Dx stage 4 crc 2-11
Met to ovary. Surgery removed all visible
Folfox 6 mo
Ned
Mets to pelv 6-13
Surgery removed 90 %
Folfiri + Avastin 6 mo
Ned
Pelv rad
Mets to lungs, 5-14
Folfiri + Erbitux Fail
Stivarga 7-14
http://www.beyondstagefour.blogspot.com/

WifeOfMike
Posts: 1495
Joined: Thu Dec 20, 2012 9:53 pm
Facebook Username: https://www.facebook.com/vbass123
Location: San Diego, California

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby WifeOfMike » Mon Sep 22, 2014 7:25 pm

My hubby's came on like a freight train too on I believe week two- barely pink to nasty grade 3 blisters in a couple of days on 4 pills
They stopped all drug until it cleared up- which was standard per drug manufacturer/ our ONC.
He resumed on 3 pills without side effects- but soaked 3 times daily, creams continuously

I hope this drug does well for all of you!!
He was able to go 4 months, before progression
BUTT- he has aggressive/ resistant mets- tops has been 6 months, two with 4 months... now on clinical trials

take care!
Vicki
Bad Ass WIFE
Hubs: CRC IVA,T3, N0, M1A
Resect/LN Mets 10/12
Folfox4/Avastin 11/12-5/13
Folfiri/Erbitux 6/13-10/13
Stivarga 12/13-4/14
Trial 4/14-/14
Trial 8/14-11/14
HOME Hospice 11/17/14
Guardian Angel 1/1/15
Cost of HOPE? PRICELESS

Lindaelizabeth
Posts: 15
Joined: Fri Jun 20, 2014 6:28 am
Contact:

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Lindaelizabeth » Mon Sep 22, 2014 7:48 pm

The itchiness of the rash that took over my body (as well as the combination of other side effects) was almost as bad as the Hand/Foot syndrome for a time. The doctor said to take Benadryl but it couldn't touch it. Haven't seen much talk about the rash online but in my case, it came on severely just like the Hand/Foot Syndrome. I still had signs of it and discoloration two weeks after stopping Stivarga. It did go away, though and no lingering effects. It's very clear people's reactions are different. This is a powerful drug.
Dx stage 4 crc 2-11
Met to ovary. Surgery removed all visible
Folfox 6 mo
Ned
Mets to pelv 6-13
Surgery removed 90 %
Folfiri + Avastin 6 mo
Ned
Pelv rad
Mets to lungs, 5-14
Folfiri + Erbitux Fail
Stivarga 7-14
http://www.beyondstagefour.blogspot.com/

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Sun Dec 14, 2014 11:18 am

Any updates on your experiences with Stivarga?

I've been on regorafenib for 18 days at 4 pills per day, and I am wiped out! All I want to do is sleep, sleep and sleep some more. Also, my mouth is so sensitive that I'm finding it hard to find things to eat. I can no longer use toothpaste to brush my teeth because of the mint flavour. Normally seasoned food now tastes like the spiciest thing I ever tasted. My mouth is constantly on fire. I just started using magic mouth wash yesterday, so hopefully that'll help.

I get tested weekly as part of the clinical trial that I'm on, and this past week my bilirubin shot out of the normal range (went from 5 to 31). The onc decided on the wait and see approach, since i'm close to my week off. He didn't mention anything I can do to help with is, but it's got me worried since my liver has never been an issue and I wouldn't want any permanent damage.

I've read reports that seem to indicate that the first cycle is the worst in terms of side effects. Has this been your experience?

I guess i'm hopeful for some good news. While the side effects are "manageable' so far, i'm not feeling any better than the 6 months i was of Folfox.

Thanks for your input.

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

Sharona
Posts: 187
Joined: Sun May 19, 2013 3:06 am
Facebook Username: Sharon Rauch

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Sharona » Mon Dec 15, 2014 3:32 am

Stirvarga and I did not get along either. Like you, I was wiped out and never made it to full dosage.
So thankful when I heard the words, throw the rest out. I searched for some positive feedback from someone using this drug, but...
Hopefully, it will help someone someday.
Sharon
Dx CRC mets to lung, brain
Craniotomy 11/12
CyberKnife 12/12
colostomy
FOLFIRI, FOLFIRI, avastin, Zaltrap
Stivarga
Multiple brain mets.
WBR and pallative pelvic radiation
Hospice 1/21/15
http://www.caringbridge.org/visit/sharonrauch

tyrebunny
Posts: 4
Joined: Wed Jun 04, 2014 7:27 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby tyrebunny » Mon Dec 15, 2014 6:33 pm

My husband started this drug on Dec. 7. On the 10th, he was at the ER because he had stroke level blood pressure.

BrianPound
Posts: 1
Joined: Tue Dec 30, 2014 4:03 am
Facebook Username: shakespeare

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby BrianPound » Tue Dec 30, 2014 4:52 am

Hi friends

Regards of the season.

I am on Stivarga after diagnosed 9 May 2011 with stage 4 primary bowel cancer, and after ops on bowel, liver and lungs, and usual precursor lines chemo.

Started on full dose but after a couple of months where at start it had seemed most manageable of my chemo treatments, I had start of painful colitis so had a colonoscopy which gave me relief . Had a break and a scan which showed slow growth still, and now just had a month on 3 tablets which proved more manageable. Will have one more months treatment on 3 pills and my oncologist who has been great is encouraging me to then have a 2 month break before a family trip to Paris in Easter, and then if I can get my head around it, think about coming off all chemo treatment to maximize quality of life. Stivarga do not advertise it, or hide it I guess, but there is no evidence; that for those users like me that have exhausted the standard therapies for their illness; that it is considered to be potentially curative in such situations.

So each person like me has to keep making a personal call with help from their oncologist etc and loved ones about balancing quality and quantity of life in their circumstances as they live with each treatment.
Cheers Brian

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Tue Jan 27, 2015 6:13 pm

HI, all. I had good results with Stivarga. My onc says I"m his only patient who seems to have done well on the drug. My CEA dropped from 500 to 90 after three months of taking it. But my scans showed mixed results, some growth and some shrinkage. I was supposed to be dead by Christmas... and I"m not. So I would say that's a positive result. I took three pills a day for three weeks and then a week break. right now I"m off the drug because I'm in a clinical trial.

in my first month of taking it, I got a massive full body rash. Really freaked me out. This was determined to be a "drug rash" caused by Stivarga - by onc and a dermatologist. Onc says the rash is a good thing, and indicates a good response. Someone else in this thread also reported getting a rash - would appreciate some follow up info in case Stivarga also gave her good results. After a couple of weeks the rash went away. I take my pills every day around 8, and now, I get this strange temporary rash and skin flush every day in the afternoons around 2 or 3. Usually on my face and chest and it goes away in an hour or so. The area around my eyes is always white and not affected. I look like a raccoon.

I did get "hand and foot", a/k/a chemical burns, kicked in around month three? that is such a joy. I took Xeloda for nearly a year and never got it, although Xeloda really didn't work for me. I'm still mapping out the HF cycle, seems the first week burns and I can't function at all. Once the blisters crust over (around day 7) hand functionality is restored and there is little to no pain. It affects the balls of my feet but they don't hurt as much as my hands so I can actually walk. Well, shuffle. same with hands, once I Have hard blisters, I can walk as normal and am no longer shuffling. The whole cycle lasts a month - a week of burning and shuffling, and 2-3 weeks of reduced to full functionality. Ideally, you get all of your blistering at the same time - both feet are on the same cycle. Last cycle, one foot got it and the other lagged behind, so one foot was healed and I could walk and the other was still sensitive! To treat them, I used a combination of udder cream and aloe vera juice/gel. No lie! Whole foods sells AV juice as laxative, I think. The lotions with AV all had alcohol in them, which is a drying agent and an irritant so that would be the worst thing for HFS. The laxative had aloe vera gel and a little bit of citric acid. So at first I'd pour it in a pan and soak my hands in it, or smear it on my hands and put on gloves. The udder cream did more or less the same thing but when it got really bad, the aloe vera juice gel was the best. You're not supposed to take hot baths when you have HFS, but it's wintertime and I was always cold so to heck with it; I bathed with my feet on the all and my hands in the air. I guess the steam from the tub was bad, but you know? Small price to pay for a creature comfort in the cold of winter! After the blisters harden, they peel off; I have to use nail scissors to cut off the flaps of skin. Very disgusting and gross but I do it. Then, the burning starts all over again. Argh. But... it lasts about seven days and the blisters harden again, and stop hurting. It's cyclical.

Other side effects - I was always strangely cold, my blood pressure was elevated, and my mouth had this weird thrushy type problem which wasn't thrush. Other people in this thread reported this same side effect. My tongue would get blistery things on the sides, which would make tongue wider. So I"d accidentally bite it. Wow! It was like pressing a hole punch into my tongue. OMG. and I had the same reaction to spicy food and toothpaste as well. very very sensitive.

Three weeks after Stivarga, all of the above side effects are gone and all is well.

Not my favorite chemo drugs, but as long as the side effects are not permanent (which they seem not to be), I will tolerate it. Beats being dead!

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


Return to “Colon Talk - Colon cancer (colorectal cancer) support forum”



Who is online

Users browsing this forum: Daniellabella, Majestic-12 [Bot], StDrogo, Yahoo [Bot] and 47 guests