Stivarga questions

Please feel free to read, share your thoughts, your stories and connect with others!
ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Stivarga questions

Postby ebv60 » Mon Jun 06, 2016 7:32 pm

Things not looking for DW ,scan 5/24 more growth with tumors..Avastin did NOT help..Tomorrow stating Stivarga ( 4 pills)


Questions: was Stivarga worth doing??? did you have Good results ??? Side effects?? How long were you one this Med?? Thanks
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

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

Re: Stivarga questions

Postby JJ2212 » Mon Jun 06, 2016 8:36 pm

I'm sure you know that, as with any other chemo, not everone responds the same to Stivarga. But I can give you my point of view as someone who responds well to it.

4 pills per day was too toxic for me. I lasted one cycle on that dosage and my onc chose to reduce me to 3 pills per day for the next 2 cycles. The side effects were not that "medically" serious but my quality of life suffered. Hand/foot syndrome, mouth sores, mouth sensitivity, hair loss, extreme fatigue, diarrhea and nose bleeds. The side effects lessened a bit on 3 pills per day but the HFS was still affecting me quite a bit, so my dosage was reduced again to 2 pills.

I've been on Stivarga for a total of 19 cycles, i.e. a year and a half. My lung lesion reduced by more than half and has been stable at 7mm for a year now. I also had some suspicious lymph nodes in my chest that have now appear normal on scans.

Clearly Stivarga has been worth it for me, but I know that it not the case for everyone. The unofficial stats from the trial I'm on show a response rate of less than 20%. I seem to be one of the lucky ones.

Good luck to your DW. 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

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

Re: Stivarga questions

Postby jhocno197 » Mon Jun 06, 2016 10:45 pm

Stivarga has been amazing for my husband so far. 4 pills a day is too much, but 3 a day has been ok. It has actually been easier on him than either folfox or folfiri. His tumor is located in such a way that you can feel it - I can tell that it has shrunk since starting & his CEA is down a lot. When they tried him on 4 pills, he ended up having to take a 12 day break instead of the 7 day break as prescribed; you could feel tumor growth happening (his seems to be unusually fast-growing); it started shrinking again after starting back. It is not going to cure him, but it is most definitely reigning in what would otherwise be crazy tumor growth.

He's been on it since February 19th.
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

Mcgloj
Posts: 3
Joined: Tue Jun 07, 2016 2:13 pm

Re: Stivarga questions

Postby Mcgloj » Tue Jun 07, 2016 8:06 pm

New user to this forum, so Still need to show my history.

Today I found out my cancer has returned from a surgery in 11/13 then 6mt round of folfox. They found an infected lymph node and I've been asked to participate in a study where they switch the order of medicines by using stivarga 1st. My doctor feels I could go either way. Stivarga or Folfiri. I think I'm leaning toward folfiri, but thought I would post my predicament.

Sorry if terms are not correct...just trying to figure this out.

Thanks for taking the time to read...

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

Re: Stivarga questions

Postby JJ2212 » Wed Jun 08, 2016 12:08 pm

Mcgloj wrote:Today I found out my cancer has returned from a surgery in 11/13 then 6mt round of folfox. They found an infected lymph node and I've been asked to participate in a study where they switch the order of medicines by using stivarga 1st. My doctor feels I could go either way. Stivarga or Folfiri. I think I'm leaning toward folfiri, but thought I would post my predicament.


Hi Mcgloj,

I'm sorry that you're in this dilemma. The clinical trial that I'm in sounds like the one being offered to you. It's a tough decision to make.

I was in a daze from learning that I had new mets after only 3 months of finishing my 12 rounds of folfox when my onc offered this trial. I had no clue which way to go, but my onc seemed confident that I didn't have much to lose by trying Stivarga first. Maybe he was pushing to get enrollment on his study? I don't know. But my thought process at the time was that I would try it for a few months and if it didn't work, I'd move on to folfiri.

Luckily for me it has been working well, but I still sometimes question my decision, even if the results are good. Should I have pushed to get an ablation of my lung met? Would I now be ned instead of stable? It's never easy when you veer off the standard of care path.

Sorry, I'm definitely not helping with your predicament, but I just wanted to let you know that I've been there and understand. PM me anytime if you have questions regarding the trial or Stivarga.

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

Mcgloj
Posts: 3
Joined: Tue Jun 07, 2016 2:13 pm

Re: Stivarga questions

Postby Mcgloj » Wed Jun 08, 2016 3:24 pm

Janie,

Thank you for reading and replying. Its very helpful to know other people understand. It does sound like the same trial. I also got the impression starting here wouldn't be too harmful.

I'm happy it's working for you. I feel once you make the decision, you need to run with it.

Don't know how to PM yet and thought this question might help others.

For the side effects, do you have them all the time? I felt like my first round I was pretty good except for a couple days.

Thanks
Jim

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Stivarga questions

Postby ebv60 » Wed Jun 08, 2016 9:42 pm

Second day for DW on Stivarga ..no real problems but early into the treatment..will post how she does ..Question..how long were you on stivarga before they did a scan???
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

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

Re: Stivarga questions

Postby JJ2212 » Thu Jun 09, 2016 9:44 am

Mcgloj wrote:For the side effects, do you have them all the time? I felt like my first round I was pretty good except for a couple days.


For me, fatigue starts right away and gets progressively worse until midway through my off week. Most of the other side effects start showing up at around day 10, in varying degrees. Oddly, hand/foot syndrome pain can show up anytime and lasts usually 1-3 days. Overall, my last week of treatment isn't great, but it's not anywhere as bad as when I was on folfox. Honestly, other than the fatigue, the side effects are more annoyances than anything else.

ebv60 wrote:Question..how long were you on stivarga before they did a scan???


I get scanned every 2 months, which is the protocol for the clinical trial. So my first scan was 2 months in and showed a little decrease in size of my lung lesion. The next 2 scans showed more regression and the following ones have been stable.

Good luck on whatever you decide Mcgloj. And positive vibes being sent your DW's way ebv60.
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

ebv60
Posts: 45
Joined: Thu Jan 24, 2013 1:22 pm

Re: Stivarga questions

Postby ebv60 » Tue Jun 14, 2016 5:00 pm

My wife is into her second week now on Striarga (4 pills)...Not bad side effect .tried ...have blood work done today ok ..blood pressure in up a little but not bad.. diarrhea but not worse then the other chemo. Question; have read the side effect lesson some after the first week?? has anyone found this to be true????
to DW 6/12 stage 4
6/12 colon resection, liver Mets
Folfox & Folfiri till 4/13
liver resection Mayo 5/13 Clear margins
mop up chemo
NED till 9/14
cancer complete hysterectomy,
CEA climbing 12/14
1/15 scans, tumors return
1/15 Mayo for surgery; need shrinkage before surgery
Folfiri w Erbitux
break over Christmas, rash from Erbitux
1/16 scan tumors growing, liver, lungs, lymph nodes involvement
Folfiri w Avastin 1/16
Stivarga 6/16
lonsurf 1/17
Scan 6/17 tumors growing.
At peace 7/17

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

Re: Stivarga questions

Postby jhocno197 » Tue Jun 14, 2016 11:53 pm

No, side effects for my husband get worse after the first week.
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


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



Who is online

Users browsing this forum: Google [Bot] and 156 guests