STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Tue Jan 27, 2015 7:05 pm

Still on this drug. This month CEA went from 45 to 77. Dr. is having me try alternating days with 3 pills and then 4 pills. I have never tried 4. We shall see.
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

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Tue Jan 27, 2015 10:22 pm

Karin, it's good to hear that you got good results with this drug, although your HFS experience sounds awful. I understand your sentiment of "it beats being dead" but it pisses me off that cancer lowers the bar that much. Wishing you the best on your clinical trial

drebay, i hope alternating 3 and 4 pill days will be tolerable for you. I know that the full dose is not easy. I only took 4 pills for 3 weeks and felt beyond drained by the end of the cycle. Also wishing you the best.

I've almost completed 2 cycles now and had a CT scan last week. I get the results on Thursday. Scanxiety has turned me into a foul-mood weepy bitch today, but I prefer that to being completely overwhelmed by anxiety. 36 hours to go before I know if Stivarga has started working for me or not...

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

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby lilacbreastedroller » Tue Jan 27, 2015 10:50 pm

JJ - maybe I"ll put this on a t-shirt. "Stivarga - beats being dead. And that's about it." Yup. My bar is pretty low. Your comment made me laugh!

DrEbay - no hand and foot yet? That's great if it hasn't hit you. Mine started o/a month three, and a googling confirmed that other takers of this stuff got same at around the same time. You're past that point so maybe you won't get it. hooray.

Good luck to both of you with this drug. I'm crossing my fingers about your scan, JJ. I forgot to mention that while the CT scan showed many mets, many were also calcified, or partially so, which means that my immune system was in fact chomping the tumors away, aided and abetted by Stivarga apparently, according to my onc. I haven't had a PET recently which shows the living vs dead tissue. I"m a rectal cancer patient, too. Maybe it works better for rectal cancer than regular colon?? (no idea)

best
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

jobasar
Posts: 429
Joined: Mon May 11, 2009 12:21 am
Facebook Username: Allie Genzer
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Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jobasar » Thu Jan 29, 2015 10:14 am

I was wondering how many are on Stivarga now as I see some stopped the drug and I was wondering who is on it now? How are you doing? Is it helping? I'll be starting it soon and I'm nervous.

Thanks,
Allie
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Thu Jan 29, 2015 4:25 pm

I just had my first good news in a while today. My CT scan done after 2 cycles of Stivarga shows that the lung met has gone from 1.5 cm to 1 cm. So the cancer is responding to the drug! Yeah!

Although the side-effects are not easy (fatigue, bleeding from APR wound, mucositis, light HFS), I know I can continue this for a few more cycles. Hopefully the lung met will continue to reduce and/or remain stable, then I can go for VATS or ablation.

Good luck Allie.

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

jobasar
Posts: 429
Joined: Mon May 11, 2009 12:21 am
Facebook Username: Allie Genzer
Contact:

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jobasar » Thu Jan 29, 2015 4:44 pm

Omg! That's awesome news Janie. I'm so happy for you. I'm scared but I hope it will work. Did you do the folfox, folfiri, avastin, erbitux, and zaltrap? Just curious.

Allie
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby JJ2212 » Fri Jan 30, 2015 12:51 pm

@Allie Chemo/rad, surgery and 12 cycles of FOLFOX. no FOLFIRI, AVastin, erbitux yet. I'm in a clinical trial that studies the effectiveness of Stivarga as a 2nd line treatment, instead of 3rd or 4th as it's currently approved for.
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

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Fri Feb 06, 2015 11:41 am

Macbreastedroller, no, not terribly bad hand and foot. Just got bumped up to 4. Not every day though. I do three on day, the four the next, and so on. My CEA went up 20 points, so we are trying this. Waiting a scan, but new insurance needs a Referral for the Oncologist, so that he can order the scan.
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

jobasar
Posts: 429
Joined: Mon May 11, 2009 12:21 am
Facebook Username: Allie Genzer
Contact:

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jobasar » Fri Feb 06, 2015 11:57 am

Drebay,

You've been on stivarga since September? So this is working for you? I have 4 spots in liver and a few bone mets. I'll be starting this soon. Any input will be great. Thanks.


Allie
dx. 12/24/08 w/stage 4 cc/1met to liver
C tumor removed on 01/02/09
Liver surg. on 04/09 clear margins
12 tx's chemo
9/09 NED
01/22/10/2 small lesions on rt. lobe liver.
Liver surgery 03/23/10/n
5/10, 8/10, 11/10, 5/11, 7/11, 9/11 NED

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Fri Feb 06, 2015 1:18 pm

Allie,

I have not had any real side effects with 3 pills a day. The first month, my feet cracked some, but no pain. The 2nd month, I was tired a lot. Have to use Sensodyne w/o mint to brush my teeth as anything else is painful. No biggie there Nothing much since then. Numbers went from 65.5 to 57.1 the first month and has been dropping slowly (to 54.1). Then a big rise this month. However, the rest of my family has been ill and that could have messed with my numbers this month. It sounds like I have been lucky to have stayed on this for so long without the severe hand/foot issues.
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

Dr. Toshka Avramova
Posts: 2
Joined: Tue Feb 17, 2015 1:27 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Dr. Toshka Avramova » Wed Feb 18, 2015 4:14 am

Dear Friends,

I am a dental doctor from Eastern Europe. My name is Toshka Avramova and I am battlling cancer from 2007. I had nine surgeries, much of my colon is removed, so is the bifurcation of my aorta, the splean, I have part of my liver removed and etc. I also suffered deep vein thrombosis several times so they had to thin out my veins in the left foot. Recently my colorectal cancer has shown itself again - this time in the liver and lungs - multiple metastasis. I have been travelling to Munich, Germany for the last couple of months for the FOLFIRI + Aflibercept: 4 mg/kg of aflibercept (intravenously) over 1 hour on day 1 every 2 weeks.

The treatment has failed (also i had undergone 12 rounds of Xeloda in my previous attempts to win the fight). The doctors stopped my FOLFIRI today after a CT scan showed that the metastasis are growing rapidly (even though that on the last CT scan 1 month ago they had shrunk). The doctor prescribed to me Regorafenib treatment. I am very fatigued and can barely walk, my hair is almost gone, and my hands and feet already hurt a lot - therefore i am not afraid of the side effects. I need to talk to someone because there are no such forum's (where I live) and we feel like outcasts.

Please, is anyone on this drug already? ( I am just starting to read all the comments here) Has it shown any results? Is there a case where someone got into remission with this drug?

Thank you for your help!

God bless,

Dr. Toshka Avramova

pfCml73183
Posts: 653
Joined: Sat Jun 22, 2013 7:49 pm
Facebook Username: Celeste Marie Comeau
Location: FL

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby pfCml73183 » Thu Feb 19, 2015 12:18 pm

Bumping this up
Wife and BF to Peter, 54
mCRC/IV/BRAF+
Erbitux and Urelumab trial @MSKCC 3/15
went home 5/8/15

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O Stoma Mia
Posts: 1363
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Location: Traveling abroad

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby O Stoma Mia » Mon Feb 23, 2015 8:01 pm

Dr. Toshka Avramova wrote:... I need to talk to someone because there are no such forum's (where I live) and we feel like outcasts...Please, is anyone on this drug already?...Dr. Toshka Avramova

Hello Dr. Avramova -

Welcome to the Forum. There are several women on this Forum who are also from Eastern Europe. Perhaps some of them will try to contact you if they see your post.

In addition to the current ONGOING discussion thread on Stivarga (Regorafenib), there are several other threads here that you might consider viewing. These threads also have reports on patient experiences with Stivarga.

regorafenib (Stivarga) work for anyone? - 15 posts
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=38034&start=30#p271301

Stivarga - 6 posts
http://coloncancersupport.colonclub.com/viewtopic.php?f=1&t=48906#p372110

====

As for cancer forums in Eastern Europe, there are several general ones, and a couple specific ones for colo-rectal cancer, but the problem is that these forums usually do not have many members and are not very active. So you are welcome to come here to ColonTalk anytime, since there are many members here who are willing to listen and to help.

Here is an example of a Russian forum on Rectal Cancer.

http://www.gastroenterologia.ru/topic.php?forum=25&topic=5

Here is a general cancer forum in Bulgaria:

http://clubs.dir.bg/postlist.php?Board=rak

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

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby drebay » Mon Mar 02, 2015 4:21 pm

Going off the Stivarga. CEA went from 77 to 121. 2 new Liver Mets and original ones have grown. Back on Irinotecan and 5FU next week. Dr. wanted me to start tomorrow, but I have had this head cold for a couple weeks.
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

rp1954
Posts: 1343
Joined: Mon Jun 13, 2011 1:13 am

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby rp1954 » Mon Mar 02, 2015 4:46 pm

If you're interested, what were the Sept-Oct CEA? It's hard to tell what happened your first few months. Thank you so much, for those who have to look at Stivarga.
watchful, active caregiver for stage IVb CC since early 2010. immuno"Chemo forever," for mCRC


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