STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

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RobDontGiveUp
Posts: 30
Joined: Mon Jul 06, 2015 9:17 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby RobDontGiveUp » Tue May 29, 2018 12:24 pm

bumping this thread after having read through all nine pages.

Two nodules in my lung grew to 2.5 cm on my latest scan and I have lymph node involvement almost everywhere.

Trying stivarga next. I'm guessing they don't make any changes to a drug like stivarga once it's out so I'm assuming I can expect the same side effects.

Anyone currently on this that would like to share their experience???
35 M dx Stage IVA colon cancer 7/15 w/
mets to retroperitoneal lymph nodes, suspected neck and para aortic as well
CAA 19-9 <3
12 rounds of FOLFOX W Vectibix 7/15
partial remission with shrinkage of tumor and ln's. Switch to XelodaAvastin 12/15
complete remission NED 6/16 Still on XelodaAvastin
Cancer returns in ln's Start Folfiri Vectibix 10/16
Shrinkage in ln's Folfiri vectibix 2/17
Tumor returns to cecum but ln's remain stable, right hemi 7/17
Folfiri Vectibix 8/17
lung mets 2 nods 2.5cm Stivarga 6/18

Maru1984
Posts: 1
Joined: Tue Jun 12, 2018 12:19 am
Facebook Username: Maruchi.gatica

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Maru1984 » Tue Jun 12, 2018 12:26 am

Hi everybody,
My boyfriend has just started on stivarga after 3 years of battling colon cancer with metastasis in his liver and his lungs. They got rid of his colon and liver tumors and some of his lungs tumors through ops but it is still there. He's been in A LOT of pain for months due to some liquid in his lungs so he has been through too much already. Reading about stivarga's side effects is scaring me big time. Hope it helps reduce his tumors and especially his pain. He's already lost almost 2 stone so I don't know how bad it's going to be when he loses the little appetite he still has.
Please send your love and good wishes. We need it. And hope everyone who is going through a similar situation gets well soon x
Maria

RobDontGiveUp
Posts: 30
Joined: Mon Jul 06, 2015 9:17 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby RobDontGiveUp » Wed Jun 27, 2018 7:33 pm

Just thought I would put in an update. First 10 days of my first cycle went pretty well. Pretty tired most days was really the only problem.

But on Day 11 I woke up with a rash over a good chuck of my body, mostly everywhere excepts my face and chest. Still took my 11th dose on that day, knowing I would see my Nurse practitioner later that day. She consulted with my oncologist and they stopped my treatment. Two days later rash is going away, and I have an appointment in two days when they'll decide if it's okay to resume treatment.
35 M dx Stage IVA colon cancer 7/15 w/
mets to retroperitoneal lymph nodes, suspected neck and para aortic as well
CAA 19-9 <3
12 rounds of FOLFOX W Vectibix 7/15
partial remission with shrinkage of tumor and ln's. Switch to XelodaAvastin 12/15
complete remission NED 6/16 Still on XelodaAvastin
Cancer returns in ln's Start Folfiri Vectibix 10/16
Shrinkage in ln's Folfiri vectibix 2/17
Tumor returns to cecum but ln's remain stable, right hemi 7/17
Folfiri Vectibix 8/17
lung mets 2 nods 2.5cm Stivarga 6/18

debb
Posts: 161
Joined: Sun Dec 21, 2008 9:03 pm
Location: NJ

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby debb » Wed Jun 27, 2018 9:49 pm

I was in a trial for Stivarga a few years ago, for use of Stivarga as a second line of treatment for mCRC. I had the exact same experience...11 days fine and then a whole body crazy rash. I was pulled off the trial, because it was about dosage and they couldn't lower my dosage or make any changes for their study. It lowered my CEA quickly, though. I would use it again , maybe at a lower dose, in the future.
FYI...it took about a week for the crazy rash to go away.
Stage 3C, Dx at 42, mom of 4
Colon resection 7/08
Folfox 9/08-2/09
Met to right ovary, both ovaries removed 7/10
HIPEC 8/10
VATS 7/12, 2 nodes, right lung
10/14 3 lung nodes, Stivarga clinical trial
3/15-7/15 Folfiri & avastin for lung things
Break! One year of freedom
8/16 Folfiri & avastin..lung things again
Break! 10 months of freedom
1/18 rib mets, radiation, folfiri & avastin


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