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: 191
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.
2008, Stage 3C, age 42, mom of 4
Folfox 9/08-2/09
Met to right ovary, both removed 7/10
HIPEC 8/10
VATS 7/12, right lung
10/14 Stivarga clinical trial
3/15-7/15 Folfiri & avastin
8/16 Folfiri & avastin
Break! 10 months of freedom
1/18 - 4/23 many Folfiri & Avastin
6/23 Clinical trial REGN7075. Progression
8/23 radiation to femurs and L4
9/23 rechallenged Folfox. Allergic reaction at 4th infusion
11/23 will start Bot/Bal

winder50
Posts: 2
Joined: Sun May 19, 2019 9:51 am
Facebook Username: Debra Bates Wright

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby winder50 » Sat Jun 01, 2019 7:48 pm

HI, all, just to give a little info as to my husband's experience. He has stage 4 colon cancer metastazing to abdomen. Avastin worked for a few months, but then didn't, and cancer is growing aggressively.
The Onc put him on Stivarga. We were both wary of it, because of all the side effects we have read about, but he wanted to try it. He is an outdoorsman, and doesn't want to give up. The chemo at least kept him going, but when he was off it a few weeks, he became very weak.
He has been on Stivarga for two weeks, starting his third. So far he hasn't had the bad foot and hand problems, which is good because he got neuropathy during the first round of chemo. He is vvery tired, and has almost lost his voice. He needs very sensitive toothpaste, and has no desire to eat, so his dr has ordered med to augment his appetite. He has lost 14 pounds since May, that he didn't have to lose.
He also has bad night sweats, but that may be from his body fighting cancer.

Male, 73.
Diagnosed August, 2016 with Colon Cancer.
Underwent surgery, took most of the tumor in right
side of his colon, and nearby lymph nodes.
Adjuviant Chemo (not sure what) 11/16-6/2017
8/18 -found out cancer had recurred, and had spread to
stomach.
Had colostomy 9/19
Chemo Avastin 8/2018-4/2019
Started Stivarga 5/15/2019
Dh, 73 , diagnosed with SigmoidColon Cancer, 8/2016
Surgery, partial colostomy, 9-2016
Chemo, 11/2016-5/2017
Recurrence - Stage4 - 8/2018
Colostomy - 8/2018
chemo -Avastin -8/2018-4/2019
Started Stivarga - 5/15/2019

sivadyma
Posts: 2
Joined: Thu Mar 14, 2019 10:58 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby sivadyma » Sun Jun 30, 2019 4:10 pm

Thanks for your post, Debra. I was looking for someone with experience with Stivarga. Your husband’s side effects sound similar to my what my husband is experiencing. He’s been on it for 2 months and his oncologist is having him start a 3rd cycle. How is your husband doing now?

If there is anyone else on Stivarga, I’m curious how long you’ve been on it and how it is going for you?
Caregiver to Husband, current age 48
2011-2012: Stage IIIb, radiation, Ostomy surgery, Folfox
7/18 Recurrence with metastasis
8/18 Radiation to shoulder
9/18 - 2/19 Folfiri until it failed
Switched treatment to MD Anderson
4/19 PET showed spread to hip bone
5/19 Started Stivarga
8/27/19 CT showed more growth stopped Stivarga
9/2019 Palliative radiation for pain
10/2019 Tried Lonsurf-made him too sick
01/2020 Started Hospice
03/01/2020 My sweet husband went to be with Jesus

winder50
Posts: 2
Joined: Sun May 19, 2019 9:51 am
Facebook Username: Debra Bates Wright

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby winder50 » Sat Jul 27, 2019 10:15 pm

He is on his third cycle. He has trouble eating, and has pretty much lost his voice. We were referred to a voice therapy practice, and they said his voice problem is because he has lost mass, including in his vocal cords, and they are going to do a procedure to plump up his vocal cords, so he can talk. He is still in pain, has constant headaches, can't settle down, but he is still up and walking. He is very sensitive to smells now, and is having trouble making himself eat, but he is trying, and we have gone out a few times the last week. He can eat bland things, like oatmeal, grits (we're southern, lol), and cereal. He also has a few Glucerna drinks a day, so hopefully will not lose too much more weight.
Dh, 73 , diagnosed with SigmoidColon Cancer, 8/2016
Surgery, partial colostomy, 9-2016
Chemo, 11/2016-5/2017
Recurrence - Stage4 - 8/2018
Colostomy - 8/2018
chemo -Avastin -8/2018-4/2019
Started Stivarga - 5/15/2019

sivadyma
Posts: 2
Joined: Thu Mar 14, 2019 10:58 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby sivadyma » Mon Jul 29, 2019 12:34 pm

Everything you are describing is exactly what my husband is experiencing. He just finished up his third cycle. He will start the 4th on Thursday if the doctor tells him his blood work is okay for it when we go on Thursday. His voice did the same thing and he was referred to a specialist, but then it got a little better on the 3rd cycle so he didn’t go to the specialist. Whenever he has his off week, his voice comes back. He also drinks protein shakes to keep up with lack of eating. He is extremely fatigued on this Chemo.

Of course, I want to know how long they will have him on this. After reading through this topic, it doesn’t seem like many stay on it a long time.
Caregiver to Husband, current age 48
2011-2012: Stage IIIb, radiation, Ostomy surgery, Folfox
7/18 Recurrence with metastasis
8/18 Radiation to shoulder
9/18 - 2/19 Folfiri until it failed
Switched treatment to MD Anderson
4/19 PET showed spread to hip bone
5/19 Started Stivarga
8/27/19 CT showed more growth stopped Stivarga
9/2019 Palliative radiation for pain
10/2019 Tried Lonsurf-made him too sick
01/2020 Started Hospice
03/01/2020 My sweet husband went to be with Jesus

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jep » Thu Jul 16, 2020 6:36 pm

Hey everyone . . . just wanted to chime in here, as my husband starts Stivarga (full dose) this weekend . . . the goal is simply to shrink down this para aortic lymph node that is inoperable, but wreaking havoc on his body . . . I will definitely post any thoughts or observations that we have, but I do have 2 quick questions for those of you with experience:

1. Should he take his dose at night (before bed)? I noticed a few people suggesting that on this thread . . . any thoughts either way?
2. The paperwork from the doc says not to apply anything to a rash, but to call the doctor if you develop a rash. Several members posted suggestions for creams, etc., that worked for them (or their loved ones). Any suggestions??
Thank you all :))
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

Lee
Posts: 6207
Joined: Sun Apr 16, 2006 4:09 pm

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby Lee » Thu Jul 16, 2020 6:49 pm

jep wrote:Hey everyone . . . just wanted to chime in here, as my husband starts Stivarga (full dose) this weekend . . . the goal is simply to shrink down this para aortic lymph node that is inoperable, but wreaking havoc on his body . . . I will definitely post any thoughts or observations that we have, but I do have 2 quick questions for those of you with experience:

1. Should he take his dose at night (before bed)? I noticed a few people suggesting that on this thread . . . any thoughts either way?
2. The paperwork from the doc says not to apply anything to a rash, but to call the doctor if you develop a rash. Several members posted suggestions for creams, etc., that worked for them (or their loved ones). Any suggestions??
Thank you all :))
jep


If you do not get much of a response, you might want to start a new thread with your questions. This threat has been around for a few years, it may not get a lot of attention.

Good luck,

Lee
rectal cancer - April 2004
46 yrs old at diagnoses
stage III C - 6/13 lymph positive
radiation - 6 weeks
surgery - August 2004/hernia repair 2014
permanent colostomy
chemo - FOLFOX
NED - 16 years and counting!

jep
Posts: 260
Joined: Sun Jun 11, 2017 7:45 pm
Location: New England, USA

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby jep » Thu Jul 16, 2020 6:57 pm

Thanks Lee! Probably a good idea . . .
jep
Stage IV CC 5/16/17
Loc: recto-sig
Type: Adenocarcinoma
Size: 7.4 cm
Grade: G3
TNM: T3N2M1
LNs: 8/20
BL CEA: .9
LVI: present
Perineural invasion: present
LAR margins: clear (w/in microns)
Folfox (8/17-1/18)
Scope 6/18 - CLEAR! - 2 polyps
PET 10/17/18: 3 pos LNs
Irino + Vecti (11/18)
CEA: 1.7 (2/19)
Xel + rad (5/19)
Surgery: 8/21/19 (aborted)
P1 Trial 10/19 - 12/19
Bypass 12/6/19
Folfox + vecti 1/2/19 - 4/3/20
Kid Fail 5/1/20
Folfiri + Avastin 5/20 - 6/20
bypass 6/29/20
Stivarga 7/18/20 -
Home 9/10/20

mrcytech
Posts: 71
Joined: Mon Dec 08, 2014 7:39 am
Location: Massachusetts

Re: STIVARGA (Regorafenib) - ONGOING PATIENT EXPERIENCES

Postby mrcytech » Thu Aug 20, 2020 7:15 am

Hi all,

I've been on Stivarga since January. My oncologist started me on 3 pills (120mg) per day for 3 weeks on 1 week off. I started to get alot of the side effects that you all have mentioned, so he cut me down to 2 pills (80mg) per day. Since the reduction in dose, the mouth sores have gone to just sensitivity around my tongue, but I'm still dealing with exhaustion and lack of appetite. My last CT shows stability with the cancer, but my blood test shows that my CEA went from 31 (in June) to 68(in August) :roll: .
Dx 12/12 Stage 3B sigmoid crc T3N1M0
2/13 resection w/ temp Iliost, port insert. Reversal 5/13.
6/13-12/13 Folfox 12 sessions. Oxi stopped @ session 4.
9/14 CT shows 1.2CM nodule on upper lobe of left lung.
3/15 wedge resection left lung (stage 1A lung cancer) no chemo.
9/16 CT/PET shows node activity (SUV 10.6), CEA extremely elevated. Mets from colon. Upgraded to stage 4.
11/16-4/17 Begin Folfiri w/Avastin 8 sessions.
4/19-9/19 endobronchial activity lung mets.
1/20 Stivarga (palliative).


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