Vectibix side effects

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AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Vectibix side effects

Postby AlexandraZ » Fri Sep 13, 2019 5:24 pm

Hi all,

I was wondering how many of you have experience with Vectibix and what side effects you all have had.

My poor boyfriend got his 10th Vectibix infusion (it's called Panitumumab over here and it may or may not be the exact same thing, but it's definitely an EGFR blocker) about a week ago and he has had the wildest side effects yet. In addition to a rash/pimples on his face, back, chest, stomach, arms and legs, he has some kind of a rash in his beard. It wakes him up several times a night because it's constantly oozing (for lack of a less gross word). It's been 10 days since his infusion! He also has a fungal infection in his mouth and his lips are all swollen and wonky. We called the hospital and they weren't worried, but he is miserable, and understandably so. He googled a bit this evening and found that some of the skin problems can also be a result of using steroid creams for too long, so he'll try to hold off on that and see if it helps.

Anyone have similar experiences? He just completed his 12th cycle of FOLFIRI, which was also his 10th cycle of Vectibix. Could it just be a cumulative skin toxicity? I suppose he has been on a pretty strong chemo cocktail for a long time. Anything that helped any of you?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Rock_Robster
Posts: 341
Joined: Thu Oct 25, 2018 5:27 am
Location: Melbourne, Australia

Re: Vectibix side effects

Postby Rock_Robster » Fri Sep 13, 2019 6:02 pm

Hi Alexandra, sorry to hear about the side effects. I haven’t had Vectibix personally but I know in a lot of cases they prescribe an antibiotic - usually doxycycline - for the rash with very good effect. May want to ask the doc about this.

Others will no doubt also have suggestions for topical relief.

The good news is that the presence of the rash is strongly correlated with a positive response to the treatment, so there’s something to hang onto there!

Good luck,
Rob
Male 37; Melbourne, Australia
10/2018 Dx 3.5cm RC adenocarcinoma, 12cm from AV
Mod diff, EMVI+ LVI+ PNI-
3 LN; 4 liver mets, resectable
pT3pN1aM1a; Stage IVa. MSS, NRAS (G13R)
CEA: Oct-18= 12; Nov-18= 14, Mar-19= 2.4, Aug-19 <2.0
11/18 - FOLFOX x 6
3/19 - Liver resection
4-5/19 - 25 x pelvic radiation; complete met. response, TRG 3
07/19 - ULAR (robot), temp ileo, 1/27 LN
08/19 - Missed liver spot
08-11/19 - FOLFOX x 1, FOLFOXIRI x 1, FOLFIRI x 5
12/19 - Planned liver resection #2 & stoma reversal

MetastaticEquilibria
Posts: 41
Joined: Wed Jul 10, 2019 4:42 am
Location: Japan

Re: Vectibix side effects

Postby MetastaticEquilibria » Fri Sep 13, 2019 6:20 pm

I’ve been on Vectibix. (Panitumumab is the generic name for it — it’s the same stuff.)

I don’t have a beard, but my scalp drove me crazy. Would wake up every morning with blood on the pillow. Plus face, chest, back, stomach, arms, legs... Maybe the worst was the skin around the toenails getting inflamed and being dug into by the nails. Needed a cane to walk at times.

Amusingly, areas where radiation had gone through my skin were unaffected. So I had these patches of clear, permanently sunburned skin surrounded by rash.

As Rock_Robster says, antibiotics can help.

In my case, I had to stop antibiotics due to liver issues. I also stopped using steroid creams for the same reason. I found regular skin moisturizer helped somewhat to reduce the bleeding and pain and itchiness. Also, diphenhydramine cream helped with the itching.
M55 Stage 4 (Japan)
12/16 Tumor rectal/sigmoid jct
1/17 Resect stage 2 T3N0M0+LVI
2-6/17 UFT+UZEL
7/17 Recurr.+2 liver mets stage 4
7-10/17 FOLFOX+Vectibix
11-12/17 FOLFOX+pelvic rad (x/gamma 60 Gy)
1-7/18 FOLFOX+Vectibix
8-9/18 Liver rad (protons 73 GyE)
10/18-12/18 Xeloda+Avastin
2/19 New liver met
3/19 Liver rad (protons 66 GyE)
4/19 3 lung mets
4-6/19 Vectibix
7/19-now FOLFIRI+Cyramza
8/19 Lung mets stable
CEA 1.4-223 now 12.6
CA19-9 2.8-105 now 65
RAS wild MSS MET+func TP53-func
UGT1A1*28 homo

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Sat Sep 14, 2019 4:40 pm

Thanks, both of you! My boyfriend has been on antibiotics since the beginning. I think here in Denmark they try to prevent side effects rather than treat them.

I called the hospital again today since his lips are so swollen. The nurse said she thinks it's just a cumulative effect of all the poison over the past 6 months, and his body wants a break. Jesper agrees! Looks like we'll get a break now. The new scan showed stable disease in the lungs and shrinkage in the liver. So we are happy! Maybe he can even qualify for resection now that his biggest tumor is 2cm large. Fingers crossed.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Vectibix side effects

Postby Gravelyguy » Sat Sep 14, 2019 5:27 pm

I sure hope he can get that liver resection! I had 4 round of Folfox with Vectibix and has all of the symptoms your boyfriend has. It was probably the low point of my treatment. He is an amazing trooper to make it through 10 rounds!

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Mon Sep 16, 2019 12:48 am

Gravelyguy wrote:I sure hope he can get that liver resection! I had 4 round of Folfox with Vectibix and has all of the symptoms your boyfriend has. It was probably the low point of my treatment. He is an amazing trooper to make it through 10 rounds!

Dave


Thank you! I'm glad to hear others agree that this cocktail is a b*tch. :) He's sloooowly recovering - good thing a break was scheduled for now, otherwise he'd be due for his next infusion in a few days. This last round has definitely been one of the worst.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Fri Sep 27, 2019 12:52 pm

Is there anyone whose Vectibix side effects took forever to clear up once getting off it? Jesper had his last FOLFIRI + Vectibix over three weeks ago, and his skin has never been worse. He has massive red rings around his eyes and the skin is constantly leaking/oozing some kind of pus or lymphatic fluid. The skin around his mouth is the same. So strange. Poor guy! In the mornings he can't open his eyes because they are glued shut from all the crusty bits. (Sorry if the details are yucky. But hey, cancer is yucky.) His oncologist says it should heal on its own, but it's been three weeks! No improvement. It doesn't appear to be a fungal infection or anything that requires a specific treatment.

Anyone who has had similar side effects?
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Vectibix side effects

Postby Gravelyguy » Fri Sep 27, 2019 2:02 pm

My rash lasted quite a while after finishing that part of my chemo. Give it another week or two and he will start feeling and looking better. I had mouth sores for about 2 months after, but can't quite remember how long until the skin rash started going away.

Dave
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

User avatar
ginabeewell
Posts: 314
Joined: Wed Oct 24, 2018 10:30 am

Re: Vectibix side effects

Postby ginabeewell » Fri Sep 27, 2019 3:39 pm

AlexandraZ wrote:Is there anyone whose Vectibix side effects took forever to clear up once getting off it? Jesper had his last FOLFIRI + Vectibix over three weeks ago, and his skin has never been worse. He has massive red rings around his eyes and the skin is constantly leaking/oozing some kind of pus or lymphatic fluid. The skin around his mouth is the same. So strange. Poor guy! In the mornings he can't open his eyes because they are glued shut from all the crusty bits. (Sorry if the details are yucky. But hey, cancer is yucky.) His oncologist says it should heal on its own, but it's been three weeks! No improvement. It doesn't appear to be a fungal infection or anything that requires a specific treatment.

Anyone who has had similar side effects?


It took six or seven weeks off chemo before my skin was approaching normal post-Vectibix. I would think he would start to see improvement in another week or two, but it does take a LONG time to get the impact of the stuff out of your system.

It is truly the worst drug, I feel for him. My latest side effect is rash that has broken out on the INSIDE of my eyelids. It's like, seriously??
45 year old mom of twins (8) and lucky stepmom of 14 and 16 year olds
9/17/18 DX stage 4 CRC w inoperable liver mets
9/20/18 CEA 931
10/1/18 FOLFOX + Vectibix planned 12 rounds
12/12/18 CT scan showed typhlitis (7 days in hospital) but largest met down to 5 cm. Chemo holiday.
12/26/18 CEA 4.6
1/14/18 Resume chemo (#6-8)
3/27/19 HAI pump placement / colon resection
4/8/19 Resume chemo (#9-19) FOLFOX (no OX) + Vectibix
5/20/19 CEA 1.3
7/19/19 1st liver resection
10/16/19 2nd liver resection

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Sat Sep 28, 2019 1:31 pm

ginabeewell wrote:
It took six or seven weeks off chemo before my skin was approaching normal post-Vectibix. I would think he would start to see improvement in another week or two, but it does take a LONG time to get the impact of the stuff out of your system.

It is truly the worst drug, I feel for him. My latest side effect is rash that has broken out on the INSIDE of my eyelids. It's like, seriously??


Oh man Gina, that sounds miserable!! Yeah my poor boyfriend, his face is just covered in tiny little cysts that pop and leak :cry: I really hope it clears up soon. I did some googling which is usually a bad idea, but it kind of almost looks like shingles. I'm sure it's not, but man our bodies have weird ways of coping with chemo and targeted therapies. :roll:
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Sat Sep 28, 2019 1:33 pm

Gravelyguy wrote:My rash lasted quite a while after finishing that part of my chemo. Give it another week or two and he will start feeling and looking better. I had mouth sores for about 2 months after, but can't quite remember how long until the skin rash started going away.

Dave


Damn, I really hope some day cancer treatment will be developed to a point where it's easier on the patient. 2 months of mouth sores is rough! I hope his face heals soon - it seems to be getting worse. Now his nose is red too, with little blisters. Poor guy.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!

Gravelyguy
Posts: 229
Joined: Thu Jul 05, 2018 6:03 pm

Re: Vectibix side effects

Postby Gravelyguy » Sat Sep 28, 2019 7:51 pm

The good news is all that rash means it is doing its thing on those tumors!
6/17 dx mRC t3n1m1 very low rectal tumor 2 liver Mets 1.3 cm and .9 cm

6/17 begin 4 rounds Folfox w/Vectibix
9/17 short course radiation
10/17 rectal and liver resection LAR with coloanal anastomosis (no rectum left)
11/17-3/18 8 rounds Folfox
6/18 still NED!! Takedown
8/28/18 still NED! CEA .8 new low for me
10/18/18 colonoscopy clear
12/12/18 clear scans, CEA .9 still NED!
6/11/19 clear scans CEA 1.0

Zod
Posts: 20
Joined: Wed Aug 28, 2019 2:56 pm
Facebook Username: Zod

Re: Vectibix side effects

Postby Zod » Mon Sep 30, 2019 4:56 pm

I did some googling which is usually a bad idea

"Google is a good mortician but a bad doctor." - FWIW

AlexandraZ
Posts: 48
Joined: Fri Aug 23, 2019 8:25 am

Re: Vectibix side effects

Postby AlexandraZ » Fri Oct 04, 2019 5:03 am

Zod wrote:
I did some googling which is usually a bad idea

"Google is a good mortician but a bad doctor." - FWIW


Absolutely!! Google is the worst and the most pessimistic doctor on the planet.
Boyfriend 28yo dx February 2019, CEA 70,480
Stage 4 CRC with multiple mets to liver & lungs
KRAS, NRAS, BRAF wild type, MSS
12x FOLFIRI + Vectibix
September 2019 CEA 210, 60% reduction in size, chemo break!


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