Irinotecan well tolerated + Erbitux rash

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LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Irinotecan well tolerated + Erbitux rash

Postby LMighty » Fri Apr 21, 2017 11:48 am

Hi everyone,

It has been 10 days since my mom's first injection of Irinotecan + Erbitux. I was expecting pretty bad side effects having heard many terrifying stories with Irinotecan but my mom is feeling just fine so far. She had no diarrhea at all. Except for flushing in the face (went away after two days) and very manageable nausea (relieved with zofran), there has been no noticeable side effects. So well tolerated that the Erbitux rash seems worst side effects of all.

My mom still have to endure this hoarse voice caused by the pleural effusion -- our onc decided not to do another pleural tap and let the fluid drain itself, assuming the chemo works.

I am wondering if there is any correlation between the efficacy and the side effects of chemo? I read somewhere that studies showed the more rash you get, the more effective Erbitux is.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Irinotecan well tolerated + Erbitux rash

Postby CRguy » Fri Apr 21, 2017 8:35 pm

Just a bump here ... BUTT
tho' I have not seen irrefutable proof of it ....
YAY us ... :shock:
generally those with bad skin reactions appear to be getting better responses to the drugs !
that has been the dialogue here for a while

IF it is workin' for U Mom...
IT BE workin' 4 YOU MOM !

I am concerned about the effusions tho' ...is she having any actual breathing problems ?
Is the hoarse voice a matter of her not having full lung capacity to speak ?

When my Dad had effusions our Docs and Oncs wanted to get that shit OUTTA there.
What the Doc wants .. and what your Mom NEEDS may be 2 different things.

PM me if you need to talk, BUTT I would push and enquire as to why "we don't take that fluid outta there ... ??? "
IF you need "doctor talk" to throw back at them = ME :twisted:
....and why we are all HERE !

Cheers and Harmony sista'
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Irinotecan well tolerated + Erbitux rash

Postby LMighty » Fri Apr 21, 2017 9:16 pm

Hi CRguy,

Thanks for your reply and suggestion. I do hope the new regimen works wonders.

The hoarse voice does stem from her lungs not having full capacity but it does not affect her too much for now. She only breathes a bit harder when walking fast or climbing stairs. In X-rays the effusion seems "mild" (~500 ml). My mom was very reluctant to go through the ordeal of doing another pleural tap. So we will wait for the fluid to go away if it is tolerable, the chemo is working and the onc approves. The idea still seems a bit scary to me though, having cancerous fluid in her lungs. It also seems to drain really slowly assuming the chemo is working...as the hoarse voice persists after first injection.

Another concern of mine is that our onc advise against doing a baseline CT scan for following my mom's condition. He said X-rays after each injection should be enough to access the effectiveness of the new regimen by looking at the amount of fluid. Maybe he wanted to save CT scan for after a few more injections.

As you know I am also seeking the possibility of treatment option other than chemo alone but will have to wait until after next PET scan which would be done earliest in July. Keeping fingers crossed that the new regimen eliminates those nasty things in the lung.

Thanks,
Lawrence
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Irinotecan well tolerated + Erbitux rash

Postby LMighty » Fri Apr 21, 2017 9:26 pm

Hi CRguy,

Sorry just one more thing. Did your dad hear crackles (clicking noises when breathing) when there was effusion? My mom hears them especially when lying on the left side. We asked our onc about it but he did not seem concerned at all.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Irinotecan well tolerated + Erbitux rash

Postby LMighty » Sat Apr 22, 2017 8:09 am

Update: I am contacting the two surgeons in charge of resection after my mom's stage I diagnosis five years ago for their opinion. Maybe a surgeon would have a different point of view from an oncologist. I hope this marks the start of our counter attack.
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace

User avatar
CRguy
Posts: 10473
Joined: Sun Feb 10, 2008 6:00 pm

Re: Irinotecan well tolerated + Erbitux rash

Postby CRguy » Sat Apr 22, 2017 4:15 pm

I will say what I've always said :
EACH specialty has their own strengths and weaknesses when dealing with things outta their specialty.
Take thoracic "well being issues" advice from a thoracic specialist not the Onc
and don't take chemo advice from a surgeon :shock: kind of a thing.

Dad did not notice or report audible "crackles"
his effusion was inside the thoracic cavity but outside of the actual pulmonary spaces inside the lungs.
IF Mom is hearing crackles and wheezes from her breathing there may be fluid / mucus somewhere in the air passages / lungs themselves, which are inside the lung tissue and not between the pleura and chest wall. A respiratory consult sounds like a good plan for her.

My Dad had a few pleuocenteses which he didn't enjoy but were better than having the fluid in there !

He also had a pigtail drain placed by a great interventional radiologist to resolve air and fluid after a bad chest drain removal by 2 butthead nurses.
The next time I was present and had arranged for the head thoracic care nurse to do it himself = no problems.

ALWAYS be vigilant and proactive, and it seems you are on that trajectory for Mom

Cheers and best wishes
CRguy
Caregiver x 4
Stage IV A rectal cancer/lung met
17 Year survivor
my life is an ongoing totally randomized UNcontrolled experiment with N=1 !
Review of my Journey so far

LMighty
Posts: 98
Joined: Sun Aug 28, 2016 6:16 am
Location: Hong Kong

Re: Irinotecan well tolerated + Erbitux rash

Postby LMighty » Sun Apr 23, 2017 4:37 am

Hi CRguy,

Thanks for your helpful advice!

So one of the surgeons checked my email last night. I am really grateful that he decided to call me today to give some insight. He said surgery for pleural cavity mets is "not impossible" but it is generally for debulking purpose. Pleural effusion implies that the cancer cells are "all over the place" so chemo remains the primary weapon. Surgery would be for localized and sizable tumour only, assuming the risk is worth taking.

I will see if i can talk to the other surgeon in the coming days. At least for now it puts my mind a bit at ease confirming there can be more options other than chemo alone.

Thanks,
Lawrence
Supporter to my mom (64 yr); KRAS wild type; MSS

2012: DX Stage I, rectal cancer; resection and colostomy
5/16: DX Stage III, mets found; right groin lymph node and soft tissue
5-6/16: Radiation + Xeloda
7/16: DX Stage IV, pleural effusion; cancer cells found in fluid
7-12/16: Xelox + Avastin X 6
1/17: Clean PET scan, NED
2/17: Pleural effusion; recurrence
4/17: Iri + Erb X 3
5/17: Ascites; Chemo failed
6/17: Keytruda X 1
7/17: TECENTRIQ (atezolizumab) + COTELLIC (cobimetinib)
9/17: At peace


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