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#182300 06-09-2014 02:08 PM
Joined: Jun 2014
Posts: 56
Estelle Offline OP
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Sorry for the second post.

I've found some pretty compelling research, not least, in The Lancet, demonstrating VERY much improved survival when Cetuximab is added to radiotherapy.

I had radical surgery plus radio, but no chemo.

Cetuximab - that's "chemo" yes??

Why wasn't I offered it? Would it help? *I want to live*


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
Estelle #182301 06-09-2014 02:55 PM
Joined: Jun 2007
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Cetuximab is more commonly known around here as Erbitux. Yes, it is chemo. Its up to your treatment team what your individual case was offered. Thats why is always best to have a treatment facility which uses a team based approach.

Your treatments have finished. All any of us can do is find the very best medical professionals and treatment facility and go with it. Since its after the fact, there isnt any going back and redoing what treatments were given. Second guessing wont change anything. It will just add unneeded stress.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Estelle #182304 06-09-2014 03:55 PM
Joined: Jul 2012
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It's considered a targeted therapy, an EGFR monoclonal antibody, but is still "referred " to as chemo sometimes, I do, just to save explaining. It's been around for a while, since the early 90's for colon cancer, but didn't get approval by the FDA, and stocks were dumped by Imclone big wigs, and reason why Martha Stewart went to jail for insider trading, but it had geen since was taken over, and approved, and approved for metastic HNC, and later for first line therapy. I had it in 2012 along with Taxotere. Its doesnt work in about 5% of HNC patients, but there is no assay, unlike colon/rectal, there is, and doesn't work in 40% of colon cancers who have a muted KRAS protein. The main side effect is the facial rash, which is consiered the drug to the to be working, and rarely, is an allergic reaction, cardiac arrest, which can be deadly. There is an ongoing clinical trails with Erbitux vs Cisplatin that is not completed yet. You can use the search to see the previous discussions, abstracts, some which I posted. I've seen some that say its just ad good as cisplatiin, and some, maybe not.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Estelle #182305 06-09-2014 04:39 PM
Joined: Jun 2014
Posts: 56
Estelle Offline OP
"OCF across the pond"
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Thanks Christine and Paul

Paul - I've been trying to read up on it too. The NICE Guidelines/Care Pathway (over here in England) do recommend it, but when platinum therapy isn't suitable. Seems like my team felt I didn't need chemotherapy. I am in clinic on Wednesday and I'm going to ask them about it, EGFR and KRAS. I don't know if they've tested for it, or if they will. I just keep seeing an increase in survival of around the 20% mark. From where I'm sitting, there's a MASSIVE difference between 56% and 81%.


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
Estelle #182306 06-09-2014 05:16 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
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There is no assay for it in HNC, but ask. I can't have many chemo's anymore, especially Cisplatin, and just finished Carboplatin, Protons in January, and that was easier than any other chemo, and Erbitux, at least for me. I've seen the numbers, but every trial, study may have different ones, some contradicting one another, and your doctors will know best. I noted on your signature you completed radiation in February or March? Is the Erbitux for maintenance without radiation? They were thinking about doing that for me, and that is different than first line treatment, but is also used as first line treatment, but cisplatin is preferred. They also use another targeted therapy, Tarceva, for maintenance, and chemoprevention, but found out it didn't work, and my oncologists said, no.

http://jco.ascopubs.org/content/early/2012/11/30/JCO.2012.46.9049

Good luck.


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Estelle #182326 06-10-2014 08:03 AM
Joined: Dec 2010
Posts: 5,260
Likes: 3
"OCF Canuck"
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Hopefully your drs made a well informed and educated decision to not include chemo - normally they go hand in hand (rads and chemo) and for someone who likely had non HPV chemo it does - apparently up the odds.

At this point it is a non issue as you're done. Hugs and feel better...


Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
Estelle #182400 06-12-2014 02:10 PM
Joined: Jun 2014
Posts: 56
Estelle Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
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"OCF across the pond"
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Joined: Jun 2014
Posts: 56
Had a long chat with my consultant. He said that the oncologist would definitely have given me either Cisplatin or Cetuximab, had the pathology warranted it. However, it was felt not to be needed. I do trust their decision, even though the worrying part of me wonder if I should have had it. I have to trust their superior knowledge. I've been under this team since the start, nearly 3 years ago, and I know they would never, ever cut corners.


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.
Estelle #182408 06-12-2014 03:25 PM
Joined: Jul 2012
Posts: 3,267
Likes: 1
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Jul 2012
Posts: 3,267
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Thanks for clarifying. I was thinking the Erbitux was for up-coming treatment. I had radiation alone my first round, but for different reasons, I didn't have chemo or a targeted therapy with it, was oropharyngeal cancer too, but both can be treated with surgery and or radiation alone depending on different factors. Sounds like you're in good hands.

Good luck


10/09 T1N2bM0 Tonsil
11/09 Taxo Cisp 5-FU, 6 Months Hosp
01/11 35 IMRT 70Gy 7 Wks
06/11 30 HBO
08/11 RND PNI
06/12 SND PNI LVI
08/12 RND Pec Flap IORT 12 Gy
10/12 25 IMRT 50Gy 6 Wks Taxo Erbitux
10/13 SND
10/13 TBO/Angiograph
10/13 RND Carotid Remove IORT 10Gy PNI
12/13 25 Protons 50Gy 6 Wks Carbo
11/14 All Teeth Extract 30 HBO
03/15 Sequestromy Buccal Flap ORN
09/16 Mandibulectomy Fib Flap Sternotomy
04/17 Regraft hypergranulation Donor Site
06/17 Heart Attack Stent
02/19 Finally Cancer Free Took 10 yrs






Estelle #182410 06-12-2014 11:14 PM
Joined: Jun 2014
Posts: 56
Estelle Offline OP
"OCF across the pond"
Supporting Member (50+ posts)
OP Offline
"OCF across the pond"
Supporting Member (50+ posts)

Joined: Jun 2014
Posts: 56
He told me Cetuximab is to sensitise you more to radiotherapy.


Mar 99 white patch tongue
Dec 11 white patch changed shape. biopsy neg
Sep 13 white patch ulcerated. Biopsy
Nov 13 diag Tongue SCC T2N2BM0 poorly Differ.
Dec 13 Hemigloss. neck dissect.Trach.Caldwell Luc (suspect cysts inside face, neg), teeth out. forearm flap, abdo graft
Feb 14 PEG tube
Feb/Mar 14. 30 x radio 60gy Grade 3 Mucositis, burns, hair loss, very ill. Nerve damage ear neck shoulder
Jun 14 *now* PEG out. Have lost 98 lbs in 1 yr. Anorexia. Dysphagia, liquids only. Dysphasia. Fatigue.

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