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Joined: Jun 2007
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Well, I'm about to go into my 3rd week and no side effects as of yet. Not even the rash or dry skin. Just this dry mouth, throat and burnng tongue.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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Jim
that is good news. There are rumors around heard from people that when you get a rash that "it" is working..... I find this difficult to believe but have no fist hand data on this.

Sue,
Im my case the acute reaction developed within 10-15 minutes of the start of the infusion. I only had about a 10th of the dose, anything more would have been too much. (in retrospect it makes for a good story, foamy mouth and all that!!!)

M





Last edited by Markus; 02-07-2008 03:55 PM.

Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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Our doctor actually told us that the rash is a good sign. No rash yet but my hubby is really tired. Also, it seems that there is yet another lump in his neck. His last surgery was on Jan. 16th- this poor guy can't seem to get a break. We go to surgeon on Mon. to check the new lump. Sue


cg to husband, 48 Stage 1V head and neck SCC. First surgery 9/07. Radiation and several rounds of chemo followed. Mets to chest and lungs. "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Went home to God on February 22, 2009.
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Markus,, the Dr checked my mouth this morning after rads, He said it is working just fine. That did ease my mind a little.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
Joined: May 2007
Posts: 666
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Sometimes it is best to let sleeping dogs be... however.
Regarding the statement that the rash is a good sign.....
Consider that the rash is actually very common, it occurs in 76-88% (10% severe) of the patients.
Clearly, SOMETHING is happening, the question is what is happening actually related to Erbitux being effective (i.e. inhibit growth of EGFR+ tumor cells) or is it an unrelated side effect which then since it almost universally happens is called "good". The rash occurs in places that have nothing to do with cancer and it would also occur in people that do not have cancer.

It is clear that Erbitux is effective under the right conditions, especially in combination with radiation. Thankfully, the really severe adverse effects are rare and most likely happen very quickly and generally during the first infusion.

M

http://packageinserts.bms.com/pi/pi_erbitux.pdf




Partial glossectomy (25%) anterior tongue. 4/6/07/. IMRT start @5/24/07 (3x) Erbitux start/end@ 5/24/07. IMRT wider field (30x) start 6/5/07. Weekly cisplatin (2x30mg/m2), then weekly carbo- (5x180mg/m2). End of Tx 19 July 07.
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No long term experience yet but Erbitux magnified the effects of radiation burn but appears to have worked well enough to avoid a neck dissection. My advice is to watch carefully the skin on the face and neck and really bug the care providers about radiation gel and creams. I ended up having to use Vigilon second skin burn dressings as my reactions were so severe . However, the docs at Georgetown University's Lombardi Cancer Center also repeated the observation that their patients with the worst rashes and reactions had the best clinical response. So far so good with recovery


65 yr Old Frack
Stage IV BOT T3N2M0 HPV 16+
2007:72GY IMRT(40) 8 ERBITUX No PEG
2008:CANCER BACK Salvage Surgery
25GY-CyberKnife(5) 3 Carboplatin
Apaghia /G button
2012: CANCER BACK -left tonsilar fossa
40GY-CyberKnife(5) 3 Carboplatin

Passed away 4-29-13
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Charm2017,
I had the same response to the Erbitux, Really cooked my jaw line, throat and upper chest area. And I had the same response from the Dr's...the more bigger the reaction the better its working. I too am ok as of now...1 clean PETS and two atta boys from the ENT.


Stage 4b BOT and node on right of throat. did 38 trips of TOMO PEG tube,Cysplatin,Taxotere & 5fu 1st 4th and 7th week, changed to Erbitux for the last 4 weeks. 1st PETS since end of TX..CLEAR 6mos out and 2 nodes are hot. Bilateral neck dissection on 10/31/08. Clear Scan 3/31/09 & 8/02/2010
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Sue - I just wanted to send you happy thoughts and prayers today. I've been so caught up in my own little world with the "newness" of all this that I didn't stop to notice who else was currently going through tough stuff too!! I hope the Erbitux works great and your hubby doesn't have another fever/chills experience.


Michelle, CG to husband (45), DX 2/08 Stage IVa Adenocarcinoma Salivary Gland (T2N2bMO)
Parotidectomy & ND 2/08, Tumor margins not clear, 4 of 30 nodes positve for cancer,
TX IMRT 39x, cisplatin 7x (completed 5/1/08),
PEG (4/22 - 7/9), No port. Currently in remission!

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I am on Erbitux along with 2 other chemo drugs. I have the rash on my face, nose and on each side of my nose. Looks like a lot of pimples, 16 again I guess. I did not know that the rash meant the treatment was working, good, fill my whole face with it!!
Con


con
con #71864 03-24-2008 01:41 PM
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Markus, I should have posted sooner. I have the "ACNE" look and the tough dry skin. It's beginning to clear up and I am starting to look more like my old self. Still ugly, but look much better. LOL...Now for some teeth someday and heck, maybe I can mbe an OC add. LOL I think the worst part of it was where the Rad mask covered from the nose down over the chin. My tongue still burns like fire,even with water. Hopefully this will ease up soon too.


Since posting this. UPMC, Pittsburgh, Oct 2011 until Jan. I averaged about 2 to 3 surgeries a week there. w Can't have jaw made as bone is deteroriating steaily that is left in jaw. Mersa is to blame. Feeding tube . Had trach for 4mos. Got it out April.
--- Passed away 5/14/14, will be greatly missed by everyone here
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