| | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | OP  Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Markus, Thanks for responding. I am reading all I can about Erbitux just in case it is mentioned for my husband. I was sorry to read about your anaphylactic response to it. Very glad you were being watched closely! That must have been a frightening experience. Still unsure about more IMRT also. I hate for Ron to have to go through all of it again but from what I have read, I think chemo works better when used with radiation (?). So as hard as it will be, I kind of hope he will do both again. We just want it gone! Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | My husband had the Erbitux after radiation and Cisplatin together did not stop the spread into his lungs. The Erbitux gave him a horrible rash and splitting of his fingers and toes. Unfortunately it did not work for him. However, we have a friend who has had a recurrance after several years and it is working like a charm for him. Good Luck! 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.
| | | | | Joined: May 2007 Posts: 666 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2007 Posts: 666 | Hi Lori, to be sure the anaphylactic reaction is quite rare and can be caught very early on if somebody watches. The majority of the people (>80%) on Erbitux get a rash (of varying severity). Chemo agents enhance the effects of the radiation, this has been shown for platin compounds and I believe also for Erbitux. Both rad and chemo kill cancer cells and the idea is that the combination provides the extra punch to cause these cells to pack up an die. In addition to the local effect chemo also has some distant action. Markus Here is some more info on Erbitux. http://www.fda.gov/cder/foi/label/2004/125084lbl.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.
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Sue, I'm sorry the Erbitux didn't work for your husband. Thanks for your kind words. How is your husband's trial going? Hope all is well. Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Aug 2008 Posts: 96 Supporting Member (50+ posts) | | OP Supporting Member (50+ posts)
Joined: Aug 2008 Posts: 96 | Hi Markus, Thanks for the link to the Erbitux info. Have a lot of reading to do. Whatever it takes to make the buggers pack up and die! Stay well, Lori
Lori, cg to H Ron, age 56.
Stage IV Oral SCC-T1N2. Tongue resected and right ND 8/05. Teeth removed, PORT, PEG, IMRT x33, Cisplatin x3. Tx ended 10/05.
Recurrence 7/08 Stage IV. Surgery 8/30/08.
2nd recur. 11/08. 2nd surgery 2/2/09.
3rd recur. 4/9/09. Erbitux wkly. 5/09-?
Ron died 6/6/09.
Lori also passed away 8/20/11, colon cancer
| | | | | Joined: Sep 2008 Posts: 489 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Sep 2008 Posts: 489 | Lori,
So sorry for the recurrence - once should really be enough. My story is similar to your husband's. Diagnosed in 2006 with floor of mouth cancer. Had surgery to remove it and a skin graft from my left thigh. I went through radiation with no troubles and a positive attitude that all of the nurses just loved. Whne they see me cry now they put their arms around me and I am sure that they wonder where that smiling girl is.
In June this year I was diangosed with recurrent floor of mouth cancer, tongue and possible mandibel. My surgery is scheduled for 9/25 and I will start a blog this week so that my friends can stay up-to-date, Possilby you would like me to e-mail the blog address to you after you see what type of surgery I am having if it would help you and your husband,
They plan to remove the left half of my tongue and replace it with skin and arteries taken from my right forearm. I developed blood clots in the left arm when they put my port in so it can not be used. They plan to try to take only the inside of my mandibel, but could have to take it all. The plastic surgeon says that I am not a candidate for the replacment with the bones from my feet due to poor circulation. But they may have to do it and hope for the best. I had the radical neck dissection with my first surgery in 2006 and the nodes are still clear.
Well in a nutshell that is about it. If you think keeping up with my progress would help you and your husband just e-mail be privately and I will send you a link to the blog,
48
SCC Floor of Mouth 7/06
9/06 Surgery, bilateral neck dissection, 58 nodes clear PT2pN0pMx
35 rad 2006
Recurred 6/08, 1 Carboplatin, 1 Cisplatin
Surgery 9/08 - Total glossectomy, free flap from pectoral muscle, left mandible replaced using fibula
35 IMRT & Erbitux 11/08
4/15/09 recurrence
6/1/09 passed away, rest in peace
| | | | | Joined: Nov 2005 Posts: 1,128 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Nov 2005 Posts: 1,128 | Patty, what I did when I went in for my free flap was set up a Yahoo email address, transferred addresses of all the folks I wanted to keep informed to it and then had a close friend use the email to update everyone.
I figured that I might not be up to it at first, which is exactly when everyone wants info, and it turned out that I was right. Everyone was kept informed, I could later read their comments and it allowed my friend to be helpful.
Age 67 1/2
Ventral Tongue SCC T2N0M0G1 10/05
Anterior Tongue SCC T2N0M0G2 6/08
Base of Tongue SCC T2N0M0G2 12/08
Three partial glossectomy (10/05,11/05,6/08), PEG, 37 XRT 66.6 Gy 1/06
Neck dissection, trach, PEG & forearm free flap (6/08)
Total glossectomy, trach, PEG & thigh free flap (12/08)
On August 21, 2010 at 9:20 am, Pete went off to play with the ratties in the sky.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 |
Lori:
Good luck with your husbands surgery next week. Hope it goes smoothly and he recovers quickly.
ChristineSCC 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  | | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | Lori-I'm keeping good thoughts for the both of you.
Stay strong!
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.
| | | | | Joined: Jun 2007 Posts: 5,260 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 5,260 | I had the Erbitux and rads at the same time. Really I didn't think it was that bad, but it was no picnic either. Give him my best and the best to you too Lori
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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