#99473 07-14-2009 08:12 PM | Joined: Jul 2009 Posts: 7 Member | OP  Member
Joined: Jul 2009 Posts: 7 | My Father has Oral Cancer, he has been battling it for about a year and a half now. The doctor's had to stop Chemo because it has been attacking his bone marrow... he has not had treatment in about 3 months now and the cancer is growing, and his body is weak because he cannot eat from all the radation (his mouth is fried), so he has a feeding tube. The doctors are saying that his only option is a clinical trail of IMC-A12 and Erbitux. Has anyone heard of these trail drugs or has experienced them first hand? Any feed back would be great, we are not sure if we should proceed with this treatment or not? The side effects listed are crazy.. I am very worried about my father, I am his caretaker as well. ANY feedback would be great. Thank you I am desperate here!!!
DAD68yrs old
Diagnosed Feb16 08
PEGTube March08
3chemo/35 Radation Treatments
All Clear Nov08
Diagnosed April09
Base of Tounge and 3 Nodules in lungs
2Chemo tretments/ Stopped Chemo due to Bone Marrow loss
June09-Sept09 IMCA12 Experimental Study
Sept09 Erbitux 2wks. Stopped
No treatment
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I am so sorry that you have to go through this. You came to the right place. You will find a lot of encouragement here. I wish I could answer your questions, but I am sure someone here can. Just know that this is an amazing place for support. Also a great place to rant and rave if you need to.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Jun 2009 Posts: 440 Platinum Member (300+ posts) | | Platinum Member (300+ posts)
Joined: Jun 2009 Posts: 440 | Rosemarie- I'm so sorry your dad is going through this. I am no help to you but I will keep your dad in my prayers. I wish you the best!
Dx 3/27/09 @ 28 years old with High Grade MEC T4N2M0
Elizabeth, 33, mother of 3 girls (4,7, &8yrs old)
3 rds of chemo(Carbo/Taxol)
Rt Mandibulectomy, rt fibular flap,& rt ND with trach, picc,& g-tube.
30 rds of rads with weekly cisplatin
SCANS ALL CLEAR!
OCF Regional Coordinator of San Antonio Walk
| | | | | Joined: Jul 2009 Posts: 7 Member | | OP Member
Joined: Jul 2009 Posts: 7 | Thank you so much for your kind words... it has been an emotional rollercoaster. I see on your profile that you are a survivor.. that is fantastic. My father considered surgery for the tumor on his tounge, but he went with radation instead. It is refreshing to see a good outcome. Thanks again
DAD68yrs old
Diagnosed Feb16 08
PEGTube March08
3chemo/35 Radation Treatments
All Clear Nov08
Diagnosed April09
Base of Tounge and 3 Nodules in lungs
2Chemo tretments/ Stopped Chemo due to Bone Marrow loss
June09-Sept09 IMCA12 Experimental Study
Sept09 Erbitux 2wks. Stopped
No treatment
| | | | | Joined: Jul 2009 Posts: 7 Member | | OP Member
Joined: Jul 2009 Posts: 7 | Thank you... I wish you all the best, and I will keep you in my prayers as well...
DAD68yrs old
Diagnosed Feb16 08
PEGTube March08
3chemo/35 Radation Treatments
All Clear Nov08
Diagnosed April09
Base of Tounge and 3 Nodules in lungs
2Chemo tretments/ Stopped Chemo due to Bone Marrow loss
June09-Sept09 IMCA12 Experimental Study
Sept09 Erbitux 2wks. Stopped
No treatment
| | | | | Joined: May 2009 Posts: 1,412 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: May 2009 Posts: 1,412 | I forgot to mention that I will be praying for you and your dad.
Angelia
31 at Dx.
DX: 4/30/09, 10/21/09 SCC on floor of mouth,
T1NOMO, T2N1M0
TX: 39 IMRT, 8 cisplatin 11/30/09
PET/CT: 11/03/09: Lymph node involvement
PEG/PORT: 11/09
TX end: 02/01/10
PET Scan: 04/05/10 clear
PEG Out: 06/21/10
Biopsy: 12/23/10: fibrosis
HBO: 01/04/11 - ORN
Baby girl born 11-30-12
| | | | | Joined: Apr 2009 Posts: 75 Supporting Member (50+ posts) | | Supporting Member (50+ posts)
Joined: Apr 2009 Posts: 75 | Rosemarie:
My dad has oral cancer as well. He just finished his treatments and hopefully it worked. You will find all the people here so nice and helpful. There are so many things that the doctors neglect to tell us. I would have been clueless but not for the forum. Someone here will surely get back to you with the info you want. You and your father will be in my thoughts and prayers.
Boston
Squamous cell / BOT with lymph node involvment, Stage 4, HIV-, cisplatin 3 weeks of 7, stopped due to kidney issues and neuropathy,35 radiation treatment started 5/6/09,started weekly erbitux on 6/2/09. Completed tx on 6/24/09, biopsy 8/11/09 clean, PET Scan 10/5/09 clear, PET Scan 6/11/10 clear
| | | | | Joined: Mar 2008 Posts: 3,082 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Mar 2008 Posts: 3,082 | Erbitux is supposed to be a "magic bullet". It did buy me one full year free from Cancer which was nice. It is certainly worth trying in my opinion. Good luck charm
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
| | | | | 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 | Rosemarie, Im sorry you are going thru this with your father. Im sure you both have endured a long rough road. Where has your father been treated? There are a couple members from your area. A year and a half is a very long time to go thru this terrible disease. I have heard of Erbitux, several people here have been on that. Please add a signature when you can to help us better answer your questions. Its located under the My Stuff tab in profiles. If you arent sure what to write, just check out some of the other members info. Also, take a couple minutes for yourself everyday to just take a deep breath. A caregivers job is a difficult one. Best of luck with everything for both you and your father.
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: Sep 2006 Posts: 8,311 Senior Patient Advocate Patient Advocate (old timer, 2000 posts) | | Senior Patient Advocate Patient Advocate (old timer, 2000 posts)
Joined: Sep 2006 Posts: 8,311 | Rosemarie, Sorry about your dad. Many on this site have had Erbitux (or Cetuximab) so hopefully they will respond to your questions as I didn't have that chemo. Here is a site concerning the trial you mentioned. http://oncore.mc.vanderbilt.edu:8180/sip/SIPControlServlet
David
Age 58 at Dx, HPV16+ SCC, Stage IV BOT+2 nodes, non smoker, casual drinker, exercise nut, Cisplatin x 3 & concurrent IMRT x 35,(70 Gy), no surgery, no Peg, Tx at Moffitt over Aug 06. Jun 07, back to riding my bike 100 miles a wk. Now doing 12 Spin classes and 60 outdoor miles per wk. Nov 13 completed Hilly Century ride for Cancer, 104 miles, 1st Place in my age group. Apr 2014 & 15, Spun for 9 straight hrs to raise $$ for YMCA's Livestrong Program. Certified Spin Instructor Jun 2014.
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