#76368 07-01-2008 04:53 PM | Joined: May 2008 Posts: 24 Member | OP  Member
Joined: May 2008 Posts: 24 | Hello All,
My husband Kyle is currently in his second round of this fight with oral cancer. I want to be prepared if we are told sometime that there is nothing more they can do. We did ask our Dr. about clinic trials and he suggested we research Memorial Sloan, MD Anderson and John Hopkins. He said most clinic trials do not work but it�s something to try if we get to that point.
When is this cancer so far that they can�t do anymore? Are there any medications or procedures being done in other countries that aren�t approved yet in the U.S.? I want to research and be prepared with a �plan C� if need be. I have read past comments on this board regarding homeopathic remedies so I hate to even ask but I will. Any luck with anything? My husband turned 43 last week and we have a 2 and 3 year old. He is going to fight this as long as possible. Any advice would be greatly appreciated.
Sincerely, Tamara
03/07 - tongue tumor removed, chemo/rad � lymph nodes clear
06/08 � part of tongue, base of mouth, left jaw, muscle/skin left neck area removed, 2 of 12 lymph nodes positive.
Radiation/chemo � may start 1-2 weeks (see Dr. tomorrow)
Last edited by KyleS; 07-01-2008 04:54 PM.
Kyle - 43 years old. Non smoker, casual drinker.
03/07-Tumor removed in tongue, chemo/rad
06/08-Tumor removed in base of mouth, left jaw removed, part of skin on neck - followed w/chemo/rad.
10/08-New tumor already growing.
| | | | | 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 |
Tamara:
Welcome to OCF. You will find many caring, knowledgeable people here that will help you thru this hard time. Im sorry your husband is going thru this again.
I dont have answers to your questions about alternative cures. I have only been treated with chemo/rad/surgery for my 2 rounds of OC.
Good luck with your appointment tomorrow.
Christine
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: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,918 Likes: 66 | I agree that contacting the major NCI cancer centers will give you valuable info. Each as a clinical trials coordinator, and each has access to different trials. On the "Other Resources" link from the main entry OCF site page, there is a clinical trials search engine link that will take you to the main government site for locating trials. http://www.oralcancerfoundation.org/resources/index.htm#clinical It is a long process to sort though all the possibilities that it finds, most any given patient (because of their unique needs) will not qualify for, but I wanted you to know that resource was there. Remember that clinical trials are closed to many people that do not fit into the very specific parameters of that trial. For instance, they may only want people of a certain age, a certain staging, that have had one treatment like radiation but not another. It can get a bit frustrating, so the trail coordinators are a good first start. Let's hope that things do not go this far.
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant.
| | | | | 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 | Tamara,
You are to be commended for being so diligent and your husband is blessed to have you in his team. Don't give up.
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.
| | | | | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Feb 2005 Posts: 2,019 | Tamara, Good luck with finding a clinical trial but I also hope that things don't go that far and his current treatment is the end of it.
Nelie
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
| | | | | 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 was in a trail at Ohio State Cancer center, but had to drop out . I haven't been back there since I had rads , chemo, and implants in this area at a comp. camcer center. I hope the study was successful.
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
| | |
| Forums23 Topics18,250 Posts197,142 Members13,324 | | Most Online1,788
Jan 23rd, 2025 | | |
|
