| Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2010 Posts: 128 | hi i am new to this site, this site was recommended by a member from the CSN through American Cancer Society.. my father was DX with Stage 4 tongue/floor of mouth in February of this year. In March he did 2 rounds of induction chemo, then started his 35 rad treatments along with chemo three times during that time.. he commpleted his treatments in june and we had our first biopsies done in august and they came back clear! dad was on his road to recovery, so we thought :-(.. about 4 weeks ago he started experincing that awful pain in his mouth, which we were not sure if it was because of radiation or not.. so about a week and half ago ENT did biopsies of floor of mouth and sure enough it was back! so now ENT told us his only ooption is to have that surgery where hey will remove portion of lower jaw and replace that with musc le from stomache.. well they will put a plate in and cover the plate with skin from stomach....also remove 1/3 of his tongue, and do a radical neck dissection.. of course news was devasting as you all know but we were thankful to have an option..he said he thinks he can save base of tongue and voicebox. ENT also told us that if he hd to remove the base of tolngue that the voicebox would have to come out too.. has anyone ever heard of that?
any and all input wouild be great! and congrats to those survivors of this vicious disease!
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux.. Painfree and rested 6/19/12
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Hi Nicki - I'm so glad you found this site. It really is the very best place to be for the latest in information and compassionate caring from others who've had similar experiences. Sounds like your father has been through so much already and although my son's experience is not exactly the same as your father's, I'm sure someone will be along very soon with more direct experience and help for you. Until then, perhaps you could check the main OCF page at: http://oralcancerfoundation.org/ and the links that interest you so that you can be ready with whatever other questions you might think of.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2010 Posts: 128 | thank you so much Anne Marie for your response.. i am so sorry that your son had to go through this.. i could not imagine watching any of my children go through this.. your son is my age.. i am glad to hear that he is cancer free! he will be in my prayers.. thank you again for the info!
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux.. Painfree and rested 6/19/12
| | | | Joined: Nov 2006 Posts: 2,671 Patient Advocate (old timer, 2000 posts) | Patient Advocate (old timer, 2000 posts) Joined: Nov 2006 Posts: 2,671 | Something else you could do while you are waiting for more info is to go to the top of this page where it says "My Stuff" and scroll all the way down to the bottom and fill in any info on your Dad's experiences that you like so that others can more easily help you with specific information (see my signature line, below). Another thing you might include is your geographic location (about 1/2 way down the same "My Stuff" page) like maybe the State where your Dad is being treated. This is optional, tho' so don't feel like you have to identify this. Sometimes, other posters from the same area can recommend hospitals or doctors they've had good experiences with or in case you want a 2nd opinion on any treatment.
Anne-Marie CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)
| | | | Joined: Nov 2010 Posts: 128 Senior Member (100+ posts) | OP Senior Member (100+ posts) Joined: Nov 2010 Posts: 128 | Thank you! I just updated my info! great idea! thank you again...
Dad-55 yrs..2/2010-DX/March 2010-Induction Chemo/35Rads 7weeks concurrent with chemo once every 3weeks/6/2010-Treatments completed-October 2010-Recurrence/December 2010-salvage surgery/clear Margins/July 2011-recurrence/weekly Erbitux treatments-5/30/12, last erbitux.. Painfree and rested 6/19/12
| | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | "Above & Beyond" Member (500+ posts) Joined: Jul 2007 Posts: 939 | Nicki,
So sorry to hear of your Dad's recent recurrence diagnosis..I know you are devastated. Your Dad's age would also be good to put in the signature..helps all of us to help you.
There are a few posters on the board here that have been thru a similar surgery and can possibly fill you in on the details. In the meantime, read as much as you can both here and on the main site. It's a lot to absorb but knowledge is power in my opinion.
You will find strength here...we understand.
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997. DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0 TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5. TREATMENT END: 10/1/07 PEG OUT: 1/08 PORT OUT: 4/09 FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | 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 | Welcome to OCF. I have sent you a PM with the info you requested. I hope this will help you. 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: Nov 2010 Posts: 4 Member | Member Joined: Nov 2010 Posts: 4 | Hello and welcome to the forum. I hope you will enjoy our company and get some useful tips and information for yourself...  | | |
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