| | Joined: Aug 2013 Posts: 6 Member | OP  Member
Joined: Aug 2013 Posts: 6 | Hi
I am new to this forum. But unfortunately not cancer.
This is my second go around with cancer stage 4 both times. My most recent is tongue cancer, I found a lump on my tongue and since I had radiation for throat cancer the first time that was out. Surgery was the answer.
On June 24th I had surgery for 17 hours. 70 percent of my tongue was replaced, the doctors took out a 3.8 cm lump. Then by taking blood vessels and skin from my fore arm, made a new tongue.
I was unconscious for 8 days and woke up literally July 2nd. I lost 8 days in Trauma ICU. I proceeded to stay in the hospital a total of 28 days. During that hospital stay the doctors told me that the cancer was so aggressive (it was tracking the central nervous system through the blood vessels} that they need to radiate me and chemo. Followed by robo cyber radioactive radiation.
This will start next week for 6 weeks, then a week off then the robo deal.
I am currently taking speech and swallow therapy in house. My speech is very sketchy, but I do answer the phone, and practice on all the telemarketers. So I have that going for me, which is nice.
I feel like a burden to my family and want this to be over, but I know I am no where near the finish line. Just starting.
Thanks for reading
Craig
3/2008 D/w Stage 4 throat cancer
5/23/2008 Surgery hospital 2 days
6/2008-8/2008 rad. and chemo
3/2013 diag w/ s 4 tongue cancer
6/24/2013 3.8 cm lump repld 70% of tongue j-peg feed tube
6/24/2013-07/22/2013 hosp. 7/22/2013 present hm nurse swallow spec speech thphy
09/03/2013 start rad and chemo
11/08/2013 finished 5 weeks of Radiation 3 chemo treatments and 1 week of Cyber Radiation...mouth and tongue infected and swollen
| | | | | 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 | Sorry for your recurrence.
Glad you found a use for telemarketers!
Welcome to this site.
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: 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! Im glad you have found the forum to help you with guidance, info and support. You have been thru alot already but it sounds like you have a long road still ahead of you. We will be here to help support you with this.
Best wishes!
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: Dec 2010 Posts: 5,264 Likes: 5 "OCF Canuck" Patient Advocate (old timer, 2000 posts) | | "OCF Canuck" Patient Advocate (old timer, 2000 posts)
Joined: Dec 2010 Posts: 5,264 Likes: 5 | Hey there - I had about 40 percent of my tongue removed - same surgery with a replacement. Mine was 14 hours however the did not keep me unconscious for that long - I was only out overnight. you will learn to speak again and swallow. It may never be 100 parent but we have people here who've had total glossectomies and can speak and eat - it takes time patience and diligence. You will get there, be kind to yourself, and your family I am certain, would do all they can because they love you, you are not a burden. I had peri neural involvement so I too had rads and chemo. This cancer can be aggressive and the radiation as.you know isn't fun - at this point work your ass of to get yourself in fighting shape. You can do it. Don't let cancer get the better of you. Get as much nutrition s you can now. Hugs.
Cheryl : Irritation - 2004 BX: 6/2008 : Inflam. BX: 12/10, DX: 12/10 : SCC - LS tongue well dif. T2N1M0. 2/11 hemigloss + recon. : PND - 40 nodes - 39 clear. 3/11 - 5/11 IMRT 33 + cis x2, PEG 3/28/11 - 5/19/11 3 head, 2 chest scans - clear(fingers crossed) HPV-, No smoke, drink, or drugs, Vegan
| | | | | Joined: Jun 2013 Posts: 262 Gold Member (200+ posts) | | Gold Member (200+ posts)
Joined: Jun 2013 Posts: 262 | Hi Craig -- Sorry you're facing round 2. Your surgery was quite an ordeal -- you obviously have great strength that's gonna serve you well heading into the next phase. I've never heard of robo cyber radioactive radiation, sounds as though you've got some advanced docs wheeling out the latest toys for you, too. Please don't imagine that you're a burden to anyone -- chances are that your fighting spirit runs in the family.
<<<Hugs>>>
53
T3N2aM0 HPV+
5/26/13 discovered painless superball-sized lymph node in neck
6/26/13 DX SCC R palatine tonsil
7/16/13 TORS tonsillectomy & selective ND, mets to 2 nodes
9/3/13 Cisplatin and rads begin, tolerated 1.5 of 3 planned chemo doses
10/16/13 Treatment ends
Dec 13 Ulcer appears at surgery site
Jan 17 Biopsy -- no cancer!
Feb 17 CT/PET Scan lights up tonsil bed & nasal cavity, docs say probably inflammation, don't panic, rescan when ulcer subsides
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