#75941 06-19-2008 06:20 PM | Joined: Jun 2008 Posts: 3 Member | OP  Member
Joined: Jun 2008 Posts: 3 | Keep me in your prayers, folks. After the typically brutal treatment combination of chemo and radiation that we all get, and I received last Oct-Dec, my recovery was coming along pretty well. Slowly, of course, but able to eat more and more often, saliva was returning, strength slowly returning, able to work 25 hrs a week, basically doing OK. Then the headaches started, my sore throat returned with a vengeance... and now my latest PET scan from June 3rd shows a whole bunch of new cancer. Drat! After all this successful treatment without surgery too. Original SCC was in base of tongue with 2 inflamed lymph nodes. That's all gone, and I must deal with it in my skull bones above and behind the left ear, it's in the vertabrae of my neck and spine and of course it's invaded my lungs as well. No wonder I have a sore throat and headaches, huh? Pretty persistent too. Now the dr wants me to undergo mild radiation for 20 days, simply to knock the stuff back so I can bear it without being so doped up on narcotics. But he said he's not even going to recommend chemo because of the detrimental side effects. He was brutally honest, but knowing me as he does, he figured he wasn't going to sugar-coat my condition. And I appreciate that, to be sure. Better to have accurate bad news than inaccurate glossed-over good news. At least that's how I see it. Anyway, the prognosis is not too bright, but we're going to make the best of it. Feel free to reply or send me an email to [email protected] I may be down, but I'm not out.
Diagnosed SCC Sept 07, Stage 4, BOT & 2 lymph nodes. Chemo Tx was Taxol + Carboplatin X 35, Rad Tx was Tomoscopy X 35, Oct-Dec 07. Declared cancer-free Mar 08 with no surgery needed. June 2008 PET scan reveals recurrences in skull, spine & lung. Prognosis is terminal.
| | | | | Joined: Jan 2008 Posts: 706 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jan 2008 Posts: 706 | I'm saying a prayer for you. My husband was in the middle of chemo and radiation when they found more positive nodes in his neck and on his lung. The cancer on his lung was from the floor of his mouth which was the original site-so distant metastasis. After 2 months of Erbitux, they found the cancer in his chest had gotten worse and he had a recurrance on base of tongue. No more radiation can be done so now he has had 8 treatments of Taxotere. Tomorrow will be a PET to see if THIS has worked. So we are kind of where you are. Trying to make the best of it. 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 2008 Posts: 3 Member | | OP Member
Joined: Jun 2008 Posts: 3 | Oops, forgot to post my new signature. Here it is...
Diagnosed SCC Sept 07, Stage 4, BOT & 2 lymph nodes. Chemo Tx was Taxol + Carboplatin X 35, Rad Tx was Tomoscopy X 35, Oct-Dec 07. Declared cancer-free Mar 08 with no surgery needed. June 2008 PET scan reveals recurrences in skull, spine & lung. Prognosis is terminal.
| | | | | 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 |
Tom:
Im sorry to hear of your bad news. I too went thru chemo and radiation was declared cancer free and 3 months later its back. For me, it was only a spot on the inside of my cheek which was surgically removed. Keep up the good attitude you have, it can help you pull thru this. I will keep you in my prayers.
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 | Tom,
Hang tough and I'm hoping for something that will change all the negatives.
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: Oct 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: Oct 2007 Posts: 104 | Tom,
So sorry to hear your bad news. I went through this with my husband last Dec. Please get connected with hospice and keep your symptoms controlled. Your days may be numbered but hospice will help make them the best they can be. I will be thinking of you and wish you strength and courage to live each day.
Caregiver to husband Dx. Stage 4 SCC of gingiva with 3 nodes pos. Partial mandiblectomy with bone graft from iliac crest Dec. 2006. IMRT x30, Cisplatin x3. Completed Tx. March 15, 2007. Osteonecrosis & removal of graft & plate Oct. 2007. Recurrence of SCC Dec. 2007. Deceased Jan. 17, 2008.
| | | | | Joined: Apr 2005 Posts: 2,219 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Apr 2005 Posts: 2,219 | Tom,
I'm sorry to hear the bad news. I get the feeling from the title of your thread "...or is it?" and the last thing you wrote..."but I'm not out", that you still have some fight in you.
Have you considered another opinion? Are you being treated in a Comprehensive Cancer Center, with a team of doctors and the opportunity for several heads being put together? There may be some other options out there for you.
Please keep us posted and good luck.
Jerry
Jerry
Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.
"Whatever doesn't kill me, makes me stronger"
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